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PO3 - Innovative care

Detailed programme, abstracts and presentations

PO3 - Innovative care

PO3.1. RHAPSODY – Research to Assess Policies and Strategies for Dementia in the Young

JANSEN Sabine, DUBOIS Bruno, GAGE Heather, GRAFF Caroline, KURZ Alexander, de MENDONÇA Alexandre, SCHWERTEL Uta, de VUGT Marjolein E.

The frequency of Young Onset Dementia (YOD) is estimated at 100 per 100.000 in the population age between 45 and 65 years in Europe, Japan and the United States. There is a total of 16.000 affected individuals in France and United Kingdom and a total of 24.000 affected individuals in Germany. When dementia strikes at a relatively young age it is associated with specific and particularly severe problems for patients, family carers, and healthcare professionals. Existing health and social care structures do not meet the needs of this patient group in any country. Specific services for people with YOD such as peer groups, educational courses or guided leisure activities have only recently been implemented. Specific pharmacological treatment is currently unavailable for most people with YOD. Therefore, counselling and support of family and other carers are of outstanding importance. The main goal of RHAPSODY is to improve care for people with YOD by supporting their carers. A multi-disciplinary consortium of eight partner institutions from six countries – France, Germany, the Netherlands, Portugal, Sweden and the United Kingdom - are joining their efforts. The research teams represent academia, industry as well as a patient and carer advocacy organization. The project will analyze the health and social care systems in six European countries and create an educational, web-based, interactive e-learning program which is tailored to the needs of this particular group of people.

RHAPSODY is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND: Germany: Bundesministerium für Bildung und Forschung (BMBF); France: The French National Research Agency (ANR); UK: Economic and Social Research Council (ESRC); The Netherlands: The Netherlands Organization for Health Research and Development (ZonMW); Portugal: Fundação para a Ciência e a Technologia (FCT); Sweden: Swedish Research Council (SRC).

PO3.2. Investigating the impact of volunteer mentoring on carers of people with dementia: a mixed methods study


Background: Volunteer mentoring (befriending and peer support) is used across a wide range of services for people with varying needs (Casiday et al, 2009). Despite such schemes for carers of people with dementia (PWD) increasing in number (Department of Health, 2009), there is little evidence for the potential benefits they may offer (Smith & Greenwood, 2014). The aim of this mixed methods study is to investigate the impact of volunteer mentoring on carers’ mental health, loneliness and perceived social support using a mixed methods approach.

Methods: Nineteen family carers of PWD were recruited from schemes in Central and Southern England between February and October 2013. Carers completed the Hospital Anxiety and Depression Scale (HADS), the Multidimensional Scale of Perceived Social Support (MSPSS) and UCLA Loneliness Scale at baseline, 3 months and 6 months. Of the 16 carers who completed the quantitative phase, 8 took part in in-depth semi-structured interviews.

Results: Carers ranged in age from 34 to 85 years (average 63.6) and three-quarters were female (73.7%). No statistically significant differences were found for anxiety, depression or loneliness across the 3 time points. A significant difference in perceived social support scores was found (p = 0.042). Post-hoc analysis showed this to be between baseline and 3 months (p = 0.015). Of the 3 subscales of the MSPSS, only support from a significant other was shown to be statistically significant between baseline and 3 months (p = 0.013). Qualitative findings showed volunteer mentoring to be an important source of emotional and social support for carers, which was facilitated by the volunteers’ experiential similarity. Carers reported volunteer mentoring enables them to release emotional stress and to cope with challenging situations.

Conclusion: Volunteer mentoring offers carers emotional and social support which enables them to cope with challenges and continue caring. This has implications for potentially reducing the numbers of carers accessing statutory services and lengthening the amount of time PWD spend at home before entering nursing care.

PO3.3. More meaningful activities and better self-management thanks to the tablet? A person-centred programme that supports people with mild dementia and their carers

GRAFF Maud, KERKHOF Yvonne, De VOCHT Hilde, DRÖES Rose-Marie

Background: Because of the growing ageing population, eHealth services are stimulated to provide efficient and guaranteed quality of care. Due to this development, the availability of new applications (apps) in the field of health and social care increases. This also applies to the field of dementia care. To offer good support to people with dementia and their informal and formal carers in times of scarcity the deployment of the tablet is viable and desirable. However, at the moment it is not clear which apps are usable for supporting people with dementia and how these people can be coached to learn to use a tablet and its apps.

Research aim: Guidelines will be developed as part of a person-centred programme aimed at supporting people with mild dementia and their carers in how to use a tablet for meaningful activities and self-management.

Methods: The programme will be developed in accordance with the first phases of the Medical Research Council’s (MRC) framework for developing and evaluating complex interventions and covers the following phases: a preclinical or theoretical (0) phase; a modelling phase (I) and the exploratory trial phase (II). People with dementia and their carers will be involved during these phases, by means of individual interviews, focus groups and case studies.

Discussion: The iterative process of this framework makes it possible to develop a user-oriented intervention, in this case a person-centred programme for the use of tablets in dementia care. Preparatory work will be done to enable a methodologically sound randomised controlled trial (RCT), which aims to investigate the contribution of this person-centred programme for tablet use to the quality of life of people with dementia and their carers.

PO3.4. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a qualitative systematic review

LAURITZEN Jette, Pedersen Preben Ulrich, Sørensen Erik Elgaard, Bjerrum Merete

Background: Support groups are considered an effective way to care for informal caregivers  of  older  adults with dementia  and  relieve  their  feelings  of  stress  and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but with no significant improvements in feelings of stress and burden. It is unclear how support groups can produce a meaningful outcome for the informal caregivers.

Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home.

Method: A systematic literature review was conducted based on a peer-reviewed and published review protocol. 233 full-text papers were assessed for eligibility. Five qualitative papers were selected and assessed for methodological quality prior to inclusion using The Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative research data were extracted and the findings were pooled. This process involved the aggregation of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings based on similarity in meaning. These categories were subjected to a meta-synthesis that produced a comprehensive set of synthesized findings.

Result: The meta-synthesis produced three synthesized findings: 1. Emotional benefits of peer-based support, 2. Facing the challenges of caregiving, 3. Embracing the future through virtual configurations of group meetings

Conclusion: Peer support is meaningful and beneficial for informal caregivers. The support groups provide a source for obtaining positive emotional support, venting negative feeling and gaining help to deal with the everyday life of caring for older adults with dementia.

PO3.5 Stress, coping and service use: a qualitative exploration of the experiences of family caregivers

DOUGLAS Lorraine, POTTER Lauren, GOW Alan, MILDERS Maarten

Community-living people with dementia are often reliant on the support of informal caregivers, including spouses and other family members. Previous research has shown these informal caregivers to be at increased risk of negative outcomes such as stress and depression, and there have been many attempts at creating supportive interventions to help caregivers meet the challenges of caring for a person who has dementia.

The present qualitative study looks at the experiences of informal caregivers. Fifteen caregivers (including both spouses and children of a person with dementia) participated in semi-structured interviews, speaking about their experiences of caring for a family member who has dementia, the skills and resources they developed and used in taking on this role, their experiences of using community supports and their perceived on-going needs. Interpretative Phenomenological Analysis (IPA) was used to analyse the interview transcripts, with the primary aim of examining the experiences of informal caregivers. A secondary aim was to look at these experiences in relation to existing theories of caregiver stress and coping.

Emerging themes from the analysis will be presented and related to existing knowledge about the needs of caregivers. Following on from this study, an intervention study is being carried out, focusing on the self-efficacy of informal caregivers in relation to certain aspects of caring for a person with dementia. The implications of the qualitative research for this and future intervention studies will be considered.

PO3.6. Digital Timelines project – using ICT to trigger memories


Digital Timelines is a two year (2014 – 2016) European Erasmus+ project that will create and pilot a training course and support materials to produce videos for the benefit of people with memory loss. The project aims to produce an effective resource which is at very little or no cost to the persons with dementia or their carers.

The objectives of the project are to make maximum use of developments in ICT with regards “multi-media” digital devices to produce a training programme and digital resources to stimulate memory.  It will benefit specifically the person with dementia and their family members, friends, volunteers, as well as professional carers.  

Within the project the partners will design a training package that is easily transferable and accessible to individuals, carers, family and professionals alike. 

The training package will be cascaded on a one-to-one basis or in small groups.

It will further be available as an eCourse, and will be supported by examples of digital timeline videos, as well as an instructional video, to ensure that along with many other complementary support interventions, the products are universally and freely available as open educational resources.

This nature of the project also addresses EU priority needs, including  improving digital skills of adults and varying age groups in the care industry, encouraging use of open educational resources (OER) and providing open and flexible learning; including in practical application of ICT as an educational resource; a  focus on the needs disadvantaged groups in society. Making the training resources available in Romanian, Slovenian, Turkish and Swedish addresses the need to produce OER in diverse European languages.

The project uses new ICT capacities to pull together and build on successful therapeutic initiatives already available.

Slovenian partner is RESje team, which offers volunteer support to persons with dementia and their families, organized at ZDUS (Slovenian Federation of Pensioners’ Associations).

PO3.7. Data collection and evaluation in care for dementia patients in Czech Republic


Geriatric conditions such as functional impairment and dementia are common and frequently unrecognized or inadequately addressed in older adults. Identifying geriatric conditions by performing a comprehensive geriatric assessment (CGA) can help clinicians manage these conditions. The aim of the paper is to present an effective method of data collection from CGA and its results using GDiag software. The results can then be quickly and efficiently shared across the provided services, therefore the individual care plans become effective both for dementia patients and service providers. Data collection (from the long-term care institutions in the Czech Republic) is currently performed generally in the form of paper questionnaires and then the data are manually processed. However, this method is not suitable from the viewpoint of bulk processing and long-term storage. Therefore, we developed a software suite GDiag for data collection and long-term storage which is designed to fit the needs of LTC providers. This suite consists of three tools: a questionnaire editor, a digitizing tool for printed questionnaires, and a web application for completion of the electronic questionnaires. The software suite is successfully used for monitoring parameters of patients with dementia in the Czech Republic, where individual long-term care institutions have collected data for two years. The results are currently evaluated and it is being published.

This research project is supported by the grant NT11325 of the Ministry of Health of the Czech Republic: “Long-term care for seniors: quality of care in institutions, organisation´s culture and support of frail older persons”.

PO3.8. DemFACTS — Facts boxes for burdensome medical interventions in palliative care in dementia: a randomized controlled trial

LOIZEAU Andrea, EICHER Stefanie, RIESE Florian, MARTIN Mike

Introduction: Because of the impaired judgement that accompanies advanced dementia, decisions concerning burdensome medical interventions are frequently delegated to legally authorized representatives (mostly relatives). The ‘Facts Boxes’, developed in the US, are promising decision-making aids containing well understandable, evidence-based data about the nature, frequency and benefit of interventions. DemFACTS aims at the development of three ‘facts boxes’ for burdensome medical intervention in advanced dementia via participatory research. In addition, it seeks to assess the effectiveness of the facts boxes in terms of their ability to transfer knowledge, improve decision-making, as well as the general appropriateness of their content and format.

Method: The study has a cluster-randomized, controlled, pre-/post-intervention design. 250 nursing homes (cluster randomized) and SVBB groups (Swiss Association of Professional Health Care Proxies) in the German-speaking part of Switzerland will be asked for participation. Relatives of nursing home residents with advanced dementia (n = 200), professional health care proxies (n = 200), and long-term care nurses (n = 200) will make treatment decisions based on case vignettes. The intervention group will be presented with three facts boxes, while the passive control group will not receive any intervention. Several standardized and validated scales, e.g. Decision Conflict Scale (DCS), as well as items tailored to the purpose of the study will be used.

Expected outcomes: Primary outcomes are the pre-post increase in knowledge. Secondary outcomes are decisional content and the facts boxes’ effectiveness as decision aids.

Conclusion: This intervention is hypothesized to improve the decision-makers’ understanding of treatment decisions and their confidence in subsequent decisions. Improving knowledge transfer in palliative care decision-making could have a major impact on how decision-making aids in this field will be shaped in the future.

PO3.9. ABC Dementia – New ways of learning person-centered care for professional caregivers


Background: The Danish Dementia Research Centre has the task to disseminate knowledge and provide training for the professional caregivers in Denmark.

With the ABC Dementia we try new ways to offer training, and wanted to see if its useful for the professional caregivers in their daily practice.

Methods: ABC Dementia is a web based basic course for nursing and care staff.

It consists of 10 modules with different themes.

ABC Dementia translates evidence-based knowledge into best person-centered practice by using text, assignments, film clips, cases, virtual environments.

The web based course can be used alone, or it can be used in blended learning, where the user first completes the web based course and afterwards participates in a presence course.

Results: ABC Dementia was launched in may 2013 with the first modules, since it has been regularly supplemented with more modules.

End March 2015 there were about 7300 users across the country.

About 200 nursing and care staff had completed the blended learning course.

Conclusion: ABC Dementia offers flexibility as it can be accessed when needed. It gives the possibility for the user to practicing their approach, reflect and learn more about dementia.

It motivates professional caregivers to learn more about dementia and person-centered care, and it is a good add-on to other ways of spreading knowledge and initiating the dialogue, which is needed in order to provide good person-centered care for people with dementia.

PO3.11. Intellectual disability & dementia: Jenny’s diary


People with intellectual disabilities are now enjoying a longer life expectancy than ever before as a result of enhanced medical and social interventions and improved quality of life. As a consequence of this we now know that some people with an intellectual disability, particularly individuals with Down syndrome, are susceptible to dementia at a significantly younger age.  All dementia strategies in the UK state that everyone is entitled to know of their diagnosis, not only as a human rights issue but as part of developing appropriate and individualised post-diagnostic support. Currently there is limited guidance on how to explain dementia to someone with an intellectual disability, plus a shortage of information for friends, family and paid carers. This means that until information is shared about dementia, we are unable to position people with an intellectual disability as an authority on their condition.

Jenny’s Diary is a new free resource with an accompanying set of postcards (A5 size, full colour) funded by a Dissemination Grant from Alzheimer’s Society, UK. The postcards contain photographs of Jenny and other actors with an intellectual disability in a range of situations: domestic, community based or social. The images and accompanying easy-read text offer an explanation of changes in behavior with examples of how this information can be shared with Jenny, her partner and her friends. It forms a guide to support staff and family to answer questions and to develop a consistent, person-centred approach based on the specific need, cognition and understanding of the individual with dementia. This poster gives a pictorial guide to the development of this new and innovative resource, with examples of content.

PO3.12. Psychodemographic profile of non-professional caregivers of dementia patients in Poland, preliminary study


One of the most important changes in the care system is that due to increased life expectancy and the shift from acute to chronic diseases the number of disabled people has increased. Consequently, the number of individuals involved in caregiving, the duration of caregiving role and the types of caregiving tasks performed have also changed as for many caregivers such a role last for many years, even decades and caregiving has become very complex task.

The aim of the study is sociodemographic characteristics of non-proffesional caregivers of dementia persons in Poland. 50 caregivers of people with dementia participated in the study. They were recruited in Wielkopolska District. The mean of age was 60,7±14,20 in examined group. They were women mostly (73%).  The results show that level of pain did not correlate with the level of deppression.

The caregivers have external support mainly from other relatives, they got institutional support occasionally.

The research supported by AAL fund. The title of the project: Understaid a platform who help people with dementia

PO3.13. “I am living with and almost inside the music” – Music as a support in daily life activities for people with dementia and their caregivers illustrated by the example of Helga Rohra


Music addresses people with dementia as human beings, not as patients. Music is life, is the living expression of life. Music facilitates an appreciative way of communicating, a dialogue amongst equals, in which the person with dementia can participate and shape his or her own experiences in a significant way. For a person with dementia, the experience of being appreciated and perceived as a person in the musical process, is often motivating and furthers and supports the person’s wellbeing, also in many areas of practical life. More than that music creates neural networks. Various musical parameters stimulate and link different areas in the brain at the same time. It has been proven that music activates centres in the brain that are responsible for emotions and instigates processes of neural reorganisation.  Music is always in interaction with motor control, executive functions, memory, language or attention. Illustrated by the example of Helga Rohra talking about music and how music therapy is supporting her participating in life, a large number of practical examples are provided and listeners are invited to participate and to discover music for themselves.

PO3.14. Implementing person centered care in community health care – the Norwegian Dementia plan 2015.


Aim: Person centered care (PCC) is found to be beneficial in patient care.  The aim of this project is to increase knowledge and use of PCC and psychosocial interventions in community health care (long term care institutions and home services), to increase well-being in the patients and reduce use of coercive measures.

Method: The methods used for implementing PCC:

Marte Meo –use of film to explore challenging patient – staff interactions, feedback through supervision.  Theory of Maria Aarts.

Dementia care mapping (DCM) – observing patient – staff interactions, with feedback to the staff group. Theory of PCC, Tom Kitwood.

VIPS practice model (VPM) – weekly consensus meetings to discuss challenging situations. Theory of PCC, Tom Kitwood, Dawn Brooker, Janne Røsvik.

Structured non-pharmacological treatment – organizing/ routines in units, structured use of care plans. Theory of Gunderson.

Subsidized courses in VPM, DCM and Marte Meo are offered to care staff with a minimum of bachelor-degree, who have teaching and /or supervision as part of their work, working in old-age psychiatric wards, resource centers or centers for development of institutional and home care services. For the Structured non-pharmacological treatment model there is a book describing the method provided for units interested in using this method.

The methods can be used independently or in combination. A project in long term care institutions where the methods will be combined starts in April 2015 and will be evaluated in October 2015.

Conclusion: It takes time to change care traditions in long term care, but there is a growing awareness in the community health care that there is a need of knowledge on PCC and a structure to help them achieve good patient care. 

PO3.15. Innovative care – Psychosocial interventions


The attitude towards people with dementia and appropriate environment are the two essentials that co-create a quality life of persons with dementia. For this reason we must pursue goals, based on a psychosocial concept of work with persons with dementia.

Demographic changes in Slovenia and the needs of people with dementia require new forms of work concepts by putting them in the centre of attention. With the help of the appropriate staff – housewives – we create appropriate environment– household groups. With its architecture and a family-like environment, it encourages the person with dementia to be independence, safety and comfort. The kitchen as the centre of life appeals to the senses of people with dementia with all interactions and conversations. Architecture is ensuring privacy in single rooms. With their own equipment from home persons with dementia can turn it into a Home. Household groups operate on the principle of normalization. They offer traditional activities from their lives and allow autonomous decision-making. They create everyday life – all in connection to knowledge of the life stories of individuals.

The concept is complemented by “the bathroom of well-being”. It is meant for encouraging the perception at the level of relationship with the person with disturbance in intellectual perception, especially among people with dementia and residents with less or no verbal communication possible.

With the introduction of palliative care we enable the relief of physical, spiritual and psychosocial ailments and advance planning. We provide permanent presence of relatives in the final stage of the disease in the room for palliative care.

But a quality foundation strives to act beyond by pursuit all efforts in the last two years focused on creating Šentjur a dementia-friendly place. That way it will be easier to confront dementia.

PO3.16. Caregiving in dementia: premilinary results on intervention on “person with dementia and caregiver dyad”

NEVIANI Francesca, FABBO Andrea, MANNI Barbara, MONZANI Martina, SGARBI Cinzia, NERI Mirco, CHATTAT Rabih

Introduction: Many studies stressed the relevance of caregiver in the care of dementia, less is known on the effect of an intervention on both patient and caregiver. Aim: Ascertain the level of efficacy of a contemporary therapeutic approach (drug intervention for patient and psycho-educational for carer) on the dyad with respect to a control group.

Materials and Methods: A randomized case-control clinical study has been designed. A sample of 77 person with dementia (PWD) with MMSE ranging 12 to 27 with AchE-I treatment lasting 6 months to 2 yr have been selected. The presence of BPSD was also requested (NPI at least 1 item frequency x severity=> 6) Their carers have been contacted to explain aims and methods of the study and ask for participation, 24 decline the proposal. Then the carers were randomized in two arms (27 each arm), one for the psyco-educational intervention, the other for control. The intervention consisted on 4 one hour-sessions/month and a 3 months follow-up session. Three data gathering points were scheduled: T0 - T1 (1 month) - T2 (3 months). Main outcomes at T2= NPI and IADL/ADL scores; Carer= Caregiver:CopingOrientation to ProblemsExperienced (COPE); Secondary outcomes at T1 and T2 : Patient= MMSE score ; Carer= CargiverNeedsAssessment for dementia = CNAD and ZaritBurden Inventory= ZBI .

Results: The study will end within 4 months, actual data refer to 48 T0 sessions (27 treatments an 21 controls) and 21 T1 treatment sessions. Socio-demographic characteristics: in both PWD and carers no differences were found between in treatment, control, refusal groups. Efficacy: at T1 a significant improvement in patient NPI score and carer CNAD-Problems subscore was found. For the latter, NPI- stress score and CNAD-Satisfaction subscore showed a significance level <10% > 5%. Correlations: At T0 in total sample and in the two sub-groups (treatment-control), patient NPI total score showed a significant correlation with NPI distress score and CNAD sub-scores of the carer.

Conclusions: The scores of patient behavior and carer perceived needs improved even after 1month treatment. This result is consistent with their strong correlation found at T0 and address towards positive results in main outcomes at T2.

PO3.17. Music as aid when caring for people with dementia


You can reach people with dementia with music in a unique way. This is why music is often referred to as the royal road when working with people with dementia. Even short encounters with music are sufficient to awaken let alone increase i.a. attention. Music is neurophysiologically linked to emotion thus connected with memory. Music possesses various possibilities to reach/contact people with dementia as nonverbal medium of communication and biological language of the brain. Moreover it plays a vital role in most people's life indifferent of them playing music themselves or being musical. It is important to work individually and in a person- and biography-oriented way!

You can avail of this person-oriented work when taking care of other people. People with dementia often times challenge caregivers in a special way especially at a later stage of the disease. Care can be eased via the ambient effect of music and its nature of awakening memory. Getting dressed will become easier with a song about fashion or clothing creating a new link. A lullaby eases going to bed for a person with dementia remembering him or her of their childhood calming them down. A jointly sung simple hiking song aids walking improving the gait pattern; making it more stable and more rhythmical and raising the feet higher and thus music prevents falling over. Singing helps preventing pneumonia due to the deep taking breaths and slow and even exhaling. With this knowledge, music can be integrated into care (for example in Germany AEDLs according to KROHWINKEL) and thus easing everyday life in care. The speech will demonstrate more examples and background. Moreover, it will explain the possibilities of interdisciplinary cooperation with music therapists.

PO3.18. Music therapy as psychosocial intervention for people with dementia


You can reach people with dementia with music in a unique way. This is why music is often referred to as the royal road when working with people with dementia. Even short encounters with music are sufficient to awaken let alone increase i.a. attention. Music is neurophysiologically linked to emotion thus connected with memory. Music possesses various possibilities to contact people with dementia as nonverbal medium of communication and biological language of the brain. Moreover it plays a vital role in most people's life indifferent of them playing music themselves or being musical.  Music therapy is competely unattached to musicality! Solely the music therapist must possess this skill in order to utilise the atmospheric effect of music correct and targeted. It is important to work individually and in a person- and biography-oriented way!

Scientific studies (RAGLIO 2008) have found that symptoms such as agitation, anxiety and depression is reduced through music therapy. Moreover, self-confidence and willingness and ability to communicate are raised. Everyone who has had expericence with singing or playing music with people with dementia will only confirm this. People become more attentive and feel that they are in good hands and understood. A lasting effect of music therapy is often described by caregivers or relatives that perceive people with dementia calmer and more communicative thus more balanced.

This speech shall depict the mentioned effect and usage of music therapy as non-verbal psychotherapy for people with dementia and also discuss differences and similarities of the activity offer with music. Furthermore, the interdisciplinary possibilities of the cooperation between caregivers and other therapists will be pointed out.

PO3.19. Dark shadows of dementia


Neva Železnik: Two years after my mother died, I wrote a book about her vascular dementia. The title of the book is: Goodbye I'm going home ... and subtitle: Dark shadow of dementia. My book was the first one about dementia in Slovenija, written by someone with personal experience. In fact, it is a personal confession how I felt, and a lot of tips how to proceed on various occasions. Until then, the dementia was more or less taboo and stigma attached to the disease. Dementia is now much more known and I became the Vice-President of Alzheimer Slovenia.  And why I wrote the book, which was sold out in two months? I am going to talk about that in my speech.

PO3.20. Researching the wellbeing of people with dementia living in a purpose built care environment: Ways forward.

BUSHELL Sophie, INNES Anthea, NYMAM Samuel

This paper will present my doctoral research using action research to implement activities to promote wellbeing for individuals with dementia living in a purpose built long-term care environment.

The wellbeing of individuals living with dementia has increasingly become a topic of academic, professional and political discussion, along with a rise in research into interventions designed to promote wellbeing or quality of life amongst individuals living in care. However, existing research has overlooked the potential of the individual with dementia to make their own decisions regarding which activities may be most beneficial to their own wellbeing. 

This research study proposes that the way forward in this area of research is to work in close collaboration with research participants, enabling them to design and choose their own activities for wellbeing. This approach is expected to produce better outcomes for wellbeing than traditional researcher-designed activities and to promote a more collaborative and inclusive approach to researching the lived experiences of people with dementia residing in care.

Within this research project, people with dementia are acknowledged to be the experts in their own lived experiences and are therefore in the best position to know which activities will benefit own wellbeing. The key then, is to enable people with dementia to express their preferences about activities and for care professionals to support and encourage engagement in these activities accordingly. This approach will use focused workshops to support people to design and choose their own activities and ethnography to evaluate the impact of those activities upon wellbeing. It is expected to produce better outcomes for wellbeing than traditional researcher-designed activities and to promote a more collaborative and inclusive approach to researching the lived experiences of people with dementia residing in care.

PO3.22. Psychosocial interventions

LAH Samira

Senescence of population has been a reason for dementia and it is growing fast. However, it does not affect only the affected individuals and their relatives but also wider society. With such intense growing manifestation, we think that prevention is of key importance. The studies, which have been researching risk factors for dementia, have been contradictory for several times. Nevertheless, numerous researches have shown that there important risk factors exist where we as individuals have influence to act preventively.

The purpose of our article has been to focus on some preventive activities, which, according to our opinion, help lowering or decelerating risk factors for the development of the illness.

The basic standpoint, which we stand up for with interventions, is to draw the therapeutic effects of individual activities through games closer, which connect different sorts of learning: social, emotional, mental, verbal, linguistic, sensitive motoric skills and orientation. All these are the areas, which are the most exposed in the process of illness’ progress.

In the article, we would like to present different didactic material and approaches which develop the individual’s areas. We have connected to the "gameteque" of Maribor library Nova vas which has more than 2000 didactic games.

We would like to highlight the activities, connected with strengthening of the areas:

  • orientation (chronological, spatial, personal);
  • motoric functions and coordination of eye – hand (exercises for encouraging of balance, flexibility, manual dexterity);
  • speech and language area, which are included in all other activities;
  • sensual motoric exercises (we increase differentiation and recognition of sensual impressions):
  • cognitive exercises (memory, attention, concentration);
  • social skills (they help that an individual is active as long as he/she possibly can at the area of communication and socializing with other people):
  • strengthen the healthy lifestyle and care for healthy diet.

With activities, we would like to offer the individuals a possibility for social connections among generations and lower the fear of the insecure future because we thing that it helps to build a friendlier and more tolerant society for people.

PO3.23. Using Video Feedback at Home in dementia care: outcomes, challenges and recommendations.


Background: Video Feedback at Home (VFH) aims to improve the well-being of the informal caregiver and the person with dementia (PWD) by training the caregiver to communicate successfully. There is hardly any scientific evidence for VFH.

Objectives: The aim of this pilot was to investigate if VFH has an effect on the quality of the interaction between PWD and informal caregiver; affect and experienced burden of the caregiver; and the number and intensity of PWD’s challenging behavior. A second objective was to perform a process evaluation focusing on barriers and facilitators regarding the use of video in interventions.

Methods: 25 VFH-cases were to be studied in a pre-post design. A rating schedule was developed to rate video footage on quality of interaction. Affect and burden were measured by the Positive and Negative Affect Scale and the Short Sense of Competence Questionnaire. Challenging behavior was measured using the Cohen-Mansfield Agitation Inventory. Additionally, semi-structured interviews with caregivers were administered. For the process evaluation participating caregivers were interviewed and a questionnaire was administered to declining caregivers, stakeholders and field experts concerning their views regarding VFH.

Results: Ten couples participated in the pilot study. When the rating of the video footage was specified according to each individual VFH trajectory, improved quality of the interaction was observed in half of the cases. Scores on most questionnaires improved. In the process-evaluation various barriers to VFH were mentioned, most importantly a psychological threshold for caregivers and lack of familiarity with VFH among caregivers and referrers.

Conclusion: Although VFH could be an effective intervention, the current barriers to its use are very high. The results provide practical implementation guidelines to possibly overcome these barriers. Further, our study can guide future studies on interventions using video and more generally interventions using technology in dementia care.

PO3.24. Dementia and sensory challenges


To show how a project instigated by Agnes Houston, a person with dementia, found that regardless of a dementia diagnosis, sensory issues were not being dealt with despite being a lived experience by many and how in partnership with a dementia friendly community she gave hope to people affected by dementia on how to live a positive life with sensory issues.

How the project enabled people with dementia, their families and carers plus professionals to be better equipped to deal with sensory problems around vision, hearing, taste, smell and hallucinations.  

How narratives were collected from people with dementia experiencing a range of such sensory problems.  How the information from these interviews was examined and transformed into a practical leaflet outlining the issues together with hints and tips.

How direct outcomes confirmed for both people affected by dementia and professionals that:

  • dementia is more than memory with definite signals pointing to sensory issues
  • sensory issues are very common and that most people with dementia when asked have some problem around their senses
  • behaviour caused by sensory problems were identified and solutions devised to alleviate the problem
  • People with dementia were empowered with words to describe their experiences so that they did not feel alone and isolated by sensory issues.
  • using the words of people with dementia, a programme of education needs could be devised to encompass experienced sensory issues from daily life.

PO3.25. Unmet needs of community-dwelling people with dementia in primary care and the benefit of a formal dementia diagnosis


Objectives: To provide optimal care for people with dementia, the individual unmet needs have to be identified and comprehensively addressed. Main objectives are (1) to describe the number and types of unmet needs of community-dwelling primary care patients in Germany screened positive for dementia and (2) to examine whether formally diagnosed patients have less unmet needs than undiagnosed patients.

Methods: DelpHi-MV (Dementia: life- and person-centered help in Mecklenburg-Western Pomerania) is an on-going general practitioner-based, randomized controlled intervention trial. The present analyses are based on the baseline data of 180 patients of the intervention group with completed standardized, computer-assisted needs assessment until October 7th, 2014 (preliminary data).

Results: (1) Patients screened positive for dementia had on average 8.2±4.5 unmet needs. The majority of unmet needs occurred in the action fields “nursing treatment and care”, “social counselling and legal support”, and “pharmaceutical treatment and care”. (2) Formally diagnosed patients had significantly less unmet needs than patients without diagnosis (7.4±4.0 vs. 8.6±4.6), independently of age, sex, living situation, cognitive impairment, functional status, and depression.

Conclusions: The results emphasize the importance of a comprehensive needs assessment that allows the identification of unmet needs as the basis for a tailored intervention plan. Patients seem to benefit from the presence of a formal diagnosis. However, the number of unmet needs in formally diagnosed patients was still high. The presence of a formal dementia diagnosis is not sufficient to ensure optimal treatment and care; further measures – such as Dementia Care Management – need to be taken.

PO3.26. Benefits of one support worker through the dementia journey. Tested method in rural communities reducing stress and isolation for the person with dementia and their carer.


In rural areas of Northern Ireland where people with dementia and there carers are affected by high levels of isolation the Alzheimer's Society offers one support worker to be available from when the person is diagnosed, through review clinics, at community support, 1:1 support and carers information programmes and peer support group.

The benefits of one support worker enable the person with dementia and the family not to have to repeat their personal story at each stage and group they attend, the SW can ensure that the service is a bespoke as possible to them and reduce stress for the family and PWD.

This is a particularly beneficial in rural communities where people still live in close proximity to lifelong neighbours and family and can be unaccustomed to meeting and sharing personal history with outsiders compared to those who live in more transient communities.

PO3.27. Small group living for persons with dementia – is there a difference to traditional care?

AUER Stefanie, GECK Monika, KIENBERGER Ursula, HOFMANN Bettina, VIERECKL Carmen, WIMMER Sonja, SPAN Edith

Background: Care Models supporting Persons with Dementia in institutions are currently changing in many countries. There is a development towards “person centered” and “stage specific” care. Smaller care homes or “group living” concepts are thought to be advantageous because they provide care in a homelike rather than an institutional milieu. Despite the face validity of smaller institutions, there is little evidence in favor of these concepts available.

Methods: We report on a one year longitudinal observational study involving persons with dementia residing in a group living model and in traditional care settings, care team members and relatives. Persons with dementia participating in the study were matched with respect to sex, age, dementia severity and number of medical diagnosis. All persons were assessed at baseline, 3 months and 6 months. An additional 6 months observational phase was set up. As primary outcomes Quality of life (QUOL-AD, person with dementia version) for the person with dementia, work satisfaction for care team members and Quality of life (family version) for relatives was chosen.

Results: 36 Persons (28 female, 8 male) with Dementia (10 persons living in a group living, 11 persons in a traditional and 15 persons in a semi-traditional environment) in different stages of the disease participated in the study (mean MMSE 16.5, SD=6.3). There were no significant differences on any of the main outcome measures observed.

Conclusion: This study did not find significant differences on the main outcome measures between the different care concepts suggesting that milieu may not be the main factor of quality care.

PO3.28. Professional Care Team Burden Scale (PCTB)


Background: There are high expectations put on institutional care according to the principles of “person centered care” and the related skills of understanding the needs of persons with dementia beyond regular “physical care” resulting in a high emotional investment on the side of the care teams. This situation can create considerable burden, maybe comparable with the burden experienced by family caregivers. There are very few dementia specific assessment instruments available to assess burden in care teams.

Methods: On the basis of the theoretical concept of subjective, objective and structural sources of burden, an item pool consisting of 40 items was constructed based on interviews with care team members. 3 experts selected 19 items in a consensual process. The perceived Stress Scale (PSS) was chosen as a criterion in order to test discriminant validity.

Results: 172 persons participated in the scale construction study. The stepwise scale analysis revealed a 10 item scale solution. The Cronbach’s alpha was 0.785. The Pearson correlation between the PCTB scale and the PSS was 0.46 (p<0.001). All included items could clearly be assigned to one of three factors.

Conclusion: The 10 item PCTB scale provides a valid and reliable means of obtaining ratings of burden from formal care teams working in nursing homes in order to evaluate different interventions targeted at the reduction of burden in care teams.

PO3.29. Improving care for people with dementia/delirium within acute care settings


Improving care for older people and support for those with a diagnosis of dementia/delirium is a priority for NHSaaa and as such, integrated working between specialist services has provided the opportunity to imbed an expansive training programme based on the principles of "Promoting Excellence:. Through integrated working a need for training in dementia/delirium care was identified by staff within the Acute Hospital sector. To meet this identified need a variety of training programmes and care pathways have been   developed and imbedded into practice.

During training sessions a substantial amount of time is spent exploring the appropriate use of non- pharmacological interventions in the care of patients with dementia/delirium within general hospitals, this includes the use of Cognitive Stimulation Therapy, Psychomotor Therapy and Multi-Sensory Therapy. During these sessions, it has been highlighted by staff how eager they are to introduce an array of person centred proactive treatments against a backdrop of reactionary care management.  Integrated person centred care pathways for Dementia/Delirium have now been developed and imbeded into practice within general hospital sites.

This initiative has at it’s core the vision of Rights, Relationship & Recovery in breaking down traditional organisational/professional boundaries with the aim of driving forward service improvement for patients with dementia that is person centred and strengths based. It has brought about partnership working with a common goal of positive change in practice in dementia/delirium care within acute hospitals.

This programme of change was developed to drive forward Scotland’s Dementia Strategy, Promoting Excellence and Standards of Care for Dementia in increasing staff’s skills and knowledge at all levels and ensuring patients have carers who are educated and supported in dementia/delirium care.

The theme throughout the change programme is person-centred care which is non-discriminatory, focusing on individuality and uniqueness of patients who have a right to care and treatment regardless of diagnosis.

PO3.31. Multi-sensor analysis and decision making for supporting people with dementia


Ambient Assisted Living (AAL) is one of the leading technological paradigms of the future, building upon the visions of Pervasive and Ubiquitous Computing. AAL specifically targets Quality of Life and eHealth for the elderly, disabled or people who need medical attention in general. This work presents the fundamental, underlying technologies of the DemaWare platform, which provides novel solutions for the holistic management of dementia, based on both medical knowledge and the latest advances in pervasive computing and sensor technologies. To this end, DemaWare delivers a multi-parametric monitoring framework that sustains context-aware, personalized and adaptive feedback mechanisms for the remote management of people with dementia. These include, physiological and lifestyle sensors, object  motion,  electric,  presence  and  environmental,  as  well  as  wearable  and  ambient cameras and microphones. Through intelligent fusion and context-aware aggregation of the different types of knowledge, DemaWare provides personalized feedback and care management services, coupling clinical and domain knowledge with profile contextual history and care plans. This is achieved through reasoning techniques and decision making procedures  that  effectively  integrate,  link  and  correlate  the  information  to  support  the monitoring of discern traits that have been identified by the clinicians as relevant for assessment and diagnosis, aiding them to design and adjust interventions. In addition, the platform offers a multitude of tailored user interfaces suitable for caregivers and clinicians, enabling them to monitor and assess a person via aggregated or detailed daily activities, physical activity, sleep and abnormal situations or behaviors, e.g. abnormal sleep trends.

PO3.34. Developing dementia support in acute care settings

McNAMARA George, SMITH Kathryn

The Alzheimer’s Society is pleased to present for consideration, a pioneering pilot project aimed at improving the hospital stay for people with living with dementia and their carers.

The evidence supporting this work is compelling, 25% of hospital beds are used by people with dementia at any one time. People with dementia are likely to spend three weeks longer in hospital than people without dementia admitted for the same procedure, and the majority of those with dementia will often deteriorate as a result of their hospital stay. With the number of people with dementia set to rise to over 1.4 million in the next 30 years, this pilot is an attempt to bridge a gap in the current support provision for patients admitted into hospital with dementia and their carers. Designed to complement hospital care, this specialist service recognises the difficulties patients with dementia may face during hospital stays, regardless of their reasons for admittance.

Over the two years of the pilot, the project has built on the very limited support available in hospitals for people with dementia and their carers by offering a high quality, innovative service. Working in partnership with the two hospitals involved, small but dedicated teams provide person-centred support during a stay and beyond, ensuring vital, continuity of care by referring back into community support services.

This vital work results in invaluable information and guidance from the point of planned or emergency admission, right through until discharge. It is designed to enable patients and their carers to understand and cope better with their time in hospital. This improves their chance of being discharged from hospital sooner and with the support they and their carer need to continue to live well in their community. This reduces stress and ultimately reduces the cost of keeping people in hospital longer than necessary.

PO3.38. Brain fitness – One-to-one tailor-made excercises for people with dementia and their carers


Brain Fitness comprises of memory and attention exercises, memory and relaxation techniques, which have a positive effect not only on helping people with dementia retain their memory capacity longer, but also prove beneficial to their creativity, meaningful communication and well-being. This particular combination of different techniques and exercises also serves to prevent pathological loss of memory and has positive results on health and well-being of family members and carers.

Brain Fitness is based on a person-to-person approach. In working with a person with dementia, a memory trainer is aware of her/his life story, cultural background, significant events and significant others. This information is used to design a tailor-made program for each individual person. This makes the activity useful, pleasant and sensible. The exercises are designed on basis of individual client's life story and his/her psychological and phycical characteristics. The activities consist of

  • attention exercises (using sense organs (hearing, smell, touch, sight, taste) and emotions e.g. anger, fear, joy);
  • short term memory exercises to improve storage and recall of information (memorizing words, numbers, lists, faces and names);
  • long term memory exercises (organizing, structuring and connecting information;
  • memory techniques, a simple tool to storing, connecting and recalling information;
  • relaxation techniques and balance exercises (walking, standing, sitting).

PO3.40. Advance care planning in residential care settings for older people in Italy: knowledge, attitudes and experience of healthcare professionals.


Background: Advance care planning (ACP) has demonstrated to improve end of life care and satisfaction of elderly patients and of their family carers, reducing symptoms of anxiety, depression and stress. In Italy legislation about advance directives is still lacking, and there are no data available on the use of ACP in clinical practice.

Objective: To investigate healthcare professionals’ (HCPs) knowledge, attitudes and experience with ACP in the context of residential care settings for older people in Italy.

Methods: A 54 item questionnaire was administered to all HCPs (n=306) of 11 Italian residential care facilities.

Results: One hundred and sixty five of HCPs (54%) completed the study. Only 28% of HCPs answered the section of the questionnaire on ACP knowledge. The questions with the highest rate of uncorrected responses were those regarding whether ACP is a legal document (88%) and that it can only be done by doctors (42%). Overall 82% of respondents favour the use of ACP. The main barriers to ACP appear to be the lack of skills to discuss it (28%), and the perception that both patients and HCPs are not prepared to discuss ACP (26 and 27% respectively). The fear that ACP may upset relatives (35%) and patients (29%) was the main concern of HCPs. The most frequently perceived benefits of ACP are: to allow patients to have sense of control over their lives (73%), to be able to influence their future treatment in case they lose competence (69%) and to decrease burden of decision making on family (69%). Forty nine per cent and 83% of HCPs does not know whether ACP discussion is part of their role and does not discuss ACP respectively. Among those who discussed ACP, only 8% initiates the process and it emerges that caregivers are usually involved. In 33% of cases, ACP is  not reported in patients’ records.

Conclusions: These preliminary data show that most of HCPs working with elders in residential settings favour the use of ACP and acknowledge is role in promoting patient’s autonomy. However, only few of HCPs discuss ACP, usually on request of patients and/or their caregivers. This result may be related to the fear that ACP may upset them.

PO3.41. Palliative care and symptoms of discomfort in hospice patients with and without cognitive impairment

Van der ROEST Henriëtte, WOUTERS Nadia

Background and objective: There is uncertainty whether palliative care for people with and without cognitive impairment is provided according to their needs. The first objective of this study is to examine and compare the symptoms of discomfort and types of provided palliative care to hospice patients with moderate to severe cognitive impairment (moderate/severe CI) and patients with no to mild cognitive impairment (no/mild CI). The second objective of this study is to examine the relationship between symptoms of discomfort and types of palliative care provided.

Method: 66 terminal patients admitted to a hospice were included in the study. Most patients had a primary diagnosis of cancer. Data were collected between September 2006 and December 2007 by trained hospice staff with the Resident Assessment Instrument – Palliative Care (interRAI-PC). Cognitive impairment was determined by means of the Cognitive Performance Score (CPS): Twenty patients (30.3%) had CPS ≥ 3, indicating moderate/severe CI. Variables from the interRAI-PC were used to describe and compare symptoms of discomfort and types of palliative care as well as the relationship between them.

Conclusion: No differences with regard to age and gender were found between hospice patients with no/mild and moderate/severe CI Hospice patients dying from a terminal illness (mostly cancer) with severe/moderate CI have probably more symptoms of discomfort, and receive with regard to hallucinations, (bladder and bowel) incontinence and fall incidents suboptimal palliative care as compared to terminal care patients with no/mild CI. Management and educational strategies are needed to improve end-of-life care in patients with severe cognitive impairment.

PO3.42. Dementia Ambient Care: A holistic approach to the management of dementia in multiple care settings

HOPPER Louise, JOYCE Rachael, MELANDER Catharina, KIKHIA Basel, KARAKOSTAS Anastasios, SÄVENSTEDT Stefan, IRVING Kate

Assistive technologies that continuously monitor the person with dementia’s behavioural, cognitive, and emotional state facilitate more objective means of assessing, monitoring, and supporting the individual than that provided by traditional questionnaires. The “Dementia Ambient Care” (Dem@Care) EU-FP7-funded project investigated the use of multiple wearable (actigraphy, 2D/3D cameras, microphones) and ambient (visual and infrared cameras, sleep) sensors for the recording of daily activities, lifestyle patterns, emotions, and speech, to develop a novel approach to the holistic management of dementia, in multiple care settings.  This paper presents findings from the use of Dem@Care for remote monitoring and support in the home of the person with mild dementia, and for the clinical assessment and management of Behavioural and Psychological Symptoms of Dementia (BPSD) for people in more advanced stages in a residential care setting. Four ‘home’ participant cases will be discussed; two in Greece and two in Ireland. An intervention study will also be presented comprising of residents from three specialist dementia care units in northern Sweden; two in the experimental group and one in the control group. In each setting, sensor data were analysed using state-of-the-art knowledge-driven interpretation techniques based on Semantic Web technologies. Patterns of sleep, physical activity, daily living activities, and stress/anxiety over time were identified. Through specific user interfaces, clinicians and formal caregivers were able to monitor the sensor recordings and the relevant analysis in order to propose new, or to adapt older, supports and interventions. Results indicate that such sensor-based information can have a positive impact on the assessment of BPSD in residential care settings. While at home, the person with dementia and their family caregiver could monitor summaries of their own activities, and read personalized messages, prompts and advice, thus providing timely support and enabling independent living for longer.

PO3.43. Lessons learned from a personalized music program for persons living with dementia at home and in long-term care

MCFADDEN Susan, PREMAN Sharayah, HERMUS Nathan

The Wisconsin Music & Memory (WI M & M) program has developed the most comprehensive, wide-spread use of personalized music for persons with dementia in the USA.  The WI M & M program employs iPod shuffles loaded with favorite music of individuals with dementia determined through interviews with them and family members. They listen either with headphones or through small speakers.  Based on the national MUSIC & MEMORY℠ program, the WI M & M program serves residents in over 250 nursing homes as well as assisted living facilities and other organizations that work with persons with dementia. Regularly scheduled webinars bring together researchers and practitioners to share information about implementation and measured outcomes for diagnosed persons, long-term staff, and care partners.  For example, one recent study showed a 4.64% decline in use of psychotropic medications in WI M & M facilities compared to a 3.12% decline in non-M & M facilities (Englebert, 2014). 

Our M & M research has two components:  (1) a pre-post enrollment study of social behaviors of nursing home residents comparing structured, blind observations of persons participating and not participating in M & M and (2) a pre-post enrollment study of persons living at home with care partners examining effects on care partner well-being and the quality of life of the diagnosed individual.  This presentation (or poster) will (1) offer preliminary findings from our research, (2) describe interviews conducted to learn about people’s favorite music, (3) report on challenges reported by long-term care staff and in-home care partners regarding their use of the equipment, (4) discuss responses of diagnosed persons to the music, (5) describe reasons why some care partners decide not to enroll in the program, and (6) share best practice recommendations from care facilities in the WI M & M program and from care partners. 

PO3.44. Short-term psychotherapy for family caregivers – Evaluation of the pilot study

KILIMANN Ingo, BRAUNGARDT Tanja, HAUFE Christiane, HAKE Karsten, SCHNEIDER Wolfgang, TEIPEL Stefan J.

Introduction: Family caregivers of persons with dementia (PWD) are the main providers of long-term care for PWD. Caring for a PWD frequently causes burden, stress and depressive symptoms in family caregiver. Psychotherapeutic treatment has shown to be effective, but is rarely used by caregivers. One main reason for not-usage of psychotherapeutic treatment are time constraints on the side of the caregivers. To facilitate for usage of such treatment, we developed a novel short-term family caregiver group intervention.

Methods: 10 participants took part in this 12-week program. The major overarching topics were (i) caregiver´s emotional and physical limits, (ii) feelings and emotions towards the PWD and (iii) activation of caregivers´ social resources. Primary outcomes have been feasibility, acceptance and caregiver burden, secondary outcomes self-efficiacy (two versions, one for general aspects and one explicitly for caregiving aspects), psychiatric symptoms and social support. Questionnaires have been applied before (T1), directly after (T2) and 3 month after the end of the intervention (T3).

Results: The program showed a high acceptance and adherence, all 10 participants stayed into the intervention until the end of the program. The caregiver burden measured with ZBI was stable between timepoints. Two items of the self-efficacy scale showed significant higher values on T3 compared to T1. Significant changes in these items have only been observed in the caregiver aspect version of the questionnaire.

Conclusion: Our concept for a short-term family caregiver intervention showed a high level of acceptance and adherence. Subjective burden measured by ZBI was stable without significant changes on T1, T2 or T3. The increase in self-efficacy on T3 compared to T1 needs to be replicated in an independent study. A new study with a randomized control design is currently on the way.

PO3.45. Adaptive implementation of the meeting center support programme in Italy

CHATTAT Rabih, FARINA Elisabetta, SAIBENE Francesca Lea, RYMASZEWSKA Joanna, SZCZESNIAK Dorota, EVANS Shirley, BROOKER Dawn, MEILAND Franka, HENDRIKS Iris, DROES Rose-Marie

Background: MEETINGDEM, a JPND research study, concerns the adaptive implementation of the Meeting Center Support Programme (MCSP) for people with dementia and their carers, which was developed and positively evaluated in the Netherlands, in 3 European countries (Italy, Poland, UK). Starting with this model a country specific implementation plan for setting up a Meeting Centre (MC) was developed in each country. Results on the implementation of the MCSP in Milan (Italy) will be reported

Methods: Firstly, a meeting was held, to inform care, welfare and volunteer organizations involved in dementia care about the project. Secondly, an Initiative Group was established to identify potential facilitators and barriers to setting up a MC and to suggest solutions for successful implementation. Third a detailed implementation plan was prepared, describing key aspects of MCSP (target group, programme, location, personnel, financing, collaboration between organisations) and country specific adaptations.

Results: At a micro level the inclusion of psychosocial interventions within the memory clinic’s treatment plan was seen as a facilitator for the acceptance.  At a meso level the MCSP fits well within the local dementia care network in Milan. At a macro level the national dementia plan promoting collaboration between care and welfare organizations appeared to facilitate the cooperation; The main adaptation of the MCSP in Milan are: decrease in the frequency of the programme ((three half days a week) due to the MC being integrated in a community centre for older people, aiming to promote social integration; the recruitment of certified personnel. Furthermore the programme wil give attention to cognitive stimulation in accordance with the professional orientation and the level of cognitive impairment of the people involved.

Conclusion: The successful and effective transfer of care models between European countries should be based on a careful adaptive implementation process, using local facilitators and make the necessary adaptations.

PO3.46. Peer support service for carers of people with dementia


The challenge of being a carer of a person with dementia has been well recognized and assessed. Many programmes are being conducted to support carers and relieve their emotional and practical burden. In 2014, Athens Association of Alzheimer’s Disease and Related Disorders (AAADRD) introduced a volunteer peer support service for family carers for the first time in Greece. Talking to peers may relieve emotional stress, strengthen coping and provide knowledge on caregiving skills.

10 former and current family carers from Athens volunteered to participate in a two day training course designed to promote peer support within families of people with dementia. Participants were provided with information on Alzheimer’s disease and other dementias and were taught skills concerning coaching, coping and conversation techniques. Experienced health care professionals (psychologists, social workers, nurses) carried out the training programme.

Upon completion trained peer support workers provide peer support through conversations over the telephone or in small groups of carers that place weekly in the 4 Day Care Centers of AAADRD. This service is disseminated through our website and through the local health and social care services.

Participants express satisfaction from sharing experiences and relieving their burden. They also state that they gain a lot of emotional and practical support from peer support workers and from other peers in the group. Eventually, they discover that their role as carers is meaningful and interesting, and they feel motivated to continue. They also feel that the training courses are well planned to prepare them for their tasks. 

Peer support can be an important post-diagnostic support service to families living with dementia. It helps carers who face isolation and exclusion and provides suitable volunteers with former caring experiences the tools they need to perform and enjoy peer support work.

PO3.47. MARIO: People with dementia’s perceptions of robot companions and their potential to reduce loneliness and isolation.

CASEY Dympna, MURPHY Kathy

Introduction & background: Many people with dementia experience social exclusion, loneliness and isolation which contribute to further cognitive decline.  The use of ICT solutions to combat isolation and loneliness in people with dementia to act as companions show much promise.

Aim: The MARIO Horizon 2020 research project aims to manage active and healthy ageing by developing robot companions based on the needs of people with dementia and their carers to help reduce isolation and loneliness.

Methods: A qualitative interpretive descriptive design based on the work of Thorne (2004) was used in the first phase of this study to investigate how robots could be designed that best meets the needs of people with dementia. Three focus group interviews with people with mild/moderate dementia were undertaken.  Participants were either living in the community or residing in long term care.  Thematic analysis was used to analyse the data and the criteria identified by Lincoln and Guba (1985) was used to ensure and maintain rigor. Ethical approval was obtained from the University ethics committee.

Findings: Findings indicate that people with dementia are receptive to having a companion robot within the home, but less inclined to have the robot accompany them in public.  All participants felt that the robot could prompt and remind them with various activities including eating, drinking and when to go shopping.  Others functions that MARIO could support included orientating them around the house; cooking and baking and reminding them of social events, family birthdays and anniversaries. The ability to have face recognition was also seen as key as well as engaging in preferred games or hobbies with MARIO. This work reveals that people with dementia are accepting of MARIO and could see its potential in helping retain cognitive abilities and reduce isolation and loneliness.  

PO3.48. Cognitive rehabilitation and cognitive support technology for persons with early stage Alzheimer’s disease


Cognitive rehabilitation and easy-to-use advanced technology has great potential to address the disabling cognitive symptoms of dementia.

The Danish Dementia Research Centre has created an innovative technology-based cognitive rehabilitation programme. The programme consists of individualised counselling and group intervention offering education on cognitive symptoms in early Alzheimer’s disease (AD), strategies and practical aids and tools to cope and compensate for these symptoms and individualised learning and training of these compensating strategies, aids and tools. Mini iPads with an individualised set up of apps are provided for all participants as a main tool to support and compensate for cognitive dysfunction.

This 14 week intervention programme has been investigated in a pilot study involving 11 persons with early AD and their caregivers. Results of the pilot study showed that the programme is both feasible and applicable. In general, patients with early AD are capable of using tablet based technology, but the results underlined a lack of more readily accessible software/apps that fit the needs of people with declining cognitive functions, and it also pointed to the need of solutions to support hardware and software maintenance.

We are planning a Danish multicentre study to investigate the clinical effect of the intervention programme, including software that will be specifically developed to meet the needs of people with dementia.

PO3.49. Improving access to psychosocial interventions for caregivers and people with dementia.

MILDERS Maarten, BELL Stephen, LORIMER Angus, JACKSON Heather

The increasing social and economic costs of dementia have led to calls to develop cost-effective and accessible care for people with dementia and their family caregivers. Multicomponent programs, comprising carer education and psychosocial interventions for the person with dementia, have shown to be particularly effective for maintaining well-being and daily functioning. However, these programs are typically labour-intensive for health care professionals, and therefore expensive, hindering widespread access.

The aim of this project was to improve access to a multicomponent program for caregivers and people with dementia. The manual-based program contained caregiver education about dementia, coping with the caring role and engaging the person with dementia in meaningful, stimulating activities. Unlike most previous programs, caregivers were trained to present part of the intervention and most trainers came from local charities and voluntary organisations, rather than health care services.

Trainers from 6 organisations, only one involving health care, were recruited from a largely rural region and were instructed by an experienced mental health nurse in how to train caregivers of people with dementia. Trainers subsequently invited caregivers in their local area to take part in the program. As a result, participating caregivers never had to travel far to take part in the program, making it accessible even for caregivers in remote areas.

In total 36 trainers were trained who recruited 122 caregivers and people with dementia. Anonymous feedback from trainers and caregivers was generally very positive. Observations of training sessions revealed good treatment fidelity. Three months after starting the program, caregiver confidence had improved compared to before the program, ratings of caregiver burden had remained unchanged but caregiver quality-of-life ratings were slightly lower.

PO3.50. Involving family caregivers of persons with dementia in the development of an online psycho-education tool


This study aims to develop and evaluate a web-based psycho-education program for family caregivers of people with dementia on the non-pharmacological management of night-time agitation. Causes of night-time agitation are multifactorial. In order to be effective, the tool needs to respond to the specific needs and questions of family caregivers. This presentation focuses on the participation of family caregivers in the development and refinement of the psycho-education tool.

First, the experiences of both professional and family caregivers in the sensory and spatial management of agitation were investigated in 3 expert panels and confronted with literature on sensory and spatial factors that contribute to agitation. As a result, the focus of the intervention is narrowed to night-time agitation. 

The knowledge from literature and practice experience is then integrated into an online psycho-education tool which aims to inform and guide family caregivers through the variety of causes and strategies of coping with night-time agitation.

A second step of participation involves expert panels where family caregivers (n=20), recruited through Alzheimer Association and other organisations, were presented the tool on paper and asked to provide additional input and practice examples, to comment the content and form of the tool and to anticipate on potential barriers and facilitators for the implementation of the online tool. These expert panels permit the final refinement of the tool before an evaluation study will be set up to investigate its effectiveness and feasibility.

Psychosocial interventions that support family caregivers can benefit from active involvement of these family caregivers, and this throughout the whole research process (from initial development to evaluation).

PO3.51. Using digital technology creatively to connect health professionals and people affected by dementia in rural areas

GRAY Patrick, MUIR Sarah, PASCOE Ann

To show how a partnership using digital technology connected Allied Health Professionals (AHP) in city mental health services to people affected by dementia in rural Community bases in the Scottish Highlands.

How using digital technology made AHP services more accessible to people in rural settings and increased the time AHPs spent in direct contact with a larger number of people. Previously without technology, time was spent travelling instead of reaching people affected by dementia in more timely and economical ways. 

How professionals working with a dementia friendly community invited people affected by dementia in rural areas to tell them what interested them by using pictures and how together they were able to build up a photographic bank of images of specific interest to community groups around the Highlands.

How by using specific themes e.g. feet, colour and/or celebrate they engaged with those community bases using digital media to highlight and share interests. How this project flexibly engaged people individually and in groups with face to face meetings, via social media e.g. twitter and Facebook or by using emails, telephone, letters, iPad, dvds and memory sticks. How community hubs developed their potential to work with central AHP services to facilitate therapeutic interventions.

How the bank of images served many purposes: how these programmes offered a basis for interaction between the Health Professionals and people affected by dementia using smart television, video conferencing, skype etc. How this project also developed a range of different resources including health programmes around exercise, nutrition, diet etc. 

How more resources were better directed to interactive support via digital technology thereby reducing isolation and loneliness, while ensuring travel and face to face contact became an investment that was planned and more fairly shared across rural communities.

How co-production of this project engaged people affected by dementia and communities at every stage in its development and how this served to improve overall social cohesion.

PO3.52. Dance movement therapy with people with dementia


Dance-movement therapy, based on the principle of  unity of body, mind and emotions (Payne 1992) with individual's movement reflecting patterns of his/her thinking and emotional patterns  is a suitable form of therapy for people suffering cognitive decline and having difficulties in expressing their thoughts and emotions (Kowarzig 2006). While the personality is not effected by the cognitive decline, the DMT approach focuses on activation of the preserved abilities and creating a supportive environment where an authentic personal expression is encouraged (Stockley 1992). Authors report of beneficial results of DMT sessions (arrested mental decline, eleviation of behavioural symptoms, mood enhancement, improved social skills, higher self-confidence and independence as well as physical fitness and flexibility) (Hill 1995, Palo-Bengtsson 1998, Hokkanen 2008, Dayanim 2009, Coaten 2009, Pierce-Knapp 2010, Hamill 2011, Schmitt & Frölich 2012, Guzmán-Garcia 2012, 2013). The positive results of the DMT stem from the use of movement/dance and music, from the nature of the therapeutic relationship (Karkou & Meekums 2014).

The paper introduces a model of dance-therapy with a group of elderly with dementia in a Slovene old people's home. The model was designed based on a research project in an old people's home in Ljubljana. The research investigated suitability of different methods and techniques of the DMT as well as different types of music. In the basis of the reseach investigation, the model of DMT for groups of elderly was proposed for use in elderly people's homes in Slovenia.

PO3.53. Creating a friendly service model in support of persons with mild cognitive impairment in Hong Kong

WONG Law Gemma Kam Chu

In Hong Kong, there is no direct service provided to young people with Mild Cognitive Impairment (MCI) or Alzheimer’s diseases (AD).  However, the number of young people with MCI or AD is noticeable for the past five years.  Family caregivers looking for services for their young partners or siblings with MCI or Alzheimer’s Diseases have increased. Dementia care is not yet a subsidized service from Hong Kong Government.

The current approach for supporting older adults of different stages of Cognitive Impairment is the provision of in home service and or day care services in community.  The lack of support services for young onset would have negative impacts on the young age group with newly diagnosis.  For example, one male client who returned to the centre after attending the first consultation at the memory clinic claimed that he felt “he has been labeled with the diagnosis of Alzheimer’s disease”.  His wife sought professional help when her husband withdrew himself from going out for a number of months.

The qualitative study aimed to explore the perception and feeling amongst the young clients with MCI or Alzheimer Disease after attending the first consultation at Memory Clinic.  Twelve cases were identified to fit into the criteria for in depth interview. Preliminary results show that the young age group has denied or were reluctant to seek professional help due to a lack of formal and informal supports in community. Their delay seeking help behaivour has caused the concerns amongst the health professionals. Other findings showed that cultural belief and health practice are associated with seeking behavior for professional help at early stage.  It is thus important to understand the pathway from onset to finally receive treatment & care so that a unique service model of care for young onset can be developed for Chinese population.

PO3.54. Medico-legal evaluation of dementia: validation of a multidimensional assessment grid

FABBO Andrea, De VREESE Luc Pieter, GIULIANI Giuliana, BRUNO Patrizia, BARTORELLI Luisa

Introduction: The medical-legal assessment of civil invalidity (CI) with voucher (€508,55 monthly),  in persons with dementia (PWD) is complicated by uncertainty and fragmentation of laws and regulations and the absence of a standardized (i.e. objective) method of assessment.

Aim and methods: An innovative multidimensional assessment grid, proposed by the Italian Psychogeriatric Association, was applied by an expert psychogeriatrician to 1.273 consecutive person with dementia (PWD) who acted as external consultant of the Medico-Legal Boards for Disabled of the Local Health Authority of Modena. The grid evaluates functional status (IADL, ADL), locomotion (Tinetti), dementia severity (MMSE, CDR) and concomitant organic comorbidity (Comorbidity index at CIRS). The aim of the study is to verify the capacity to predict by means of the grid’s total score subdivided a priori into three levels of severity of clinical impairment (severe: 0-6; moderate: 7-8; mild to absent: 9-12), the three possible decisions made by the Board (civil invalidity (CI) of 100% with voucher CI of 100% without voucher, CI <100%), using the area under the Receiver Operating Characteristic curve.

Results: PWD median age was equal to 84.5 years with a female predominance (66.1 %). Probable Vascular dementia was the most prevalent form of dementia (n = 452) in this sample, followed by Probable Alzheimer's dementia (n = 330). The areas below the ROC curve of these three scores predictive of the Board’s decision, were 0.92, 0.69 and 0.92 for CI of 100% with voucher, CI of 100% without voucher, CI <100%, respectively. A logistic regression analysis showed that CDR, Tinetti and MMSE scores in order of importance predict significantly the recognition of an economic support to PWD and their families, explaining almost 62% of the variance and classifying the PWD with an overall accuracy equal to 94.8 %.

Conclusion: These results confirm the validity of this multidimensional evaluation grid in the medical-legal field and should act as a stimulus to both the Forensic Medicine and Geriatrics to elaborate together with the National Institute of Social Security a shared standardised protocol for the assessment of the variegated conditions of disability in PWD in relation to their "multidimensional context" of life and care.

PO3.55. eHealthMonitor: Informal caregivers’ perspectives on a tailored eHealth support service within the community


Background: The European eHealthMonitor project (eHM) developed an individual and interactive web portal for the Dementia care setting: The eHM Dementia Portal. It aims to provide targeted and personalized support for informal caregivers of persons with Dementia in a community-based care setting.

Methods: An evaluation study of eHM was conducted from June to September 2014 and followed a before-after, user-participatory study design (face-to-face interviews). In total 25 informal caregivers (mean age=58; 48% female) used the portal over the 12 weeks study period. The portal was linked to local Dementia institutions (hospitals, caregiver counselling organizations). Caregivers were mainly spouses (44%; n=11) or children (36%; n=9) of the person with Dementia.

Results: Overall, two thirds (65%; n=15) indicated that they would use the eHM service if they had access to it and 83% (n=19) think that eHM is a good concept. Over half of the caregivers reported an improvement of their individual situation by: improved communication with medical professionals (65%; n=15), individualized information acquisition (65%; n=15), overview about course of the disease (symptoms, care) (65%; n=15), information acquisition from home (65%; n=15) as well as information about local community support opportunities (61%; n=14).

Conclusion: Our findings suggest that the eHM service proved to be a valuable post-diagnostic eHealth support service for the home-based Dementia care setting, especially for caregivers living in rural areas. The provision of support and guidance to enable especially elderly caregivers to use the eHealth service properly is a crucial precondition. Future developments should focus on improved usability and implementation of eHealth support services into existing community service infrastructures.

The research is funded by:

  • EU-ICT FP7, project ID 287509;
  • Emerging Fields Initiative (EFI), Friedrich-Alexander-University Erlangen-Nürnberg (FAU), Human Rights in Healthcare.

PO3.56. Cross-national differences in the psychological profile of caregivers of people with dementia in Europe


Introduction: People with dementia generally require a high level of care, and informal caregivers such as spouses and daughters are the ones that provided it. Dementia has an important impact on these informal caregivers, who manifest a high prevalence of health and psychological problems. Although numerous studies have revealed a psychological profile of these caregivers, there is a lack of studies that compare this profile among European countries.

Objective: The main aim of this study is to analyze caregivers’ socio-demographics and psychological aspects to explore possible differences in the caregiving of three European countries (Spain, Denmark, and Poland).

Method: One hundred and one primary informal caregivers (Spain n=39; Denmark n=31; Poland n=31) of people with dementia were recruited. Socio-demographic information, aspects related to work situation, context of caregiving, types of support that caregivers used, care-recipient characteristics, social support, self-rated health, depressive symptomatology, sense of competence and perceived satisfaction with caring were recollected.

A comparison in the different measures among the three countries was used through chi-square with qualitative variables, and through one-way ANOVAs with the quantitative variables.

Results: Significant differences were observed among countries in caregiver age (F(2,96) = 8.6), type of family relationship (Chi-square = 30.5), leave the work to take care of the relative (Chi-square = 9.3), caregiving weekly hours (Chi-square = 8.8), psychoactive drug intake (Chi-square = 8.2), care-recipient level of cognitive impairment (Chi-square = 22.8), caregiving satisfaction (F(2,98) = 16.9), and in several types of support.

Conclusions: These results address important differences among European caregivers and therefore, they map which characteristics should be taken into account when studying the caregiving process in these countries. These findings appear useful for developing a better caregiver health care compromise in Europe.

PO3.57. Integrative Validation Therapy (IVA) in a long-term care facility for people with dementia.


In order to accord people with dementia more respect and appreciation, Naomi Feil developed validation therapy which has been modified by Nicole Richard since 1993 and which has resulted in Integrative Validation Therapy (IVA). Since then, IVA has been implemented in many care facilities in Germany and some other European countries.

Research questions: Two research questions were examined: 1. With which categories can we describe the praxis of Integrative Validation? 2. How is Integrative Validation evaluated by nurses and relatives?

Methods: A Fourth Generation Evaluation Study was conducted with IVA practitioners, IVA trainers, a neurologist/psychiatrist and relatives of people with dementia living in a care facility in Germany. The participants were questioned on their experience with Integrative Validation Therapy in 18 individual problem-centered, guideline-based interviews. These interviews were supplemented by four unstructured participating observations of interactions between IVA practitioners and residents in the care facility. The results of the individual interviews and the observations were validated in a group discussion, inconsistencies were resolved and unresolved questions were answered to the best possible extent. The questions remaining unresolved were discussed in a further group with the originator Nicole Richard and 14 IVA trainers. The result of this Evaluation is a case study on the implementation of Integrative Validation in a care facility.

Results: The empirical study led to the development of a model of Integrative Validation Therapy describing conditions, components and outcomes of Integrative Validation in the case investigated. In the presentation some components and outcomes are described in detail and illustrated with the help of examples.

Discussion: The results of this study show that IVA has the potential to support person-centered care, for the interviewees associate effects with IVA that cater to the needs of people suffering from dementia. Personhood as defined by Kitwood is only possible if elementary needs are met and these are appreciation, love, comfort, attachment, inclusion, occupation and identity. It is obviously easier to satisfy some of these needs by implementing IVA as the present study shows.

PO3.58. A self-management tool for people with dementia and their carers

MCLEISH Kate, JARVIS Rebecca, HILL Derek, DE WAAL Hugo

One in five of us will get dementia if we live long enough. There is a growing need to provide post-diagnostic support to more people. With little advance in pharmacological approaches, we need interventions that make a difference. Internet usage by over 65s rose 27% in 2012/13 so web-based tools are an attractive option for people with dementia and their carers.

We have developed a tool which:

  • puts the person with dementia at the centre of their care
  • reassures family members
  • helps professional health and social care workers provide support
  • alleviates the isolation that people with dementia experience.

The tool is a web-based platform which enables people to record important information, such as their interests, likes and dislikes, daily routines, concerns. This allows them to ‘build’ their own personalized action plan. People with dementia and their carers have informed the features and design.

Populating the tool is a joint exploration of someone’s individuality. Even close family members report being surprised how it has unearthed previously unknown issues and events in someone’s life. An action plan is distilled directly out of this material which is unique and relevant to the individual, in contrast to traditional care planning, which often is experienced as not taking someone’s personhood into account or neglecting important issues. Being online, it is always available, can be updated and shared according to the person’s preferences including with service providers and family and friends who may live a long way away providing valuable reassurance to them.

A prototype has been evaluated with 20 people with dementia and 18 carers to inform design modifications and new features. Responses were extremely positive with 37 out of 38 participants saying they would like to use it again. We continue to develop and evaluate the tool including availability in multiple languages.

PO3.59. Caring for People with Dementia in the Dementia-friendly Pharmacy? – Presentation of Community Projects in Pharmacies and Findings from Evaluation

PLUNGER Petra, TATZER Verena C., REITINGER Elisabeth, HEIMERL Katharina

Background: People with dementia and their caregivers face many challenges in the complexity of health care systems. Issues such as lack of integration of services (Höfler, Bengough, Winkler, & Griebler, 2015) and stigma are challenging for people with dementia and their informal caregivers in Austria. Moreover, people with dementia may have other health issues that lead to complex medication management.

Methods: The project “Dementia-friendly Pharmacy” uses a participatory research approach to promote the health and quality of life of people with dementia and their caregivers. In this approach, knowledge is produced in collaboration with the pharmacies, the local self-help group “Alzheimer Austria” and caregivers of people with dementia.

Results and Discussion: In the middle phases of the participatory research project, workshops for community pharmacists were created covering the topics of “pharmaceutical care”; “networking in the community” and “communication”. In the current phase of the project, the pharmacies conducted pilot-projects in their individual pharmacies based on a needs-assessment with caregivers of people with dementia.

These projects range from issues related to the core-business of pharmacies - to improve the pharmaceutical care for people with dementia and networking with local medical doctors - to community-projects. The richness and creative approaches of the individual pharmacies in their local context is inspiring and shows the usefulness of a systemic approach in the local community.

A conceptual analysis of the projects and what “care” means in the context of dementia and pharmacies, three basic processes were identified: pharmaceutical care; informal consultation on care issues and community based activities. Raising awareness and networking with partners in the community are other vital elements of the “dementia-friendly pharmacy”. Examples of individual projects, issues of sustainability and the role of “dementia friendly pharmacies” in the public health context will be presented together with results of the projects evaluation.

PO3.61. Professional evaluation with persons with dementia and family carers: case managers’ dilemmas


Introduction: Case manager’s offer prolonged support to their clients: people with dementia and their family carers. They coordinate various care and well-being services. Evaluating their professional work may improve its quality and indirectly the quality of their clients’ lives. This study aims to provide insight in the way case managers evaluate their work.

Methods: We used a mixed methods approach combining an online survey with semi-structured interviews with case managers. The survey findings helped to construct the interview topic list. The case managers participated in three regional care improvement teams aiming to improve their professional work processes.

Results: Survey data of 57 (out of 145) case managers are available and 12 case managers were interviewed (interviews lasted between 37 and 59 minutes). Case managers continually evaluate the quality and current status of their clients’ lives. However, they rarely evaluate their professional work and results directly with their clients. Case managers are ambivalent about evaluating their work: they appreciate that evaluation may improve the quality of their work, but fear that setting and evaluating goals may affect the personal relationship with their clients which they cherish. They also wonder if an evaluation is in the clients’ best interest as it can be emotionally demanding to look back. Case managers miss a methodical approach in prior support steps which makes evaluation difficult.

Conclusion and Practice implications: Case managers do not systematically evaluate their professional work nor do they involve their clients in the evaluation of the support provided. Improving case managers’ professional evaluation may be facilitated by organisational processes and training. These should, however, take the ambivalence of case managers towards evaluation into account.

PO3.62. Interaction between case managers and persons with dementia or their family care givers: theory and tools, based on international practice.

SMITS Carolien, AAN DE STEGGE Cecile, Jukema Jan, SPRUYTTE Nele, PIANOSI Birgit

Introduction: People with dementia and their family care givers interact frequently with their case manager. This interaction is meaningful to both people with dementia, their carers and the case manager.  Case managers aim to offer person centered care, but need support to achieve optimal interaction. This study supported case managers and their clients, by constructing and evaluating interaction tools in case management practice.

Method: We used Practice Development in an action research approach. Four communities of practice (COP) in The Netherlands, Belgium and Canada were established. During twelve months these COP’s constructed and implemented improvement plans focussing on the quality of the interactions. Teams could choose their own goals. Researcher-coaches and higher education students supported the COPS.

Results: The efforts of the COPS, the students and the researchers resulted in new insights and tools. The case managers piloted these tools in practice and reflected on their meaning. The tools concern three interaction domains: (I) Context of interaction: (a) health literacy observation list, (b) Sociogram (c) Energy diary for family care givers (d) Communicative style detection list (II) Interaction: (a) Telephone Interaction Facilitator (b) Interactive scenario choices regarding education (c) Self evaluation in Motivational Interviewing (III) Tools for reflection on interaction: (a) Self reflection on interaction; (b) Reflection on Motivational Interviewing (c) Communication Cues (d) a translated DEMTEC. Furthermore, the validity of a communication model (De Haes & Bensing) was explored for case management. This presupposed a shift from ‘client’ to ‘personal network’. 

Conclusion and Practice implications: Developing tools for case managers in an international context is complex. Nevertheless, the resulting model and tools, based on careful piloting and critical reflection, are promising. Their practice based development trajectory may facilitate actual use by case managers in the immediate future. However, they need further testing before implementation in international practices.

PO3.63. Experiences in dementia care networks in using an interactive web tool for making shared decisions


Background: In an earlier study we developed the DecideGuide, an interactive web tool for facilitating shared decision-making in dementia-care networks. The DecideGuide provides a chat function for easier communication between network members, a deciding together function for step-by-step decision-making, and an individual opinion function for eight dementia-related life domains. The aim of this study was to gain insight in the user friendliness of the DecideGuide, user acceptance and satisfaction, and participants’ opinion of the DecideGuide for making decisions.

Materials and methods: A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the DecideGuide. Structured interviews took place at the start, middle, and end of the field study with people with dementia, informal caregivers, and case managers. Four observations of case managers’ home visits focused on members’ responses and use of the tool.


  • The user friendliness of the chat and individual opinion functions was adequate for case managers and most informal caregivers. Older participants, with or without dementia, had some difficulties using a tablet and the DecideGuide. The deciding together function does not yet provide adequate instructions for all users. The user interface needs simplification.
  • User acceptance and satisfaction: everybody liked the chat’s easy communication, handling difficult issues for discussion, and the option of individual opinions.
  • The DecideGuide helped participants structure their thoughts. They felt more involved and shared more information about daily issues than they had done previously.

Conclusion: Participants found the DecideGuide valuable in decision-making. The chat function seems powerful in helping members engage with one another constructively. Such engagement is a prerequisite for making shared decisions. Regardless of participants’ use of the tool, they saw the DecideGuide’s added value.

PO3.64. Focus on dementia in acute care – changing minds, improving lives in Scotland


Improving acute care was one of two key change areas in Scotland’s first (2010) and second (2013-16) National Dementia Strategy, to ensure that, when admission to hospital is unavoidable for people with dementia, the care experience is safe, coordinated, dignified and person-centred. In support of Commitment 10 of the second National Dementia Strategy, ten care actions have been identified to support the implementation of the Standards of Care for Dementia in acute hospitals.  This project forms part of the ‘Focus on Dementia’ programme, a partnership between the Scottish Government, Joint Improvement Team and Alzheimer Scotland.  The programme focuses on four of the ten care actions: identifying leadership structure to monitor and drive improvements; developing the workforce against the Promoting Excellence framework; working as equal partners with families & carers; minimising & responding appropriately to stress and distress.

An improvement collaborative approach with Alzheimer Scotland Dementia Nurse and Allied Health Professional (AHP) Consultants and multidisciplinary teams within each NHS Board in Scotland is being taken to support this work.  This approach supports NHS Boards to build capacity and capability for improvement, to share data, progress, challenges and opportunities.  A measurement framework and data reporting tool were developed in collaboration with the NHS Boards. Quantitative data for improvement is being gathered on an ongoing basis.  Qualitative data is being gathered through a variety of approaches to understand staff, carer and patient experience of dementia in relation to co-ordination of care and safety and how the care actions in acute are impacting on these elements. The results of this work will inform the National Dementia Strategy for Scotland in 2016 and will make recommendations about the adoption, spread and sustainability of this model across Scotland.

PO3.65. Innovative Approaches to Care - Care focused on the individual


Until 2020, the Resolution of the National Social Protection Programme provides for increase the ratio between the users of community forms of social protection and the users of institutional forms of social protection

Currently, this ratio amounts to approximately one to two, which means that for one user of community forms of social protection there are two users of institutional forms of social protection.

Until 2020 the aim is to significantly strengthen community forms of social protection, increase the number of their users and not to further spread the institutional care more than it is necessary (ReNPSV 13-20, OG of the RS, No. 39/2013).

In the Institute for care at home (ZOD), we have many years of experience and a high standard of services.

In the framework of an individual approach and comprehensive treatment of individuals we want to complement existing services in the context of other health care services at users’ home, namely physiotherapy, occupational therapy, speech and language therapy, psychotherapy and nursing, which is a novelty in the Slovenian area and represents an important step forward towards a modern approach of working with elderly at home.

Based on the search of various and additional options for a new approach to work with the users, the demographic situation of the population in the Municipality of Ljubljana (MOL), and thereby an increase need for specialized approach to work with elderly, and based on many years of experience in direct work with users, acute needs of the assistance for people with dementia and their families, and based on the initiative of the founder, we believe that dementia needs a special attention in the Municipality of Ljubljana.

An organized home care would offer professional and comprehensive approach to the persons with dementia and facilitate the home care to their families.

PO3.67. Small scale living for people with dementia “Cornelia Hoeve”


Background: The “Cornelia Hoeve” is a small-scale home where twelve people with dementia live. Care is based on the belief of the importance of the surrounding on the mood and behaviour of persons with dementia. The care is person centered; residents can follow their rhythm of life as they were used to.

Research goal: Describing and evaluating the aspects from the care concept  that influence the quality of life of the residents of the “Cornelia Hoeve” from the perspective of  the person with dementia, the family caretakers and the nursing staff.

Method: The research consists of desk research and a mixed method design. The Mini Mental State Examination (MMSE) (Folstein, Folstein, McHugh,1975)  is used for determining the cognitive impairment. The Qualidem (Ettema, 2005) is used for the measurement of the residents’ quality of life. Interviews have been done with the residents, their family caretakers and nursing staff in combination with participative observation.

Results: The residents of the “Cornelia Hoeve” are satisfied with their apartments, the food, the atmosphere and some of the activities, although this varies per person. Most residents don’t initiate activities without help.

Overall family members are positive about the personal approach of care being provided, the physical space of the residents and the communication with the nursing staff. However, communication with the staff at the same time is also mentioned as a point for improvement. Family members indicated that the activities done at the care farm are not appropriate for and meaningful to all residents.

The nursing staff experiences the work environment as pleasant due to the positive contacts with residents, family, and colleagues. The nursing staff wishes improvement of daily activities. Based on the results further research is recommended focusing on which activities are appropriate and meaningful for residents in different stages of dementia.

PO3.68. Education within dementia care

DØBLE Betty Theodora Sandvik, REGGESTAD Marta Sofie

As part of the Norwegian Dementia plan 2015, an in-house educational program is implemented in the primary care systems. The ABC-program consists of theoretical material in three booklets, study groups for multidisciplinary reflection and semi-annual seminars, aiming at developing expert knowledge in primary health care for persons with dementia. Each booklet is expected to be completed within one year. One includes theories around person-centered care, and environmental treatment.

Methods: Ageing and Health has been assigned responsibility for implementation of the education and coordinates the teaching conducted by our collaborators in primary and specialist care. Successful completion requires that all booklets are read, and that participants attend at least 80% of group meetings and seminars. All participants receive a certificate of competence.

Professional caregivers and unskilled employees are equally eligible to enroll in the course. This model has been approved by diverse professional trade unions as part of a specialized clinical training.The program cooperates with a model for skills upgrading too, which lead to formal qualification as health-care worker.

Results: More than 94% of the Norwegian municipalities take part in the education, 20.000 caregivers from a variety of disciplinary backgrounds have participated. Of these 22% where nurses (RN), 57% were enrolled nurses ore skilled workers, 2% assistant occupational therapists and 12% were unskilled careers. Recruitment to the skills upgrading program increases. Over 400 employees participate and 71 have passed the exam in Health Work. In the primary care systems leaders aligns, and gives attention for the educational programs.

PO3.69. Innovative care - Person centered care


Homes for elderly in Slovenia have been changed dramatically in last 10 years - transformation started with person centered care and reflects smaller size of buildings, colorful painted in nice warm shades, equipped with comfortable furniture and personal belongings of tenants which contribute towards homeliness and through nice atmosphere create wellbeing.

New psychosocial paradigm has changed the content of services and enhanced their quality - the influence of consideration and respect of individual's dignity and needs powerfully influenced also on approach of employees, regardless to their education or field of work. Individual centered care was automatically continuing of the transformation change, started through new psychosocial concept and is built on principles of active participation of each tenant and his/her family or caregiver, complementary integrated multidiscipline approach, based on individual plan and appropriate chosen services.

We are going to present few examples of good institutional practices in Slovenia, which is oriented into creating of family like environment, considerated the principles of deinstitutionalization and normalization.

PO3.71. Supporting carers of people with dementia in the UKwith peripatetic specialist admiral nurse clinics


Admiral Nurses are dementia specialist nurses working in various health and care settings in the UK.

In 2013 and 2014, Admiral Nurses provided 1:2:1 drop in clinic sessions for families at two national Alzheimer’s Shows in the UK.

The clinics proved extremely popular and accommodated a high volume of visitors from all parts of the UK seeking information on many aspects of dementia, key subjects and percentages of each as follows: 

Physical health and wellbeing of the person with dementia 82%

Mental health and wellbeing of the person with dementia 72%

Skills in coping with behaviour / symptoms 72%

Knowledge and understanding of dementia 58%

Mental health and wellbeing of the carer 58%

Practical support 44%

Physical health and wellbeing of the carer 34%

Understanding treatments and managing medication 24%

Allowing time for self (carer) 24%

Looking to the future (carer) 17%

To help address the needs identified, Dementia UK will develop Peripatetic clinics both in the community and in the workplace as follows:

        1.  In partnership with the Charity for Civil Servants, Admiral Nurses will provide 1:2:1 clinics in two workplace sites in the UK monthly for a year. The clinics will offer appointments to employees who may not have access to specialist dementia services or support, and who may also find it difficult to take time off work to attend appointments.

Admiral Nurses will also provide educational sessions to managers on site to help understand the needs of carers, and promote greater flexibility for staff who are carers.

       2.  Dementia UK will develop roadshow clinics around the UK. Working with local stakeholders and commissioners, Admiral Nurses will provide 1:2:1 clinics across the country increasing access for carers to specialist nurses.

This pilot will be unique in delivering Peripatetic Dementia Care Admiral Nurse clinics across the UK

PO3.72. Using the Logic Framework to model complex nursing interventions with families living with dementia: Admiral Nursing in the Community


Evidencing the impact of work carried out with clients is increasingly becoming a requirement in the healthcare sector. The Francis Report in UK highlighted how meeting targets isn’t sufficient to ensure quality of care. A more rounded approach, looking at actual outcomes for clients, offers a better way to explore service’s effectiveness. However, unpicking complex interventions can be challenging.

Admiral Nurses, specialist dementia nurses, aim to provide holistic and person centred support to families living with dementia, working in the community and other settings; interventions can be very complex and multidimensional.

To support teams working in the community to evaluate their work, we adopted a project approach developing a Logic Framework: by conceptualizing the caring continuum as an ongoing but more discrete project, multi-layered dynamics can be more easily articulated, facilitating and focusing the evaluation process.

As a tool, the Logic Framework is widely used in the International Development field and has been developed from the late 60s onwards. It facilitates the process by breaking project cycles down into constituting elements (Situation, Inputs, Outputs and Outcomes in the Short, Medium, and Long term) and by visualizing causal connections. This promotes informed reflection on impact dynamics, enhanced understanding and more informed choice of indicators, whilst supporting ongoing collaborative work and open negotiations between stakeholders.

The model that will be presented in this poster is based on data derived by questionnaire responses of family carers in receipt of Admiral Nursing support and observations on clinical work from Admiral Nurses. It was subsequently reviewed by Admiral Nurses and Business Development Officers and will find application in informing local evaluations of Admiral Nursing Teams, as well as support negotiations with commissioners.

This approach can find vast applications across the board, for both clinical and non-clinical work, promoting accountability and reflective practice.

PO3.74. Norfolk admiral nurse pilot: an evaluation report


The Admiral Nurse Service was launched in Norfolk in 2013 for two main reasons: firstly as a direct response to the narratives of the carers of dementia patients and secondly from an examination of Norfolk’s demographics that highlighted a significant need for the service. 20.8 percent of the county’s population is aged over sixty five and 10.1 percent is aged over seventy five. The significance of these statistics is emphasised by the 2011 census, showing that 16 percent of the UK was aged over sixty five.

During the two year pilot of the Admiral Nurse Service, a detailed and independent evaluation was carried out, utilising a mixed methods design and considered the views of carers and professionals with equal weighting. The results demonstrated that the service is “invaluable” and the full report is available from Dementia UK. In addition to the clinical outcomes, a cost benefit analysis demonstrated considerable savings, specifically; the Admiral Nurse Service saved health and social care in excess of £443,593 over the period of 10 months. 

Furthermore, a new service pathway is proposed taking its evidence base directly from the qualitative findings of the evaluation and this is the focus of this poster. The Admiral Nurse Service in Norfolk now offers tiered support, and its grading is a joint decision between carer and Admiral Nurse. It is based on the carer’s perception of their situation, how able they feel to adopt the role of carer and the impact these will have on their ability to function. The new service pathway proposes that there will be a significant increase in the number of carers that are supported, with a level of support tailored to meet individual needs, whilst further improving on savings to health and social care.

PO3.75. New model of dementia end of life practice-how partnership working can empower people to live well and die well with advanced dementia


Access to End of Life support for people living with dementia is often very limited, impacting significantly on their experience at the end of their journey. The new Dementia End Of Life Practice Development team in Cheshire, England, is a new collaboration between the End of Life Partnership Group, three Clinical Commissioning Group, and Mental Health set up to improve the experience of, and attempt to address the inequalities for, people living with advanced dementia.

The multi disciplinary, cross professional team includes a social worker (team leader), a district nurse (educator/facilitator), a mental health nurse (Admiral Nurse) and an allied therapist.

The poster will encapsulate the aims and planned outcomes of the project, illustrating a model of close partnership, working in a structured and reactive way.

The team will look at supporting the wider social and healthcare workforce, as well as the population living with advanced dementia, to plan for future care and recognize the dying phase of the disease. The aim will be to facilitate complete advanced care planning for people with dementia, unlocking and enabling access to holistic, compassionate, palliative and person centered care that results in a peaceful, painless death in a preferred place of care (PPC).

In particular, the project is aiming at achieving the following:  people with dementia remaining in their preferred place of care; increase in patient and informal carer satisfaction and experience; reduction in unnecessary hospital admissions at end of life; reduction in length of stay in hospital; reduction in accident and emergency admissions in last year of life; increase in knowledge and confidence of those caring for people with advanced dementia; end of life care as a core component of workforce education; sharing of knowledge, best practice and information across the partnership; raise awareness of dementia end of life issues and inequalities.

PO3.76. Culinotherapy in Alzheimer’s disease: new strategies and insights for associate non-pharmacological therapies


In recent years there is an increase interest in developing new approaches for the treatment of dementia and among them Alzheimer’s disease (AD) by using alternative strategies which can be developed in parallel to pharmacological therapies. Culinotherapy (considering both diet habits in a preventive manner and more actively cooking participation and skills) is gaining more and more acceptance and recognition. In this sense, within Alzheimer León we have recently developed a program (“Actívate Cocinando”: “Get active cooking”, now in its third year) in which 18 patients in early AD phases are confronted to multiple tasks ranging from managing aliments shopping including simple budget management, to food processing and preparation, culminating in a final prepared dish and degustation done in a voluntary manner considering the patient and family wishes. In this innovative programme we also count with the fundamental help of 18 independent gastronomic professionals and social educator. Our program focus is based in developing a multisensory stimulation approach providing a partial autonomy behaviour by keeping: i) social skills and ii) sensory processing and integration, which know that potentiates cognitive and mnesic functions. So far, we have demonstrated that, first patients are more integrated with their fellows and family reacting in a very active manner and socializing more getting away from isolation behaviour (up to 95 %) facilitating their interaction and day-to-day activities. In addition, 95% of the patients increase their attention and concentration levels, which are directly related, with a 90% in both activity levels and long-term memory recovery based on sensory reminiscence. Furthermore, all patients ameliorate their mood and esteem in 95% and 85%, respectively. Finally, patients seem not only to be more integrated within the day care center but also to show a slower development of the associated cognitive and mnesic alterations associated with AD.

PO3.78. BRAIN FITNES – vaje “ena na ena” po meri posameznika


Urjenje spomina in pozornosti, sproščanje in tehnike pomnjenja so dejavnosti, zaobjete v Možganskem fitnesu, ki pozitivno vplivajo na proces pomnjenja, ustvarjalnost, komuniciranje, počutje, na vsakodnevno življenje osebe z demenco, in hkrati kot preventiva proti bolezenski izgubi spomina tudi na zdravje vseh najbližjih, skrbnikov oz. institucionalnega osebja.

Prvi pogoj za uspešno delo trenerja spomina predvsem v začetni stopnji bolezni je, da skrbno vzpostavi odnos z osebo z demenco, da podrobno seznani z življenjsko zgodbo, kulturnim okoljem, ustvarjalnimi obdobji, dejanji, dogodki in ljudmi, ki so bogatili osebne poti, ter da z vajami, ki spodbujajo umske aktivnosti, seznani tudi svojce. Zaradi upada kognitivnih sposobnosti, slabših sposobnosti komuniciranja, prepoznavanja in povezovanja, je najpomembnejša prva informacija s strani svojca, ki tudi v izvedbi dnevnih vaj odigra ključno vlogo. Le z doslednim upoštevanjem življenjske zgodbe osebe z demenco in s prepoznavanjem čustvenih reakcij je Možganski fitnes učinkovit, prijetna dejavnost, smiselna, tudi v razvedrilo, opogumljanje, spodbujanje in nagrajevanje. Poudarek je na vajah, ki so sestavljene na osnovi življenjske zgodbe in psihofizičnih lastnostih, prepletene v pet sklopov aktivnosti:

  • vaje za izboljšanje pozornosti:
  • delo s čutili (sluh, vonj, otip, vid, okus) in čustvi (jeza, strah, veselje).
  • Vaje za kratkoročni spomin:
  • pomnjenje besed, številk, seznamov, obrazov in imen
  • Z vajami izboljšujemo sposobnost shranjevanja in priklica informacij
  • Vaje za dolgoročni spomin:
  • s pomočjo delovnega zvezka in v obliki vodenega pogovora udeleženci organizirajo gradivo, strukturirajo in povezujejo informacije
  • Tehnike pomnenja:
  • mnemotehnike kot pripomoček za enostavno shranjevanje, povezovanje in priklic informacij
  • Tehnike sproščanja in vaje za ravnotežje:
  • med hojo, stoje na mestu, med sedenjem.
  • Če živimo zgolj za trenutek – tudi minemo z njim.  Če trenutek povežemo s spominom, vnesemo trajanje.

PO3.81. Living with dementia - every day

CVETKO Tatjana, HOJAN Vesna, BIZJAK Vesna

Background: Recognition of early dementia in family medicine still takes carefull steps in management of chronic diseases. Facing the dementia at home is always a challenge for family members. In every day care of patient, reorganization of family life is as important as seeking for help and assistance of external social services. In long-term care of patients with dementia, caregivers need a lot of support and practical suggestions how to organize their daylife and avoid burnout. 

Aim: to discuss the recognition of dementia in family medicine and show specific approaches to promote different dailiy activities in organization of day life of persons with dementia, 

Methods: brainstorming session and lectures with practical demonstration and video presentation

Results: Presentation of the programs of social interventions and learning projects about dementia homecare.

Three different projects will be presented:

One day school - Living with dementia every day– parallel program for caregivers and patients with dementia. Caregivers learn about dementia and get some practical skills and information, patients with dementia attend the program of occupational therapy and different activities in daily care

Dementia care at home – program of lectures about personal care and assistance in rural area for lay public with demonstration of handling the immobile patients 

Promotion of physical, mental and social activities as a way of preventing burnout of caregivers:

Conclusions:Practical approaches of learning about dementia-care empower family members and provides them the opportunity to learn about dementia and cope with problems that dementia brings to everyday life.



Last Updated: Monday 05 October 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene