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PO2. Dementia care

Detailed programme and abstracts

PO2.1. A quality improvement framework for post-diagnostic support

MILLER Julie, RODRIGUEZ Cesar

We know from consulting with people with dementia, carers and practitioners that there is much variation in the quality of post diagnostic support (PDS) throughout Scotland. Whilst data on PDS is collected nationally until now there has been no mechanism for assuring the quality of the support. 

This new framework sets out a model of best practice for the delivery of PDS services. It informs people with dementia and their carers of what they can expect from high quality PDS and guides practitioners and managers through the quality criteria that supports service delivery. 

With the support of Alzheimer Scotland people with dementia, carers and family members were consulted to help identify the principle areas that underpin good quality PDS. These are: Practitioners; Pathways; Person-Centred and Participation.  The framework is then structured around the following personal outcomes for the person with dementia:

  • I am confident in the people who support me following my diagnosis
  • I experience high quality post-diagnostic support at the right time and at the right level for me
  • I am confident in the people who support me following my diagnosis
  • I know more about my dementia and have adjusted to my diagnosis
  • I feel listened to and am at the heart of decisions about me
  • I feel better about the future knowing I have made plans.

The overall aim of the framework is that people with dementia, families and carers have positive benefits from PDS and the quality and experience of PDS is improved through: 

  • Reducing variation in how services are delivered
  • Improving the experience of staff by ensuring they feel skilled and effective, and supported in their role.

The framework is now being tested in practice and any results from testing and further refinements to the framework will be ready for presentation by the conference dates.     

PO2.2. You are not alone: the rise of Italian self-help online groups

STELLA Eloisa, LEORIN Cristian

In 2014, approximately 1 million Italians were affected by dementia. Although, over the past 15 years, access to diagnostic services has grown significantly across the Country, the percentage of individuals accessing post-diagnostic care pathways and community-based services remains alarmingly low. Moreover, the large majority of services available are designed for older Italians with Alzheimer’s disease. As a result, individuals living with early onset dementia and/or non-Alzheimer’s types of dementia are often prevented from getting the support they need to cope with the impact of their illness.

Inspired by the good practices implemented by a number of formal and informal groups operating across the world (i.e. Dementia Alliance International, Dementia Mentors, ask patients with FTD? etc.), Association Novilunio has recently launched a new series of online self-help groups for people living with dementia and their family members. The groups meet bimonthly in video chat rooms and are led by a trained moderator that helps participants to make sense of their life through the lens of the illness, in a safe, non-judgmental and empowering virtual environment.

Each group is dedicated to a specific type of dementia (i.e. frontotemporal, Lewy body, Alzheimer’s etc.) and is designed to foster the exchange of advice, solidarity and friendship among group members who usually experience isolation, shame, and stigma in their local communities. From Sicily to Lombardy, group members learn they are not alone and that, together, can restore a realistic hope for a meaningful life beyond the diagnosis of dementia.

In addition to providing a general overview of the anthropology of dementia care in Italy, the poster will also highlight the socio-cultural aspects that have contributed to the creation of this innovative approach to self-help support, based on the combination of modern video and digital technologies with the power of shared compassion and resilience.

PO2.3. Quality improvement in UK memory services

HODGE Sophie, COPLAND Emma, CLARY Leanne

The Memory Services National Accreditation Programme in the UK has been running since 2009. Every 2 years’ findings from the participating services are analysed and national recommendations are made from the key findings. The most recent national report was published in November 2016 and found the following:

There continues to be a rise in the number of patients being seen by memory clinics. Average caseload has increased from 683 patients in 2013-14, to 819 patients in 2015-16.

The average number of staff working in a memory service has increased from 15 in 2013-14 to 18 in 2015-16.

The average waiting time from referral to assessment is 35 days.

Dementia diagnosis rates ranged from 26.2% - 83.3%.

100% of patients and carers said that memory service staff treated them with dignity and respect at all times.

91% of carers felt they had been given enough written information from the memory service.

76% of referrers have been given advice from memory services; 34% have been provided with training, and 42% outreach.

An average of 34% of patients had accessed psychosocial interventions in the past year.

90% of services are able to offer Cognitive Stimulation Therapy.

55% of carers said they had been offered an assessment of their needs.

An average of 9.5% of patients had registered their interest to participate in research.

Services who have completed more than 1 cycle of MSNAP are more likely than those only having completed 1 cycle to: have a written driving protocol in place; have conducted an audit on the prescription of antipsychotic medication within the last year, and have access to maintenance CST and cognitive rehabilitation.

PO2.4. Addressing the complexity of dementia - Competence Center Dementia Schleswig-Holstein

JACOBSEN Wienke

The Competence Center Dementia Schleswig-Holstein is a model project of the Alzheimer Association Schleswig Holstein e.V. which aims to improve the care structures of the state of Schleswig-Holstein for people with dementia and their relatives. This is done e.g. by the coordination of countrywide activities, the development of dementia friendly networks and communities or advisory functions. Besides of the quality assurance of existing support and care structures, innovative projects are being developed and implemented by the team of seven employees.

Some examples of good practice will be presented at the conference, such as the project “Farms as a place for people with dementia” which aims to close the lack of support in rural areas by e.g. the implementation of care groups on farms with the aim to strengthen the resources of people with dementia who might have grown up on a farm (e.g. participating in farm activities, walks). The project is currently receiving a lot of recognition (e.g. visit of the German Minister of Family and Social Affairs, diverse media contributions) and it will be evaluated by the University of Bremen.

Further projects that will be shortly presented are the “Online show flat for people with dementia” (www.demenz-musterwohnung.de), the cooperation with dentists to ensure the dental health of people with dementia and the widely recognised brochure “Religious services for people with dementia” in order to present the wide range of activities.

The Competence Center Dementia can be seen as nationwide lighthouse project in the field of dementia and it is partly financed by the Federal Ministry of Social Affairs, Health, Sciences and Equality and the health insurance companies and will be relaunched for another five-year period due to the recommendation of the successful passage of the Dementia Plan Schleswig-Holstein in March 2017.

PO2.5. Introducing a new role of dementia nurses in post-diagnostic support process for people living with dementia

WALEWSKA Karolina, HODGETTS Emma

The awareness of the potential health and economic savings creates a consistent pressure within NHS services in UK for timing diagnosis of dementia.

Clinical Commissioning Groups and consequently Essex University Partnership NHS Trust (EPUT) focus mainly on early diagnosis. While there is detailed guidance on referring, timescales for different stages of assessment and number targets, it is unclear what services should be available after diagnosis (PBR 18 weeks’ pathway). The post-diagnostic support stages lack clear guidance around content, especially in relation to non-pharmacological approaches. This is particularly challenging for people with non-treatable types of dementia (Mild Cognitive Impairment, Vascular Dementia).

There are new aspects of dementia nurses’ role involved in post diagnosis support such as more therapeutic psychosocial aspects of care which needs to be timely and delivered at a pace that is adjusted to the person living with dementia. It includes early identification of dementia, breaking the diagnosis to the person and their relatives, prescribing and reviewing medication, signposting to peer support groups, building a relationship with the person and relatives, and assisting them in different stages of dementia.

This poster presentation describes the essential need for a new model of the dementia nurse role and partnership working between services to ensure the unique needs of people living with dementia are met. In particular, collaboration between GP’s, hospital and care homes pathway through the Dementia Services has been developed for this population.

This joined up approach means that people living with dementia are less likely to get lost in the system, avoid hospital admission and being able to stay longer in their home environment. As a consequence of this project, EPUT is more able to equally address the complex psychosocial needs of people living with dementia.

PO2.6. The Com-mens feasibility study: rationale and study design

OLTHOF-NEFKENS Maria, DERKSEN Els, de SWART Bert, NIJHUIS-VAN DER SANDEN Maria, KALF Johanna

Background: Cognitive communication disorders are common in people with dementia (PwD), however well-designed logopedic interventions are scarce. Based on developmental work and qualitative analyses, we constructed a short term and practise-based logopedic intervention program to improve the experienced communication between people with mild to moderate dementia and their caregivers. To investigate the execution and effects of this program we developed the Com-mens feasibility study.

Methods: This study is a 18-month mixed-methods study, started January 2017, aiming to include 40 PwD-caregiver dyads. Inclusion criteria: (1) home-dwelling and diagnosed with mild to moderate dementia (CDR 1-2 or MMSE 10-23), (2) a healthy caregiver must be present, who participates in the intervention and all measurements. People with communication disorders due to previous stroke or severe problems with hearing or vision are excluded. The intervention consists of six one-hour sessions and is delivered by trained speech-language therapists. The focus of the intervention is on enhancing the interaction between the PwD and the caregiver and on reducing stress and frustration due to communication problems. Primary outcome measure is the newly developed and validated questionnaire for Experienced Communication in Dementia (ECD). Secondary outcome measures include quality of life and caregiver burden, measured with the TOPICS-MDS questionnaire. Measurements are done on five moments in time: before the intervention, after the intervention and follow-up measurements after 3, 6 and 9 months. On the second measurement, a semi-structured interview is conducted to gather qualitative data on the experiences of the dyads.

Conclusion: this is the first study to systematically evaluate a short logopedic intervention designed to improve functional communication between people with cognitive communications disorders based on dementia and their caregivers.

PO2.7. What can local Alzheimer Associations in Germany and Italy learn from each other? – A qualitative analysis of engagement fields, similarities and differences

LUISI Daniela, HÄMEL Kerstin

Background: Promoting good living conditions and community care for people with dementia has been acknowledged as priority- also in Italy and Germany which face similar challenges due to demographic changes. Local Alzheimer Associations (AA) have long been involved in fostering better services, support and social inclusion. A deeper analysis of experiences, identification of similarities and differences between AA in Italy and Germany may reveal winning strategies and mutual learning possibilities.

Methods: Ten semi structured interviews were conducted with coordinators of local and supra-regional AA in North-Rhine Westphalia (Germany), the Lombardy and the Emilia-Romagna region (Italy). Interview data was analyzed using qualitative content analysis.

Results: The experts from both samples describe their try to address care supply gaps, the increasing demand for support and to foster dementia-friendly communities through a broad variety of engagement fields. Similarities could be identified in their core tasks: Counselling, promotion of caregiver groups and awareness-raising/advocacy. Key features are their high flexibility and adaptability to needs, a rooting in self-help with a tendency to professionalization and wide intersectoral networks. A common challenge is to reach people at risk or in an early stage of dementia. The importance of awareness-raising/ advocacy is emphasized in both samples, but differs in terms of addressees, extent and low-threshold approach. While in the German sample e.g. increasing emphasis is put on low-threshold awareness-raising/ advocacy, in the Italian a greater focus on service provision is described. Differences show also up in access to and dealing with e.g. financial resources.

Conclusions: Mutual learning possibilities were identified regarding new engagement fields, alternative low-threshold approaches in awareness-raising to reach diverse social groups and strategies in resource management like volunteer- and fund-raising. Activities of awareness-raising/ advocacy should be intensified in order to promote social inclusion, reduce stigma, reach people at risk or in early stage of dementia.

PO2.8. The effect of psychodynamic group psychotherapy on personalities of mci and early ad patients by Rorschach test

AYSE Ozalkus Sahin

The aim of this study is to evaluate the changes that might take place in the personalities due to the changes in the ego functions of MCI and AD patients before and after the psychodynamic group psychotherapy.

Early Alzheimer (AD) and mild cognitive impaired (MCI) patients can benefit from social support group interventions such as education, peer and cognitive behavior therapy groups as they have positive affects by reducing depression, improving quality of life and self-esteem. Early AD patients don’t forget the words that have emotional meanings and MCI patients are able to register the new material in their memories which shows us that they might still be able to function to delay the progress of the illness.

Psychodynamic group psychotherapy is a way of thinking and linking the unconscious materials of the group members with conscious by understanding the sensations in the body, emotions, affects and thing representations. The main function is to link them with thoughts by verbalization using the free association technique. The ego is enriched with the integration of the repressed material thus it is supposed that there will be delay in its disintegration. Ego functions of this study is to let the participants be able to fulfill and understand their wishes and make plans within reality.

The sample consists of two MCI and one AD patients. Psychotherapy lasted for one year, twice a week. The participants were 65, 71 and 89 years old. Rorschach test is used as pre and post test.

It is hypothesized that ego functions of the MCI and AD patients will either improve or stay at the same level due to the effect of psychodynamic group psychotherapy and will not deteriorate.

PO2.9. Educating people with Frontotemporal Dementia

ALBERG SØRENSEN Kim Michael, KOUSGAARD HANSEN Helle

The aim of this study was to investigate whether people with Frontotemporal Dementia and thereof outgoing behaviors can be socialized and learn to function well in groups with other people.

The study took place at VUK-Aalborg, Denmark, which is a school for adults with cognitive impairments. VUK-Aalborg has offered cognitive stimulation and training of normal day activities to people with early-stage dementia since 2001. Currently 46 students with dementia are attending VUK – thereof 8 persons with frontotemporal related problems.

This study is a result of a corporation between Aalborg School department and Aalborg Elderly department – both under Aalborg Municipality.

The study engaged five persons with Frontotemporal Dementia and outgoing behaviors, who were aged 57 to 84 (average age 68), and was run for a period of 20 weeks with one session a week (4 lessons each time).

The study method was observation run by a special teacher. Each time was also included an evaluation in writing answered by the participants with Frontotemporal dementia both at the beginning of the today’s session and then again at the end of the today’s session – answering the question: “On a scale from 1 to 10, with 10 as the best result, how do you feel right now?”

The education and training took place in a classroom – transformed into an impulse-poor, predictable and safe environment – using a fixed agenda and context markers, and a great amount of positive attention, knowing that these people very often are met with negative expectations.

The observation showed that the participants significantly improved the ability to focus and concentrate, when solving given tasks. The ability to function well together as a group also improved significant.

The question “How do you feel on a scale from 1 to 10?” showed an average improvement from 7,7 at the beginning of the today’s session to 8,6 at the end of the today’s session.

The next step is how to bring the experience and the successful results from the protected environment in the classroom into the daycare centers and the participant’s homes.

PO2.10. Perspectives on quality of life in severe dementia: a collective case study approach

BROWN Margaret, TOLSON Debbie, WATCHMAN Karen, YOUNG Beverley

This research study examines quality of life for the person with severe dementia living in a care home. Severe dementia is considered to be that period where the person is no longer able to speak more than single words and requires care with all aspects of daily life. Using multiple perspectives and a range of research methods, case reports were developed with detailed descriptions of the daily life and experience of six people with severe dementia. Drawing on the knowledge of family and staff and consulting a range of written and visual data provided a richness of additional material. These case report findings were drawn together and examined in a cross case analysis. Five themes emerged identifying key concerns, such as how needs might be discerned in the person with severe dementia, how connection and engagement could be enhanced and how relationships could be understood. The implications arising from this study shows that aspects of quality of life can be discerned, influenced and enhanced for the person with severe dementia. Indications for future practice include a refocus towards sensory focused practice in supporting the fundamentals of daily life, within a shared and nuanced framework of relationships. As a singular period in the life of the person, emphasis on quality of life should be more closely integrated into the singular narrative of severe dementia.

PO2.11. Carer perspectives of the management of dementia-related dysphagia and mealtime difficulties: a qualitative study

EGAN Aisling, LOWIT Anja, ALLEN Carolyn

The importance of supporting people with dementia at mealtimes is increasingly being recognised as a complex, multidimensional, interdisciplinary issue. Care home staff are often the individuals tasked with addressing mealtime needs in the context of limited resources and training. This research sought to identify what the practices are of carers managing mealtime difficulties in dementia within the care home, what training was typically received, and what self-perceived knowledge of mealtime difficulties and dysphagia existed. The research also aimed to identify training needs.

Semi-structured interviews were conducted across three geographical areas and analysed thematically with several themes emerging. Evidence of a lack of distinct policy for training of care home staff was evident leading to potential gaps in service for people with dementia. It was noted that little formal training of care home staff had been conducted related to general management of dysphagia and mealtime difficulties, and no dementia-specific training was reported. Interviewees reported that their knowledge was gained from observing colleagues, potentially leading to inappropriate management. Interviewees demonstrated confusion over multi-disciplinary roles and reliance on senior staff to identify when additional support was needed. Some interviewees reported creating enjoyable mealtimes for residents and the opportunity to build closer relationships with individuals requiring support as highlights of supporting people with dementia at mealtimes.

The findings from this study are significant as they demonstrate the disparity of processes in the management of dysphagia and mealtime difficulties across settings. Support for people with dementia at mealtimes needs to be addressed at a systems level. The current view of management of discrete processes by individual professionals limits the potential benefits that people with dementia can experience and the support that carers can offer. In the current context of limited training and resources there is a risk that people with dementia may not receive necessary supports.

PO2.12. Psychosocial training program in nursing-home: effects on people with dementia and staff burn out

MANNI Barbara, FABBO Andrea, ZUCCHI Patrizia, SQUILLANTE Maria, LASAGNI Cecilia

Challenging behaviour exhibited by people with dementia (BPSD)can have adverse outcomes, like stress, low morale and low work satisfaction for nursing staff in long-term care settings. Training nursing staff to manage challenging behaviour may reduce its impact. Although much of the research into training nursing staff shows inconsistency results on people with dementia (pwd) well-being and on nursing staff stress or burnout. Our prospective cohort study analysed the effects of a care programme training regarding to psychological tailored interventions for challenging behaviour on staff burnout and on quality of life of pwd.

Methods/Design: The staff training program started on October 2014 until September 2016 involving 20 nursing-home and 666 professionals and nurses. Main contents regarded BPSD management (Person Centred Care model) and psychosocial interventions for challenging behaviours. The training ended with a project task for nursing-home staff to improve quality of life in people with BPSD. 

The primary outcomes were: to give staff skills about BPSD management and to analyse their effects on improvement of BPSD in residents (N=192). We measured BPSD thanks to NPI-UCLA inventory in a sample group of people with dementia and challenging behaviour before (T0) and after (T1-six months) the new psychosocial method.

Secondary outcome was stress experienced by staff (N = 666) with Maslach scale and subscales. Nursing staff could not be blinded to the intervention, but were blinded for the outcomes. Maslach scale gave to staff before and after 6 months long training.

Discussion: in spite of some dropouts our analysis described an improvement, not statistical significant, in staff burnout after training in emotional exhaustion, personal accomplishment and depersonalization subscale. We saw most evident results on client challenging behaviour; in particular, on improving of NPI score (p=0,000)

PO2.13. Changing the rhythm of care homes through a novel music initiative for people with dementia, care staff and the community

REYNOLDS Laura, INNES Anthea, ROBERTSON Jane

Innovations in care are required to support people with dementia living in care homes, particularly surrounding the development of meaningful activities that promote the inclusion of care home residents in their local communities. Music, particularly music-making, has the potential to connect people through shared harmonisation of activity. It has become a substantial area within dementia research due to the perceived benefits of engagement, such as facilitating cognitive and social capacity for people with dementia. Current initiatives within care homes are often delivered ‘for’ rather than ‘with’ people with dementia, and may be individualised, task-oriented or short-lived activities that may not facilitate sustained community connections.

This project will create and evaluate an innovative music initiative in care homes that encourages the participation of people with dementia, care home staff and the community.  We will work with professional musicians and two care homes to develop musical ‘bands’ comprised residents, staff, and community volunteers who will rehearse and perform together. We will challenge the rhythm of care home life by developing a model for a sustainable music-based initiative that will become part of the life of the care home and local community.

This presentation will reveal findings from workshops exploring the perceptions of care staff regarding the development of a sustainable music initiative within care homes. It will also present preliminary findings from the initial implementation of the music initiative within participating care homes, with a specific focus on early participant experiences, such as the engagement of care home staff and residents with dementia, and community involvement. The presentation will highlight the next steps for the continuation of the project. A key outcome of the project will be a practice guide for those wishing to develop their own music groups in care settings for people with dementia, care staff and the community. 

PO2.14. Object ownership, use and risk: the practice of social citizenship for people with a dementia in care homes

WEIR Kellyn, BARTLETT Ruth, LUFF Rebekah

Background: Over the last 20 years’ gerontology, health and social science have shown an increased interest in the significance of objects in older age. Growing evidence reports that objects can provide older people with a ‘sense of home’, support identity and help adaptation to care home living.  What has been overlooked is how older people ‘actively’ use objects in care homes, participating in their own care. People with a dementia, particularly those assessed as lacking capacity, are often excluded from this research. 

Aims:  The study uniquely intersects what we know about life in care homes with sociological ideas surrounding the importance of objects for demonstrating identity, maintaining self-determination and taking risks. It explores the importance of ‘functional objects’, how they are used and by who. It looks at how decisions are made in relation to what objects are transferred from the domestic home to the care home and whether some objects are perceived as ‘risky’.  Addressing these questions is important to identify whether the ownership and use of objects can enact, practice or mediate social citizenship for people with a dementia living in a care home. This study also empirically tests the ethical issues of including people assessed as lacking capacity in research.  

Methodological Design: This ethnographic study takes place in two care homes in the UK, one pilot site and one main site. 

Methods: Data collection methods include object-elicitation interviews for care staff, family members and people with a dementia within an object interview framework. Participant-observations and documentary research are conducted through a social citizenship lens.

Findings: The findings are used to develop a social citizenship practice model including the added element of ‘material citizenship’. Central is the importance of object-person relations to enable, mediate and practice social citizenship for people with a dementia in a care home environment.

PO2.15. A realist review of Namaste Care for people with advanced dementia living in care homes

BUNN Frances, LYNCH Jennifer, GOODMAN Claire, SHARPE Rachel,  FROGGATT Katherine

Namaste Care is an intervention for people with advanced dementia living in care homes who are often unable to engage in general care home recreational activities. Staff engage residents in meaningful, person-centred activities that focus on sensory stimulation. Namaste Care is conducted twice a day, 7 days a week, part of a group session, in a dedicated prepared space. Namaste Care is growing in popularity among nursing care homes, but there is currently limited evidence for its efficacy.

This paper presents findings from a realist review, which is phase 1 of a cluster randomized feasibility study of the Namaste Care intervention being conducted in care homes in the UK. The review involved a scoping of the Namaste literature, stakeholder interviews (n=10) and an in depth review of evidence that tested the assumptions of how the different elements of the Namaste interventions work. The review, which is due to be completed in October 2017, will provide a theory-driven account of how in particular settings (contexts), mechanisms within the intervention lead to particular outcomes for people with advanced dementia, their families, and care home staff.

Early findings suggest that if Namaste Care is introduced as a structured intervention that embraces the core elements of the programme and happens every day (context), staff are able to incorporate it as a necessary and beneficial part of care for residents with advanced dementia (mechanism), residents are less distressed (mechanism), and moments of connection occur between residents and staff / family (outcome).

PO2.16. “Did I do that?” Supporting creativity and confidence through creative interventions with people living with dementia

ROBERTSON Jane, MCCALL Vikki

The arts and cultural sector are under-utilized areas in regards to the potential of supporting and improving the quality of life of people with dementia through creative interventions in residential care. To explore this, we present findings from an evaluation of an activity toolkit designed by a participatory arts organization in central Scotland for activity coordinators, care staff and volunteers to deliver group activities for people with dementia. The project tested an innovative methodology that brought partners in the public and third sectors together to conduct structured observation of the toolkit in practice in two different case study settings during 2016. The project brought the social care professionals, researchers and the arts organization into the research process to embed long-term evaluation skills as central to understanding the positive (and negative) impact of creative interventions. The project established that creative opportunities provided by the toolkit had the potential to increase confidence, reduce anxiety, affirm identities, support social connections and provide opportunities to engage in enjoyable and purposeful activities as evidenced through the observations. Constraining factors and barriers to positive outcomes were observed, particularly around the facilitation process and the structure of activities, the physical environment, and the extent to which sensory and mobility impairments were accommodated. Anxiety around creative activities was a potential challenge amongst participants as well as facilitators, and the paper explores how confidence and creativity can be supported to deliver participatory arts-based activities effectively in residential care. Overall, the paper shows that innovative creative interventions can become part of the solution to improving the quality of life of those living with dementia, can utilize the strengths of public and third sector organizations, and facilitate positive partnerships.

PO2.17. Assessment of needs of care team members: preliminary qualitative results of the DEMDATA study

SCHOISSWOHL Stefan, AUER Stefanie, LINSMAYER Elisabeth, BERÁNKOVÁ Anna, HRADCOVA Dana, PRIESCHL Doris, HOLMEROVA Iva

Due to modern medical treatment options, our society is aging very fast. Hence, the prevalence of diseases associated with aging, such as dementia is going to increase, which will eventuate in subsequent intense caring of affected people. As a consequence, the need for caregivers in institutions, ready to take the challenge, will rise in an unprecedented way.   However, little is known about the needs of the people who work in nursing homes – the care team members. DEMDATA is a multicentre mixed methods cross-sectional study currently carried out in Austria and the Czech Republic (Auer et al, 2017). In this study, stratified and randomly drawn nursing homes are surveyed. In the qualitative part of the study, single interviews with nursing home residents and focus group interviews with care team members and relatives of residents are performed in both countries. This paper will focus on the results of the care team member interviews. Transcriptions of the focus group interviews will be analyzed using Atlas.ti, a software used for the analysis of qualitative data.  Preliminary results will be presented.

DEMDATA: The Austrian-Czech institutional long term care project – design and protocol of a two-centre cross sectional study. BMC Health Services Research, 17:296, doi: 10.1186/s12913-017-2244-x.

DEMDATA homepage: http://www.donau-uni.ac.at/de/department/kmp/projekte/id/23673/index.php?URL=/de/department/kmp/zentrum/demenzstudien

The DEMDATA study is funded by the Austrian Science Fund (FWF, project number I 2361-1327) and the Czech Science Foundation (GAČR, project number, 16-34873 L).

PO2.18. Research in care homes – Issues of participation and citizenship

LAW Emma

My thesis explores this topic by examining links between inclusion, participation in general and participation in research and whether those who work and live in the care home environment experience social citizenship.

Using a national survey and interviews with residents, staff, relatives and experts in care home research, the thesis investigated whether participation generally was linked to participation in research for residents, staff and visitors in a care home setting. The thesis further explored how social citizenship functions in a care home environment and whether there is a link between participation and citizenship.

The findings suggest there is a lack of general participation which is connected with the leadership style and management within the care homes. There is misunderstanding about research and legislation amongst the care home staff, residents, visitors, as well as the junior research staff which inhibited staff and resident participation. Furthermore, citizenship is not experienced universally by residents or staff due to disempowerment, and exclusion occurs amongst residents due to age, frailty and dementia. By facilitating good leadership, communication and relationship-building such issues may be overcome.

In addition, the analysis suggests a link is evident between inclusion, participation and citizenship. Where choice is provided and residents have their social position maintained, as well as have a degree of responsibility for shaping events, this leads to participation and inclusivity as described in Bartlett and O’Connor’s (2010) definition of social citizenship. Furthermore, if inclusion is adapted for cognition and frailty, then participation leads to the experience of social citizenship, encouraging a culture which is able to welcome research.

The explicit emphasis on inclusion and participation in research has enabled this under-researched area of participation and experience of social citizenship in care homes to be more fully explored and I would like to share this with the Alzheimer Europe audience.

PO2.19. Living with advanced dementia in long-term-care - A narrative case study

TATZER Verena

The importance of meaningful occupation for people with dementia living in long-term-care (LTC) is well known (Han, Radel, McDowd, & Sabata, 2016), but the group of people with advanced dementia has been neglected in research. This study is part of a doctoral thesis and deals with the question: How can activity and occupation promote the experience of identity from the perspective of people with dementia living in LTC? Using a qualitative design in the ethnographic tradition, data were collected in two institutions by means of observations, interviews and informal talks while doing activities with people with dementia (Nygard, 2006) and their carers. This was followed by a narrative analysis based on the narrative-in-action approach (Alsaker, Bongaardt, & Josephsson, 2009). In this paper one narrative case study of an older man with advanced dementia living in long-term-care is presented. The results help create a better understanding of the perspective of the person with dementia and allow for a positive view of dementia that is urgently needed (Vernooij-Dassen, Leatherman, & Olde Rikkert, 2011; Wolverson, Clarke, & Moniz-Cook, 2015).

PO2.20. Emotional experience of care staff working with people with dementia

MABIRE Jean-Bernard, GAY Marie-Claire

Introduction: Professional stress is the second health problem bound to the work in Europe. Care staff working with people with dementia are at risk of professional exhaustion and stress because of the workload and specificities of the population to be taken care. The objective of this on-going study is to make a current situation of the emotional experience of French geriatric care staff.

Methods: Care staff are recruited in urban and rural French area in nursing homes (usual unit, adapted living unit and enhanced accommodation unit) and in geriatric hospital units (rehabilitation care unit, cognitive behavioural unit, psychogeriatric, long-term care unit and acute geriatric unit). Care staff are nurses, assistant nurses, life assistants, medico-psychological assistants, gerontological assistants, social life assistants and hospital service employee. Care staff are asked on a voluntary basis to answer anonymously questionnaires in a paper version or online via a link in social networks. Questionnaires are the Hospital Anxiety and Depression Scale (HADS), a questionnaire of psychological well-being at work, a questionnaire of distress at work and the Survey Work-home Interaction NijmeGen (SWING).

Results: Results will be presented in a global way and according to the different units. Correlational analysis will be conducted between questionnaires and between questionnaires and socio-demographic characteristics of the sample.

Conclusion: Knowing the emotional experience state of care staff can help us to propose professional psycho-education programs and support to improve quality of life at work. Care staff healthy psychological at work can have potential beneficial and positive effects on taken care people living with dementia.

PO2.21. DEMDATA: The Austrian-Czech institutional long term care project

AUER Stefanie, LINSMAYER Elisabeth, BERANKOVA Anna, SCHOISSWOHL Stefan, HOLMEROVA Iva

The organization of long-term care is one of the main challenges of public health and health policies in Europe and worldwide. In Austria and the Czech Republic, the majority of elderly institutionalized persons with dementia are cared for in nursing homes. It is however unclear, how many persons living in nursing homes in Austria and in the Czech Republic are suffering from cognitive impairment and dementia. In addition, basic information on the nutritional status, the status of mobility and the medication prescription patterns are often missing. To facilitate new effective and evidenced based care concepts, basic epidemiological data are in urgent need. Thus, DEMDATA (Auer et al, 2017) was initiated to provide important basic data on persons living in nursing homes in Austria and the Czech Republic for future care planning. DEMDATA is a multicentre mixed methods cross-sectional study. Stratified and randomly drawn nursing homes in Austria and the Czech Republic are surveyed. The study protocol used in both study centres assesses four different domains: a) Resident, b) Care team, c) Relative and d) Environmental Factors. Resident’s data include among others health status, cognition, dementia, mobility, nutrition, behavioural symptoms, pain intensity and quality of life. A minimum of 500 residents per country are included into the study (N=1000 residents). The care team is asked about the use of the person-centred care and their burden. The relatives are asked about the number of visits and proxy-rate the quality of life of their family member. Preliminary results will be presented.

Demdata homepage: www.donau-uni.ac.at › ... › Forschung

PO2.21a Mission dementia- an internet based learning program for police officers in Austria

AUER Stefanie, LINSMAYER Elisabeth, BUCHNER Michael, SPAN Edith

Persons with Dementia should remain active members of our society for as long as possible. For this to become a reality, the public needs to become familiar with the special needs of persons with dementia. Teaching programs for different professional groups have been developed and are available on the internet. Internet based courses have several advantages. They are less time consuming then classroom teaching, they can be visited multiple times and are less costly. In addition to internet based courses, professional groups should be supported by professional organizations on a regular basis. We developed 3 internet based training modules and one evaluation module for Austrian Police Officers.  The modules contain interactive teaching elements and the working time is about 15 minutes for each module. The program was developed in cooperation with the Austrian Police Officer Training Academy (SIAK) involving Police Men and Woman and technical experts in a co-creation process. The modules are available for all Austrian Police Officers on the Police-Intranet. An evaluation questionnaire was filled out anonymously to receive information on the modules a. usefulness in practice, b. potential to increase competence, c. sustainability, and d. didactic strengths. 2141 Officers registered as of April 2017 for the online course and 1426 Officers concluded the course with a certificate. The program was rated highly useful, sustainable, with a high potential to improve practical competence. The interactive nature of the program was appreciated by the majority of Officers. In a currently developed certification process, police stations can apply to be certified as “Dementia friendly Police Stations”. Currently 25 Police Stations have applied to become “Dementia friendly”. This presentation will provide an insight into the module content and evaluation results will be presented.

This project was funded by “Fonds Gesundes Österreich” (Project Nr.2442), BVA and SIAK Wien.

PO2.21b Involving persons with dementia in a co-creation process for AAL solutions

AUER Stefanie, LINSMAYER Elisabeth, VIERECKL Carmen, PRISCHL Doris, SPAN Edith

Ambient Assisted living (AAL) solutions provide a potential for persons with dementia to prolong their independent living. Within the project „DayGuide“(www.dayguide.eu), the consortium is developing an internet based guidance system which should support persons with MCI and beginning dementia in their daily living. Using location technologies, users receive context-aware, dedicated messages and information for example via their tablet at specific locations in the apartment. Day Guide`s social platform supports communication with family members, friends and caregivers, address books, information and other services. New innovative methods are also being used to increase the safety of people with MCI and beginning dementia. In order to develop systems that are truly helpful for persons living with memory problems, not only insights from experts and family members are necessary, but first of all, information/insights from persons with MCI and beginning Dementia themselves is crucial.  Therefore, special time and effort was set aside in “Dayguide”, to involve persons with MCI and beginning dementia as co-developers. This co-developing process is planned throughout the entire project period starting with an in-depths needs assessment.  On the basis of structured interviews (“sunny day interviews”), the needs of persons with dementia were determined. Based on these statements and the ongoing feedback from persons with MCI and beginning dementia, Dayguide is developed by the technical partners. 2018 field trials will start in the Netherlands, Austria and in Switzerland involving 60 persons with MCI and beginning dementia. The field trial will test “Dayguide” for a period of three months. This poster reports on the results of interviews performed with persons with MCI and beginning dementia revealing daily needs.

Dayguide is financed by the AAL EU programme

PO2.22. The psychosocial intervention for the elderly with severe dementia

FRANCONE Caterina, De ROSA Guglielmo, SANTILLO Antonella, PREVETE Stefania, BRUNO Patrizia, Amnesia,  Di SILVERIO Pierino, RSA Quadrifoglio

Introduction: The association for neurogeriatric diseases and Alzheimer's syndrome, A.M.N.E.SI.A. has introduced, in 2014, a protocol agreement wich establishes that three psychologists expert in neuropsychology and a psychotherapist specialized in art-therapy, would have collaborated with the R.S.A. “Quadrifoglio”, located in Giugliano, in the province of Naples, in order to improve the psycho-physical well-being in the guests of "Quadrifoglio" affected by severe cognitive decay. For this reason, a protocol for a global intervention has been designed, addressed to guests and operators, in the perspective of a di reorganization of the activities of psychosocial stimulation and environmental restructuring of the living spaces.

Aims: The idea on wich this protocol is based is that a synergistic intervention, that involves users, the environment and the staff they get in contact with, can significantly improve patient's quality of life, decreasing behavioral disturbances and accidents, assuring a continuous stimulation of the remaining abilities of each person and the quality of the equipe's work.

Materials and Methods: The first part of the project has been devoted to the environmental restructuring, in order to make it more prosthetic and able to assure the highest possible autonomy. It has been created some spaces that refer to real life aspects, like newspapers corner, religious corner etc. This spaces are functional to the stimulation of ecological abilities and autonomies. The schedule of activities has followed the standardized protocol of Cognitive Stimulation Therapy, adapting it to the environment of the group. Each session is structured in a start (about 30 minutes), a main activity (45 minutes) and a final part (about 30 minutes). The initial activity consists in motor stimulation exercises (throwing a soft ball) associated with linguistic fluency, time orientation and autobiographical orientation assignements. The main activity varies according to the kind of cognitive, emotive or sensorial function to stimulate, and to the operator's competences. At the end of the session, the activity of the day is summarized, asking the participants for feedbacks and thoughts.

Results: Fundamentals of such program are the righ balance between the necessity to provide a path which has to be continuous, stable and rythmic, and the continuous varability of the contents of the single activities, in order to produce results as generalized as possible and not specific for each activity. This path is originated from a model of stimulaton wich starts from the cognitive sphere and from the importance of the living environment, but its arrival point is a global rehabilitation of the person as an individual, as a member of a significant group and community.

PO2.23. The Namaste Care Family program to improve quality of life of nursing home residents with advanced dementia and positive caregiving experiences of their family caregivers: study design and first experiences

SMALING Hanneke, JOLING Karlijn, ACHTERBERG Wilco, FRANCKE Anneke, VAN DER STEEN Jenny

Quality of life of people with advanced dementia can be improved. Family caregivers may feel frustrated with limited contact with their loved ones, which can result in visits perceived as stressful and less meaningful. Although a number of psychosocial interventions are available for people with dementia, few specifically target people with advanced dementia, and they usually stop at the end of life.

We describe the rationale, objectives, and design of the first study that investigates the (cost-) effectiveness of an adapted version of Namaste Care, a psychosocial intervention specific to nursing home residents with advanced dementia. Namaste Care is a 7-day-a-week program with two 2-hour sessions a day, designed to offer meaningful activities with a ‘loving touch’ approach in a calming environment for nursing home residents with advanced dementia or those who cannot engage in the regular activities anymore. We adapted Namaste Care for use in the Netherlands to more strongly involve family caregivers and volunteers, and to emphasize end-of-life care. We perform a cluster-randomized controlled trial in 16 nursing homes and we aim at including 192 residents with advanced dementia and their families.

We expect that the Namaste Care Family program will improve quality of life and care for Dutch nursing home residents with advanced dementia and increase positive experiences for family caregivers in a cost-effective manner. First experiences of residents, staff, and family caregivers with the program will be shared, such as decreased behavioral problems, but also family caregivers’ feelings of disappointment when their loved one did not noticeably respond during a Namaste activity. We will also talk about the challenges of implementing the program, for example how to involve family and volunteers in the program.

PO2.24. Supporting the person with dementia move into residential care through an art therapy intervention

BURNS Jane

The move into residential care is a significant life event.  For the Person with dementia this can be a time of stress and confusion (Ellis, 2010, Burns 2003). Ellis (2010, p.1159) observes that; “nurses require improved communication strategies … to support residents and their relatives during the admission phase and provide a positive impact on the psychological transition that occurs” Therefore a priority aim during this period is to find an appropriate intervention that can support the psychological and emotional wellbeing of the person.

Art therapy provides a creative and non-verbal psychotherapeutic intervention that facilitates the person’s exploration of feelings associated with the move. Drawing upon research from MSc and PhD findings and clinical data this presentation will offer a case example illustrating “Sally’s” journey into residential care supported by weekly art therapy sessions. The sensory stimulatory touch of the materials and the establishment of safe, therapeutic relationship provided Sally with a bridge of support that helped her express how she was feeling at a time of crisis for her.  Through the regularity of sessions, Sally was able to process the numbness, sadness and anger she felt at the initial move; then she began through the creation of reminiscence images to share with others. Through image-making and discussing her feelings Sally’s confidence grew and she came to accept her new residential care home.

Research illustrates that the trauma of the move into care may propel some person’s with dementia into a state of withdrawal even depression (Burns, 2018-pending). Findings here illustrate that Art Therapy can improve the psychological health of older person moving into care and this in turn can support the lines of communication to stay open between the person, family and staff.

PO2.25. DEMDATA: The Austrian-Czech institutional long-term care project – the cultural and historical background

HOLMEROVA Iva, AUER Stefanie

Austria and Czech Republic share several centuries of common history in Central Europe, as well as in the Austrian, and later, Austro-Hungarian Monarchy. Consequently, both countries underwent similar developments and reforms of the care of “sick and poor” people in terms of the education of physicians and hygienic supervision. Universities played an important role in education and knowledge development, the most central of which was the University of Vienna. It welcomed many scholars and students from all regions of the Monarchy. Prague University (founded in 1348), the oldest university above the Alps, with its Czech and German sections in the 19th and early 20th century, played a peculiar role in dementia research. In our presentation we will highlight the remarkable achievement of Oskar Fischer who, in 1907 (the same year as Alois Alzheimer), published findings of 12 cases of senile dementia.

Despite different developments in both countries after WWII (Austria became part of Western Europe whilst Czech Republic remained under Soviet influence and became “socialist” after the communist coup of 1948), there are many striking similarities in care provision in both countries compared to the situation in other European countries. For example, both focus on institutional care, and have relatively large long-term care institutions.

The Austrian-Czech institutional long-term care project investigates long-term care provision for persons with dementia in both countries. Besides the collection and analysis of quantitative data, it focuses on similarities and differences of long-term care provision in both countries and reflects on these in a historical and cultural context.

PO2.26. Exploring the role of social robots for the mitigation of isolation and loneliness in people with dementia: a Delphi survey

BARRETT Eva, MURPHY Kathleen, MANNION Arlene, MESKELL Pauline, BURKE Megan, CASEY Dympna, WHELAN Sally

Introduction: A key challenge in dementia care is to assist people with dementia (PWD) to maintain social connections within their environment. Social robots are being developed to support human caregiving to PWD. Little is known about how robots should be designed and implemented in this population. This study aimed to establish consensus amongst experts regarding the role of social robots in reducing loneliness and isolation in PWD.

Methods: Experts in dementia and/or robotics were invited to participate in a three round online Delphi survey. Following an extensive literature review thirteen statements were developed and piloted to establish validity and clarity. In Round 1, panelists (n=31) rated their level of agreement with these statements using a 5-point Likert scale. In Round 2, panelists (n=24) re-rated their agreement while viewing their score in comparison with the rest of the panel (median and interquartile ranges). Key areas of disagreement which emerged in Round 2 were explored further in Round 3 (n=17).

Results: There was high consensus agreement that social robots could reduce loneliness and isolation in PWD. Panelists agreed that social robots may be most useful where PWD live alone and are socially isolated, or in residential care settings to relieve staffing pressures. A key consideration highlighted that social robots should be tailored to each individual’s needs. Important factors for effective implementation include the active engagement of PWD throughout the development process and inclusion of family/caregivers during early stage implementation. Music and reminiscence interventions were considered feasible and important interventions delivered by a robot. There was a lack of consensus that a humour intervention delivered by a social robot could be effective in PWD.

Conclusion: Social robots may have a role in reducing loneliness and isolation in PWD. However, the robot should be developed to interact with each person at an individual level.

PO2.27. Promoting well-being in residential care

MANSON Yvonne, WALKER Joe

Well-being is a term banded around a lot but when it comes down to defining what well-being is everyone has a different view on it, much like happiness good well-being can be different for each individual.

Think about what an image of good well-being looks like to you and then ask others what an image of good well-being is to them, each person will come up with something different, it might be an image of laying by the beach, yoga, walk in the woods, family meal, laughter with friends, or quietness with a good book, this exercise evidences just how well-being can be interpreted differently.

The oxford dictionary defines well-being as ‘The state of being comfortable, healthy, or happy.’ The care act 2014 defines well-being as ‘personal dignity, physical health, mental health and emotional wellbeing, and protection from abuse and neglect.’ The care standards in Scotland define well-being as ‘Lifestyle preference and aspirations, encouraged and helped to achieve my full potential, supported to make informed choices even if it might mean taking personal risks, and protected from neglect, abuse or personal harm.

In the UK there are approximately 21,000 care homes, when care home residents were asked what promotes their well-being the answers again were varied, but they could be factored into 7 main categories Social Life, Music, Animals, Safety, Choice, Feeling Valued, and reminiscence.

These themes link with Tom Kitwoods personhood work and in particular his 6 psychological needs

Kitwood’s Psychological needs

Residents themes

Love

Social Life, Animals

Inclusion

Choice, Feeling Valued

Attachment

Social Life, Animals, Feeling Valued, Safety

Identity

Reminiscence, Feeling valued, music

Occupation

Choice, feeling valued

Comfort

Safety, Animals, Social life

To promote someone’s well-being we need to get to know the person, if you know the person you will better know how to promote their well-being

PO2.28. More self-reliance and autonomy for nursing home residents with dementia: a nurse-led intervention (SOCAV)

GRAFF Maud, VAN DER VEEN Dinja, ROETS-MERKEN Lieve

Background: the traditional focus of nursing is based on a biomedical model of acute care in which psychosocial needs are only limitedly addressed. Neglect of psychosocial needs can exacerbate need-driven dementia-compromised behavior (Kitwood, 1997), leading to losses of: self-reliance, autonomy, self-care, decision making, social engagement, and increased social alienation. This will damage people's sense of personhood (Chenoweth et al., 2009). Holistic psychosocial care models reduce need-driven dementia-compromised behaviors and maintain personhood (Kolanowski & Wall, 2000). A positive approach is person-centered care based on educating and supporting staff (Chenoweth et al., 2009; Stanyon et al., 2016), resulting in higher quality of life by enhancing self-reliance and autonomy of patients (Holm, 2001; Crespo et al., 2013). The SOCAV project aims to implement and evaluate a nurse-led intervention focusing on improving the self-reliance and autonomy of nursing home residents with dementia. It is one of the test projects in the “Dignity and pride” program of the Ministry of Health in the Netherlands.

Methods: a longitudinal study with repeated measurement design, measurements at baseline, 3, 6, 9 and 12- month follow-up. Primary outcome: self-perceived performance and satisfaction of the Canadian Occupational Performance Measure (COPM), on meaningful activities defined by nursing home residents and scored from the perspective of the resident, the family caregiver, and responsible nurse. Secondary outcome: behavior score of the Dementia Care Mapping (DCM) assessment. Process outcomes: diaries of: 1) the nurses with their reflections on interaction with people with dementia, and on their own learning process; 2) the peer-coaches with their reflections on the interaction with the nurses, nurses and peer coaches learning processes.

Results: on effect and process outcomes will be presented at this conference.

Discussion: will be focused on the learning process of nurses and peer coaches, barriers and facilitators experienced and recommendations for SOCAV implementation in residential care. 

PO2.29. Impact of a simulated “dementia experience” on care home staff

ROYSTON Claire, MITCHELL Gary, SHEERAN Colin, STRAIN Joanne

Dementia can be considered as a stigmatising disease and in recent years there have been a range of empirical and anecdotal accounts of care practice which are task-orientated and serve to disempower people living with dementia.  In response, there has been a focus on innovative approaches to dementia education which can illuminate how dementia impacts the person and can foster empathetic care practice for people who deliver care.

The aim of this project was to develop a short interactive ‘dementia experience’ workshop for people who work in care homes. The “Dementia Experience” was co-designed by people living with dementia, their family members and multidisciplinary dementia specialists. This presentation will provide evidence from six focus groups (n=40) of care home colleagues who participated in a ‘dementia experience’ workshop in a care home in Northern Ireland. The data was audio-recorded, transcribed verbatim and thematically analysed using Braun and Clark (2006) framework.

The main themes that emerged from this study related to the following five areas: Working with the person’s beliefs and values, the importance of engagement, the importance of shared decision-making, having a sympathetic presence and providing person-centred care. The majority of care staff who participated in focus groups suggested that these areas would correlate to person-centred outcomes which were broadly described as:

1. Satisfaction with care.  2.  Involvement with care.  3.  Feeling of wellbeing.  4.  Creating a therapeutic culture within the care home.

Through provision of the ‘dementia experience’ care staff collectively reported the fundamental importance of helping their residents retain and reclaim their personhood which they understood could be under threat by non-personalised approaches to care.

PO2.30. Information, awareness and empowerment of caregivers of persons with dementia

D’ANASTASIO Clelia, FERRIANI Elisa, STINZIANI Sabrina, LINARELLO Simona, TEMPESTINI Antonella

Background and Purpose: The importance of correct information to caregivers on dementia is well recognized in national and international literature as a particular source of empowerment in both the preventative perspective and as a key starting point for an adequate management over time and better quality of life.

Method: The "caregiver’s school" is aimed at groups of 20-30 next of kin of persons with newly diagnosed dementia and is coordinated and conducted by a psychologist in collaboration with the other professionals of Center for Cognitive Disorders, Bologna Local Health Authority.

Socio-demographic data are collected: Before and at the end of the courses the following tests are performed:  General Health Questionnaire -12 items (GHQ-12 D. Goldberg, 1979), Sense of Competence Questionnaire (SCQ of Vernooij-Dassen, Persoon, Felling, 1996), Caregiver Burden Inventory (CBI Novak, 1989). Participants’ satisfaction is also evaluated.

Results: So far, 10 groups involving 210 caregivers were carried out. Males accounted for 24.1% of the sample and females for 75.9%. Mean age was 56.96 ± 13.66 years. As far as family relationship, children accounted for 60% of the sample, spouses for 25.70% and the rest were brothers, children in law, grandchildren. 39% of caregivers were living with the person with dementia.

Statistical analysis showed that the "School" improves the caregiver’s perception of their own health status (GHQ p = 0.005), especially if females (GHQ p <0.05) and the sense of their competence towards caregiving (total SCQ p = 0.021). Better mastering skills emerge, with awareness of the importance of the caregiving role, a positive impact on management at home is observed. Appreciation exceeded 90%.

The study is ongoing to better explore and assess the fallout of these interventions on clinical and functional aspects and service use by the persons with dementia.

PO2.30a Fighting the stigma: social animation and awareness in primary schools on the topics of aging and of dementia"

D’ANASTASIO Clelia, FERRIANI Elisa, STINZIANI Sabrina, LINARELLO Simona

Background: The personal and family impact of Dementia generates psychological and cultural barriers that stigmatize cognitive disease jeopardizing recognition and acceptance. We aim to promote awareness and attention among young people about cognitive impairment in adults and elderly persons.

Materials, methods, outcome: The project has been tailored on the on-going teaching activities of Bologna schools and is focused on time, memory and remembrance. It is in progress and here we report about the achievements at an elementary school. 4 teachers and 100 students have participated. Interventions were prepared through meetings among teachers, parents, geriatrician, psychologists of the local Geriatric and Cognitive Disorders Unit. An interactive-experiential method was used, for proposing to children events as "their possible experience" makes them simpler, intuitive and easier to understand and master. The work was built around the book "Let's say we were" by Silvia Roncaglia, which deals with dementia through the story of a little boy and his grandfather, to show the children that the disease does not lead people away, the emotional bond becomes a "cure" through new strategies of relationship and through an understanding of what can happen. Workshops, games and discussion groups were carried out, calibrated on the level of intellectual-emotional-interactive development of the class; they addressed the concept of time and memory, the meaning of "loss" due to dementia and how it is possible to empower oneself despite it. With children of fifth degree classes, more specific talks were made about nervous system, cognitive function, aging, using language and concepts appropriate to their age. Children grasped the different aspects and emotional shades of dementia, producing their own output such as drawings or short essays; teachers have found in this project an opportunity to address complex issues. The realization of the project continues in junior high schools and high schools.

PO2.31. A qualitative study exploring the effectiveness of a person-centred training intervention on burnout for nurses working in nursing homes

SMYTHE Analisa, JENKINS C., BENTHAM P., DOWNS M., OYEBODE J.    

Background: There may be links between burn-out in nurses working in nursing homes and poorer quality of care. Training to promote person-centred care and empower nurses has been suggested as important to improve the experiences of nursing home residents with dementia while also enabling nurses to gain professional satisfaction and commitment to their roles. However, there are difficulties in evaluating which approaches to training have sustained impact on practice and there is little work exploring the factors which may enable the initial positive impact of training to be sustained. This extract reports on the qualitative findings of a larger mixed-methods study investigating the impact of a person-centred training intervention which included workplace training and ongoing supervision. 

Methods:  The qualitative evaluation of the training involved interviewing a sub-set of those who had received the training and supervision intervention. Overall, the training and supervision intervention was delivered to 78 nursing staff from 60 nursing homes within a cluster randomised controlled trial. We included a proportion (eight) who had received training and supervision and five who received training only. Numbers were chosen to allow the collection of a range of experiences.

Findings: Three major themes were identified: Experiences of Burnout, Reactions to Training and Impact of Supervision.

Conclusions: Working long hours, feeling overloaded, unsupported, isolated, and not feeling valued all combined to create an extremely unfavourable work environment and led to nurses’ experiences of burnout. The training and supervision appeared to reverse or break through some of the conditions that led to burnout. The findings indicated the training and supervision interventions empowered nurses to change their practice. Active learning strategies and a person-centred approach to learning empowered the nurses, while clinical supervision aided implementation and adjustment of strategies, leading to an increased sense of job control and job satisfaction.

PO2.32. Application of MarteMeo® Counselling to people with behaviour variant frontotemporal dementia and their carers (AMEO-FTD) – A feasibility study

BERWIG Martin, DINAND Claudia, BECKER Ursula, HALEK Margareta

MarteMeo® Counselling (MMC) is a video-based intervention and is based on the presumption, that a good and reciprocal relationship is a prerequisite for the development and maintenance of social cognitive abilities. In the field of neurodegenerative diseases, the aim of MMC is not supporting development, but activating resources for functioning and self-maintenance. In this feasibility study MMC was applied for the first time to people with bvFTD and their caregivers. The aim was to evaluate the usefulness of MMC for this population, to determine an optimal intervention format and to explore potential effects.

The study used a quasi-experimental one-group-pre-post-design with double pre-measurement and an embedded mixed-method approach. Five dyads were enrolled. Outcomes are sensitiveness of the carers, quality of carer-patient relationship (QCPR), positive and negative affect and challenging behaviours of people with bvFTD. At three time points of examination (T0, T1 after two weeks, and T2 after six weeks) a video of a dyadic interaction in a daily life situation (mealtime) was recorded and data collection was conducted. Time between T0 and T1 served as control period. Between T1 and T2 the carers received five MMC sessions.

Preliminary results based on descriptive statistics show changes for QCPR, positive and negative affect and challenging behaviours in favour of the intervention period. For QCPR and positive affect changes were marginal statistical significant (trend). Micro-video-interaction analyses of the video sequences taken during each examination are still on-going. Process evaluation showed that MMC was well accepted, adherence was optimal and all carers benefited as much or even more than they expected.

Altogether results seem to indicate that MMC can be implemented in people with bvFTD and their carers and can be evaluated in a larger scaled pilot study or even in a definitive large scale trial.

PO2.33. Alma supervisor - benefits of visits to Almas house

AKETUN Sigrid, JACOBSEN Ida, WULFF Dahl, STACKPOLE Rebekka

Background: In Oslo, there are more than 11 000 people with dementia and the number is expected to double by 2040. The City of Oslo aims to include assistive technologies (AT) and smart technology as an integrated part of home care services within 2020, also for people with dementia. Research and experience says that people with dementia and their family carers seldom get sufficient information and access to assistive technologies (AT). In practice, there are several challenges in implementing AT and smart technology. To accommodate this, Oslo municipality established Alma’s house, in 2012. A demonstration flat showing dementia design, AT and smart health technologies and serving as an education and training centre for home care personnel. In 2013, Alma supervisor’s course was developed to certify health professionals to arrange visits for persons with dementia to Alma's house.

Aim: Alma supervisors perform visits in Alma's house in a way that persons with dementia and relatives will receive information and increased knowledge about different solutions and that Alma supervisor will help to find the right solution according to the person's needs.

Method: A survey has been conducted in order to investigate how Alma supervisor`s uses Alma's house in their practice.

Results and Conclusion: 60 % of Alma supervisors answered the survey. The majority were trained occupational therapists or nurses. The majority had performed between 1 to 5 visits but one Alma supervisor had completed 20 visits. The majority answered that it was important for their practice to perform visits to Alma's house. They report that most visits to Alma's house have a medium or high importance for both person with dementia and relatives. The visit to Alma's house has in several ways and almost every time been important for the solutions a person with dementia chooses to use in his daily life. One Alma supervisor describes: "it is important to showcase it as an aid. To be able to look at, put on and try out ".

PO2.34. Promoting the care experience of people with dementia through ethics education: challenges and opportunities

COX Anna, GALLAGHER Ann, PEACOCK Matthew, ZASADA Magdalena

This presentation/poster presents findings from the Researching Interventions to Promote Ethics in social care (RIPE) project. We describe 3 ethics intervention: face to face ethics education; reflective groups; and immersive simulation. We will discuss findings from the quantitative data which measured moral sensitivity, ethical leadership, empathy and moral stress. We will also summarise findings from qualitative interviews and written accounts which focused on experiences of epiphany, vulnerability and dignity in care. Overall, we argue that the three interventions capture well the key features of ethical competence that enhance dementia care. We discuss challenges regarding care home engagement and the value of ‘slow ethics’, of making time and space for ethics conversations in care environments. Further research is required to develop an ethical competence measurement tool for dementia care environments. The RIPE study was approved by the University of Surrey Ethics Committee.

PO2.35. Connect with Alzheimer’s: school program

BOADA Mercè, GELONCH Antoni, RODRIGUEZ Isabel, TÁRRAGA Lluis

Fundació ACE has implemented, in collaboration with the Education Department of the Catalan Government, an introductory project to understand and experience Alzheimer’s disease in the classroom.

Different materials have been designed for this particular purpose: animated videos, educational guides for different educational stages (early and middle primary education: 6-10 years; upper primary education: 10-12 years; and obligatory secondary education: 12-16 years), plus a teacher’s manual.

The main goal is that students get familiar with the symptoms of the disease and learn to respect those who suffer from it.

For each educational level an adapted short story has been created so that students can get to know better aspects like temporal and spatial schemes (6-10 years); language and communication, basic procedures and skills, affective development, and human values, not only regarding to personal autonomy but also in terms of relating to others (6-16 years). They will also help students with ages 12-16 to understand better what causes the disease (from the point of view of neuropathology, genetics, and diagnostic criteria).

The Teacher’s Manual includes an introduction to the disease and describes the general work characteristics for all ages (significant learning and teacher’s role during the activity).

It has been planned to start implementing this activity within a pilot project in 50 schools, which have been chosen by the Department of Education together with Foundation ACE. The latter will collaborate in the training of teachers in order to introduce the program and will provide a call service to them in case they have any enquiries or need any clarification about the materials or the implementation of the project.

For all that has been said, aim of this project is that students get to know Alzheimer's disease in a structured and systematic way, and to be respectful with people suffering from this disease.

PO2.36. How we perceive you?” The self-perception and voice of people with dementia in the residential care homes in the chinese society

CHUI CHI MAN Kenny, LAM CHING Man

Dementia is one of the most common reasons for applying residential care homes in Hong Kong which is one of the highest institutionalization rate cities with 6.8% of the ageing population. The term “dementia” in Asia including China, Japan, Singapore, Taiwan, Hong Kong, South Korea and more, has been translated as “Chi Dai Zheng” before which carries a very negative connotation. The linguistic descriptions about “dementia” indicate to the loss and negative understanding.

For conducting the qualitative research with interpretivism, and understanding the daily interactions between people with dementia and the caring staff, a thematic analysis was applied. To explore the first-hand interpretations of the perceived self by the two parties, an in-depth and individualized interview is necessary. Therefore, interviews and observations of people with dementia and caring staff members in the subvented and non- subvented residential care homes, training session of subjective views of people with dementia and focus groups were done.

People with dementia experience the “puzzling self” as they live in-between the self-perceived reality and others-perceived reality. Different understanding of context between people with dementia and the caring staff creates discrepancy of expectation regarding care. The failure of the caring staff to provide the appropriate information, which is in reference to the subjective world of people with dementia, further leads to their confusion and becomes puzzling. Getting familiar with the formation of the “puzzling self” and the rationale behind the behavior of people with dementia can lead to effective and meaningful interactions during the caring process. The “synchronizing” understanding and positive change of attitude were found among the caring staff and this favors the implementation of the humanistic care in the residential care homes. This study intends to go beyond the dominance of medical explanations and treatment to enlarge the perspective of selfhood care and clinical practice.

PO2.37. Carer training: under a big umbrella where there is room for all

RAGNI Silvia, LEVI, Stephanie, BARTORELLI Luisa

Introduction: Those who care for people with dementia know very well how the disease does not affect only that one person but rather the entire family nucleus. It is like a downpour, where everyone gets soaked, more or less intensely, depending on their proximity to the person with dementia. What role could the Alzheimer associations have? We think of them as a big umbrella, under which there is shelter for all from the negative impact of the disease, before one resumes the journey of difficult daily life, now more comforted and better prepared.  Alzheimer Uniti creates opportunities of training and support for family members and caregivers, aware that the course of the illness depends significantly on the quality of the physical and personal environment in which the person lives.

Method: Alzheimer Uniti has been running various training programmes for the last 10 years, which we “tailor” to the individual carer position. For family caregivers: individual support sessions 4 hours a week given by an expert, especially for the management of behavioral disorders; monthly support groups led by a psychologist; the Savvy Caregiver programme which is a structured method of 6 meetings for the person with dementia and their family; and regular legal support.  For home carers: courses twice a year, groups of 30 people (90% foreigners) for a total of 60 hours to help people with dementia at home.  For volunteers: 20 hours of training for home activities, recreational and home companionship. For personnel in healthcare facilities: The Minerva course of 10 sessions of eight hours each. In addition, The Room of Ideas, to train the trainers, which is a two-day residential course for doctors, nurses, psychologists, occupational therapists, physiotherapists and educators, to create new projects together.

Conclusion: Alzheimer Uniti’s principal mission is the training of everyone who is involved in dementia care, remembering always that the main protagonists are the people with dementia themselves.

PO2.40. Gaming with dementia at home in Slovenia

KRIVEC David, VIRANT Alenka, JURJEVČIČ Maja

Our activities are aimed at providing support, information and training for carers and family members of persons with dementia. We have detected increased demand for assistance at home from relatives of people with dementia. For that reason, we have started with a new activity - companionship for persons with dementia - "Living with Dementia at Home". Main objectives are: provide for active and high quality living of persons with dementia, empowerment of families living with dementia, to reduce social exclusion of individuals with dementia and their closest ones. In preparing the activity - training of volunteers, our training programme "Forget Me Not" (since 1999), for relatives of persons with dementia is very successful and used as a basis. In the next step, we discussed the programme in focus groups – self-help groups of carers. The aim was to determine and include actual needs, stressed out by families with persons with dementia. Participating families had to apply with a questionnaire about activities, daily routine, progress of the disease and likes or dislikes of person with dementia. The companionship for persons was launched in June 2015. Companions are trained volunteers. In 2016 we became part of a new Erasmus+ project: AD-GAMING - Development of a Training Program for the Improvement of Quality of Life of Persons with Alzheimer through "Serious Games". We use co-creative sessions with persons with dementia, their family carers and professionals to develop and test the methodology for the use of serious games. As the result the training programme for family carers and professionals as well as AD-GAMING e-platform will be prepared. We have already introduced the gaming concept in our activities of companionship at home. We conducted an evaluation and according to results, project showed positive impacts for persons with dementia, their caregivers and volunteers.

PO2.42. Evaluating an internet of things (IoT) based solution for home care support in dementia

CHRYSANTHAKI Theopisti, MAGUIRE Roma, NILFOROOSHAN Ramin, PARSONS Catherine, EGAN Kieren, JOY Mark, BARNAGHI Payam, ROSTILL Helen

In the absence of treatment and with a significant increase in the dementia diagnostic rates, there is an urgent need to explore the viability of community based models of dementia care. One of the major challenges in dementia care delivery is that many people with this condition require 24-hour care imposing a burden on informal carers and services (Alzheimer’s Society 2014). The evolution of smart technology-based interventions connected via the Internet of Things (IoT) has the potential to revolutionize the delivery of domiciliary care. IoT use can optimise information flow and integrate real time care information to allow clinicians to remotely monitor and support PWD to live safe and well at home. Despite the potential for IoT applications to transform care delivery and improve outcomes, there is limited research on the role of IoT interventions in dementia care.

This paper will present early evaluation findings from the implementation of the UK Technology Integrated Health Management study (TIHM).TIHM for dementia is the biggest randomized control trial designed to evaluate the effectiveness of a domiciliary IoT intervention for people with mild to moderate dementia who live at home and who have a regular carer.  The study explores the impact of IoT intervention on hospital admission rates, duration of stay, time to admission to care placement, quality of life and wellbeing for the person with dementia and their carer. 1400 people are recruited in the study (intervention: 350 dyads; control: 350 dyads). Real time data on biomarkers and patterns of behavior is collected continuously and managed through the use of a secure dashboard that triggers concerns or alerts and relays this information to a centralised monitoring team. Big data supports proactive management of the condition and research. The paper will discuss the architecture of the TIHM ecosystem, its development, use and acceptability.

PO2.43. The service and support needs of family carers and the people living with dementia that they support: A Delphi study in a rural community in Victoria, Australia

BAUER Michael, FETHERSTONHAUGH Deirdre, FARMER Jane, BLACKBERRY Irene

Background and aim: Approximately 70% of people living with dementia in Australia live in the community, alone or with a carer; however, there is little available evidence on the services available to family caregivers and the people they support who live in rural communities. This study aimed to; 1) identify the important support needs of people living with dementia and their family caregivers in a geographically large rural region in Victoria, Australia; 2) build a systematic consensus on the top three support and service needs for people with dementia and; 3) identify any existing evidence-based services and supports available to respond to those needs.

Methods: Focus groups with family caregivers, people living with dementia and health professionals who work with people living with dementia, a modified Delphi survey and review of the literature.

Results: Family caregivers, people with dementia and health professionals identified twelve key support needs. These included the need for earlier diagnosis; the need for local businesses and services to be able to support and interact with people living with dementia; caregivers having someone to talk to about their concerns; improved education, training and empathy for health professionals; training and knowledge of caregivers and the availability of information about services and how to navigation them. Using a Delphi method, the top three priority areas among caregivers and providers were identified and ranked.

Conclusion: Identifying the priority service needs of caregivers and people with dementia in a rural region has highlighted a number of touch points where service provision can be optimised and service responses targeted where they are most needed. The applicability of these needs in other rural regions more broadly needs to be investigated.

PO2.44. Key stakeholders and their perspectives on regionalized dementia service structures – Findings from the INREGA-DEM project

SCHIRRA-WEIRICH Liane, GROEBER, Hannah, WIEGELMANN Henrik, VANDERMEULEN, Nadine

Background: An important opportunity to strengthen the well-being of persons supporting someone living with dementia, lies in the still missing coordination of care and support services to everyday needs. Therefore, regional support services need a user-friendly focus. Key stakeholder, in particular family members, know best how services should be designed. The INREGA-DEM project analyses existing care structures, usage behavior and barriers of utilization by using a multiple stakeholder approach.

Key research questions:

  • Which possibilities of support structures exist and who utilizes them?
  • What are barriers of utilization and supply gaps?
  • Are there specific differences between urban and rural areas?

Methods: (1) Focus groups with key stakeholders (n=16), (2) Online service-provider survey (n=70), (3) Paper-and-pencil survey with caregivers (n=250)

Results: So far, first results of the focus groups (1) indicate that:

  • Not dementia as a condition itself, but coordination and organization (bureaucracy, lacking flexibility, missing independent consulting) of services are main reasons for challenging impacts of supporting someone with dementia, caregiver reported. Thus caregivers prefer choosing private instead of professional support.
  • In rural areas, formal service-networks (specialists, nursing services) are insufficiently accessible, resulting in disadvantages for rural citizens, professional experts explained.
  • There are missing inducements to provide innovative, user-specific services, provider’s stated.
  • Consistently, all groups mentioned younger onset dementia as a neglected group.

Discussion: The first results illustrate how complex, heterogeneous and individual care arrangements are. Therefore, flexible and suitable support services are necessary. Knowledge about predictors, barriers and usability contribute to a fitting development of support services. Further project results (2), (3) will be available at time of the AE Conference. The INREGA-DEM project results will be transferred into practice via a manual for professional actors, working within regionalized dementia care structures.

PO2.45. A “Tea for two”: a psychosocial intervention for PwD and their caregivers

NEVIANI Francesca, FABBO Andrea, MONZANI Martina, RICCHI Chiara, CONCARI Enio, LUPPI Emanuela, MARVERTI Elisa, CASELLI Luca, NERI Mirco, SELMI Laura, ALESSANDRA Camorani, SAOTTINI Michele, LIBBRA Maria Vittoria, BERTOLOTTI Marco

Background: Many studies have stressed the relevance of caregiver in dementia care. It’s known that dementia causes a high burden for people with dementia (PwD) and their caregivers due to challenging behaviour, disability, cognitive impairment.  Psychosocial intervention has shown significant effects on reducing cognitive and behaviour impairment, caregiver burden and improving quality of life.

The “Tea for two” is a psychosocial intervention for PwD and their caregivers. This intervention is promoted and financed by GP Vecchi Dementia Association, a local no-profit organization based on volunteers and comprises occupational therapists and a psychologist.

Method: PwD and their caregivers are invited twice per week; the activity is two hours long and is structured as follows:

PwD: an occupational therapist, with voluntary collaboration, works with PwD and propose activities such as snoezelen therapy, occupational therapy, music therapy, cognitive stimulation, leisure activities.

Caregivers: at the same time, in another room they have the opportunity to communicate, share their experiences and give mutual support. A psychologist is always present to facilitate the discussion and to support the group.

During last part of the activity Pwd and their caregivers have a tea together.

Conclusion: the “tea for two” is a free initiative that offers the opportunity for PwD and caregivers to spend time together in a friendly environment where PwD engage in stimulating activities and carers can get support.

PO2.46. A Cohousing model to improve PwD and their caregivers quality of life

NEVIANI Francesca, URBELLI Giuliana, NEVIANI Chiara, CARTA Emanuela Maria, BARBARI Luca, FABBO Andrea, SPANO’ Andrea, MONZANI Martina, RICCHI Chiara, CONCARI Enio, LUPPI Emanuela, MARVERTI Elisa, NERI Mirco, SELMI Laura, TRIOLO Federico, NORA Francesca

Background:  Social isolation, caregiving costs, loss of quality of life related to increasing disability, loss of agency and personhood, are some of the main unmet needs for people with dementia and their caregivers.

Objective: In order to support people with dementia and their caregivers we implemented a cohousing model.  4 persons with dementia were encouraged to live together. Caregivers were supported in the care according to person centred approach

Method: The project’s sponsors are:  Modena City Council providing the house; The “Cassa di Risparmio di Modena” Foundation financing the house furniture; the “Centro Servizi “(community social service) providing health care workers for assistance activities in support to caregivers; local dementia association (GP Vecchi) organizing psychosocial intervention in order to stimulate PwD and support caregivers.

Partecipation in the project has been on a voluntary basis. The only exclusion criteria for PwD has been bedridden

Each PwD has his own bedroom with personal belongings and furniture, while the dining and living room are furnished according to prosthetic environment principles. Caregivers turn up in order to both maintain familial environment and reduce global care burden, while formal caregivers, provided by social service and employed by relatives, contribute to PwD care. According to carers expressed needs, voluntaries and an occupational therapist have been engaged to weekly involve PwD in leisure activities and psychosocial intervention.  A granted psychologist is available to support Caregivers.

Conclusion: In our Country, this is the first cohousing experience for PwD.  After 9 months’ relatives improved caregiving experience, reduced financial burden, isolation and time spent for assistance. PwD reduced the risk of institutionalization and improved their quality of life.

PO2.47. The nutritional care of people living with dementia at home: a scoping review

WILKINSON Louise, KENT Bridie, ABBOTT Rebecca, WOOD Chloe, HICKSON Mary

People with dementia are a vulnerable group prone to malnutrition who often wish to remain living at home with family support.  Nutritional status can decline during dementia, reducing the quality of life for the person with dementia and their family. However, it is not clear how best to support people living at home to maintain good nutrition. We conducted a scoping review to find out what research existed to help solve this problem.   

A scoping review framework was used, and the following electronic databases were searched: MEDLINE (OvidSP), The Cochrane Library, EMBASE, TRIP, PsycINFO, and CINAHL.   Studies were included that explored the nutritional care of people living with dementia at home, and categorised using content analysis.  Stakeholders were involved in the development of final categories.

A total of 2566 titles and abstracts were retrieved and screened, resulting in 61 relevant articles and the information from these fitted into three main categories:

  • Timely identification of nutritional risk and regular monitoring of nutritional status is important.
  • Multi-component tailored interventions to support nutritional care are needed.
  • The caregiving relationship influences the nutritional status of both the carer and the person with dementia.

There are many studies identifying people living at home with dementia as a vulnerable group prone to malnutrition, however only a small number of interventions to improve nutritional care have been tested.  There is a gap in the literature exploring the role of home care providers and healthcare professionals in the provision of nutritional care.  We now need to develop and test ways to support people with dementia and their carers to maintain good nutrition while living at home. It will be important to find ways to deliver the right information and treatments, and understand the roles of both home care providers and healthcare professionals in the provision of nutritional care.

PO2.48. Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, (cost-) effectiveness, deployment and ethics

VAN DER ROEST Henriëtte, MEILAND Franka, INNES Anthea, MOUNTAIN Gail, ROBINSON Louise, GARCÍA Antonio, GROVE Diane, THYRIAN Jochen René, EVANS Shirley, DRÖES Rose-Marie, KELLY Fiona, KURZ Alexander, CASEY Dympna, SZCZESNIAK Dorota, DENING Tom, CRAVEN Michael, SPAN Marijke, FELZMANN Heike, TSOLAKI Magda, FRANCO Manuel

Background: Assistive and health technologies are increasingly applied in dementia care, but several challenges remain before technological support systems really can make a valuable contribution. This is hindered for example by its’ slow uptake and implementation and the lack of high quality scientific research. This study reports on the state of the art of technologies for community dwelling people with dementia regarding issues on development, usability, (cost-)effectiveness, deployment and ethics. Three application fields are explored: 1) support with managing everyday life, 2) support with participating in meaningful activities, and 3) support with health and social care provision. Gaps in the evidence and challenges for future research are identified.

Methods: Literature searches were conducted on usability, (cost-)effectiveness and ethics using Pubmed, Embase, Cinahl, and PsycInfo databases with no time limit. Selection criteria were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases.

Results: Results showed that persons with dementia want to be included in development of technologies; there is little research on usability of assistive technologies; various benefits are reported but are mainly based on low quality studies; barriers to deployment of technologies in dementia care and ethical issues were raised by researchers but often not studied. Many challenges remain: including the target group more often in development; performing more high quality studies on usability and (cost-)effectiveness; creating and having access to high quality data sets on existing technologies to enable adequate deployment of technologies in dementia care; and ensuring consideration of ethical issues as an important topic for researchers to include in their evaluation of assistive technologies.

Conclusions: Based on these findings, various actions are recommended to help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them.

PO2.49. Role ambiguity and negotiating blurred boundaries: How do home care workers’ care for people with dementia upto the end of life?

VANDREVALA Tushna, ABRAMS Ruth, SAMSI Kritika, YEH I-Ling, D'ASTOUS Val, MANTHORPE Jill

The role of a homecare worker has been described as ambiguous and at the intersection of informal and professional care. There is lack of evidence on the experiences of the homecare workforce on providing care for people with dementia upto the end of life. The current study aimed to investigate the subjective experiences and challenges facing the home care workforce caring for people with dementia upto the end of life. The current paper explores the practice of negotiating blurred boundaries within the everyday experiences of a homecare worker. Using semi-structured interviews and Framework Analysis, the experiences of homecare workers (n=28) and their managers (n=12) were investigated in 2016 in a range of homecare services in the South-East and London regions of England.

The findings suggest that homecare workers had clear role clarity in their everyday role, which was perceived as becoming blurred when working with people with dementia and in the context of end of life. Homecare workers perceive that the unpredictable nature of working with people with dementia and dealing with challenging behaviours leads to role ambiguity. As the health and mental capacity of a client deteriorated, fulfilling one’s professional duties and respecting clients’ autonomy left the homecare worker feeling helpless and dissatisfied. The absence of client feedback made it difficult for workers to personally determine where the boundaries of ‘good’ care exist. Forming close personal relationships with clients and their families particularly in the home setting led to blurred relationship boundaries. Safeguarding boundaries established through company policy may not be conveyed to family members, leading to personal and professional dilemmas. Homecare workers felt ill equipped to deal with the grief of family members and struggled to provide emotional support. There is a need to develop effective psychosocial interventions to help homecare workers negotiate these blurred boundaries.

PO2.50. Exploration of paramedic students’ experiences, knowledge and attitudes towards supporting people with dementia and their families in the community

BROOKE Joanne, STIELL Marlon

Background: There is a lack of education in undergraduate paramedic programmes on caring for the older person (Abbey et al. 2016; Annear et al. 2016); curriculum has focused on clinical skills to the detriment of soft skills, such as communication (Ross 2012). Research is lacking in understanding how paramedic students develop their knowledge, skills and attitudes, to support people living with dementia and their families in the community.

Aim: To explore how paramedic students develop knowledge, skills and attitudes to support people with dementia and their families.

Method: Qualitative data were collected from 1st and 3rd year paramedic science students from two ambulance service providers within the South of England. Students’ perspectives were explored via focus groups, which were conducted on their University campus, audio recorded and transcribed verbatim. Data were analyzed using thematic analysis (Braun & Clarke 2006).

Results: During 2017 focus groups (n=6) were completed with 57 paramedic science students, three with 1st year students (n=24) and three with 3rd year students (n=33). Focus groups lasted between 25 to 45 minutes, during which 18 students disclosed they had a relative with dementia. Four themes emerged: 1) impact of dementia on all concerned, and the progressive untreatable nature of the disease 2) challenges of communicating with people with dementia, obtaining consent and that every person with dementia and their circumstances are unique 3) self-disclosure and a negative emotional response to dementia 4) experience and insight into a lack of social care and pathways for people with dementia.

Discussion: None of the students discussed a person-centered approach to supporting people with dementia; however all discussed how dementia impacts on each person and their family uniquely. Students’ felt the need to develop skills to support this uniqueness, which could only be learnt ‘on the road’, with the support of skilled placement educators.

PO2.51. Empowering the informal caregivers of older people with dementia based on caregivers’ narratives of caregiving experiences: the importance of the community’s support

VARIK Merle

The role of the informal caregiver entails many factors which can negatively affect overall well-being. Emotional strain which comes from responsibility greatly affects the quality of life and relations in the family (1). The informal caregivers require sincere understanding from other members of family, friends, colleagues and the general community. (2). Social support groups and frequent contact with people help to alleviate the strain and prevent crises in private life

The purpose of this study was to understand how the caregivers of elderly with dementia perceive their social environment and support of their community.

Methods The study followed 16 informal caregivers who had experience with care of older relatives with dementia. Data was collected February to March 2017. The data was collected by using narrative interviewing and was analyzed with thematic narrative analysis.

Results A sense of support from surrounding people is of great importance for caregivers of family. In addition, an understanding attitude from neighbors and other acquaintances is substantial in order to assure the psycho-emotional welfare of caregivers. Attentive and observant mentality and reaction by fellow citizens is also an important factor. It is often due to the assistance of a helpful citizen that a lost elderly person with dementia is guided back home.

Conclusions A supporting attitude of the community is a vital part in empowering caregivers. The community is seen an unused resource in social work. The improvement of society to become a friendlier place begins from raising the awareness of people. 

PO2.52. The role of volunteering in dementia care

MCCALL Vikki, MCCABE Louise, RUTHERFORD Alasdair, BU Feifei

Recent changes in public policy, such as the promotion of self-directed support alongside funding restrictions, promote the role of the voluntary sector and the role of volunteers in supporting the health and social care of people with dementia.  However, little research has been completed to date specifically about the role of volunteers in dementia care and how this impacts on those living with dementia and their carers. The research presented here is part of a larger three-year study that set out to discover the role of volunteers in supporting people with dementia in a range of settings from their own homes to care homes.  The research involved secondary data analysis, a survey of organisations where volunteers work with people with dementia and interviews with people with dementia, family carers and volunteers. The findings suggest that volunteers play an important role in supporting people with dementia, facilitating the gaps that often appear in social networks as dementia progresses. Continuity was seen as particularly important for providing support for those with dementia, but differences in access to services and opportunities was a challenge. Volunteers also enable innovative projects such as those promoting the arts for people with dementia, poetry, dancing, singing, to continue to provide support and enjoyment.  However, it is important that volunteers receive appropriate training and support and that volunteers and people with dementia are ‘matched’ to encourage continuity. This research suggests that there is potential for volunteers to contribute positively to the lives of people with dementia more consistently if given structural and organisational support.

PO2.53. Participation of persons with dementia (PwD) - the Bavarian Dementia Survey (BayDem)

NICKEL Franziska, JOA Wolfgang, BARTH Janina, MARINOVA-SCHMIDT Velislava, HESS Manuela, GRAESSEL Elmar, KOLOMINSKY-RABAS Peter

Background: There are currently about 1.6 million persons with dementia (PwD) living in Germany.  Despite the demand for assistance and care increases in the course of the disease, the need for autonomy and participation for PwD remains important. The World Health Organization defines in its “International Classification of Functioning, Disability and Health” (ICF), the term participation as “the person’s involvement in a life situation”.  Therefore, this work examines the various characteristics of participation in the course of dementia based on data collected within the Bavarian Dementia Survey (BayDem). 

Method: BayDem is a multicenter longitudinal study located in three different sites in Bavaria, Germany. Project participants are PwD (according to ICD-10) and their caregivers. Individual items of the standardized Alzheimer´s Disease Cooperative Study-Activities of Daily Living (ADCS-ADL) instrument are used to gather data on activities of daily living of persons with cognitive impairments. Data is provided by informal caregivers. Baseline (t0) and follow-up data (t12, after 12 months) is compared.

Results: A subsample of PwD (N=103; x=76,9 years; 48,5 % female) who were assessed at t0 and t12 are considered. Relatives stated that 63,7% of PwD talked about current events at t0. At t12 42,2% reported, that the PwD had talked about current events. 74,8% of PwD got around outside of the home in the past 4 weeks, at t12 73,8%. However, the number of PwD who needed assistance to leave the house increased from 16,5% to 28,2%. In all, the number of PwD who performed a hobby or game decreased from 60,4% to 45,5%. The percentage of those who went shopping in the past 4 weeks declined from 51,5% to 45,5%, and those who kept appointments or meetings with other people (for example relatives, doctor, hairdresser etc.) from 63,7% to 56,9%. Use of public transportation decreased from 25% to 19,2%.

Discussion: The results show that participation in activities of daily living decreased over time. The use of public transport and the number of active motorists declined. The mobility outside of the home (walks, travel) remained constant, whereas PwD were more reliant on support after 12 months. Therefore, it is important to create an appropriate environment for PwD that enables active participation in activities of daily living as long as possible. This includes training for daily activities and the facilitation of access to public spaces, e.g. by dismantling barriers.

Funding: The research was initiated by the Bavarian State Parliament and is funded by the Bavarian State Ministry for Health and Care (StMGP). [grant number: G42-G8092.9-2014/10-146]

PO2.54. COACH - Cognitive Alzheimer Coach

FIEDLER Marc, JACOBSEN Wienke, LISCA Gheorghe, WOLF-OSTERMANN Karin

The aim of the project is to support cognitive impaired people as well as their caregivers. It introduces into their life social robots equipped with cognitive capabilities based on state of the art artificial intelligence. The idea is to enable people with dementia to live an active and self-determined life as long as possible by offering them a social robot which can perform more and more complex services for them. The following aspects will be addressed: cognitive stimulation, maintaining functional abilities, support for simple everyday activities, monitoring of medication and nutrition. A particular focus will be on increasing the acceptance of robots in personal space and as assistants. For this purpose, various approaches for human-robot interaction are going to be developed and tested in various settings (domestic environment, day care, nursing home).

One of the key side effects of the robot's presence in patient's life is the strongly improved connectivity of the patient with the medical staff and family. Through the robot being connected to the internet the family members and medical staff’s responsibilities can be strongly relieved. Auxiliary devices connected to the robot (smartphone, tablet, etc.) can provide information about the medical state of the patient and allow remote access to the patient through video or voice.

As a practical example a short show case with a robot can be shown at the conference.

The COACH project will be realised as a cooperation project with interdisciplinary partners (e.g. Alzheimer Association Schleswig-Holstein, University of Bremen, Blackout Technologies, IBM) in order to address technical questions as well as ethical, data protection or insurance aspects and to reach out to the target group in different contexts.

PO2.55. Playful motivation for daily multimodal training and diagnostics: The AktivDaheim game for people with dementia

FELLNER Maria, PALETTA Lucas, PANAGL Mariella, KÜNSTNER Manuela, STEINER Josef, LERCH Alexander, LERCH Marianne, LEFKOPOULOS Philipp, PSZEIDA, Martin

In the Austrian project AktivDaheim (active@home) a serious game was developed in a concept of multimodal training for people in early stages of dementia to stay at home as long as possible. Key element is an interactive mat sensing about the playful experience of a floor based mat game being performed within a social event of people with dementia. Sensed data are transferred to a Tablet PC equipped with a recommender engine delivering personalized exercise units to enable joyful experience regardless the participant’s progress in dementia disease. Personalised data from the game provide indications for appropriate tuning of weekly training sessions facilitated by informal caregiver using an easily configurable service on the Tablet PC. Home based, playful training units are performed using a gaze interface for the continuous monitoring of individual dementia profiles, such as, executive functions.

A key problem in developing knowledge about dementia and its impacting factors is the lack of data about the mental and physical processes as they evolve over time, and longitudinal quantitative studies about dementia are rare.

We developed software running on Tablet PCs that classifies eye movement data in daily sessions of serious game play and predicts MMSTE with reasonable accuracy.

A field trial was performed (N=25) using the serious game based training with weekly trainer visits and personal use meanwhile, and with a control group (N=25) who was trained without application of the serious games. The field trial was performed over a period of 6 months, involving evaluations on quality of life, usability experience, state of dementia (MMSTE, etc.) as well as executive functions tests (no/nogo, Trail making test). The success of the serious game is demonstrated quantitatively, for example, by increase of the quality of life of persons with dementia.

PO2.57. Social and health care support for families: contingency service

BOADA Mercè, HERNÁNDEZ Isabel, MAULEÓN Ana, ROSENDE-ROCA Maitée, RODRIGUEZ Octavio, ABDELNOUR Carla, SÁNCHEZ Domingo, GIL Silvia, SANTOS Miguel Ángel, VARGAS Liliana, CAÑABATE Pilar, MORENO Mariola, PRECKLER Silvia, RODRÍGUEZ Isabel, TÁRRAGA Lluís, GELONCH Antoni

Fundació ACE has a contingency service, which has been acknowledged by the Health Department of the Catalan Government for its outstanding good management in dealing with the enquiries from persons suffering from dementia, and their relatives or carers in a rapid and efficient way.

This service provides an immediate response to problems, queries, and eventualities related to the progression of the disease. It also contributes to alleviate the disease burden and the anxiety or worries of relatives and carers as they know where to find a rapid response when having any doubts or seeking guidance.

Furthermore, the existence of this Service has allowed the reduction of the demand for follow-up visits, thus contributing to minimize the referrals from primary care physicians to specialised health professionals and admissions to the hospital emergency services.

Since 2009 (implementation year) up to 2016, the Fundació ACE Contingency Service has conducted 26.920 interventions and unscheduled visits altogether. 10% of them were performed in face-to–face visits; 27% per e-mail; 50% on the phone and 10% by personnel of the Fundació ACE Day Care Unit.

Regarding the nature of the interventions, 6.097 of them had a social nature, 17.707 had a clinical approach and regarding the remaining 3.116 there are only partial data. Most enquiries have been made by a relative (83%), 6% by external health professionals and 2% by professionals of the Social Services.

The Fundació ACE team in charge for this Service is composed by 8 neurologists, 1 geriatrician, 3 social workers, and 2 administrative professionals who dedicate an average time of 30’ a day within their working hours. This means that 1.320 hours of effective work are dedicated yearly to this Service.

PO2.58. Validity and implementation of ‘Inlife’ an online social support platform for caregivers of people with dementia: a process evaluation

DAM Alieske, HANNAH Christie, van BOXTEL Martin, VERHEY Frans, de VUGT Marjolein

Background: Informal caregivers of persons with dementia have an increased risk to face social isolation in the course of the disease. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform ‘Inlife’ was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in dementia care networks.

Objective: A process evaluation will be performed to determine internal and external validity of the Inlife intervention.

Methods: Implementation, sampling and intervention quality will be evaluated by both qualitative and quantitative data from interviews with participants (n=10) and data on system usage. Analyses will be performed using descriptive statistics, deductive and inductive content analysis.

Results: Currently, the study is on-going until June 2017. Analysis will be performed following participants’ completion of the intervention after 16-weeks.

Conclusions: The results will provide insight in the prerequisites for successful implementation of social media interventions for caregivers of people with dementia. Additionally, the results from the qualitative interviews can identify barriers and facilitators that are associated with engagement in the Inlife platform.

PO2.59. Activity friend

EGGEN Siri Hov, RIISER Eline Sannes

More than 78,000 Norwegians have dementia. It is likely that over the next 10 years, that number will double. Research shows that by providing meaningful activities we can slow the progression of dementia. Even though the activity itself has been forgotten, the feelings the activity created are not. A typical line of thought is that activities that were once enjoyable, now has become harder to accomplish. These activities are still possible to do with support from others. Activity friend is a recreational program for people with dementia, and helps to strengthen the volunteer effort for dementia patients.

An activity friend is a volunteer engaging in various activities with a person with dementia. The activities are based on mutual interests; such as exercise or going to the theatre. The goal for this program is to provide more meaningful and positive experiences in an everyday setting.

Activity friend is organized so that municipalities sign a collaborative agreement with Norwegian Health Association. Norwegian Health Association has developed the systems and tools needed for the local authorities to successfully run the program. This includes training seminars, collaboration agreements, registration systems, and material. The program is nationwide, and as of today, more than 150 municipalities have established the Activity friend program. Through this program, more than 1500 people are activity friends for people with dementia. Volunteers are trained and guided. Together we make life better for people with dementia.

PO2.61. Key stakeholders’ perspectives on respite services for people with dementia: a qualitative systematic review

O’ SHEA Emma, FOX Siobhan, TIMMONS Suzanne, O’ SHEA Eamon, IRVING Kate

Objective: To understand key stakeholders’ experiences of respite services for people with dementia, and their perspectives on service development.

Method: A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980 – 2016, English) with fixed search terms relating to ‘respite’ and ‘dementia’, following PRISMA guidelines. Noblit and Hare’s approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a ‘line-of-argument’ was developed.

Results: In total 23 papers were reviewed, which described 20 independent samples, across 12 countries. The views of 889 participants were synthesized (13 PwD, 690 carers, 44 service providers, 52 front-line staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) carer restoration.

Synthesis: While there was broad agreement around the key areas for service improvement across the range of stakeholders, there was clear divergence around the level at which they should be implemented, particularly between clients (located improvement at service-level) and service providers (located improvement at systems-level). Furthermore, a level of organizational tension was evident between front-line staff and management in respite services, impeding the organizational cultural change necessary to facilitate service development.

Conclusion: Service managers must endeavor to build organizational capacity to facilitate restorative respite experiences for carers and PwD, firstly by minimizing within-service organizational tension, and secondly, by leading on and fostering a collaborative solution-focused culture of care, which values and supports front-line staff to deliver flexible and responsive care, in line with clients’ individual needs and preferences.

PO2.62. Dementia prevention: what we know and how to make it stick

HEERDT Christian

Much research on the topic of dementia prevention has been done in the last couple of years. Even so there is much more we could and should learn from further studies there are at least some facts on dementia prevention by now that we can fairly rely on. Mostly those facts are based on either risk factors of dementia like smoking or on aspects of health promotion like physical activity. A variety of intervention programs have been launched and funded as well. The question that remains unanswered however is: how to make it stick? The long-lasting implementation of “good” habits in peoples’ everyday life remains one of the biggest issues in public health promotion. This lecture will therefore give a short summary on what we know and don’t know about dementia prevention at first. After that the challenge of achieving long-lasting change in human behaviour will be examined. In the end one example for a community based approach will be given. In 2016 the Federal Initiative Dementia-Service NRW focused its ressources on the topic of dementia prevention. The Federal Initiative Dementia-Service NRW is a network that started in 2004 to improve the living conditions of people with dementia and their relatives. After a period of information gathering a working group has been established. This working group developed a community based concept of dementia prevention using a broad variety of interventions (the so called “micor-inversive interventions”) that where specifically designed to address long-lasting behavioral change and focus on a community setting.

PO2.64. Dependent independence: a new paradigm in the care and support of people living with dementia

CHRISTIE Julie

This paper reports on findings from the author’s PhD research with six dyads of a person with dementia and their respective social worker. Many people ageing with dementia will come into contact with social workers. Although there is a developing professional knowledge base in this area, until recently the complexity of social work in the field of older people with dementia has arguably been underestimated or ignored. The potential for dementia to disrupt communication and stories of self can make relationship based social care more difficult to realise in practice. This research explored the verbal accounts of social workers as they talked about their work.

Within the accounts there appeared to be recognised language cues to reflect the implementation of values in action.  Use of the word independence was one such example. Independence featured in the social work accounts as an aspiration of the practitioner; as an indicator of how well the person was coping with their dementia; as an indicator of how much support was required; and as an outcome of the social worker’s intervention. According to the Oxford Dictionary, independence or the state of being independent is where one is free from outside control and not subject to another’s authority. However, this word was frequently used in situations that implied outside influence on the person and or the actions undertaken. This new state of dependent independence was applied by social workers to people with dementia. This use of language could signify conflict in the social work task around independence as the ideal and the unspoken worry of people with dementia as ‘risky people’. This paper highlights the ways in which language and practice can be combined to promote human rights and at the same time to infringe on them.  Through exploring these issues, we can provide a better work and care experience for all involved parties.

PO2.65. DESKK - Development of a dementia specific respite care concept for people with dementia and their family caregivers with scope on mobility and counseling

HEINRICH Steffen, CAVAZZINI Christoph, HOLLE Bernhard

Background: Caring for people with dementia (PwD) is often challenging for family caregivers. The compensation of functional limitations of the PwD and insufficient use of support structures are important reasons for this situation. Mobility programs have the potential to delay functional decline with dementia and specific counseling interventions for family caregivers may help to identify support structures and therefor build a sustainable family care arrangement. Respite care is a common used service in dementia care arrangements. However, its potential for mobility improvement and counseling interventions is widely unknown.

Aim: Study aim is the development and implementation of a mobility training program for PwD in respite care to delay their functional decline. Furthermore, an individualized counseling intervention for family caregivers will be developed and performed to support the dementia care after returning home. The concept will be evaluated with respect to its usability and implementation requirements for clinical practice.

Methods: A pilot based, quasi-experimental evaluation study will be conducted in a specialized respite care facility for PwD. Qualitative and quantitative data will be collected and analyzed with a mixed methods triangulation design approach.

Status/Conclusion: Intervention parts related to the mobility- and counseling program have been extracted literature based and a first concept draft was developed. Now, the concept materials are under review by independent experts including scientists and respite care staff with scope on its scientific clearness and usability in clinical practice implementation. Based on this feedback, the concept will be optimized before program implementation. The concept will be described in a user-friendly practice manual for dissemination into clinical routine after successful program evaluation. 

PO2.66. Effects of exergaming in people with dementia: a systematic literature review

VAN SANTEN Joeke, DRÖES Rose-Marie, HOLSTEGE Marije, BLANSON HENKEMANS Olivier, VAN STRATEN Annemieke, DE VRIES Ralph, VAN RIJN Annelies, MEILAND Franka

Background: Physical exercise has positive effects in terms of physical fitness, daily functioning, general health and well-being. However, people living with dementia hardly perform physical exercises on a regular basis. Exergaming (exercise & gaming) is an innovative, fun and relatively safe way of exercising in a virtual reality or gaming environment, and is feasible and enjoyable for people living with dementia. A systematic literature review was performed to assess the known effects of exergaming compared to treatment as usual on physical, cognitive, emotional, and social functioning, and quality of life in people living with dementia and their informal caregivers.

Methods: The databases of PubMed, Embase, Cinahl, PsycINFO, the Cochrane Library, and the Web of Science Core Collection were all searched systematically by two independent reviewers. Only (randomized) controlled studies or meta-analyses were included and there were no time or language restrictions. Furthermore, the lists of references of included studies and relevant reviews were manually searched for additional relevant studies.

Results: Three small scale studies met our inclusion criteria and were included in this review. In two studies the intervention consisted of exergaming (X-torp and Wii-Fit) and in one of a combination of exergaming (Fit for all) and a (dual) cognitive task. There were no statistically significant positive effects of exergaming compared to treatment as usual. No studies were found that assessed effects on social functioning or on the informal caregivers. Some statistically non-significant benefits of exergaming were found in people living with dementia, such as physical fitness.

Conclusion: Few and methodological weak studies were found that assessed benefits of exergaming within people with dementia and their informal caregivers. Problems were the small sample sizes and use of non-dementia control groups. Well-designed studies are needed to examine the effects of exergaming on both people with dementia and their informal caregivers.

PO2.67. Development and validation of a scale to assess knowledge about home hospice care for Alzheimer's disease: The Alzheimer's Disease Home Hospice Knowledge Scale (AD-HHK-S)

SELA-KATZ Pnina, WERNER Perla

Background: Home hospice care has been increasingly recommended as one of the main care alternatives available at the end of life of persons with Alzheimer's disease (AD). However, the percentage of persons with dementia dying at home is low. Lack of knowledge about home hospice may be one of the reasons for it.

Several instruments are available to assess knowledge about hospice care, but none address specifically knowledge about home hospice for persons with AD.

Aim: To develop and validate the Alzheimer's Disease Home Hospice Knowledge Scale (AD-HHK-S).

Participants: One hundred and seven family caregivers of persons with dementia (mean age = 71.2; 73% female) participated in the study.

Results: The AD-HHK-S included 28 true/false items assessing three areas of knowledge: knowledge about hospice, knowledge about home hospice, and knowledge about home hospice for AD. Good internal reliability was found for all domains, with Cronbach α ranging from 0.72 to 0.85. Good face, construct, and predictive validity were found.

Implications: The AD-HHK-S is a valid and reliable tool to assess knowledge about hospice care in the area of AD.

PO2.68. “In-Forma Mentis” project: the combined effects of cognitive and physical exercise in preventing cognitive disorders

BEVILACQUA Petra, TAGLIAFERRI Daniela, BERGAMINI Lucia, FABBO Andrea

With the aging of the population, there is continued emphasis on finding interventions that prevent or delay onset of cognitive disorders of aging. Italian country is experiencing aging population and increate longevity, and the incidence of dementia is projected to soar. Pharmacological interventions have proven less effective than hoped in this capacity and a greater emphasis has therefore been placed on understanding behavioral interventions that will positively impact dementia risk. In the absence of a therapeutic drug, non-pharmacological preventive approches are being most important. One of these intervents is regular partecipation in physical activity or mental exercise. There is now strong evidence that links regular physical activity or exercise to higher cognitive function, decreased cognitive decline and reduced risk of Alzheimer’s disease or Dementia (Brown BM, 2013; Jak AJ, 2012).

The In-forma Mentis project represents an attempt to integrate two non-pharmacological interventions to stimulate both cognitive functions and physical abilities. The project envisages a psycho-educational course of 8 meetings of 2 hours each conducted by a psychologist and a physiotherapist. At each meeting a memory-related topic is treated and both cognitive and physical exercises are performed.

The pilot project provided for model testing for a group of 45 people, aged 63-88, without cognitive decline. The participants are submitted at a batch of cognitive evaluation, functional and emotional, composed by ACE-R, MMSE, GDS-15, MAC-Q,SPPB, at the beginning and at the end of the cycle of meetings that should last 2 months. At the end of the meetings a final satisfaction questionnaire will be delivered to the participants. The results are very promising and future research can facilitate the expansion of this project and deepen the current observations.

PO2.69. And then there were three: incorporating a live-in caregiver into the home of a couple where one spouse has dementia

HERZ Michal Karen

In the UK, two thirds of people living with dementia live at home (Prince et al., 2014). In Israel, where the present research was conducted, people living with dementia are entitled to have a full-time live-in caregiver. These live-in caregivers are migrants on a work visa specially designated for caregivers. This research focused on the transition from a couple to a triad comprising the live-in caregiver, spouse, and person with dementia, using the concept of mentalization to explore the dynamics of interpersonal relationships between the three people. The aim was to understand what creates a good care environment for the person living with dementia and a good quality of life and satisfaction level for all members of the triad.

Methods: Following the literature review, and based on the Interpretive-Phenomenological Approach (Smith, 1996) a semi-structured interview protocol was constructed. This was used as a basis for interviewing 5 triads. Interviews were recorded and transcribed for 18 interviews (13 interviews and 5 reflective essays). Analysis was conducted using Malterud’s Systematic text condensation, that adopts a phenomenological approach (Malterud, 2012).  

Results: The analysis formed a basis for a new framework to conceptualise the triadic relationship. The term which represents this framework is Triadic Attentiveness.

Triadic attentiveness (TAT) reflects the idea that in order to provide good support for all members of the triad, attentiveness should be encouraged at all times for all three members, each according to their own ability. Triadic attentiveness is composed of four elements: mutual respect, challenges, ambiguity, and identifying the third person in the triad.

Conclusion:  In a state of triadic attentiveness there is genuine interest in understanding the different and changing needs of the other members of the triad, but it also represents the ability to be attentive towards one’s own needs and behaviour.

PO2.70. Farm based day care services – a prospective, mixed method study of people with dementia and their next of kin

ERIKSEN Siren, PEDERSEN Ingeborg, TARANRØD Liv Bjerknes, GARSHOL Bjørnar Finnanger, IBSEN Tanja Louise, KIRKEVOLD Øyvind, ELLINGSEN-DALSKAU Lina Harvold, STRANDLI Elin, PATIL Grete Granli

Background: Care farms offer adapted and quality based welfare services using farm-based resources to promote health. Service at care farms is described as empowerment-oriented and coping-based. The research on care farming for people with dementia is spares. However, one study found that people with dementia had higher intake of energy and fluid, and activities happened more frequent, were more individually tailored, happened more often outdoors, and included a higher level of physical activity at care farms compared to ordinary day care. One main governmental strategy is to establish day care services for the target group in all Norwegian municipalities. To this day 35 farms offer day care services for persons with dementia. More knowledge is needed to increase the number of such services.

Aim and research questions: The main objective of this ongoing study is to explore and gain knowledge about the services offered by the farm, people with dementia attending the services and their next of kin. Three main research questions have been identified: (1) What are the characteristics of farm based day care services for people with dementia? (2) What are the potential benefits of farm based day care services for people with dementia and their next of kin over time? and (3) What are the experiences of farm based day care services for people with dementia and their next of kin?

Methods: The study is planned as a prospective study and organized in several sub-studies. We will triangulate methods to ensure valid data and balanced knowledge, and both an empiric and a constructivist view on knowledge will be applied as theoretical foundation (table 1).

This study is a part of a larger project also investigating the perspectives of the farms and the farmers and municipalities offering farm based day care services for persons with dementia.

PO2.72. Educate to awareness

MARANO Francesca, FRANCONE Caterina, De ROSA Giuliana, SANTILLO Antonella, BRUNO Patrizia, Amnesia

Introduction: The association A.M.N.E.S.I.A. has among its main objectives the one to provide support to the people suffering from neurogeriatric diseases, promoting pathways of cognitive-affective stimulation, through a team of neuropsychologists, educators and physiotherapists. This activity is carried out in “small groups”, considering the cognition-emotion unity. We present the case of A.C. a XX-year-old woman affected by frontal-temporal dementia, with behavioral disturbances such as sexual disinhibition, psychomotor agitation and wandering.

Methods: The patient A.C., 84-year-old, has undergone an individual re-educational-occupational therapy, started in March 2016, entrusted to an educator. In parallel with the therapy, the educator took care of the caregivers, especially of the patient's daughter, who was not aware of her mother's stress condition, and therefore with a tendency to have inadequate expectations of herself and her mother, compromising communication and stressing the care relationship. Therefore, the educator has developed pedagogical strategies with the aim to find the potential of the patient and the communicative channels with which to operate, to start an educational path and an awareness path addressed to her daughter, through emotional engagement and, subsequently, in a more structured way through guidelines.

Results: The empathic and emotional engagement between the educator and the caregiver has generated greater readiness for listening by the caregiver and a better knowledge of her and her mother's resources and limits. As evidenced by the observational grids made ad hoc to monitor the overall clinical picture, there was a better communication between patient and caregiver and a less stress for both.

Conclusions: The progressive and careful knowledge of the patient has provided appropriate tools to the caregiver, favoring a better quality of the emotional relationship between mother and daughter, consolidating the self-esteem of both.

PO2.73. Seniors to help seniors- MyMate, an integrated ICT-based solution to create a social community among seniors

STEREA Stefan Alexandru, MARZAN Mircea, SPIRU Luiza, CONSORTIUM MyMate

Background: The technological and non-technological measures, dedicated to support the seniors care in daily life, with the purpose to improve their quality of life by increasing the autonomy and by preventing the institutionalization are various and complex.

Methods: In this train of events, the MyMate project proposes the development of a sustainable environment centered around using an ICT-based solution with the aim to create a network of motivated and healthy elderly volunteers (secondary end-users) who will play the role of  “human sensors” in the implementation of “care in the community” programmes for the seniors diagnosed with neurocognitive disorders (primary end-users) with the support of the stakeholders- experienced professionals (tertiary end-users): reconciles increased demand with limited resources, increases and facilitates the supply of formal and informal care for older adults, reduces the demand for care through prevention and self-management, supports the shift towards better care at home and in the community.

Discussion: At this point of the project, MyMate project organized some workshops and a focus group which revealed the most important needs and missions of the seniors (primary and secondary end-users) and the stakeholders. Also, it identified the most important problems in creating a sense of community among elderly people. All the end-users revealed through the focus group discussion the high potential as a social impact of the MyMate platform.

PO2.74. The Rosemary diary: a tool for daily life

FABBO Andrea, BEVILACQUA Petra, BRUNO Patrizia, GUIDI Laura, PIRANI Alessandro

Background: the “Rosemary diary” is a tool that can help elderly people, family caregivers and professionals as general practitioner or nurse to plan and carry out the daily activities like a game and to monitor some informations about the quality of care. This simple and pleasant “reminder agenda” is useful for older persons at risk of cognitive impairment (CDR < 1)to build the track of time and monitor the right implementantion of daily tasks and meaningful activities.In facts the recommendations for management of early cognitive impairment by IAGG (2015) provide advice regarding lifestyle practices such as “Mediterranean” or similar diet, physical exercise, intellectual activities and cognitive stimulation (CST) ; all elements of this are present in the diary.Description: The diary has been planned to be used without instructions, but simply using intuition.The daily use of The Rosemary is facilitated with pictures and icons that accompany simple questions. The first part makes reference to the traditional CST and particularly the   Reality Orientation Therapy: day, month, year, seasons, degree. The second part collects the signals and symptoms of daily life: mood, medications, nutrition, hydration, constipation, sleep, fitness, mental exercises, pain.Every 7 days some pages have been inserted as a reminder for the weekly events, like grocery shopping, payments, doctor's visit and for the self-evaluation of physical and mental training done during the week; two pages have been reserved for medications, their commercial names, instructions of use, time and method of assumption, number of spare boxes. At the end of “The Rosemary” there are some useful pages regarding advices for physical activities, games for memory raining, curiosities, address and telephone book, consulted and suggested web. Conclusions: The Rosemary diary is a simple and economic tool, a pair of "memory glasses", that helps to maintain, organize and consolidate memory for every daily activityIf the initiative continues to have success, a mobile app of the diary will soon be available.

PO2.75. Gentle Persuasive Approach (GPA) in hospital dementia care

HUNG Lillian, TABAMO Jenifer

Literature suggests that patients living with dementia in the hospital are complex to care for, and staffs in all disciplines are underprepared to meet their unique needs. The Gentle Persuasive Approach (GPA) in Dementia Care is an evidence-based Canadian developed curriculum. The one-day workshop offers practical knowledge to support staff in applying person centred dementia care. This poster highlights the benefits and limitations of introducing GPA in acute medicine and mental health units at a large Canadian Hospital. We used mixed methods to evaluate the GPA education program. After the GPA workshop, 200 staff completed the standardized GPA program evaluation survey. Using semi-structured open-ended questions, we interviewed 22 staff that completed the GPA education. Staff responses were thematically analysed. Eighty-five percent of staff that attended the GPA workshops reported that they had no previous formal dementia care education. All staff agreed that the GPA course would improve how they care for people with dementia in the hospital. Results of the staff interviews revealed useful information for future facilitation of GPA implementation in the hospital setting. Supporting the facilitators and addressing limitations around GPA implementation can further improve the capacity for staff to successfully care for patients living with dementia in the hospital.

PO2.76. Dementia special care units in german nursing homes – study protocol of a realist evaluation

PALM Rebecca, HOLLE Bernhard

Dementia Special Care Units (DSCU) provide care for people with dementia who exhibit complex psychiatric symptoms and severe behavioral problems like aggression or wandering. DSCUs are frequently operated as segregated units within a nursing home; they offer a dementia-specific activity program, the staff is specially trained and the environment is adapted to the needs of people with cognitive impairments. DSCUs are implemented in approximately 50% of all German nursing homes. Despite their high implementation degree, evaluation studies are scarce.

We will conduct a realist evaluation that aims to identify and explain which aspects of DSCUs are working, for whom, and under what circumstances the outcomes intended are reached.

This multi-method study will be conducted in 4 phases. Phase 1 will lead to the development of an initial program theory that contains testable descriptions of the context, mechanisms and outcomes (CMOs) and proposes assumptions about their relationship. Therefore, a rapid realist review will be conducted and enriched with data that were generated in expert interviews with program stakeholders. In Phase 2, a survey study will be used to describe the context of DSCUs. Based on the descriptive data distinctive types of DSCUs will be developed and further investigated within a multiple case study. In Phase 3, empirically derived CMO-configurations will be compared within a cross-case analysis to scrutinize pre-developed assumptions of what works, for whom and under what circumstances. As a result of the synthesis process, the initial program theory will be refined and generalized (Phase 4).

The results of the study are intended to inform providers of DSCUs and policymakers about contextual aspects that are needed to facilitate an effectively working DSCU and which mechanisms enhance or hinder their success. The results will also inform about the question for whom which DSCU model may be the most beneficial.

PO2.77. Using touch-screen technology to enable arts and crafts for people with dementia in residential care

CAVALCANTI BARROSO Aline, RAI Harleen Kaur, SCHNEIDER Justine & ORRELL Martin

People with dementia that live in care facilities can experience loss of independence and autonomy, having restricted access to meaningful activities. These could be reasons that contribute for a decrease in their quality of life, and being perceived as loss of control of their own lives. Through visual arts related activities, as painting and drawing, these people can experience the feeling of control, while stimulating cognition and social abilities, and be reminded of their creativity and identity. However, could be some difficulties to this kind of activity be performed in care facilities, as lack of proper facilities, art materials, and time from the staff to coordinate the activities. A possible solution for these barriers is by using creative art apps in touch screen technology. Art creation activities in touch screen technology could show the same effects of art creation with regular tools, as it also makes people engage and stimulate cognition and creativity, but without the need of specific art materials and facilities. The aim of this research is to identify the best touchscreen apps on digital arts for people with dementia living in residential care. An online cross-country survey will be used to check the use of technology and which art apps are more popular and used in care homes in the UK, Sweden and the Netherlands. People living with dementia will participate on pilot study using the most promising apps in an experimental design trial, to check the intervention effects on overall well-being, quality of life and cognition.

PO2.80. Singing for the Brain, spreading the benefits across countries

CAMPBELL Zoe

The Alzheimer’s Society Singing for the Brain’® was first piloted by the Society and Dr Nicolas Bannan of the University of Reading in 2003. It has run from then up to the present time.

People with dementia, for whom spoken response and communication in general increasingly becomes problematic, have been shown externally, and through the work and research facilitated by Alzheimer’s Society and Dr Bannan, to be actively involved in vocal expression through singing, especially with well-known and familiar songs.

Over the last 14 years, we have developed a successful service model that has been shown to be extremely popular, successful and replicable on scale. Our Singing for the Brain® services are accessed by approximately 5,000 people each month. An evaluation conducted in 2012 showed that: “People who use the Singing for the Brain® services felt that the service had a positive impact on their lives and reported improvement in confidence and communication.”

Alzheimer’s Society Singing for the Brain® follows a set, pre-defined model. Sessions take place weekly or fortnightly in order to be perceived and

remembered as regular events. Each session includes a range of activities including vocal warm-ups and singing a variety of familiar and new songs covering a wide emotional range delivered by facilitators trained following an approved programme.

Sessions are planned to incorporate social interaction, peer support, engagement and active participation.

In 2016 the Alzheimer’s Society supported two organisations in Singapore to develop their own versions of the service. This has shown that we can successfully transfer the model to other countries and culture. We would be willing to speak to European colleagues who are interested in adoption the Singing for the Brain ® model.

PO2.81. Best practice recommendations to enhance access to formal community care services

RØSVIK Janne, MICHELET Mona, VERHEY Frans, DE VUGT Marjolein, MEYER Gabriele, WOODS Bob, WIMO Anders, SELBÆK Geir, IRVING Kate, GONCALVES PEREIRA Manuel, ZANETTI Orazio, on behalf of the Actifcare consortium

Background and aims: People with dementia and their informal carers are found to use community services, such as home support, day care, respite care or counselling less often than medical services even though these services may be very useful in their situation. Studies have found that this group often do not receive services of the type and quality that they need, and that they experience much difficulty accessing home- and community based services. The JPND project Access to Timely Formal Care (Actifcare) has investigated factors related to inequalities in access to services.

The aim of work package 5 in Actifcare was to develop best practice recommendations to enhance access to community care services. 

Methods: The participating Actifcare teams suggested statements describing measures to enhance access based on the deliverables from the other Actifcare work packages as well as their own expertise.  The received statements were processed and phrased into 72 statements for rating by 82 European experts in an email based Delhi process with two rounds of rating. The experts are professional scientific, clinical and administrative experts as well as experts by experience, i.e. people with dementia and informal carers. The European Working Group for People with Dementia provided valuable feedback in the process and participated as experts in the Delphi process.

Results: Based on the statements that reached consensus in the Delphi process, 26 Best practice recommendations were made.  Measures were taken to safeguard the perspective of the experts by experience in this process. The recommendations are divided into two categories: measures to enhance access directly and measures to enhance access indirectly. 

Recommendations for the implementation of the Best practice recommendations have been made for each of the participating countries; Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and United Kingdom.

The poster will present the 26 general recommendations.

Connecting People, Connecting Support

PO2.82. Transforming the allied health professional’s contribution to supporting people living with dementia in Scotland

HUNTER Elaine

Background: This poster will share the key elements of the policy document “Connecting people, connecting support” outlining a visual executive summary. This policy fulfils a specific commitment in Scotlands National Dementia Strategies (2013, 2017) and is mapped against Alzheimer Scotland model of integrated community support (2012).

Aim: “Connecting people, connecting support” is about how allied health professionals (AHP’s) in Scotland can support people living with dementia to have positive, fulfilling and independent lives for as long as possible. The aspiration is that people living with dementia have access to a range of AHP’s in their own home, in a homely setting or in hospital, regardless of age or place of residence, early in their diagnosis and throughout their illness

Methods: The poster will share the evidence to support an approach to practice for AHP’s when working with people living with dementia, with a visual representation of the three main sections of the policy report:

  • Introduction, providing the professional and policy context including the key principles of human rights and evidence collected to support the required changes to AHP practice.
  • The AHP contribution to maximise the AHP role to high-quality, cost effective dementia services that are tailored to the needs of individuals.
  • Guiding principles, ambitions and actions to support local integration and delivery will be outlined and summarised.

Conclusion: Connecting people, connecting support is the first policy of its kind for Scotland however the key messages will be of interest to other countries that are transforming dementia services. No service, profession or group of professions can transform dementia services alone. Services are much more effective when they are coordinated, integrated and working in tandem with people living with dementia and this policy calls for a multidisciplinary, multi-sectoral approach in which AHPs play a unique part.

References:  Alzheimer Scotland 2012 Delivering Integrated Dementia Care: The 8 pillars Model of Community Support, Scottish Government 2013 Scotlands National Dementia Strategy, Scottish Government 2017 Scotlands National Dementia Strategy

PO2.83. The provision of Post Diagnostic Support information at time of diagnosis – a co-design Improvement Project in Scotland

McKEAN Alison

Background: High quality post diagnostic support (PDS) in dementia remains a national priority area, which will be reflected in Scotland’s third National Dementia Strategy1 and the Allied Health Professional Dementia policy, Connecting People, Connecting Support (2017)2.  This also reflects the local picture within NHS Dumfries & Galloway, where high quality PDS is a key priority.

The diagnostic and PDS pathway was process mapped across Dumfries & Galloway.  This revealed that people with dementia (pwd) (and their families) are not receiving equitable provision of PDS information at time of diagnosis.  Additional anecdotal evidence is also in line with these findings which would appear to be reflective of the national picture.

Method: As part of the Scottish Quality and Safety Fellowship, a piece of Improvement work was commenced around PDS in Dumfries & Galloway.  Using the Model for Improvement3, a multidisciplinary team was established:

Project Aim: By the end of June 2017, everyone diagnosed with dementia via the Psychiatry Service in the Stewartry locality of Dumfries & Galloway will receive high quality person-centred post diagnostic information at time of diagnosis (in line with Promoting Excellence Best Practice4)

Progress to date

  • Shadowing the person’s (and family’s) experience of diagnosis and initial PDS information.
  • Scoping of current PDS resources both locally and nationally.
  • Gathering of qualitative data from pwd and families in their preferred format including questionnaires, Emotional Touchpoints and storytelling, in order to enhance understanding of priorities.

Next steps: Based on what has been discovered, PDS information will be co-designed with the project team, pwd and families.  This will be available at time of diagnosis in order to support the pwd and family towards a positive outcome.

It is envisaged that improvement in the person’s experience at the first stage of their PDS pathway should have a positive impact on their dementia journey.

PO2.84. Investigating the understanding of technology use for people with dementia and caregivers: an exploratory study

ZAFEIRIDI Paraskevi, DUNN Rosie, PAULSON Kevin, WOLVERSON Emma, THORPE Jonathan

The increasing number of people with dementia (PwD) highlights the important role of technology for supporting bigger numbers of PwD and caregivers (Meiland et al., 2012). Technology-based interventions, such as websites with educational information and web-based social forums (van der Roest, Meiland, Jonker & Dröes, 2010), have been developed to improve the overall quality of life and wellbeing of PwD and their caregivers. In a similar way, serious games are developed for physical and cognitive rehabilitation (Rego, Moreira, Reis, 2010). Researchers have also explored barriers and facilitators affecting the engagement of PwD and caregivers with technology, such as the unfamiliarity with technology (Archer, Keshavjee, Demers & Lee, 2014). However, older adults are wiling to engage with technology as long as they understand the potential benefits in their lives (Mynatt & Rogers, 2001). Studies exploring the opinions and perceptions of older adults and PwD about technology are mainly focused on specific interventions, where end-users are involved in the development of technology-based interventions in order to evaluate them. The aim of the present study is to explore the understanding of PwD and caregivers about the potential benefits of technology in physical health, psychological wellbeing, treatment adherence, and in cognitive training. Following an educational workshop on the different uses of technology, data from focus groups with PwD are caregivers will be collected and analysed with qualitative analysis, such as semantic and content analysis. The results will show perceptions about technology and about games for physical rehabilitation and cognitive training. These findings will inform research about engaging PwD and caregivers with technology-based interventions and motivate them to use technology as part of their treatment.

PO2.85. Electronic documentation as a tool to facilitate the care of people with dementia in nursing homes: an integrative review of the literature

SHIELLS Kate, HOLMEROVÁ Iva, ŠTEFFL Michal

Electronic documentation has been introduced into nursing homes with the aim of reducing time spent on documentation, improving documentation quality and increasing transferability of information, all of which should facilitate care provision. However, previous studies have shown that electronic documentation may be creating new burdens for staff. Furthermore, little research has explored how electronic documentation may specifically facilitate the provision of care for people with dementia.

This integrative literature review has synthesised 13 quantitative and qualitative articles that explore the use of electronic documentation in nursing homes in order to answer the question: how is electronic documentation facilitating or hindering the provision of care for people with dementia in nursing homes?

Thematic synthesis of the literature resulted in seven analytical themes related to care provision, including: time for direct care, retention of staff, and person-centred care. For electronic documentation to facilitate care provision in nursing homes, consideration should be given to the type of device and applications that are most appropriate for the nursing home environment. For example, the importance of technology that can be accessed at the point of care was highlighted, as well as an application that allows for the management of behavioural symptoms. The content of electronic documentation should also be taken into account. In particular, a section which allows for the detailed recording of information about residents’ history may be invaluable for dementia care.

This review concludes that further research is required to identify the optimal characteristics of an electronic documentation system for use in nursing homes, as well as to explore the specific ways in which electronic documentation could facilitate the provision of care for people with dementia living in nursing homes.

PO2.86. Alzheimer Society of Finland’s Everyday Attorney project to support people with memory-related diseases and their relatives

LUONSINEN Mari

Project background: The memory associations in Finland have noticed that people with memory-related diseases and their families need well-timed support, guidance and counselling also in legal matters after the diagnosis. There is much legislation concerning people with memory diseases, but it is very fragmented and thus hard to find.

Project goals:

  • To develop and reinforce local memory associations so that they can act as stronger spokespersons for people with memory diseases and advocate their rights.
  • To instil the operational models of proactive legal preparation in memory associations.
  • To provide people with memory diseases a safe, valuable life that they can lead their own way, as guaranteed by law.

What is the project about?

Legal training (an educational event held at a local workshop or an online training course) will be organized for all local memory associations during the project.

Comprehensive and diverse guidance material, brochures and online material will also be produced.

Project results and impact: As a result of the project, memory associations will have a strong role of Everyday Attorney to play in their respective areas.

The know-how and expertise of local memory associations in providing guidance and counselling in legal matters for people with memory diseases and their relatives will be greatly improved.

People with memory diseases and their relatives will be informed of the possibilities and methods for proactive legal preparation, and their self-determination will be strengthened.

Memory associations will have correct and up-to-date legal information about questions related to the everyday life of people with memory diseases.

The impact will be that the legal status of persons with memory diseases will improve and their self-determination will be realized.

PO2.87. Independent living with dementia? What are the challenges?

BERGHUIS Leta, KUIPERS Sonja, VROOM Anna, WIEGERSMA Alina, FINNEMA Evelyn

Background: In reaction on the growing number of persons with dementia, Heerenveen, a town in the Netherlands, strives to become dementia friendly. The alderman asked the NHL University of Applied Science to do research on the following question: “What do people with dementia in Heerenveen need to live independent and what do relatives need to support them?”

Aim:

  • Conducting a unique project in which 18 international bachelor students actively take part
  • Gain insight in the needs of people with dementia and their informal caregivers to develop interventions to become a dementia friendly community

Method: 18 International bachelor students care and social work did qualitative descriptive and explorative research. In the process of design thinking were three iterations, this helped students to gain insight and explore needs. People with dementia, informal caregivers, social-workers, district nurses, policy-makers and citizens of Heerenveen participated in this study.

Results: Stakeholders revealed three themes: taboo, peer support groups and shopping in stores. Students experienced all kinds of reactions and became aware of the challenges there are in creating dementia friendly areas.

Conclusion: When people with dementia should be as long as possible at home, it is important to create awareness within communities. First, it is important to give education. Secondly, showing short videos could be helpful. In addition to the peer support groups and at the same time, a creative session for people with dementia, this can decrease the worries of informal caregivers.

Becoming a dementia friendly community is not easy to attain and it certainly not ends after this project. It needs commitment from the community to change. This starts with enthusiasm and feeling sense of urgency of a few involved persons, subsequently it takes many persons to change the way people react and act to people with dementia. This is the start of it.

PO2.88. Supporting people with young onset dementia and their families: An evaluation of a training course for care workers

SMITH Raymond, OOMS Ann, GREENWOOD Nan

In the United Kingdom (UK) it is estimated that over 40,000 people are currently living with young onset dementia (YOD). Research suggests that family carers of people with YOD experience high levels of burden, stress, depression and psychosocial issues which have a negative effect on their quality of life. UK Government policy has attempted to address these concerns by improving workforce training to specifically include information on YOD for care workers. This presentation will report the findings of an evaluation of a training course for care workers who care for people with dementia in the community. Twenty-four care workers participated in the training which took place in London and Surrey, UK. The training had a significant positive impact on participants’ confidence in understanding the experiences and social care needs of people with YOD and their families. Participants also perceived that the training would help them improve their working practice by furthering their understanding of practical approaches to supporting and caring for people living with dementia in general. Additionally, participants reported many ways in which they perceived being able to specifically support and empower people with YOD. It was concluded that the training course improved knowledge and confidence for care workers on dementia care, and specifically in understanding how to support people with YOD and their families. Dementia specific training should be considered by service managers as a way of potentially increasing care worker job satisfaction and confidence in caring for people with YOD and their families.

PO2.89. Needs and quality of life of people with middle-stage dementia and their family carers when informal care alone may not suffice. Findings of the European Actifcare study

KERPERSHOEK Liselot, DE VUGT Marjolein, WOLFS Claire, WOODS Bob, JELLEY Hannah, ORRELL Martin, STEPHAN Astrid, BIEBER Anja, MEYER Gabriele, SELBAEK Geir, HANDELS Ron, WIMO Anders, HOPPER Louise, IRVING Kate, MARQUES Maria, GONÇALVES-PEREIRA Manuel, PORTOLANI Elisa, ZANETTI Orazio, VERHEY Frans, Actifcare Consortium

Objective: During middle-stage dementia formal care services are often introduced to augment the support of family and friends. The Actifcare study investigated the domains and level of needs of people with dementia and their families during the phase in which formal care is being considered and it also examined whether higher need levels are related to lower quality of life.

Method: From eight European countries, a total of 451 people with mild to moderate dementia who were not receiving formal care and their carers participated. Demographic data were collected, and needs were measured with the Camberwell Assessment of Need for the Elderly (CANE), Quality of life (QOL) was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.

Results: Needs were primarily expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5, and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL: for both the person with dementia and the carer QOL decreased as the number of needs increased.

Conclusion: The domains in which needs are expressed could be targets for interventions to support community-dwelling people with dementia and their carers. In addition, the perspectives of people with dementia, as well as their carers, should be considered when identifying and addressing needs in dementia.

PO2.90. Effects of distance-based psychoeducative interventions for family caregivers in dementia - an integrative review

LUZIO Diana

The effects of being a family caregiver often leads to high rates of burden and psychological morbidity (Brodaty & Donkin, ‎2009). Whereas, psychoeducational interventions show the most consistent short-term effects on all outcome measures (Sörensen, Pinquart & Duberstein, ‎2002) The aim of this review was to appraise the evidence for psichoeducation as an intervention to improve self-care outcomes for family caregivers of elderly people with dementia.

In this integrative review, a wide range of white and grey literature was examined. It was defined the 2010 to 2016 period to collect data about psychoeducative interventions and used the Whittemore and Knafl (2005) methodology. The review was guided by the question: Which distance-based psychoeducative interventions characteristics optimise self-care behaviours in family caregivers of people living with dementia? Literature was researched on Medline, Ebsco, ProQuest databases on March, 2017. To collect grey literature, research was made on RCAAP and Google Scholar. Five reviewers screened 2230 titles to find 111 relevant articles which were reviewed in detail to identify 9 studies that addressed the specific review question. PRISMA protocol was used to appraise quality of assessment.

Analysis process allowed to study characteristics and outcome measures of the interventions. Some main aspects that enhance effectiveness of psychoeducative interventions for dementia caregivers arose, related with individual or group approach, short or long-term, and the kind of contents that are included in interventions.

There is an array of characteristics that optimise the self-care of family caregivers of people with dementia, leading to reduction of psychological distress and quality of life improvement. These characteristics shall be taken into account in future psychoeducative interventions planning. 

PO2.91. Living well with dementia in creative communities of care

MCFADDEN Susan, EBERT Alexandria, MOORE Elle, BASTING Anne

We often hear that the majority of persons with dementia “live in the community.”  However, this raises a thorny question:  Where do the rest of the people with dementia live?  Why are those who relocate to residential care no longer considered part of the community?  Unfortunately, in many places, residential care housing is treated as invisible, as are the persons who live and work there. 

We believe this situation can change when the culture of residential care is transformed through creative engagement.  This poster argues that active involvement with the arts and improvisational techniques like the TimeSlips creative storytelling method can inspire new views of reciprocal care in residential settings.  Instead of thinking of residents with dementia as passive recipients of care, regularly scheduled arts programs like TimeSlips invite staff and family members to witness residents’ joy and care for others.

This poster offers a new model for residential care facilities by demonstrating how they can be creative communities of care.  We believe that links forged between person-centered care and creative engagement can enable people with dementia to hone and share their gifts of imagination, inspire others to see beyond their memory loss and recognize their strengths, and radically change the typical ways the public views residential care. 

In creative communities of care, various types of creative engagement (1) are infused into everyday interactions, (2) form the basis of structured programs, and (3) inspire community arts events that demonstrate the retained gifts and skills of persons with dementia.  Examples of all three are offered, along with descriptions of research that show how creative engagement positively affects the quality and quantity of staff/resident interactions, improves affect and communication among persons with dementia, and increases meaningful social connections in residential care settings. 

PO2.92. Multiple perspectives on ‘optimal’ timing of moving into a care home for people with dementia

COLE Laura, SAMSI Kritika, MANTHORPE Jill

Deciding if and when to move to a care home may be a difficult decision for people with dementia, family members, and professionals who support them, but there is currently limited evidence regarding how this decision evolves. Factors leading to the decision to move, the decision-making process, and the timing of the move are complex, and much remains unclear. The study aims to identify factors and drivers when deciding if and when a person with dementia should move to a care home; and to identify if there is an ‘optimal’ or best time. Using a phenomenological approach, we are currently interviewing social workers, people with dementia (subject to their capacity to consent), family carers, and care home managers. People with dementia involved in the study will have moved to a care home in the last six months; all other participants will have supported a person with dementia with the decision to move to a care home. Participants are being asked about their experiences and opinions of moving to a care home. Of particular interest are reasons for the move, factors affecting these decisions, and the timing of the move. Interviews are concurrently transcribed and analyzed using the principles of thematic analysis. Findings from the qualitative interviews with these four groups of individuals will be reported in full. At present, emerging findings from interviews with social workers indicate that managing risks and the safety of the person with dementia living in their own home are major factors in the decision making process. Next steps for research will be discussed, along with the study’s plans for impact and dissemination, which includes developing a factsheet to inform and help people with dementia, family carers and professionals with this decision.

PO2.93. Building the first alzheimer village in Italy planned opening January 2018

BARTORELLI Luisa, LEVI Stephanie, RAGNI Silvia

Introduction: Based on the belief that dementia is now a priority and considering the need to integrate health and social resources, an Alzheimer Village is being built in Rome, the first in Italy. This new complex will offer a normal life for people with dementia while ensuring protection and vigilance of the symptoms, going well beyond the old concept of the nursing home. The Village, with its streets and piazzas, is an innovative structure where residents can wander around by themselves, and is completely open to the outside world with caregivers, heath care workers, citizens of the local community all involved in this issue of dementia care.

Method: The Village is a community of houses, with 13 independent units for people with dementia in spaces that are relevant, pleasing and stimulating – “spazi di liberta”. Each unit houses six people, giving cognitive, affective and relational continuity in their cohabitation. The residents actively participate in the management of their own households (washing, cooking, cleaning) with a dedicated team of staff members. Activities are offered based on individual skills, encouraging maximum autonomy and contact with the outside world. In fact, there are clubs within the Village that are open to outsiders too, each with different activities (arts and crafts, music and other group activities.). The residents can make their own choices depending on their culture and preferences. There will also be a cafe, a mini-market, a restaurant and a theater which will be open to the neighborhood. Three kinds of life-styles are considered for each resident: cosmopolitan, traditional and urban. Each life-style will have a different setting with specific furniture and objects of daily life that are in keeping with their personal stories.

Conclusion: It will be very interesting to evaluate the results of this innovative process on quality of life in this new environment, compared with the classic nursing home.

 

 
 

Last Updated: Wednesday 25 October 2017

 

 
  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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