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PO3. Innovative care

Detailed programme and abstracts

PO3. Innovative care

PO3.1. Fixing dementia care in hospitals

MCNAMARA George

Alzheimer’s Society’s Fix Dementia Care hospital report uncovered that poor dementia care is widespread, that the quality of care varies widely between hospitals and that millions of pounds are being wasted on substandard care. Through evidence collected from Freedom of Information requests to hospital trusts regarding key indicators of dementia care (falls, length of stay, discharge, emergency readmissions); a survey of carers and people with dementia regarding their experiences in hospital and an economic analysis of hospital statistics against NHS tariffs to assess the money wasted on excess length of stay, falls and emergency readmissions We found that:

  • only 2 per cent of those caring for people with dementia felt that all hospital staff understood the specific needs of people with dementia
  • thousands of people with dementia are being discharged between the hours of 11pm and 6am each year
  • in the worst performing hospitals, 52 to 70 per cent of people aged over 65 who had a fall in hospital were people with dementia
  • people with dementia stay five to seven times longer than other patients over the age of 65 in the worst performing hospitals
  • £264.2 million was wasted due to poor dementia care in hospitals in 2013/14.

Fix Dementia Care calls for national recognition of these issues and for government to ensure that hospitals take dementia seriously, through the implementation of strategic planning that demonstrates how they will fulfil the care needs of people affected by dementia. Their progress should be measured against this dementia plan and published annually to demonstrate improvement and quality of care.  In addition to this, Alzheimer’s Society is working with acute providers, developing key services that support staff, people with dementia and their carers in innovative, integrated and effective ways.

PO3.2. Activities care crew: supporting patients with dementia in an acute hospital setting.

BROOKE Joanne, HERRING Sharon

In the UK there has been a drive to improve the care patients with dementia receive in acute hospitals. The Royal Berkshire Hospital has implemented a wide range of initiatives including changes to ward environments, dementia education and training, Patient Leaders, and the development of an Activities Care Crew. Members of the Care Crew work independently as a team and cover eight wards within one directorate. The aim of the Care Crew is to provide continuous support, care and meaningful activities for people with dementia over and above that provided by other healthcare professionals. 

The Activities Care Crew is staffed by five healthcare assistants who have completed a program of training. On a daily basis the Care Crew receive referrals from nurses to identify patients who may require intensive support. The Care Crew provide one-to-one care, as well as planned group activities, but remain flexible to respond to the needs of current patients. The Care Crew also supplement ward teams at key times of the day to support patients’ activities of living.

Consistent and continuity of care for patients with dementia provided by the Activities Care Crew has impacted on a non-significant but steady decline in the number of falls per 1000 bed days with a 50% reduction in falls leading to serious harm (fractured neck of femur) against the backdrop of a non-significant but a steady rise in the number of emergency admissions in people over the age of 65.

The completion of a formal evaluation of the Activities Care Crew has led to the expansion of the model across Royal Berkshire Hospital. Further expansion of the role of the Care Crew is currently occurring, for example supporting opportunities to take patients out of the ward environment and the development of a designated gardening area within the hospital grounds.

PO3.3. Factors that influence resilience in those caring informally for people with dementia.

BROOKE Joanne, COOPER Julie

People with dementia living in the community often receive informal care from family members and friends.  The impact of providing informal care is well documented and includes both positive and challenging elements.  Resilience relates to successful adaptation when faced with stressful life experiences, enabling individuals to positively cope in these situations.  Low resilience amongst informal carers of people with dementia has been recognized, and can result in increased stress, a higher risk of depression and reduced quality of life.  It is important for health care professionals to provide help, advice and supportive services which may contribute to the development of resilience amongst carers for people with dementia, and therefore there is a need to understand the factors that may influence this process.

A comprehensive literature review was undertaken to identify the factors that influence resilience in those caring informally for someone with dementia.  Electronic databases were searched for relevant literature published in English between January 2006 and December 2015.  From this search nine papers were identified for review, six of which were quantitative, two qualitative and one mixed methodology.  Although influencing factors were identified, there were considerable differences between the focus of the studies, samples, data collection methods and operational definitions of resilience which resulted in numerous independent findings.  Therefore synthesis of findings and a comprehensive understanding of resilience in this population was difficult to attain.  Some findings also had to be interpreted with caution due to methodological limitations. 

Despite these limitations, findings from these papers will be presented together with recommendations for future practice and research, which will include the development of services to support resilience, and the need for qualitative studies to develop a universal concept of resilience in carers of people with dementia that can underpin further research utilizing robust quantitative designs.

PO3.4. PARO the Robotic Seal: Taking research into everyday care in the hospital setting

DODDS Penny

This paper presents the implementation of PARO the Robotic Baby Harp Seal to a Specialist Service for People with Dementia in the National Health Service in the UK. PARO is a Socially Assistive Robot with Artificial Intelligence, the aim of which is to provide companionship and therapeutic engagement for older people and people with dementia.  There is already emerging a body of research showing PARO has therapeutic potential. PARO adds to the range of approaches to improve well-being, social interaction, mood, language fluency and promote psychological wellbeing around attachment, parenting, comfort and positive touch.

A Participatory Action Research design was used to explore taking PARO from the research arena into everyday clinical practice. The study illustrates how experiences of people with dementia, relatives and staff helped shape the protocols devised to support the use of PARO in acute dementia settings. An unexpected finding, not documented in PARO research to date, was the concern about how to meet Infection Prevention Control requirements. This research design embraced these concerns, addressing the issue of PARO as a ‘Hard to Clean Device’.  In parallel, an additional study is underway to explore the protocols developed on cleaning, using and Infection Control Testing of PARO over time.  Preliminary findings indicate PARO can be cleaned to meet the required standards. By using a principle taken from International Environmental Law – The Precautionary Principle – we offer a conceptual framework to support the implementation of  PARO and other approaches,  products  or ‘Hard to Clean Devices ‘ which may meet with hesitation and resistance despite these having a known therapeutic effect and potential. 

PO3.5. Farms as a place for people living with dementia

JACOBSEN Wienke

The Competence Center Dementia is a project of the Alzheimer Association Schleswig Holstein with the mission to improve and expand the supply structures for people living with dementia and their caregivers. One project of the Competence Center Dementia – “Farms as a place for people with dementia” - is a part of a federal program called “Local Alliances for people living with dementia”. By the year 2016 about 500 alliances for persons with dementia are located all over Germany.

The farm-project is an innovative approach to close the lack of support in rural areas. With the implementation of e.g. care groups on farms more people in these areas, which can often not participate because of long driving distances can be reached. For many people with dementia being on a farm and surrounded by animals or already the smell of a farm is connected with memories and this can promote their well-being. By engaging the people with dementia in different activities (e.g. caring for animals, gardening or sweeping the stable) their resources can be strengthened (e.g. social participation, physical activity, empowerment). Knowing the loved one being active and surrounded by a familiar environment can also be a relief for caregivers. Especially in the Netherlands, Austria and the UK daycares at farms (e.g. Green Care Farms) are getting a more established offer and also in Germany some similar projects can be found. Implementing offers such as care groups or recreational activities on a farm as a part of the project “Farms as a place for people with dementia” is an innovative approach. Beside background information (e.g. how to reach interested farmers and how to qualify them) experiences from an active farm can be given including pictures of recent activities.

PO3.6. Integrated dementia care

CAMPBELL Zoe, VAVASOUR Jo

Background: In January 2015, NHS England instigated ‘vanguard’ sites. Geographic areas where health and social care work together to take a lead in developing new care models – These models support improvement and integration of health and care services.

The Alzheimer’s Society has been key in ensuring new and successful models of care for people affected by dementia are central to the vanguard sites and plans.

Objectives: Health and care commissioners in the vanguard site understand the complexities people affected by dementia face.

•               A consistent support pathway in each area, from the point of diagnosis - as people move through community care and support - during hospital stays - and into residential and nursing care services.

•               All health and social care professionals in an area understand dementia.

•               People affected by dementia have a consistent and supportive offer which prevents them falling through the gaps.

•               User groups to support the development of the vanguards

Method: Development and delivery of a new model of care consisting of: a single point of contact to navigate people through care and support services. Access to information in a timely way to ensure people with dementia have choice and control over important decisions in their life. Increased access to services that enable people with dementia to stay active, engaged with their communities and empowered.

Provision of dementia specific training for staff, development of Dementia Friendly Communities; access to on-line advice, information and telephone help, advice and support.

Results: We anticipate the following results:

•               An consistent dementia pathway

•               Increased awareness of support services 

•               A timely diagnosis

•               Single point of contact

•               Dementia trained work force

•               Support in acute care (hospitals)

•               Quality dementia care in residential homes

PO3.7. High quality post diagnostic support; the learning from post diagnostic support link workers in Scotland

MACKENZIE Julia, PEARSON James

In 2012 the Scottish Government made a commitment to guarantee a minimum of one year period of post diagnostic support, from a named link worker, for those diagnosed with dementia in Scotland.  The guarantee is based on Alzheimer Scotland’s 5 Pillar Model of Post Diagnostic Support and is supported by an NHS performance target which initially runs from 2013 to 2016. Three years on from the introduction of the guarantee we have reflected on how the 5 pillar model has supported high quality post diagnostic support.

This presentation will demonstrate how Alzheimer Scotland’s post diagnostic support link workers have utilised the 5 Pillar Model as an underpinning framework, for a person centred approach, to help deliver improved personal outcomes for people with dementia.  It will also demonstrate how this approach can build greater resilience for people with dementia and those who care for them; helping them to become better equipped to enter a period of supported self–management; and to make better use of resources by reducing the need for expensive crisis interventions such as unplanned hospital admission or moving to a care homes earlier than necessary.

Through the use of case studies and reflective practice this presentation will identify the key areas of learning and the critical success factors for high quality post diagnostic support.

PO3.8. Family experiences of living with behavioural variant Frontotemporal Dementia (bvFTD):  implications of a qualitative longitudinal research study for coping and interventions

LA FONTAINE Jenny, OYEBODE Jan, LARKIN Michael

Dementia presents challenges for whole families requiring on-going adjustment and adaptation. Family relationships provide important social and emotional benefits, thus understanding the impact of dementia and the support needs of families are critical to facilitating opportunities to live well. bvFTD brings specific challenges for relationships, however little is understood about how these are experienced or how families adapt and adjust over time. This research sought to develop an in-depth understanding of the inter-generational family experience of bvFTD over time. Using a qualitative longitudinal design, nineteen people were interviewed from 7 families, including people living with bvFTD. Interviews occurred at three time points, resulting in 46 joint and individual interviews. Narrative analysis and modified constructivist grounded theory were used to understand the way in which relationships are affected and the psycho-social processes involved in adjustment and coping. Four themes were identified; We/ I before bvFTD; Challenges to we/ I (and the factors influencing these); Reconstructing, assimilating and adjusting --- Resisting, denying, remaining stuck and A changing we / I --- losing we / I. Results illustrate the influence of pre-existing family relationships on the experience of living with bvFTD. Early and ongoing challenges to relationships between family members including the person with bvFTD occurred including changes in reciprocity and increased responsibility. Levels of awareness and understanding, influenced by factors such as emotional proximity and the subtlety of early changes impacted upon individual and family adjustment and adaptation. Assimilating these changes was critical to developing strategies for managing the impact on the relationship and adapting to ‘a changing we’. For partners, grief and loss for the past relationship also occurred resulting in a parallel adaptation to a changing ‘I’. Acceptance and adaptation was critical to supporting the wellbeing of the person with bvFTD and maintaining their identity. Potential interventions are discussed.

PO3.9. Post- diagnostic support

AARNES Gry Caroline

Background: Every year approximately 10 000 new persons get dementia in Norway. Most of these get their diagnosis from their GP or an interdisciplinary team in the municipality, calleddementia teams. However, after the persons receive their diagnosis, measures of support are rarely introduced. Some municipalities provide carer education and support groups, but most families living with dementia experience no post-diagnostic support.

Post diagnostic support: Based on inspiration from Scotland’s post-diagnostic support program and the needs communicated from its members, The Norwegian health association has started a project called “Post diagnostic support”, where the goal is to develop a model for post diagnostic support, based on the need for support communicated by persons with dementia and their cares. Three municipalities, which are diverse in size, geographical placement and how they organize dementia care, have been invited to participate in the development of this project, together with representatives from Norway’s National Center for Ageing and health. The post diagnostic support model will contain mapping of needs for support within the following areas:

  • Education about dementia and where to get support
  • Maintaining significant relationships and social activities
  • Managing daily activities
  • Peer support
  • Planning for the future
  • Physical health
  • Psychological health
  • Carer support

Support and activities will be provided by municipal healthcare services and voluntary organizations, and will be selected after mapping the individual need for support.

User participation: User participation is a key element in this project. The views and experiences of people with dementia and their carers will be mapped and integrated into the project by:

  • Facilitating dialogue with people with dementia in the participating municipalities.
  • Hiring a person with dementia as an advisor.
  • Having a relative of a person with dementia being part of the project group.
  • Having a close dialogue with the user forum, consisting of persons with dementia, at The Norwegian Health Association.

PO3.10.Communicating about a diagnosis of dementia: review of practice and evidence based guidance

GUSS Reinhard, WATTS Susan

This presentation is based on the delayed paper in a suite of documents: Clinical Psychology in the Early Stage Dementia Care Pathway (2014), which was produced by the Faculty of the Psychology of Older People (FPOP), Division of Clinical Psychology (DCP), British Psychological Society (BPS).  These address issues around the early stages of dementia in adults and focus on: Pre-assessment Counselling and Consent, Cognitive Assessment, and Post-diagnostic Support, accompanied by a paper summarizing the views of people living with dementia.

The delayed paper concentrates on issues around sharing a diagnosis of dementia with the person and the family. However, communicating the diagnosis cannot be viewed in isolation from more general communication about and across the entire assessment process, so this paper also addresses the wider communication, commencing from the first stages of discussion with initial referral agents, through to post-diagnostic care.

There is a current emphasis on the importance of making and sharing an early diagnosis with people with dementia and, where appropriate, their families. The Alzheimer’s Society (2014) campaign: the ‘Right to Know’ promotes this approach.  However, it is also the case that people have an equal right not to know a diagnosis (Nuffield Council on Bioethics, 2009). This emphasis on diagnosis sharing is explicit in all the European Dementia Strategies.

In order to compile the professional guidance presented here, the current practice was reviewed and evidence considered on the factors helping or hindering persons with dementia to process the information given. Differential recommendations are made for the different stages of the diagnostic process. Particular needs, for example of families or of people with intellectual disabilities, are also discussed.

PO3.11. Tasks and qualifications for dementia care manager in primary care: comparison of the German Delphi-MV trial and the ABC medical home trial in USA

Dreier Adina, Hoffmann Wolfgang, Alder Cathy, Thyrian Jochen René, EICHLER Tilly, VOLLMAR Horst, MICHALOWSKY Bernhard, LAMANTIA Michael, BOUSTANI Malaz, AUSTROM Mary

The adequate treatment of patients with dementia (PwD) in health care systems require innovative health care integration and provision of best practice care, including caregivers at early stages. The ABC Medical Home study is an important study in collaborative care for PwD in the US [1-3]. One evaluated and innovative care concept in Germany is the ‘Dementia Care Management’ concept of the DelpHi-MV trial [4,5]. Therefore, we contrast both care models for tasks and qualifications performed by Dementia Care Manager (DCM) (N=6)) in DelpHi-MV and Care Coordinator (CC) (N=3))/Care Coordinator Assistants (CCAs) (N=13) in the ABC Med Home trial to identify similarities and differences. DCM tasks are standardized and documented in the Intervention Management System (IMS) in DelpHi-MV [6] and in the Electronic Medical Record (EMR-ABC) in the ABC Med Home trial [7,8].

A variety of tasks were performed in both trials (e.g. assessments, development of a care plan, counselling). Differences are mainly in three aspects: (a) CCs are nurses or social workers in ABC Med Home trial while nurses are DCMs in the German trial, (b) baseline assessments were conducted in the ABC Clinic and in patient’s home in DelpHi-MV. (c) DCMs perform delegated medical tasks (e.g. monitoring of vital parameter, monitoring nutrition, treatment of mobility restrictions). Qualification backgrounds of CCs/CCAs and DCMs are quite different. While CCs have a university degree (in social work or nursing), the DCMs have 3-year vocational nursing training and completed the DCM qualification [9]. Some CCAs have a high school diploma with additional training in dementia (80 hours).

In conclusion, there are similarities in the workforces in both countries. Different qualification backgrounds lead to differences in tasks performed and the degree of autonomous work. While CCs and DCMs are mainly responsible for care planning and monitoring PwD and caregivers, the CCAs predominantly assess care needs.

PO3.13. Managing diabetes in people with dementia: a realist review

BUNN Frances, GOODMAN Claire, JONES Peter, TRIVEDI Daksha, RUSSELL Bridget, BURTON C, RAIT G, BAYER A, RYCROFT-MALONE J, SINCLAIR A

Background: Rates of diabetes in people living with dementia are between 13 and 20%.  Diabetes management and diabetic self-care may be adversely affected by the presence of dementia.  There is a need to know what interventions work best in the management of diabetes in people living with dementia (PLWD) in different settings and at different stages of the dementia trajectory. The overall aim of this study is to develop an explanatory account or programme theory about ‘what works’ in the management of diabetes in people in what context and to identify promising interventions that merit further evaluation.

Methods/design: This is a realist review involving four phases: 1) development of initial programme theory/ies through a first scoping of the literature and consultation with key stakeholder groups (user/patient representatives, dementia-care providers, clinicians, diabetes and dementia researchers and diabetes specialists); 2) systematic searches of the evidence to test and develop the theories identified in phase 1; 3) validation of programme theory/ies; 4) actionable recommendations for the management of diabetes in PLWD.

Findings: We will present findings from Phase 1 of the study. This will describe how interviews with 19 stakeholders and a scoping of the international literature have informed the development of a theoretical framework about the management of diabetes in PLWD (i.e. an explanation of how interventions work, for whom, in what context and why).  Theory areas being tested include individualised and tailored clinical care, collaborative partnerships and co-production of care.

Discussion: By providing possible explanations for the way in which interventions to manage diabetes in PLWD are thought to work and how change is achieved, this review will demonstrate how to tailor an intervention to this patient group. The propositions arising from the review will also inform the design of future intervention studies.

PO3.14. The non-pharmacological management of night time agitation and sleep problems in dementia: Use of the physical environment in nursing homes

VAN VRACEM Marieke, SPRUYTTE Nele, DECLERCQ Anja, VAN AUDENHOVE Chantal

Background: In an exploratory study, we have investigated how nursing home staff cope with night time agitation (NTA) in residents with dementia. It is demonstrated that too much light and noise contributes to NTA. Furthermore, it is shown that awareness of the beneficial effects and the possibilities of the physical environment is limited1.

In this study we investigate what strategies are used by nursing home staff to manage NTA and sleep problems in residents with dementia.

Method: A non-random sample of ten nursing homes in Belgium is asked to participate. A combination of semi-structured interviews with nursing home staff and a one-night unstructured observation period will be used. Measurement of light intensity and noise level is included.

Thematic analysis of these data will foster the development of a practice checklist for nursing home staff on the non-pharmacological management of NTA and sleep problems. Each nursing home will be asked to use the checklist in order to test its feasibility and usefulness.

Results: The results of this study will strengthen the evidence base on the physical environment in nursing homes for the management of NTA and sleep problems in people with dementia.

We will validate if light and noise are indeed the most prominent factors that contribute to NTA and sleep problems.

The checklist is to be used as a self-screening instrument, providing staff with inspiration and examples on how to ameliorate the physical environment.

Discussion: The findings from this study will be used to raise awareness on the non-pharmacological management of NTA and sleep problems in nursing homes. The pilot-test of the practice checklist will provide recommendations for future refinements and research.

PO3.15. Optimizing an online psychoeducation tool about night time agitation by involving stakeholders

VAN VRACEM Marieke, SPRUYTTE Nele, DECLERCQ Anja, VAN AUDENHOVE Chantal

Background: Night time agitation (NTA) is a challenging problem for family caregivers of people with dementia. Very often NTA leads to an untenable home situation, which ends up in a transition to residential care.

Based on a literature review and an empirical study in nursing homes, an online psychoeducation tool on the non-pharmacological management of NTA in dementia is developed for family caregivers. Online interventions are easily accessible and available.

This presentation reports on the process of co-creation of the psychoeducation tool, in order to optimize implementation.

Method: An iterative and participatory process is guided by the MRC-framework. First, a paper version of the tool is evaluated in expert panels with family caregivers (N = 17). Second, four family caregivers tested the usability of the online tool by a thinking-out-loud-method. Third, professional caregivers (N = 16) discussed the content, form and implementation of the tool. Fourth, the optimized tool is pilot-tested in real-life by a group of family caregivers. Through a structured questionnaire, telephone interviews and an analysis of the weblogs and online notebooks the use and the impact of the online tool is evaluated.  

Results: In the first expert panels, caregivers advised about the amount of information, the language and the structure of the tool.

The results of the usability-study and expert panels indicated points of improvement to obtain a more visible and accessible content, such as less scrolling.

Participants also advised to make the solutions more concrete. They all agreed about the importance of the information, however, some participants questioned the need for training in using the tool.

The results of the pilot study are expected in the autumn of 2016.

Discussion: This study contributes to the knowledge about online help in dementia care. Using co-creation and a step-by-step strategy will help the implementation on a larger scale.

PO3.16. Sleep problems in family caregivers of people with dementia: A qualitative exploration

VAN VRACEM Marieke, REYNDERS Sara, SPRUYTTE Nele, VAN AUDENHOVE Chantal

Background:  Night time agitation in dementia has an enormous impact on the sleep of family caregivers. The well-being of the caregivers will diminish and indirect it influences the care for the person with dementia. Sleep problems is one of the main reasons for family caregivers to choose for residential care for the person with dementia.

The objective of this study is to gain more insight in sleep problems of family caregivers of people with dementia.

Method: Through interviews with 15 family caregivers, we discussed five topics: (1) subjective sleep problems of caregivers, (2) causes of sleep problems, (3) consequences of sleep problems, (4) interventions of caregivers to ameliorate their sleep, (5) need for and experiences with respite care for family caregivers.

Results: All participants confirmed that their sleep changed with taking care of a person with dementia. Sleep problems of caregivers include too little sleep, problems with getting sleep and interrupted sleep. According to caregivers, sleep problems are caused by night time agitation and the care at night. Additionally, they stressed their alertness at night and worrying as important causes of sleep problems. These sleep problems have an impact on the daily life of these caregivers. However, the efforts caregivers do to ameliorate their own sleep are limited. It was striking that night care at home barely is known by caregivers and that they do not consider this as a workable solution because of several elements. 

Discussion: Sleep problems is one of the heaviest consequences of taking care of a person with dementia.  Supporting these caregivers will be indispensable. Despite the small sample size, this study offers several important signals to investigate further on and to draw the attention on of the professional care.

PO3.17. Disrupting dementia: connecting the technology and dementia communities

MICHAEL Mary, DIGBY David, MIHAILIDIS Alex, WINSTEL Lisa

There is widespread agreement among dementia experts, people with dementia, and caregivers that technology has a unique opportunity to dramatically improve the day-to-day lives of people with dementia, their families, and communities. However, there is also a consensus that this potential remains largely unrealized.

We have concluded – through conversations with global stakeholders, a literature review, and an analysis of existing technologies – that there are two core challenges that currently hold back the potential for technology to “disrupt” Alzheimer’s.

First, there are communication gaps between technologists, the dementia community, and end-users. Technologists do not fully understand the disease or how it affects people pragmatically on a day-to-day basis. Further, the dementia community has not fully articulated the needs of people with dementia, and end-users lack an effective communication mechanism to provide input and feedback to the developers. Second, technologies for dementia rarely account for the disease’s progressive nature and evolving challenges. Further, most technologies expect users to learn and adapt to the technology, even as the disease progresses. This is backwards.

We propose six pillars that make up a framework for innovation to address and overcome these challenges: (1) an improved, ongoing feedback loop between developers and end-users, to create a “continuous improvement” mindset; (2) integrated networks of “smart” devices to enable independence, monitor condition, and manage care; (3) a broader set of solutions that include help for financial, legal, and end-of-life planning issues; (4) technologies that evolve and adapt to accommodate everyday challenges as users’ needs and abilities change; (5) a focus on reducing caregivers’ mental, physical, and social burdens; (6) a connecting link between all stakeholders, facilitating communication between people with dementia, caregivers, family members, healthcare professionals, and others.

This framework for innovation could guide the development of more effective technologies for dementia by improving design processes and prioritizing the everyday needs of people with dementia and caregivers. Such solutions could help to realize the potential of technologies for dementia, and improve the dementia care landscape.

PO3.18. Dementia patient navigation model: connecting the clinic, the community, and the home

MICHAEL Mary, DIGBY David, FREEMAN Harold, GAY Ruth, STEFANACCI Richard

Those affected by Alzheimer’s disease are searching for guidance both within the healthcare system and outside it. People with dementia and caregivers often struggle to manage the very complex systems of treatment and care, and they are often left confused, misled, and able only to obtain inconsistent care.

We propose for consideration an Alzheimer’s Patient Navigation Model. Patient Navigation was pioneered for oncology treatment by Dr. Harold Freeman, as a practical, patient-centered, and scalable aid for people facing a complex medical system. We believe this concept can be applied to dementia.

An Alzheimer’s Patient Navigation Model trains Patient Navigators help to facilitate planning, communication, and expectations related to treatment and care. The Model helps those affected by dementia to overcome high levels of stigma, to recognize the importance of early diagnosis, to manage the complex care needs, and to overcome the disproportionate impact on marginalized populations.

Patient Navigators are trained to help to start conversations about dementia early on, to ensure that physician visits are productive, to communicate all available options to those with Alzheimer’s and their caregivers, to provide access to curated information, to manage treatment expectations, and to provide care for the caregiver.

We believe the Patient Navigation Model is a realistic and scalable solution. In oncology, the Model has proven to decrease the cost of care and reduce hospitalizations and skilled nursing facility placements. We believe a pilot program in Alzheimer’s could prove equally successful.

We anticipate six steps to launch: identifying and training Patient Navigators, securing funding, developing best practices, launching pilot programs, embedding the model in quality measures work, and linking to other innovative programs.

Given its proven advantages, potential value, and straightforward implementation, the Alzheimer’s Patient Navigation Model could be a critical strategy to help people with dementia and caregivers to plan, coordinate, and manage dementia care.

PO3.19. People with dementia and social robots: best friends forever?

SPAN Marijke, SMITS Carolien, HETTINGA Marike

Background People with dementia want to stay at home for as long as possible. Social robots that offer interaction and companionship may help them to fulfill that wish. This study aims to identify how social robots may help people with dementia to stay at home longer and what these social robots should offer. We aim to do this in co-creation with them.

Materials and methods: Sixteen semi structured individual interviews and four separate focus groups with eight people with dementia and eight informal caregivers were conducted. These focused on what is important to people with dementia, their needs in daily life and which help they would like from social robots. The topic list was illustrated by a video clip and photos of two types of social robots, Jibo and Poppy that were presented to people with dementia.

Results: Results show that most people with dementia and informal caregivers are positive about the usefulness of social robots in their home environment. Both think that social robots can support people with dementia by providing guidance in daily life. People with dementia see opportunities in using social robots as support for their memory and in managing their daily life. They expect to feel more independent from their informal caregivers. Supportive functions mentioned are: helping people with dementia to structure daily life by giving reminders for appointments and medications, answering repetitive questions, falls detection, answering questions on the whereabouts of a spouse, and making a conversation. Both people with dementia and informal caregivers were interested to participate in further research on social robots.

Conclusion: People with dementia and informal caregivers are interested in support of social robots in daily life. Next step is prioritizing the necessary functionalities and developing four applications for a selected social robot in close collaboration with the end users.

PO3.20 Person centred support planning: London experience

MUKHERJEE Sujoy, DEWALL Hugo, HARWOOD Daniel

London Dementia Strategic Clinical Network (SCN) offers clinical leadership and advices to support London’s dementia services so that people with dementia receive a good-quality diagnosis, have access to high-quality treatment and are cared for with dignity and respect. The SCN is led by a group of expert clinicians from Primary and secondary care, social care professionals and representatives from the voluntary sector. This unique collaboration, sponsored by National Health Service, England, is working on effective diagnosis and post diagnostic care in Dementia.

The network has developed a number of guidelines primarily aimed to commissioners of services and clinicians.  The Person Centred Support planning document is to ensure that every person with a diagnosis of dementia has an individualized support plan.

It is owned by the person living with dementia and reflects their wishes & choices. The key focus of the support plan is that it is person centred and focused on solutions and opportunities. It aims to maintain important activities and relationships for the individual and optimize available support.

The guideline also focus on skills and competence of the key professional who would formulate and review the support planning with the person with dementia and their carer It also outlines the key components of a good support plan and relevant training for professionals.

High quality support planning is a dynamic document built on collaboration between person living with dementia and competent professionals and could be the cornerstone of good post-diagnostic care. Our aim is to encourage all commissioners and providers of dementia services to adopt person centred support planning as standard practice across London and beyond. 

PO3.21. Evaluation study of a web-based information and skill building program for family caregivers of patients with young-onset dementia - first results

KURZ Alexander, DIEHL-SCHMID Janine

RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) is an international research initiative conducted by eight partner institutions from six countries which is supported by the EU Joint Program Neurodegenerative Disease Research (JPND). The project aims to improve care for the underserved group of people with young onset dementia through providing a web-based information and skill-building program for their informal carers. The program has been developed on three pillars, including analysis of existing health and care services for people with YOD, analysis of the policy and information environment in six countries, and assessment of individual needs of people with YOD and their carers. Shaped by this evidence the e-learning course is composed of 7 modules with a focus on practical problem-solving, and suggestions for available support. Formats of information delivery include expert presentations, carer reports, case vignettes and interactive sections. The program that is available in three languages is currently being evaluated in a randomised and controlled pilot study carried out at three sites (France, Germany, and UK). Participants are carers of persons with a diagnosis of YOD caused by Alzheimer’s disease or frontotemporal dementia. A total of 60 carers are being enrolled. Primary outcomes are participant adherence, program-related knowledge, caregiving self-efficacy, perceived stress, caregiver burden and health-related quality of life at week 6.

The web-based program and first results of the pilot study will be presented.

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). www.jpnd.eu

PO3.22. Stability of home-based care arrangements for people with dementia – Development of a working definition in a consensus approach with expert-focus groups

KÖHLER Kerstin, von KUTZLEBEN Milena, DREYER Jan, HOLLE Bernhard, ROES Martina

Background: Most people with dementia live at home. These informal care arrangements, which are coordinated mostly by informal carers, are the backbone of home-based dementia care. Creating and maintaining stability was found out to be an underlying theme in informal caring trajectories. However, a definition of the complex phenomenon “stability” in this context is lacking. The aim of this project was to develop a working definition of stability of home-based care arrangements for people with dementia.

Methods: Ensuing from prior research a preliminary version of a definition of stability was formulated in German. This definition was discussed in a focus group with scientific experts (n=8). Content analysis revealed themes that were considered to be of relevance with regard to stability. The definition was revised according to the experts statements and was then further discussed, adapted and finally consented in a scientific colloquium (n=18).

Results: Our working definition comprehends key dimensions of stability that emerged from the consensus process. Accordingly, stability is created by the actors involved (formal/informal carers, person with dementia) if they succeed in continuously adjusting care with the objective to meet the ever-changing needs and demands of the person with dementia and his/her carer(s). In this dynamic process home-based care arrangements move on a continuum between stability and instability. The care trajectory may proceed at home until the advanced stages of dementia or finally lead to an either well-planned or abrupt transition to an institutional setting.

Conclusion: The present definition reflects the authors’ understanding of stability of home-based care arrangements for people with dementia. Currently it is used to guide a systematic literature synthesis; an English translation will be harmonized with international experts. A theory-based understanding of the complex phenomenon of stability can be used in order to define outcomes and to develop innovative interventions for the community setting.

PO3.23. Promoting suitable regional support structures through participatory research elements– A report from the research project “Utilization and usability of regional dementia support structures in the Aachen region (INREGA_DEM)

SCHIRRA-WEIRICH Liane, WIEGELMANN Henrik

There is scientific and practical evidence that high quality and suitable post-diagnostic support by formal and informal actors is from crucial importance, in order to equip persons living with dementia, their families and carers with the information, tools, resources and plans they need to live as well as possible with dementia and prepare for the future. One important pillar of an effective and multidimensional support system is a well-coordinated, individually configurable and participation-oriented regional support structure. However, what we do know is that there is still a lack of suitability of supportive arrangements in day-to-day-life. The result is that various offerings and services are not assistant enough with regard to the well-being and social participation of persons living with dementia, their families and carers. Among other things, regional and social disparities play a major role regarding the access to early and professional support after a diagnosis.

The primary aim of the research project INREGA_DEM, a cooperation of the Dementia Network Association of the Aachen region (DemenzNetz Aachen e.V.) and the Catholic University of Applied Sciences North Rhine-Westphalia (KatHO NRW) promoted by public funds, is to analyse the determinants of care and consulting service utilization as well as potential structural barriers for participation-oriented regional support structures. To improve the findings and to ensure that the recommended actions take into account the “people’s voice”, INREGA_DEM will actively involve the target group in different phases of the project.

The presentation focuses on the first steps of the transdisciplinary research process. We will describe challenges that go hand in hand with participatory research but focus on the emancipatory chances of approaches that actively involve members of the relevant target group.

PO3.24. Specialized day care centres for individuals with dementia

JÓNSDÓTTIR Ólína Kristín, EINARSDÓTTIR Erla, RÚNARSDÓTTIR Sigríður Lóa

In the capital of Iceland there are eight day care centres that specialize in care for individuals with dementia. There are 159 placements available and these centres are funded by grants from the government. The Alzheimer Association in Iceland, is responsible for the operation of three day centres.

Lack of activity and initiative is not unusual for a person with dementia, this can easily lead to the individual becoming socially isolated. Introducing dementia patients to active day care centres serves to improve their quality of life and give them a purpose. The aim of each centre is to provide activities for each individual in regards to their needs and abilities.  Everyone has the opportunity to take part in daily activities in a safe and comfortable environment.

The aim of the day centre is to:

  • give the individual independence for as long as possible
  • support physically and emotionally their ability to stay at home
  • provide support for other family members
  • encourage confidence and strengthen their self image
  • prevent the individual from becoming socially isolated from the community and increase their ability to continue with normal daily activities
  • monitor their health on a daily basis and respond appropriately when necessary

The centres work in conjunction with the Memory Clinic at LSH University Hospital. A geriatric specialist visits weekly and is responsible for any health issues that occur. The specialist takes part in family meetings when necessary. This arrangement is an important part of our service in order to provide emotional and educational support for the whole family.

Our experience in Iceland shows that it makes a great difference for the individual to attend a specialized day care centre for people with dementia in order to withhold their ability to be independent and improve their quality of life. The pressure on other family members is reduced and admissions into nursing homes is delayed. Therefore this specialized service is a desirable option for the community.

PO3.25. Peer support

BREKKE Liv Anita

Dementia Help Line

The Norwegian Health Association has for some years trained and educated peer support workers for next of kin to people with dementia. Peer support is a supplement to the formal primary care service, it is voluntary and based on the peer support workers own experiences.  The peer support workers have all long experience as next of kin, as spouses, daughters or sons. They are all available for telephone calls from other next of kin. They can be looked up by the public at the web site of the Norwegian Health Association. All the peer support workers have attended a three days training program consisting of many topics such as understanding the peer support role, empathetic listening and encouragement, coping and opportunities in the situation, the good conversation, meeting families in crisis and group management in support groups. The Dementia help line counselors are responsible for the educational program and the follow-up. The peer support workers offer guidance in a variety of ways; facilitating and leading support groups, give lectures at community educational programs for carers, receive telephone calls from other next of kin and some of them also meet people for guidance and support at home in their local community. 

Experiences. Once a year all the peer support workers meet to share their experiences. Together they reflect on their experiences and learn from each other. The feedback from the peer support workers is positive. They find the job they do very important and meaningful. They become the support, both with emotional support and practical advices, for others, which they missed for themselves when they were new in their role as carer and primary next of kin.

PO3.26. Informal care of persons with dementia and the health burden of informal caregiver – the Bavarian Dementia Survey (BayDem)

BARTH Janina, SCHALLER Sandra, MARINOVA-SCHMIDT Velislava, NICKEL Franziska, HESS Manuela, DE LA ROSA Vanessa, PAPE Franziska, GRAESSEL Elmar, KOLOMINSKY-RABAS Peter

Background:  A majority of persons with dementia (PwD) are cared for by their relatives fulfilling daily activities (ADL) and also carrying out instrumental activities of daily living (IADL). Supporting PwD is related with a higher health burden for the caregivers, which has been examined in this study.

Methods:  BayDem is a multi-center, longitudinal study located in three different sites in Bavaria, Germany. Participants are PwD and their informal caregivers. Data is collected by means of standardized, face-to-face interviews in close cooperation with local dementia institutions. The standardized survey instrument “Ressource Utilization in Dementia (RUD)” is used to record the time spent for ADL and IADL. The health burden is evaluated using three items of the Burden Scale of Family caregivers (BSFC). Baseline data (t0) and follow-up data (t6) were analyzed.

Results:  Informal caregivers (N=149) who support their relatives every day (ADL or IADL) are considered (n=109; M=64 years; 71% female). Results indicate that relatives who support PwD every day spent relatively more time for ADL (3,2 h vs. 12 min.) and IADL (3,3 h vs. 1,7 h), when compared to the caregivers who do not daily support a PwD (n=48; M=58 years; 56% female). The correlation analysis shows a significant correlation between the support and the health burden (t0: ADL: r=0,433**; IADL: r=0,270**; t6: ADL: r=0,327**; IADL: r=0,439**).

Conclusion: The results show that more time spent for care is correlated with a higher health burden. Especially supporting PwD in IADL is time intensive. Considering the course of disease of dementia, time spent for care is continually rising. Therefore, it will be even more important to inform caregivers early enough about services they can obtain in order to give them the desired relief.

The research was initiated by the Bavarian State Parliament and is funded by the Bavarian State Ministry (StMGP).

PO3.27. Development and psychometric evaluation of the dementia quality of life scale for older family carers – DQoL-OC

OLIVEIRA Deborah, VASS Catherine, AUBEELUCK Aimee

This research aimed to develop and validate the ‘Dementia Quality of Life Scale for Older Family Carers’ (DQoL-OC), a dementia and age specific scale for the evaluation of quality of life (QoL) of older family carers. The scale items were identified in focus groups with older family carers in Nottinghamshire, UK, and later evaluated for content and face validity by a panel of six experts. A set of 100 items assessed on a five-point rating scale was tested in a non-probabilistic sample of 182 older family carers providing care at home in the UK. Other scales were administered to establish convergent validity: Satisfaction with Life Scale; The WHOQOL-AGE; Perceived Health Status VAS; and Perceived Health Related QoL VAS. Cronbach’s α was used to measure internal consistency reliability. Eighteen participants were enrolled for test re-test reliability and the two measurement sets were correlated using Pearson’s coefficient. Validity was assessed by means of Exploratory Factor Analysis. Pearson’s coefficient was used to provide evidence of convergent construct validity and preliminary evidence of criterion related validity. A one-factor solution containing 22 items formed the final scale. High test re-test reliability (r=0.935, p<0.001) and internal consistency (α=0.936) scores were obtained. Convergent construct validity was established for all tested scales (p<0.001). Statistically significant differences were found between age groups (r=0.175; p=0.02), gender (r=0.307; p<0.00), length of time providing care per day (r=-0.285; p<0.00) and per week (r=-0.091; p<0.01), carers’ subjective evaluation of their cared for’s stage of dementia (r=0.186; p<0.05) and stability of symptoms (r=0.256; p<0.00). The DQoL-OC was considered by participants a relevant and useful measure of QoL. DQoL-OC is a valid and reliable 22 item tool assessed via 1-5 rating scale, which may be useful in clinical practice in order to improve the QoL of older family carers of people with dementia.

PO3.28. Effectiveness of technology-based interventions for People with Dementia (PwD)

DUNN Rosie, ZAFEIRIDI Paraskevi, WOLVERSON Emma, PAULSON Kevin

Technology-based interventions, such as smart phones, computers and touchscreens, have been increasingly researched as low cost solutions to support People with Dementia (PwD) to maintain their independence and quality of life. This presentation summarises the current evidence base investigating the effectiveness of technology-based interventions for PwD collected through recent systematic reviews. The authors conducted a systematic search of reviews on five scientific databases (Web of Science, PubMed, ScienceDirect, PsycINFO, and Cochrane Library) from 2010 to 2016. The search identified 12 published reviews targeting technology-based tools’ effectiveness on the lives of PwD. The present review identified the variety of technology-based tools for older adults and PwD in this dynamic field. Empirical evidence has demonstrated some positive effects of technology in PwD, such as with virtual cognitive training. However, conclusions from systematic reviews suggest that the number of PwD participating in each technology-based study is small and thus, future research should include more participants. The results supporting the effectiveness of technology-based interventions may also be affected by the outcome measures used to assess PwD. Finally, Reviewers have drawn some important conclusions about barriers and facilitators to engagement in technology-based interventions which should be utilized in future developments.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 690211.

PO3.29. Consulting end-users in the design and usability of CAREGIVERSPRO-MMD: An internet based support tool designed for people with dementia and their caregivers

DUNN Rosie, ZAFEIRIDI Paraskevi, WOLVERSON Emma, PAULSON Kevin

Web-based technologies may support people with dementia (PwD) by improving their quality of life, reducing caregiver stress and improve the caregiver’s sense of competence. The current study is part of a larger study taking place across Europe developing and piloting an online community for caregivers and PwD called CAREGIVERSPRO-MMD. The system aims to provide valuable services based on social networks, tailored interventions, clinical strategies and gamification for improving the quality of life for PwD and their caregivers, that allow them to live in the community for as long as possible. This study is the first stage of the design of the technology platform in which we hope gain input and feedback from PwD, caregivers and professionals to help with the design, development and usability of the CAREGIVERSPRO-MMD platform. In a qualitative user-participatory design, focus groups and individual interviews were held with PwD, caregivers and professionals to gather their feedback, which was analysed using Thematic Analysis. The results of the focus group give insight into the functions of web-based technologies that PwD and informal carers appreciated. The findings also highlight the behaviours that dementia experts consider important to monitor in order to detect timely changes in functioning. Significant ethical issues regarding sharing of information were raised which must be considered in online forums and social media.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 690211.

PO3.30. Experiences with dementia friendly hospital care

GROEN – VAN DE VEN Leontine, KAMPER Ad, SMITS Carolien

Background: Hospitalization is frequent in the population of people with dementia (Rudolph et al., 2010). Unfortunately hospitals are often not well prepared to provide adequate dementia friendly care. In many cases the dementia symptoms become worse after hospitalization (Chater and Hughes, 2012). In the UK the SPACE program was developed with the aim of improving the dementia friendly care in hospitals with respect to five elements (www.dementiaaction.org.uk): 1) the quality of staff, 2) the partnership with informal caregivers, 3) the assessment of the dementia, 4) the provided care, and 5) the environment. Our aim was to study the experiences of informal caregivers and hospital professionals with respect to dementia friendly hospital care.

Methods: We interviewed 10 informal caregivers, 14 nurses, 4 physiotherapists, and 2 nutritionist’s assistants of three hospital internal medicine wards of the Isala Clinics in Zwolle. The topics involved the elements of the SPACE program as mentioned above. The interviews were analyzed using content analysis.

Results: Our analysis showed several relevant themes related to the experiences of the informal caregivers and the personnel with dementia friendly care in the hospital: 1) differences in level of competencies of the personnel, 2) the collaboration between personnel and informal caregivers needs improvement, 3) the tension between the need of rest of people with dementia and the busyness of the personnel, 4) a lack of daily structure for people with dementia in the hospital, and 5) a pleasant and home-like atmosphere.

Conclusion: Working towards a dementia friendly hospital requires training of personnel in attuning to the specific needs of people with dementia in the hospital and in collaborating with the informal caregivers of people with dementia. Daily activities in the hospital and a home-like atmosphere may also contribute to dementia friendly hospital care.

PO3.31. Diagnostic, therapeutic and palliative care for patients with dementia - experience of home hospice association of palliative care volunteers in Wielkopolska

KACZMAREK Beata, SAWIŃSKI Krzysztof, ZAKRZEWSKA-SAWIŃSKA Anna

Demographic changes that we observe in the times of medical revolution require a rapid introduction of improvements in the system of care for patients with dementia to avoid their exclusion and lack of support. Since 1998 we have been developing a dementia treatment oriented NGO in order to identify the needs and implement the preventive activities to avert pathological situations. Our particular goals include holistic diagnosis involving a range of professionals and following interventions appropriate to the degree of cognitive impairment and living conditions of people with dementia.

We also provide the professional treatment and individualized activities for different groups from mild cognitive impairment to severe stages of dementia. In 2015, about 200 seniors participated in a variety of activities including foreign language course, memory training and gymnastics. Moreover, for people in more advanced stages of dementia we initiated a program of a home-day care center. And finally, patients in the terminal stages of the dementia are offered home care as part of our home hospice services.

Another branch of our activities involves support groups and psycho-educational meetings for caregivers. At the same time, we have educated a qualified group of volunteers over the age of 50, who were prepared to work at home with people living with dementia.

The proposed actions are holistic and provide tangible benefits to our patients.

In our presentation we intend to share our observations as well as some of the results regarding health and well-being of those living with dementia.  Our additional objective is to provoke a discussion on the most appropriate ways of organizing systemic help for people living with dementia.

PO3.33. Influence of leadership on implementing Dementia Care Mapping – a multiple case study

QUASDORF Tina, BARTHOLOMEYCZIK Sabine

Background: Dementia Care Mapping (DCM) is an internationally applied, multi-component method for practice development that aims to enhance person-centred care (PCC) for people with dementia. The successful implementation of complex interventions like DCM into care practice is challenging. Recent research indicates that leadership strongly influences DCM implementation. However, knowledge on this issue is still limited.

Aims and objective: To explore the influence of leadership on DCM implementation in nursing homes

Method: A multiple case study approach was used to explore the influence of leadership on DCM implementation on four nursing units in four nursing homes. Results of an attached process evaluation indicate that two of these nursing units had implemented DCM successfully; two had failed. Each nursing unit was defined as one case. Semi-structured interviews were conducted with head nurses, staff nurses and project coordinators (n=28) and process documents and memos were collected. Data were analysed by qualitative content analysis. Based on a separate analysis of each single case a cross-case synthesis was performed to identify convergences and divergences between cases.

Results: Leadership styles differed between cases. Successful cases had strong leaders on different hierarchical levels (e.g. head nurse, nursing home manager) with clear, person-centred visions of dementia care. Within one of these cases all leaders had a very democratic leadership style, while leaders were more authoritarian within the other successful case. Leaders of the cases that failed to implement, were weak and they did not create a team vision of dementia care. In one of these cases the leader responsible for DCM implementation changed twice. The other case had an authoritarian nursing home manager, but he was not involved into care processes. Other leaders (e.g., head nurse, head of social services) were depending on the nursing home manager and did not have authority to decide.

Conclusion: Different leadership styles can facilitate success of DCM. Independent of a more democratic or authoritarian style main criteria is a dementia care culture that is based on a person-centred understanding of care.

PO3.34.Sex might be a taboo subject but we need to get it right!: Resources to assist residential aged care staff and family carers.

FETHERSTONHAUGH Deirdre, BAUER Michael, TARZIA Laura, BEATTIE Elizabeth

People with dementia face many challenges when it comes to the expression of their sexuality in residential aged care facilities (RACFs). These challenges come from the residential aged care environment, staff, and residents’ families. They include: the problematisation of sexuality; inappropriate labelling of behaviour; negative and judgemental staff attitudes; lack of privacy; the absence of polices; and inadequate knowledge, training and understanding.

There is considerable scope for RACFs to increase their level of awareness of the needs of older people, especially those living with dementia, and improve their practices so that they can become more supportive. Firstly however, individual RACFs need to be able to establish where their facility is currently placed in regard to supporting the sexual expression of people with dementia. Identifying any gaps in policies and practice is difficult when there are no available tools with which to appraise a facility with respect to meeting sexuality needs. To address this gap the Sexuality Assessment Tool (Sex-AT) was developed. The SexAT was developed in consultation with a wide range of experts, industry professionals, and consumers, including staff, family members, and older people (with and without dementia) and was informed by the research literature.

To address partners and family carers’ needs for information and understanding about supporting the expression of sexuality by people with dementia, a consumer guide titled ‘Sexuality and people in residential aged care facilities’ has been developed. This resource underwent extensive consumer consultation. Initially developed in English this resource is soon to be made available in other languages.

This presentation will showcase these resources and explain how they were developed and how they can be used to support the expression of sexuality by people living in RACFs.

PO3.37. Nutrition and dementia care: Developing an evidence-based model for delivering person-centred care in nursing homes

MURPHY Jane, HOLMES Joanne, BROOKS Cindy

Eating and drinking difficulties are a major factor contributing to ill-health, frailty and reduced quality of life for people living with dementia. Consequently there are complex challenges for the caregiver in ensuring nutritional needs are met.  Whilst a number of interventions have been identified to support food and drink intake, there have been no systematic studies to understand the factors that improve nutritional care from the perspectives of all those responsible for delivering care in nursing homes. The aim of this study was to develop a conceptual model to understand eating and drinking for people with dementia from a range of providers, thus supporting credibility from the perspective of the end-user.

An exploratory qualitative design using purposive sampling was used.  A series of nine focus groups and five semi-structured interviews were conducted with 50 participants who were involved or who have a level of responsibility for providing food and drink and nutritional care in nursing homes (care home staff including nurses, care assistants, managers, food service providers n=30, family carers n=8, dietitians n=3, speech and language therapists n=9). Discussions followed an agreed structure, were tape recorded, transcribed and analysed using thematic analysis.

The core themes that emerged were person-centred nutritional care; availability of food and drink; tools, resources and environment; relationship to others when eating and drinking; participation in activities; consistency of care and provision of information.  The findings have informed the development of a collaboratively developed, person-centred model for quality improvements in nutritional care to design new education and training tools and be readily translated into existing programmes. Further research is needed to evaluate whether these evidence-informed approaches can be implemented successfully and adopted into practice and policy contexts and demonstrate effectiveness for people living with dementia.

PO3.38. Can the use of an Adult Sensory Profile (ASP) help to make a more precise intervention in order to minimize BPSD symptoms in people with dementia? 

KLINGBERG Tinna, PEDERSEN Signe

How does a person with dementia react to their surroundings, when it comes to the sensory inputs they are a part of in their daily living? A television in the background, a scent of dish soap or cinnamon, people hugging you whenever they see you?  Being a person with dementia, it can be difficult to pin point what disturbs you and what doesn´t, and even more difficult to explain to others. BPSD symptoms are often an action with a rational intention behind it to communicate. As Tom Kitwood says: It is a person actively seeking to make sense of and adapt to their altered experience of themselves and their world.

In Denmark, we have been using the “Snoezel” method and ideas to facilitate sensory-calming and sensory-stimulating environments that should help people with dementia to a better quality of life. However, how do we know what the best sensory inputs are? Do we know enough about the way the individual person with dementia reacts to sensory stimulation and what their individual sensory needs are, before we turn on the lava lamp and the pan flutes? Does some of the BPSD symptoms have anything to do with the influence of the sensory environment on the person with dementia?

The results of the study is ready in September 2016. The study is looking at 30 participants (diagnosed with dementia and at least one symptom of BPSD identified on the Cohen Mansfield scale (CMAI). Base line with CMAI score. Intervention: A conference with the nurse, caregiver and therapist who, on the basis of the ASP results and the principles of person centered care giving, agrees on and initiate an interdisciplinary intervention. A conference every two weeks to evaluate and refine the intervention. After that a new CMAI score and at the end of the trial period another CMAI score to see if there were a long-term effect.

PO3.39. Optimal: effective health care for older people resident in care homes: a realist approach

DENING Tom, Davies Sue, ZUBAIR Maria, GORDON Adam, GOODMAN Claire

Background: In the UK, health service support to care homes is variable, especially for people living and dying with dementia. A theory based evaluation approach (realist evaluation) was used to understand how different configurations or elements of service delivery affect resident and staff outcomes and resource use.

Methods: Phase 1 completed a realist review of NHS provision to care homes, developing hypotheses (programme theory) of how different service delivery models may trigger change and improve residents’ health, staff satisfaction and reduce demand on urgent and hospital care. 

Phase 2 tested this in three case study sites. Site 1 emphasised investment in visiting specialist practitioners, e.g. dementia outreach. Site 2 provided financial incentives for general practitioners. Site 3 provided routine general medical services with no special arrangements. We followed residents’ health service use for 12 months and interviewed residents, relatives, NHS and care staff. Data were analysed to see how different configurations of service provision trigger (or not) particular outcomes.

Results: Phase 1 proposed that activities within interventions that triggered relational working practices that supported co-design and shared learning between care home staff and visiting healthcare professionals were more likely to lead to improved outcomes.

Phase 2 recruited 241 residents and interviewed 174 staff, residents and relatives. Different patterns of service use were observed between the sites, including for dementia-related problems. In all sites, resources that enabled ongoing (rather than intermittent) support to homes, time to case manage residents and involvement of a local network of services, supported residents’ access to healthcare. This was only consistently achieved in one site and these elements of service provision were particularly important for dementia related problems.

Conclusion: When evaluating multicomponent interventions that are contingent on a range of factors, realist methods can help to unpack what works when, why and in what circumstances. 

PO3.40. “Behind closed door with open minds”: Understanding nursing home staff’s narratives towards ascribed and prescribed roles and duties within the context of sexuality in dementia

VANDREVALA Tushna, CHRYSANTHAKI Theopisti, OGUNDIPE Esther

This study explores nursing home staff’s perspectives towards sexual expression involving residents with dementia. Sexuality in dementia remains a topic that has been relatively neglected in research. The limited evidence focusing on knowledge and attitudes of care home staff towards sexual expression is equivocal: some argue that care home staff demonstrated positive attitudes, while other studies suggest that staff have restrictive attitudes. These studies are limited in scope, offering little explanation for these inconsistencies in care home staff’s attitudes towards sexual expression in care homes. Face to face, in-depth, semi structured interviews were conducted with twenty care home staff working in two nursing homes registered for people with dementia in Greater London. Data was analysed using Thematic Analyis. The findings suggest that representation of sexuality in dementia in nursing home staff included the perception that sexual expression in old age was part of human nature and a basic human right, and therefore the belief that older people and residents with dementia have a right to sexuality and sexual expression. This contrasted with others endorsing the biomedical model that believe that sexuality and intimacy is forgotten in dementia and memory decline and cognitive dysfunction in dementia also encompassed sexuality and intimacy. Based on the representation of sexuality held by nursing home staff (personhood versus biomedical model) they adopted various roles including the role of a facilitator, an informant, a distractor or an empathiser. The findings highlight the importance of policy and training to foster a person-centered approach to sexuality and dementia in care homes.

PO3.41. When TiME matters: digital story telling in residential care home settings

CHRYSANTHAKI Theopisti, FROHLICH David, CASTRO Paula, COX Anna

Transition to a residential or nursing home is a difficult and stressful period both for the person with dementia and their family and friends. Distress, depression and loneliness are frequently experienced by residents during their first four weeks of admission (Hodgson et al. 2004). Similarly, informal carers (family/friends) also experience grief and ambiguous loss after being separated from loved ones. As a result, they usually request a meaningful role and remote but active involvement in the residents’ care in the care home (Frank, 2007). As the disease progresses, support for care co-ordination, need for meaningful social interaction and engagement with pleasurable activities with the resident become increasingly more salient for all caregivers, formal (professional care home staff) and informal ones (family/friends). Digitisation of life story books/diaries could support reminiscing activities and continuous communication between staff, resident and family. The therapeutic benefits of digital storytelling as a long-term intervention for older people are currently being researched. Further investigation is required to explore if the potential benefits extend beyond older people themselves to social and healthcare professionals, families and communities. This participatory study used focus groups with 8 care home staff and 8 family members of residents with dementia to explore barriers to communication with and about the resident after their transition to the residential home. We explored their opinions and attitudes on the possible role of ICT technology and use of digital storytelling to support care coordination in residential care. Using the Focusgroup+ method we identified carer needs, requirements and design ideas for the development of a new ICT digital storytelling product (TiME). Findings demonstrated acceptability of using digital storytelling but highlighted technical and ethical issues. Carers suggested that technology has a huge role in fostering a model that transcends physical boundaries and creates a culture of transparency and co-ordination.

PO3.42. Validation and optimization of the individual benefits of tracking systems in dementia care – VODINO – First results

FREIESLEBEN Silka Dawn, MEGGES Herlind, LÜDTKE Valentina, PETERS Oliver

Background: Tracking systems are viewed as innovative and promising tools in home and residential dementia care. However, tracking system acceptance and use by persons with dementia (PwD) and their primary caregivers remains low outside research and clinical settings.

Aims: Our interdisciplinary user evaluation study VODINO aims to better understand the needs and preferences of PwD, caregivers and experts regarding tracking systems to improve acceptance and use. Methods. Different types of tracking systems were selected: watch, necklace, tracking pager, shoe, ankle band, belt, pocket GPS, and shoe sole. To rate different product features, our team developed a short questionnaire. Independent variables were technological affinity and experience with hard- and software. Covariates were age, gender, and group membership. Descriptive statistics and inter-correlation analyses were performed. Our final sample consisted of N = 60 participants (n= 7 PwD;n= 34 caregivers;n= 19 experts).

Results: The majority of participants preferred the watch (41.7%), followed by the necklace (16.7%), and tracking pager (11.7%); other products received a rating of less than 10%. 43.3% of participants stated that tracking systems could aid PwD and 63.3% to PwD and caregivers. Group membership negatively correlated with preference to use tracking systems featuring a safety clamp (r= -.38,p<.01), where experts negatively rated such products. Low technological affinity negatively correlated with tracking systems having a direct call feature (r= -.33,p<.01). Experience with hard- and software negatively correlated with preferred interface settings (r= -.40,p< .01), where persons with little technological experience preferred phone-call based settings, as well as negatively correlating with approval of safety clamps (r= -.43,p< .01).

Conclusion: Tracking system watches were the preferred product in this sample. The high acceptance and expected aid from using tracking systems highlights their underutilized potential in dementia care.

PO3.43. Development and feasibility of inlife: an online social support intervention for dementia caregivers

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

Background: Social support interventions for caregivers of people with dementia (PwD) are needed to prevent feelings of loneliness and overburdening and to promote empowerment. Furthermore, access to social support might strengthen the experienced social health by caregivers and PwD. We will describe the development and evaluation of a novel online social support tool (‘Inlife’) for informal caregivers of PwD in the Netherlands, which aims to improve access to social support.

Methods: We will outline the development process of Inlife according to the MRC framework guidelines. Furthermore, we will conduct a pilot study with a repeated measurement design including 23 dementia caregivers to test the feasibility of the intervention. Participants will use Inlife for 16 weeks and complete a monthly effect evaluation using self-report questionnaires to measure perceived social support, feelings of loneliness and caregiver competence. Additionally, a process evaluation will be performed using log-data and qualitative reports as assessed by the Inlife program questionnaire. A descriptive analysis of pre- and post change scores will be performed using a paired t-test.

Results: Analysis will be performed following participants’ completion of the intervention after 16-weeks.

Conclusions: Our results will contribute to the improvement of the Inlife social support tool and the execution of a randomized controlled trial. Confirming the feasibility and effectiveness might contribute toward evidence-based implementation into clinical practice.

PO3.45. Joint effort key in successful implementation

GERRITSEN Debby, DE VRIES Erica, SMEETS Claudia, SMALBRUGGE Martin, VAN DER SPEK Klaas, ZUIDEMA Sytse, KOOPMANS Raymond

Objective: Evaluate the process of implementing a multidisciplinary six-monthly medication review in long-term care organizations (LTCOs) and determine its quality in daily practice.

Methods: The PROPER-intervention, performed by Elderly Care Physicians (ECP), pharmacists, and nursing staff, was implemented in thirteen units for people with dementia from six LTCOs. The process evaluation was conducted alongside a trial investigating its effects. Data sources were web-based questionnaires, interviews, attendance lists, minutes, evaluation- and registration forms.

Results: Shortage of ECPs hindered recruitment and caused one organization to drop out. Randomization and reach were adequate, although turnover in stakeholders was frequent (11/12 ECPs; 3/6 pharmacists; 10/32 nursing staff members). Participation rate in education sessions (95%), medication reviews (100%) and evaluation meetings (81%) was high. The intervention’s relevance and feasibility and also the applied implementation strategies were highly rated. Identified barriers and facilitators regarded the required time-investment, planning and organization, staff turnover and understaffing of nursing staff, attitude towards the intervention and support of higher management. The stakeholders considered the local intervention coordinator highly facilitating. Alternatively, the education component and the communication during medication reviews were too complex for several nursing staff members.

Conclusion: This particular implementation was successful, partly because the PROPER-intervention is not very complex and close to usual care, involving few professionals. Additionally, the subject was highly topical; all LTCOs in the Netherlands are pressed for lowering PDU. Moreover, a highly important general theme was present in the findings: joint effort. Commitment of both higher management and professionals in terms of a positive attitude towards change combined with (facilitating) actual time investment is necessary to succeed in implementing the intervention in the organization and should be a focus point in future implementations in the care sector. Future research should focus on incorporating people with dementia and their carers in improving psychotropic drug use.

PO3.46. Promoting physical activity for people with dementia – participatory development of a tailor made intervention

GEBHARD Doris, SCHMID Christina

Physical activity as a non-pharmacological treatment became a promising strategy to increase health resources and quality of life for people with dementia: Studies show that exercises have a positive impact on cognitive functioning, mobility, activities of daily living as well as on behavioral and psychological symptoms of dementia. Even though there is a growing body of knowledge about the effect of physical activity, little is known about the approaches and wishes of people with dementia regarding this topic.

To design a tailor made activity program for this target group, qualitative interviews were made with persons with dementia living in long term care facilities. The aim of the interview was to get an insight into the resources and barriers regarding physical activity, the importance of being physically active in people’s biography, the current activity behavior and their wishes and needs for an activity program.

Ten persons with mild to moderate dementia with an average MMSE of 20 and an average age of 84.9 years were interviewed in four different long term care facilities in Carinthia. Eight of them were female. The interviews lasted 23 minutes on average and were recorded and transcribed. The material was analyzed by using the qualitative content analysis.

The interviewed persons face more barriers (55 mentions) regarding physical activity than resources (32 mentions): Intrapersonal barriers were mentioned most often (n=31), followed by environmental barriers with 11 mentions. Nevertheless the strongest resources and motivators can also be found on the intrapersonal level with 15 mentions, followed by interpersonal factors. Apart from that, eight persons with dementia strongly believed in the positive impact of physical activity on health, 9 were still active and all interviewees had a positive approach about physical activity in the nature.

These results offer practical indications about how physical activity programs for this special target group should be designed to help people with dementia breaking down the barriers and to promote their still existing resources.

PO3.48. How to improve the professional handling of behavioral and psychological symptoms of dementia (BPSD) in Danish nursing home residents?

RISAGER Tina, GREGERSEN Rikke, LUNDHOLM Claus

Background. Neuropsychiatric symptoms in dementia are very frequent and the reasons are often complex. BPSD are troublesome for the persons with symptoms, the relatives and care professionals. Without careful observation, diagnosis and follow up BPSD might have severe consequences for the health status and wellbeing of nursing home residents with dementia.

Aim. The purpose is to introduce and implement an organizational design to Danish nursing homes that can support care professionals to screen for, collaborate on and improve BPSD in residents with dementia systematically.

Methods. By practice-oriented education and dialogue key care professionals, nurses and leaders will gain increased awareness, knowledge and tools to qualify BPSD intervention in nursing home residents with dementia. A central task is to implement systematically BPSD screening using the neuropsychiatric Inventory (NPI). Key care staff and leaders will receive 5 and 2 days of education, respectively, and all other staff will go through a short web-based course on BPSD. Fifteen nursing homes from five Danish municipalities are involved and external evaluator will evaluate the project.

VIA University College is together with three other partners responsible. The Danish Health Authority funds the project. Project period: Sept 2016 – Oct 2018

Results. The design, previous experiences and preliminary results will be presented.

PO3.49. Dementia in long term care facilities: A systematic Review

BHOME Rohan, COLLEDGE Louise, WALKER Zuzana

Introduction: Dementia is under-diagnosed within long-term care facilities meaning that sufferers do not receive the appropriate therapeutic management. A reason may be that it is not always feasible to carry out the thorough assessment required for a formal and robust diagnosis within this setting. Therefore, our systematic review focuses on three key areas; the prevalence of dementia in care home settings, whether dementia is under-diagnosed in this setting and the tools used to diagnose dementia in long-term care facilities.

Methods: The outcome of interest was the prevalence of dementia (all types) in long-term care facility residents and the diagnostic tools used within the studies.  Inclusion criteria were studies carried out on patients living in long-term care facilities. There was no restriction on the methodological type of study or the age of participants. The review was limited to English language studies.

Multiple databases were searched and 29 suitable papers were retrieved.

Results: The combined prevalence of dementia in long term care facilities was 59% with the average age of participants being 81 years and 69% were female. The most common type of dementia was Alzheimer’s.

Our findings suggest that dementia is widely under-diagnosed in long term care facility settings. Some studies found that staff members find it difficult to identify patients with dementia.

The mini mental state examination (MMSE) was the most widely used diagnostic tool.

Conclusion: Dementia is under-diagnosed because staff members are not adequately trained to make this diagnosis. The MMSE is used as a diagnostic tool in long term care facility settings despite its proven use as a screening tool. There is certainly a need to develop a uniform, easy to use and valid diagnostic method that can be used globally. This will allow dementia to be detected in a timely manner ensuring specialised dementia care is provided.

PO3.50. Memory palaces to improve quality of life in Alzheimer's disease

BORMANS Kasper, ROE Keith, de WACHTER Dirk

Abstract. Dementia is the problem of the future. Among elderly adults, retrieval of proper names is a source of unease and distress. This naming deficit is an early symptom of patients coping with neurodegenerative disorders such as Alzheimer's disease (AD). Individuals with Mild Cognitive Impairment (MCI) are at great risk of being in a prodromal phase of developing Alzheimer’s disease. Memory enhancement training is an upcoming intervention in the field of Neurology and Geriatrics. These interventions have already proven to increase cognition in individuals with Mild Cognitive Impairment. Yet no studies have attempted to combine two powerful communication strategies (i.e. Method of Loci and Face-Name mnemonic) with virtual reality to improve the memory of significant others. This study has the ambition to optimize these communication strategies by externalizing and customizing memory palaces for subjects in early AD. Professional architects will construct virtual scale models of the residential setting these subjects presently live in. They function as memory palaces in which photos of significant others are connected to the architectural, spatial environment. In addition we decorate the residential settings in accordance with the scale models. Thus (virtual) reality supports and facilitates participants during their familiar walk along the loci route. We hypothesize this to generate a convenient instrument allowing participants to independently improve recall and recognition of familiar faces. By extension we propose to temporarily slow down the rate of overall cognitive decline and loss of functional abilities. The first results of the pilot-study are promising.At follow up we expect an increase in memory and quality of life for early AD subjects and their significant others.

PO3.51. CarerSupport – an integrated platform for informal carers’ support  

ZACCARELLI Chiara, DUZHA Armend, MATTARELLI Paolo

The progressive aging of population is related to an increased incidence of age-related diseases, with consequent increased need of care services and support. Informal carers represent nowadays the backbone of long-term care systems in most European countries and beyond, thus generating an increased request of skills and competence to them. The informal carers have to deal with a variety of symptoms, treatments and care services, and consequently need to be able to understand the various conditions and needs of their elderly love ones, and at the same time to possess the knowledge and skills required to provide them support. Moreover the informal carers are in need of psychological support in order to be able to cope with the psychological challenges and emotional burden connected with their role and perform their tasks in a sustainable way.

In front of the still inadequate support provided from the EU and national long-term care policies to the informal carers and in response to their daily challenges, the CarerSupport project aims at reducing the fragmentation of existing care service models for informal carers by introducing an integrated ICT platform, providing a wide range of services including information and training programmes, psychological support services, communication and collaboration services to connect formal and informal carers, tele-consulting services, in order to improve the quality of care provided at home, with positive consequences on the quality of life of the elderly, in terms of active and independent living maintained as longer as possible, and personalization of services for those individuals with severe functional impairments.

CarerSupport intends to become an integrated pan-European platform for the training, orientation and support of informal carers, involving a large number of end users (notably informal carers), in the validation and evaluation of the platform and its services, from a user-centered view.

PO3.52. The dementia-specific quality of life instrument QUALIDEM: User Guide development and psychometric properties for the German version

DICHTER Martin N., SCHWAB Christian G. G., MEYER Gabriele, BARTHOLOMEYCZIK Sabine, HALEK Margareta

Background: The QUALIDEM is a dementia-specific quality of life (Qol) instrument that is recommended for longitudinal studies and advanced stages of dementia. Our study aimed to develop a user guide for the German version of the QUALIDEM and to determine the item distribution, internal consistency and inter-rater reliability (IRR) of the German QUALIDEM.

Methods: A user guide was developed based on cognitive interviews with ten professional caregivers and one a focus group with six professional caregivers. The item distribution, internal consistency and IRR were evaluated through a field test including n = 55 (mild to severe dementia) and n = 36 (very severe dementia) residents from nine nursing homes. Individuals with dementia were assessed four times by blinded proxy raters.

Results: A user guide with instructions for the application of the QUALIDEM and definitions and examples for each item was created. Based on the single-measure intra-class correlation coefficient (ICC for absolute agreement), we observed strong IRR for nearly all of the QUALIDEM subscales, with ICCs of at least 0.79. A lower ICC (ICC = 0.64) was only obtained for people with very severe dementia on the ‘negative affect’ subscale.

Conclusions: The IRR improved based on the application of the QUALIDEM user guide developed in this study. We demonstrated a sufficient IRR for all subscales of the German version of the QUALIDEM, with the exception of the ‘negative affect’ subscale in the subsample of people with very severe dementia. The item distribution and internal consistency results highlight the need to develop new informative items for some subscales.

PO3.53. Loss and grief in dementia

BEGLEY Emer, CRONIN Sarah, LYNCH Marie, KEEGAN Orla, DELANEY Susan, MCGUINNESS Breffni, DILLON Annie

Background: A range of losses occur throughout a person’s journey with dementia. Losses occur for the person and for their families as the disease progresses. Grief as a result of these losses is under-recognised and under-reported by people with dementia and their families.

Aim: To develop a guidance document and factsheet to support healthcare staff to recognise, acknowledge and respond to loss and grief in dementia.

Methods: An Expert Advisory Group (EAG) was convened. The group followed the NCEC approach to developing clinical guidance which included literature reviews, consensus building and consultation with key stakeholders.

Results: The guidance document and factsheets will be available in June 2015 to support healthcare staff in working with loss and grief in dementia. The document has four key considerations for staff to use as good practice when working with loss and grief in dementia. These are followed by four guidance areas which are responding to loss and grief, supporting the person with dementia experiencing loss and grief, supporting families with loss and grief and supporting yourself as a healthcare staff member. Resources will be listed for each of these areas.

Conclusion: Recognising loss and grief as part of the experience of having dementia is a core part of good dementia care. Provision of supports to people and their families at transition points is essential.

Future Plans: This guidance document is one in a suite of 7 guidance documents developed relating to different aspects of dementia palliative care. A dissemination plan has been developed to ensure findings and guidance are implemented and evaluated.

PO3.54. Dying to talk: Facilitating discussions on future and end-of-life care with a person with dementia

BEGLEY Emer, CRONIN Sarah, LYNCH Marie, SHANAGHER Deirdre, COLLINS Carmel, TIMMONS Suzanne, BARBER Jean, MAGUIRE Lasarina, QUINN Anne

Background: People dying with dementia are a vulnerable group at risk of not being involved in end-of-life care (EOLC) discussions. Discussions with a person with dementia about future and end-of-life care should take place as early as possible. Within healthcare, many staff are reluctant to initiate EOLC discussions with people with dementia due to fears of causing distress, role uncertainty and a lack of confidence in delivering bad news. There has been an absence in the literature to support staff to initiate EOLC discussions.

Aim: To develop a guidance document and factsheet to support healthcare staff to facilitate discussions on future and end-of-life care with people with dementia.

Methods: An Expert Advisory Group (EAG) was convened. The group followed the National Clinical Effectiveness Committee (NCEC) approach to developing clinical guidance which included literature reviews, consensus building and consultation with key stakeholders.

Results: The guidance document and factsheet is available to support healthcare staff to initiate and facilitate EOLC discussions with people who have dementia. The document lists 5 key considerations to inform good practice in communicating with a person with dementia and lists guidance and resources for staff. 

Conclusion: Communicating with a person with dementia requires staff to be flexible and skilled in their approach. Further supports and training are required to support healthcare staff to communicate with people who have dementia about their future and end-of-life care. This guidance document has been widely disseminated among service users, service providers and service planners across the country. Evaluation will take place at the end of 2016.

PO3.56. Identifying barriers and facilitators for the implementation of advanced care planning regarding people with dementia in primary care: a qualitative study.

TILBURGS Bram, WEIDEMA Marije, PERRY Marieke, ENGELS Yvonne, VERNOOIJ-DASSEN Myrra

Introduction: The number of people with dementia (PWD) is high and is expected to further increase in the future. The disease trajectory is characterized by a period of progressive decline in functional and mental capacity from 3 to 10 years from diagnosis until death. There is a growing awareness of the benefits of introducing anticipatory care for PWD. Anticipatory care allows healthcare professionals to deal proactively with the needs and preferences of PWD and Advance Care Planning (ACP) is essential for this process. Since over two thirds of the Dutch PWD live in the community, of which most have a longstanding relationship with their general practitioner (GP), they are the obvious professionals to initiate ACP. However, up to now, ACP with PWD and their GP seldom occurs. Therefore the aim of this study was to identify barriers and facilitators for PWD and their primary caregivers regarding ACP by the GP.

Methods: A qualitative design was used. Ten PWD and their primary caregivers were interviewed at home using the potential barriers and facilitators known from literature as a starting point. All interviews were audio recorded and transcribed verbatim. Data were analyzed using directed content analysis. Two researchers independently performed preplanned and open coding, axial coding, formation of categories, and themes.

Results and conclusion

Barriers and facilitators could be divided into four themes: meeting the GP, conversations regarding future care, topics to be discussed, and decision-making on future healthcare aspects. A warm and personal relationship provides a foundation on which the GP can initiate ACP. ACP should be a continuous process which should cover medical decisions and all other decisions that contribute to the quality of life (QoL) of the PWD. PWD are unlikely to initiate ACP themselves. This should there for be done timely by the GP.

PO3.57. Marking the transition between cure and palliative care in the community: development of guidelines and advanced care planning for people with dementia

SMITS Carolien, van der CINGEL Margreet, KEURHORST Myrna, UITDEHAAG Madeleen

Background: Identifying and discussing the transition between cure and palliative care may help people with dementia and their family carers to prepare for the future when they can still participate in the decision making. A number of professional guidelines for this transition marking have been developed, but they mostly concern residential settings. Yet these guidelines are most important for professionals working in the community, such as case managers, community nurses and general practitioners. We currently develop these professional guidelines.

Method: In 15 interviews with people with dementia and their family carers and in two focus group interviews with case managers and general practitioners we investigate their views on transition marking and advanced care planning. Interview transcripts are coded and analyzed. Subsequently professional guidelines on transition marking and advanced care planning are developed on the basis of the interview findings. These guidelines will be implemented and evaluated in case management and general practices in 2016-2017. The pilot evaluations will result in final versions.

Preliminary results: To date, provisional analyses of five interviews with persons with dementia, their family carers and case managers’ focus group meetings have been completed. People with dementia, their family carers and professionals appreciate knowing about the transition from cure to palliative care. It means that they can participate in discussions on the future. Case managers, however, also find it challenging to discuss these issues. Some tend to delay the discussions as they want to protect the person with dementia from painful confrontations,.

Conclusion: Persons with dementia and their family carers appreciate the importance of marking the transition between cure and palliative care, but professionals find implementation challenging. They may benefit from the guideline that will be developed in the next months.

PO3.59. Dementia Palliare: innovative positive practice approach to advanced dementia care through education

WATCHMAN Karen, TOLSON Debbie, MACRAE Rhoda, HOLMEROVÁ Iva

Advanced dementia can last for many years.  During this time, people with dementia and their family need to be supported by a qualified and confident care workforce; both evidence-informed and supported to continually develop their practice. Workforce training, commitment to good quality continuing care and services for people living with dementia are World Health Organisation priorities.  The reality is that research and training on advanced dementia care is scarce, and focuses on terminal stages and dying, rather than on living well with advanced dementia. This poster highlights the importance of accessible learning and education on advanced dementia, making use of technology, communication and shared learning to support learning. 

Dementia Palliare is an innovative positive practice approach for supporting individuals to live the best life possible and to sustain family caring in this extended period prior to end of life care. The Dementia Palliare approach has the potential to equip qualified practitioners, such as doctors, nurses, allied health and social care professionals to champion change. It aims to achieve the delivery of best advanced dementia practice, with a focus on living as well as possible rather than dying.

This poster presents an overview of the European Union Erasmus+ funded project, Dementia Palliare which ran from September 2014 to 2016 and involved a partnership of seven countries.  Key findings from the literature review and case studies developed from individual experiences of people with advanced dementia care in the seven countries can be viewed. The freely available online Community of Practice will be shared, with an overview of how it is supporting the development of a new European Dementia Academy and new education modules at Universities across Europe. Such activities informed the preparation of a European Best Practice Statement on advanced dementia that provides a basis for professionals to develop and improve advanced dementia care. 

PO3.60. Personhood, occupation and dementia- narratives of women and men with dementia living in long-term-care

TATZER Verena

Meaningful occupation is an essential part of person-centred care (Kitwood, 1997) but often a need unmet in long-term care (LTC) Settings (Tak, Kedia, Tongumpun, & Hong, 2014). The perspective of people with dementia is not sufficiently explored. This study deals with the questions: How do four women and men with moderate to severe dementia living in LTC experience activity and participation? How can activity and occupation promote the experience of identity and “personhood” from the perspective of people with dementia living in LTC? Using a qualitative research design in the ethnographic tradition observations, interviews and informal talk while doing activities with people with dementia (Nygard, 2006) and their carers were used for data collection in two institutions. Narrative analysis (Polkinghorne, 1995a) is used to gain a deeper understanding. First results show that meaningful occupation as a transactional phenomenon should get more attention in the organization of care as should the efforts of people with dementia doing “identity work” in a confining environment. Thus they used narratives, objects and everyday activities to express their identities despite cognitive or physical impairments. Relatives and staff are crucial in allowing  “identity-work” to take place (Hydén & Örulv, 2009).

PO3.61. A scoping review of quality of life for people with memory disorders

OKKONEN Eila, POHJANVUORI Anita, HOLOPAINEN Arja, SILTANEN Hannele

The Alzheimer Society of Finland has been coordinating and implementing the National Memory program (2012-2020) in the third sector since 2013. As a part of this work this year, we are producing a workbook for professionals:The criteria of good care and life- a workbook for the home care services and nursing homes to help develop and evaluate their work.The work is based on the synthesis of the Nursing Research Foundation (HOTUS) on the national and international studies associated with the quality of life of people with memory disorders.

The scoping review included 20 reviews (19 systematic reviews and 1 literature review) and 7 studies. Key findings were abstracted and the themes matrix was generated to identify patterns of meaning.

According to the results,the quality of life of people with memory disorders improves e.g. with the following factors: own experience of well-being and health, the ability to conduct daily activities, the experience of being understood and heard, and nurses’understanding and knowledge about the specials needs. The factors that reduce the quality of life included the lack of interaction, restriction of movement and the stress of nurses. The interventions to improve the quality of life,such as activation of people with memory disorders, guidance and counseling, social support, home-like environment, and non-pharmacological methods (music, aromatherapy etc.), had indicative effects on the quality of life.

The regular assessment of the quality of life of people with memory disorders is the base of good care and life. When developing the indicators of the quality of life people's own assessment of their needs should be considered. The scoping review identified a large body of knowledge exploring the factors and interventions. However, we need more studies on the impacts of different interventions on the quality of life of people with memory disorders.

PO3.62. Multidisciplinary treatment of mild cognitive impairment in Naval Hospital in Athens

TSATALI Marianna, SYNADINAKIS Emmanouil, DIMITRIADI Eygenia, PAPACHRISTOPOULOU Eugenia, VITOROS Dimitrios, POULIMENEA Georgia, NTOSKAS Triantafyllos

At Naval Hospital of Athens patients with mild cognitive deficits participate in mental empowerment groups. A one-hour session every week is conducted and consists of 8-10 people. The separation of the groups takes place after neurological examination, receiving medical history and neuropsychological evaluation in order to categorise patients depending on the condition and the degree of cognitive decline. The Mental Empowerment Center is staffed by a multidisciplinary team (psychologists, neyropsychologist, speech therapists, physiotherapists, occupational therapists, nurses, health visitors and social worker), under the supervision of a specialist neurologist. Interventions aim at strengthening the cognitive functions and more specifically of memory, attention, concentration, language – orientation, executive functions and visuospatial perception, resulting in improving mental reserves, stabilizing the mental level and eventually enhancing self-esteem, socialization and their quality of life.

PO3.63. Improving advance care planning for people with dementia in nursing homes: ‘we DECide optimised’

VAN AUDENHOVE Chantal, GOOSSENS Bart, SEVENANTS Aline, DECLERCQ Anja

Background: Advance care planning (ACP) is the communication process of preparing care and treatment choices, in anticipation of the moment that persons no longer have decision making capacity. Therefore, ACP is essential in the case of dementia. Recent research indicates that only a minority of people suffering from dementia in nursing homes have discussed their end-of-life choices. Since admission to a nursing home is a crucial moment for taking up ACP, nursing home staff are key figures in the ACP process. This process essentially corresponds with the three-step model for shared decision making (SDM). Implementing SDM requires training at both a clinical and an organizational level.

Objectives: The goal of this research is to assist healthcare professionals in Discussing End-of-life Choices with persons suffering from dementia and their families in Flemish nursing homes.  Therefore, ‘we DECide Optimised’ is being developed. It consists of a training package which addresses the implementation of ACP at both a clinical and an organizational level through the transfer of knowledge (model of shared decision making), skills (communication techniques, interactive sessions) and competencies (engaging informal caregivers).

Methods: Qualitative and quantitative measurements at both a clinical and an organizational level will be conducted using a pretest-posttest design. The primary outcome will be the level of SDM in ACP discussions. Secondary outcomes are participants’ self-perceptions on the importance, frequency and competency of using ACP, the level at which informal caregivers are engaged in these conversations and the level of support from management staff in promoting ACP. The study aims at training at least 348 participants in 82 nursing wards.

Results: In this implementation study, the effect of ’we DECide Optimised’ on the use of SDM in ACP conversations will be examined. A pilot study of ‘we DECide’ showed promising results.

PO3.64. Key components of community-based interventions coordinating care in dementia: a mixed studies systematic review

BACKHOUSE Amy, DICKENS Chris, RICHARDS David, MCCABE Rose

After a diagnosis care for the dementia population within the community can be fragmented and poorly coordinated. Case management interventions aim to manage care through the allocation of one professional who becomes responsible for care provision, with a focus on planning, facilitating and coordinating care. But these interventions vary widely in structure and components, so we aimed to investigate what components were key to their success.  

We conducted a sequential mixed-studies systematic review to first investigate perspectives of various stakeholder groups on what components they felt were important, and to then use this information to shape the synthesis of quantitative data examining if the components identified were associated with the intervention effects.

Electronic databases and reference lists were searched for relevant studies, and two independent reviewers worked to select studies based on defined inclusion criteria. Qualitative evidence was synthesized first using thematic synthesis techniques, followed by a meta-analysis of randomised controlled trials (RCTs) and a subgroup analysis shaped by the qualitative results.

7 papers reaching inclusion provided qualitative data, and thematic synthesis identified 32 initial themes expressing the views of stakeholders on the important components of interventions. Dependent on their concepts and meaning, these codes were grouped into 5 second-order themes; case manager, communication, intervention, resources and support. Preliminary results from a meta-analysis of 15 included RCTs indicate case management shows some benefit in reducing institutionalization. For subgroup analysis the qualitative framework was applied to the RCTs, with 7 of the 32 codes allowing us to group the RCTs. Preliminary subgroup analysis results suggest higher contact frequency helps reduce hospital admissions and institutionalization, and providing case managers with supervision also helps reduce institutionalization rates.   

The review results will allow us to develop an evidence-based model that coordinates care for individuals with dementia who are still living within the community.

PO3.65. Development of an app- and sensor-based assistive technology for informal caregivers of people with dementia to manage challenging behavior – The INSIDE-DEM project

KERNEBECK Sven, HALEK Margareta

Background: Over the course of the disease, 90 % of the people with dementia (PwD) are developing challenging behaviors such as wandering or agitation. Such behaviors are a substantial burden and highly stressful for PwD themselves as well as for their informal caregivers. In this context, individualized and needs-based interventions can improve quality of life and wellbeing and the personal independence for both partie. Assistive technologies (AT) provide a promising approach to enable informal caregivers to manage challenging behavior at home. However, the employment of AT in this context remains widely disregarded in health services research and applied dementia care so far.

Aim: The aim of the INSIDE-DEM project is to adapt the complex nursing intervention “understanding diagnostics”, which is widely accepted and used in professional (residential) dementia care in Germany, for informal caregivers of PwD living at home. For this purpose a new app- and sensor-based AT will be developed.

Methods: A user centered and multidisciplinary approach is applied to develop an app- and sensor-based AT for informal caregivers to manage challenging behavior by performing understanding diagnostics based on the already existing “innovative dementia orientated assesment“ (IdA) at home. The new assessment based on IdA is supported by a digital expert system designed by the knowledge-elicitation method within the project. Following the development process a mixed-methods approach is applied to evaluate the AT in a feasibility study considering the specific circumstances in home-based care settings. Informal caregivers as well as PwD will be involved in the evaluation process. In addition, ethical, legal and economic consequences will be integrated in the analysis.

Expected results: It is expected to identify first possible effects by implementing the AT in a home-based care setting especially for further technical advancements. Moreover, the findings will be helpful in order to design evaluation studies for the INSIDE-DEM AT with particular regard to the evaluation of health outcomes and determinants to improve user acceptance. Additionally, given the limited research experience in the field of AT to tackle challenging behavior it is expected to shed light on existing research gaps and to be able to formulate precise and useful research questions for further studies in this field.

PO3.66. The memory phone: Technology assisted tele rehabilitation for persons with dementia and their family members

LAUNIAINEN Helena, POUTIAINEN Erja, SARAJUURI Jaana, KOSKINEN Sanna, PIETILÄ Piia, NUKARI Johanna

Introduction: The Memory Phone (2013–2016) aims at developing an interactive rehabilitation model at early phase of dementia. The basic idea is to provide the participants technological applications with options that are not available using the traditional methods. The model is designed for the rehabilitee and his/her family member with the aim of enhancing functioning and wellbeing for both of them

Methods: The intervention was designed for persons at early phase of Alzheimer’s disease under 75 years of age, and their family members. The process consisted of group intervention, telerehabilitation and cognitive training (FORAMENCognitive Tablet) at home via mobile technology. The controlled study design was used to evaluate changes in cognitive functions, mood, quality of life and daily activities by neuropsychological methods of the 28 subjects who attended to the intervention and of 25 control subjects. In addition to these groups the qualitative data was collected of the 12 additional subjects and 50 significant others. Outcomes were collected at baseline (before intervention), immediately following intervention period (14 weeks) and 6 months following the baseline measurement.

Results: Most participants hadn’t received any previous support. The six months follow-up showed significant decrease in depression in the Alzheimer group reported by the subjects with Alzheimer’s disease as well as by the significant others. However, no change in depression was found in the subjects with Alzheimer’s disease who attended to the control group. No significant changes were found in cognition, such as memory functions or attention.  The family members’ depression, need of support and coping did not show significant changes. According to qualitative methods participants experienced intervention motivating, and it structured their daily routines.

Conclusions:  The Memory Phone intervention had a positive effect on the mood of the rehabilitees. The symptoms of depression decreased in the rehabilitation group.

PO3.67. DemFACTS — medical interventions and palliative care, what to decide for my loved one with advanced dementia?

LOIZEAU Andrea, EICHER Stefanie, THEILL Nathan, MIKE Martin, RIESE Florian

About two-thirds of people with dementia die from pneumonia and one-third dies from dehydration. The DemFACTS study aims to develop and test decision aids called fact boxes, in order to support decision-makers, who have to make burdensome treatment decisions at the end-of-life of people with dementia and either pneumonia or insufficient fluid intake.

The study employs a randomized, controlled, pre-/post-intervention design. Relatives of people with dementia (n = 100), professional proxies (n = 100) and physicians (n = 100) will evaluate the newly developed fact boxes. At pretest, participants will be asked to make two fictional decisions concerning burdensome medical interventions in advanced dementia based on case vignettes. Four weeks later, at posttest, the intervention group will be presented with two fact boxes in addition to the two case vignettes, whereas the control group will only be provided with the case vignettes. The fact boxes’ effect on decisional conflicts (primary outcome), additional decision outcomes, knowledge transfer, and the appropriateness of the fact boxes (secondary outcomes) will be assessed.

The fact boxes could reduce the decision-makers’ decisional conflicts and enable them to better understand the treatment 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.

PO3.68. A systematic review of evidence for the effectiveness of self-management support (SMS) interventions for people with Mild Cognitive Impairment (MCI) or early-stage dementia

ASPINALL Susan, WARD Gillian, TURNER Andy

This poster describes a systematic review that assesses evidence for the effectiveness of self-management support (SMS) interventions for people with Mild Cognitive Impairment (MCI). MCI has been described as a cognitive state that is intermediate between normal ageing and dementia, and is an at-risk state for developing dementia (Gaultier et al. 2006).  Lifestyle factors are strongly linked to the key aim of risk reduction (Prince et al. 2014, Norton et al.  2014). There is evidence that SMS interventions are effective in improving clinical outcomes in chronic conditions and improving quality of life (De Silva 2011).  Multi-domain interventions have recently been shown to improve cognition in older adults, and SMS can be an appropriate way to encourage, inform and support behaviour change, meeting the need for service delivery as well as health outcomes (Ngandu 2015, Lorig 2003).

The review concentrates on primary empirical and intervention studies to determine whether SMS programmes are effective for people with MCI. Primary outcomes, measured using validated, standardised instruments, are: behaviour change; use of health services; health outcomes; quality of life; empowerment, self-efficacy and patient activation and psychosocial measures of anxiety and depression. Secondary outcomes are possible adverse effects.

Studies’ participants are people diagnosed with MCI who have received a SMS intervention.  Two authors have independently screened abstracts generated by electronic database searches to ensure that they meet inclusion criteria. The process of selection is summarised using a PRISMA flow diagram and CASP tools are used to assess methodological quality of selected papers. A data extraction table shows study design, study quality, demographic factors at baseline, SMS type and characteristics, completion rates and primary and secondary outcomes. The results and discussion section is a summarised narrative synthesis of findings of evidence of benefits, along with enabling factors or weaknesses, of SMS programmes for people with MCI.

PO3.69. Danish reminiscence researcher’s network

JENSEN Anders Møller, HOUNSGAARD Lise

In 2014, researchers in Denmark formed the Danish reminiscence researcher’s network, in order to facilitate reminiscence research in Denmark and promote a more reflective use of reminiscence in clinical practice.

The network is multidisciplinary, with members coming from universities, university colleges, cultural institutions and museums, the Danish Dementia Research Centre and private persons – all with the interest in research and dissemination of reminiscence.

The network has two annual meetings, where members present their latest work, and/or have guest lectures give input to the field.

The poster presents examples of reminiscence research projects that over the years has be taking place in Denmark, as well as a list the members of the network. We hope that the posters will encourage to international networking.

PO3.70. Establishing a Research Ready Care Home Network

SMITH Adam

In the UK, the majority of long-term care for frail older people is provided by staff working in care homes. By bringing together researchers with care home staff and residents, and establishing the ‘Research Ready Care Home Network’ we have been able to:

•               Help researchers ask questions that are important to the people they’d like to help.

•               Give residents a voice in deciding what should be researched.

•               Get advice from care home staff, improving study deliverability.

•               Ensure care home staff and residents know about all the current research taking place in their region, providing an opportunity to become involved.

•               Save time and money, ensuring studies are delivered quickly.

Around 1/3rd of all the research funding the Dementia Themed Call and PM Challenge on Dementia in the UK has been put into studies, which will directly involve or impact residents. This is over £12m in the past year alone.

The network isn’t all about dementia research, despite 80% of care home residents suffering from the condition. Around 25% of care home residents will have previously suffered from a Stoke and 5% will have Parkinson’s disease and these are all areas where care home residents can contribute to new research.

Managing someone’s care as they approach the end of their life is also an area of great interest to researchers - approximately 60% of all deaths that occur each year are expected and predictable. In England, that’s around 85,000 deaths and 17% of everyone who dies, lives in a care home (National Audit Office (NAO), 2010).

So why does the Research Ready Care Home Network exist? Because through it we can play vital role in helping  researchers to connect with care homes and residents, making studies better; and helping the care homes connect with researchers making the lives of residents better.

PO3.71. MUSIKARO - a pilot project in Oslo, Norway

LYNGROTH Solfrid, PEDERSEN Jorun, KVAMME Tone Saether, DAEHLI Silje

MUSIKARO is using technology to facilitate access to preference music for people with cognitive impairment and dementia (ci/d).

The ongoing Norwegian project is a cooperation between Geriatric Resource Center Oslo, Norwegian Academy of Music, National Health Association and the companies Mylifeproducts and Tellu.

Persons with ci/d often suffer from anxiety and agitation, and struggle with reminiscence. Norwegian studies, based on an American study (Gerdner 1999), found that listening to music according to the individuals’ musicpreference, can increase a sense of security and wellbeing and enhance access to memories (Myskja og Lyngroth 2001, Lyngroth, Kvamme og Skogen 2006).

A group of British researchers evaluated 160 studies of psychological and behavioural methods aimed at reducing agitation experienced by nursinghome residents with ci/d.  They concluded that structured music therapy reduced the level of agitation. (Livingston et al., 2014).

Main goals:

  • Develop and test an easy accessible technology for choosing and playing preferencemusic for people with ci/d.
  • Examine whether the technology is easy to use for healthcare workers.
  • Examine whether persons with ci/d can play the preference music.

The project teaches healthcare workers to download and transfer preferencemusic to tablets. The software on the tablets targets persons with ci/d to see if they can play music from the tablet.

In advance healthcare workers registered the participants’ musicpreferences and the projectgroup tested the technology. Each participant then received a tablet with playlists according to musicpreference. Semi-structured interviews and surveys will be conducted biweekly to see if the technology is of easy and practical use.

Preliminary feedbacks from healthcare workers and participants are positive, and results from this pilot can be of interest to people with ci/d, their families and to researchers in adjoining fields.

PO3.72. More self-reliance and autonomy for nursing home residents with dementia: a nurse-led intervention (SOCAV project)

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

Background: The SOCAV project is one of the test projects in the program “Dignity and pride” of the Ministry of Health in the Netherlands. There is a need for more respect, dignity, self-reliance and autonomy for people with dementia in nursing homes since care is mostly focused on taking over personal care, decisions and responsibilities residents in nursing homes.

Methods: the design of this test project is an observational study with a repeated measurement design with measurements at baseline, 3, 6, 9 and 12 months follow-up. Intervention: is a nurse-led intervention which is supervised by peer-coaches to empower the self-reliance and autonomy of nursing home residents with dementia. Measurement outcomes are: primary: the evaluation of the self-perceived performance and satisfaction of meaningful activities defined by nursing home residents with support of their family caregivers and/or their primary responsible nurse, from the perspective of the nursing home residents, their family caregiver, the first responsible nurse connected to this resident, assessed by the COPM performance and Satisfaction. Secondary outcomes are: the behavior score of Dementia Care Mapping assessment. Process outcomes are: 1) the diaries of the nurses with a)their reflections on the interaction with the people with dementia, and b) their reflections on their own learning process based on their self-defined learning goals; 2) the diaries of the peer-coaches with their reflections on the learning goals and learning process of the nurses. Demographic and control variables are: age, sex, marital status, relation family caregiver to resident with dementia, years of workings experience with dementia; years of admission, cognitive status.

Results: the design of this study, baseline outcomes, contents intervention and procedures of implementing the intervention will be presented.

Conclusions: the design of this study, baseline outcomes, contents intervention and procedures of implementing the intervention will be explained and discussed.

PO3.73. The contribution of Scotland’s allied health professionals to post diagnostic support in dementia – an improvement project

McKEAN Alison, Hunter Elaine, MURRAY Ann

Background: Within Scotland’s National Dementia Strategy (2013-2016) there is a commitment to improving post diagnostic support (PDS).  This is a priority area for the Allied Health Professionals (AHPs) (Scottish Government, 2013) and a piece of national scoping work was undertaken to enquire about their contribution.

Overall findings were that people with dementia and their carers are not receiving equitable input from the AHPs (with AHP skills not utilised to their full potential) within the PDS period.  This has informed a piece of Improvement work.

Method: Project teams were established in two pilot sites (Dumfries & Galloway and Edinburgh) consisting of AHPs and Alzheimer Scotland Dementia Link Workers (DLWs). 

A Framework for the DLWs was produced with clear triggers for AHP input and how to access this.  This is currently being tested using improvement methodology.

Evidence based self management information was collated for a DLW online platform.

Aims:

  1. Increase understanding of the AHP role in the PDS period To enable people to receive the right support at the right time in order to sustain personal resilience and the ability to live well with dementia. 
  2.  Improve access to the AHP Services for the DLWs for advice, assessment and interventions.                                                                    To ensure the asset based approach of AHP Services across sectors is utilised effectively and consistently every time

Outcomes: We know from the work we have been carrying out that what is important to people with dementia is enablement to sustain personal resilience and access to AHP services at the right time.  Our measurement plan aims to capture the impact of this new approach, and includes case studies and people’s stories as well as identifying the number and nature of AHP contacts that result.

Already there has been a positive impact on understanding of roles and partnership working by the Project Team members.

PO3.75. Living with dementia at home in Slovenia

KRIVEC David, VIRANT Alenka

Our activities are aimed at providing support, information and training for carers and family members of persons with dementia. We have detected increased demand for assistance at home from relatives of people with dementia. For that reason, we have successfully applied for EEA and Norway grants with a project " Living with Dementia at Home". Main objectives of the project are: empowerment of target groups living with dementia, early recognition of signs of disease and facing illness to reduce social exclusion of individuals with dementia and their closest ones.

Our training programme "Forget Me Not" (since 2013), for relatives of persons with dementia is very successful and used as a basis. In the next step, we discussed the programme in focus groups – self-help groups of carers. The aim was to determine and include actual needs, stressed out by families with persons with dementia. Participating families had to apply with a questionnaire about activities, daily routine, progress of the disease and likes or dislikes of person with dementia.

Results of the project "Living with dementia at home" are 400 copies of handbook for carers of persons with dementia, prepared in cooperation with our project partner "Norwegian National Advisory Unit on Ageing and Health" and a group of companions of person with dementia.

Pilot project companionship was launched in June 2015 and completed in December 2015. All volunteers gained skills to become companions for person with mild stages of dementia, through 4 workshops, led by dementia experts. Volunteers also took park at 25th Alzheimer Europe conference, later in September met participating families to get to know each other and started with visits at homes.

After six months’ we conducted an evaluation and according to results, project showed positive impacts for persons with dementia, their caregivers and volunteers. Due to great need of families for support at home, we continue with companionship. We recruited new volunteers with our training programme "Forget me not".

PO3.76. Process evaluation of the adaptive implementation of the Meeting Centres Support Program: a comparison between four EU countries

MEILAND Franka, FARINA Elisabetta, SAIBENE Francesca Lea, GAMBERINI Giulia, EVANS Shirley, EVANS Simon, SZCZEŚNIAK Dorota, URBANSKA Katarzyna, BROOKER Dawn, RYMASZEWSKA Joanna, DRÖES Rose-Marie, CHATTAT Rabih

Objectives: The Meeting Centres Support Programme (MCSP) aims to offer combined person-centred psychosocial support to people with mild to moderately severe dementia and their carers in socially integrated community centres. Originally MCSP has been proven to be effective in the Netherlands (Dröes et al., 2000, 2004, 2006) where it was adaptively implemented and evaluated in several regions (Meiland et al., 2005). Within the framework of the JPND-MeetingDem project, recently, MCSP has been adaptively implemented in three other European countries, Italy, Poland and the UK. Based on the evaluations of the implementation processes in the four countries, differences and similarities between countries in factors that facilitated or impeded the implementation of MCSP will be presented. 

Methods: In all countries data on experienced facilitators and barriers were collected by checklists and semi-structured interviews among a purposively selected sample of stakeholders. The data were analysed using the Theoretical model of adaptive implementation (Meiland et al., 2004).

Results: Following the theoretical model, variations in influencing factors between the four countries will be presented at a microlevel (user level, such as recruitment of qualified and motivated personnel, and finding a suitable location for the meeting centre), mesolevel (organizational level, such as good collaboration between regional care and welfare organisations) and macrolevel (laws and regulations, such as reimbursement from health insurance or local government). Also, differences and similarities between countries regarding facilitating and impeding pre-conditions will be reported, such as matching of the characteristics of MCSP and the care vision of the pioneer organization, available time to implement the meeting centre, human and financial resources and the existing collaboration with regional care and welfare organizations.

Conclusion: Insights in factors influencing the adaptive implementation of MCSP in different countries will help to prepare and guide further successful implementation of MCSP in these countries and across Europe.

PO3.77. Broadening our understanding of good home care for people with dementia

PERRY-YOUNG Lucy, WILKINSON Samantha, SCHNEIDER Justine, TRAVERS Cheryl, POLLOCK Kristian

In many countries of the industrial world, including the UK, increasing longevity and incidence of dementia places great demands on formal and informal care. Paid care workers play a crucial role in supporting people with dementia to remain at home. Their duties are diverse, including; personal care, cleaning, companionship, and supporting clients to engage in social and community activities outside the home. Despite the multi-skilled nature of the role, care work is considered to be low status and this is reflected in low pay. In the UK, recent media coverage has highlighted shortcomings in home care provision, including the brevity (15 minute) and ‘clipping’ of visits, poor employment terms and conditions, high staff turnover, lack of opportunity for training, and variable quality and regulation of services. Despite its social and economic importance in supporting people with dementia at home, the nature and experience of the care giving role has not been widely researched. The BOUGH study aims to Broaden Our Understanding of Good Home care for people with dementia. We set out to determine what ‘good’ home care feels and looks like using a qualitative mixed methods approach, including: participant observation (researchers working as home care workers), diary keeping by caregivers, document analysis, and interviews with home care workers, clients, relatives, and commissioners of home care services. In this presentation we draw on data from the participant observation and diary elements of the study which highlight the ethical, emotional and physical challenges faced by care workers. We discuss preliminary findings relating to the themes of: skills, lifestyle impact, and rewards of caregiving. A greater understanding of the nature and experience of home care work is a pre-requisite for developing policy and commissioning excellent and cost effective services for people with dementia and their families.

PO3.79. The holistic alternative route

SHENOY Vidya

The etiology of Alzheimer’s and Dementia is not yet known of. Although there is a continuous research being conducted all over the world to find the causes and thereafter, a cure for the disease, there are always options available, that of Alternative Therapies. Recently, more researchers all over the world have been curious in this area because it has been showing slow, yet impressive results. This has been proved true for not only those affected by dementia, but also those who look after people with dementia, viz., the family or the caregivers who are, sometimes unknowingly, burdened with its silent and creeping impact in their lives over time. Hence, these therapies are now becoming an intrinsic part of Integrated Medicine due to their worth-considering, significant effects.

Volunteering with both, patients with Alzheimer’s and Dementia and their families, both in daycare and hospitals, one finds that there is a plausible option of using excellent alternative individual/group therapies like Yoga, prayer groups, stretch Pilates, music, dance, laughter, pet and creative arts coupled with diet as means to reach out to these friends affected by dementia, their families and their caregivers. And fortunately, these have shown some satisfyingly, positive results. Why not share my views and experience with you all?

We will go into exciting details along this ‘Alternative Holistic Route’.

PO3.80. Impact of medication management on drug-related problems in community-dwelling primary care patients with dementia

THYRIAN Jochen René, MICHALOWSKY Bernhard, WUCHERER Diana, HERTEL Johannes, EICHLER Tilly, TEIPEL Stefan, HOFFMANN Wolfgang

Background: Pharmacotherapy of multimorbid elderly patients with dementia is complex and associated with drug-related problems (DRPs). Medication management is an effective intervention for the prevention and reduction of DRPs. However, there is limited information regarding the impact of medication management on DRPs in people with dementia (PWD) in primary care. The object of this presentation is to (1) describe DRPs of community-dwelling PWD and (2) determine the effect of medication management on their DRPs.

Design and methods: The analysis was based on the data from the DelpHi-MV trial (Dementia: life- and person-centered help in Mecklenburg - Western Pomerania), a general practitioner (GP)-based cluster-randomized controlled intervention trial. One part of the complex intervention is the provision of medication management. Control group received “care as usual”. In n=446 study participants a computer-based home medication review was assessed. Pharmacists analyzed medication data for DRPs and gave the written recommendations to the GPs in the intervention group. The effect of the intervention on DRPs at one year follow-up (March 2016) will be analyzed using a multivariate regression model comparing intervention and control group. 

Results and discussion: Polypharmacy (>5 systemically acting drugs in chronical use) was found in more than 67% of the study participants. Overall, 93% of the patients had at least one DRP detected by pharmacist. Of these DRPs, the group of problems by application and compliance was the most common one (60% of registered DRPs), followed by problems with drug interactions (18%), inadequate drug selection (15%), dosage problems (13%), and adverse drug events (6%). Preliminary analysis of a medication management on the DRPs has shown the tendency that DRPs decrease.

PO3.82. The effectiveness of web-based interventions on dementia caregivers

ZAFEIRIDI Paraskevi, DUNN Rosie, WOLVERSON Emma, PAULSON Kevin

Over the last decade, research has sought to explore low cost effective methods to support people living with dementia (PwD) and their caregivers. Empirical evidence suggests that web-based interventions, including online forums and web-based psychoeducational material, may improve the lives of PwD and their caregivers’. In this presentation we share the findings of a literature review examining the current evidence of the effectiveness of web-based interventions for caregivers of PwD and explore what factors might influence their effectiveness. A systematic search of three scientific databases (Web of Science, PubMed, and ScienceDirect) identified eleven articles with inconsistent results on the effectiveness of web-based interventions on caregivers’ outcomes, for example on whether depressive symptoms were improved after the intervention. Furthermore, caregivers’ characteristics and inclusion criteria, as well as study duration and follow up periods varied significantly across the research studies. We conclude that uncontrolled factors, including follow up periods and outcome measures, can affect the outcomes of web-based interventions’ effectiveness to improve dementia caregivers’ lives. Therefore, future research needs to address these issues to provide more reliable results for the effectiveness of web-based interventions on caregivers’ lives.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 690211.

PO3.83. Experiences with Integrative Validation Therapy (IVA) in a long-term care facility for people with dementia

ERDMANN Anke

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

Research questions: Three research questions were examined: 1. Which characteristics distinguish Richard´s Integrative Validation Therapy from Feil´s Validation Therapy? 2. With which categories can we describe the praxis of Integrative Validation? 3. How is Integrative Validation Therapy evaluated by nurses and relatives?

Methods: To answer the first research question a systematic literature review was performed looking for relevant publications in the period between 1980 and 2011 in five data bases. After that 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 Northern Germany. The participants from the care facility 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 after this group discussion 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 Therapy in the case investigated. In this presentation the components which differ most from the Feil method are demonstrated, and the outcomes are described and illustrated with the help of examples.

Discussion: The results of this study show that besides positive outcomes for the residents in the nursing home, IVA has also advantages for the employees, which can be summarized as less psychological stress, improved communication with colleagues and management, and employee satisfaction in general.

 

 
 

Last Updated: Friday 09 September 2016

 

 
  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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