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PO1 Living with dementia

Detailed programme and abstracts

PO1.3. Emotional distress experienced with dementia: a systematic review incorporating corpus-based analysis and meta-ethnography

PETTY Stephanie, HARVEY Kevin, GRIFFITHS Amanda, COLESTON Donna Maria, DENING Tom.

Background: More understanding is needed about the emotional experiences of dementia from the perspective of the individual to inform the provision of healthcare to meet individual needs.

Aims: To present all available descriptions of emotional distress and explanations for emotional distress experienced by individuals with dementia, articulated personally and by others.

Method: A systematic review of mixed studies literature identified 35,215 different titles that were screened and quality appraised. Data were analysed quantitatively and qualitatively using corpus-based methods and meta-ethnography.

Results: The 121 included studies showed that individuals with dementia have expressed emotional distress comprehensibly. Family, professional caregivers, clinicians and academic writers also described extreme emotional experiences. Feeling fearful and lonely were predominant. Explanations for emotional distress included threats to universal, human needs for identity, belonging, hope and predictability.

Conclusions: The emotional experiences of individuals with dementia are well described and should not continue to be overlooked.

PO1.4. Participation and risk in public spaces and everyday technology use among people with and without mild-stage dementia in Sweden

GABER Sophie, MALINOWSKY Camilla, KOTTORP Anders, WALLCOOK Sarah, NYGÄRD Louise

Background: Everyday Technologies, such as cash machines, self-service check-outs and mobile phones are pervading public space and affecting the complexity of activities that people wish to perform. As the rate of dementia in Europe escalates, consideration of the cognitive aspects of participation in such places and activities outside home, including attendant risk is increasingly important.

Aim: The study aims to build profiles of perceived participation in activities and places outside the home, in relation to Everyday Technologies and perceptions of risk, as perceived by people with and without mild-stage dementia.

Methods: 35 People living with mild-stage dementia and 35 people with no known cognitive impairment in Sweden are interviewed in their homes using structured questionnaires, to explore Everyday Technology use in public space and to map perceived participation in activities and places outside home, including perceived risks associated with public space. Quantitative methods are used to explore the patterns in the collected data, including differences among groups and relationships between variables.

Results: Preliminary findings will be presented according to the perceived participation of people with and without mild-stage dementia in profiles and clusters of participation in activities and places outside home. Hypotheses will be developed and tested about the transactional interactions between Everyday Technologies in public space and facilitators and barriers such as perceived risks, to participation in activities and places for people living with and without mild-stage dementia.

Conclusions: The findings will inform a broader, unfolding study for the Marie Skłodowska Curie Interdisciplinary Network for Dementia Using Current Technology (INDUCT) training network, to facilitate the development of appropriate targeted support for people with dementia in Europe in order to maintain levels of participation in places and activities outside home, as well as more accessible and usable public spaces.

PO1.5. Living with dementia in Iceland

SIGURLAUGARDOTTIR Sirrý Sif, SVERRISSON Árni

Alzheimer Iceland was formed in 1985 and has been a member of Alzheimer Europe since 1998 but the evolution of services for people with dementia and public awareness has been rather slow. But in the past two years there has been a shift for the better.

Alzheimer Iceland would like the chance to participate in the Alzheimer Europe conference in Berlin to tell the rest of Europe about what it has been like living with dementia in Iceland in the past, what it is like today and what hopes we have for the future. It would be based upon the work of a group of specialists who are working towards educating professionals, carers and people with dementia about living well with dementia. A big part of that process has been going around the country hosting symposiums, talking to the locals about what can be changed to make sure people with dementia do not have to move to Reykjavík (the capital) to get sufficient service.

Participants in the symposiums have been people with dementia, carers, professionals and policy makers on the local and governmental level. There has been an awakening amongst Icelanders regarding dementia and Alzheimer Iceland is hopeful for the future.

PO1.6. Acceptability of therapeutic lying: the views of people with dementia and informal/unpaid carers

CASEY Dympna, LYNCH Una, COONEY Adeline, MURPHY Kathy, GANNON Mary, HOUGHTON Catherine, HUNTER Andrew, JORDAN Fionnuala, SMYTH Siobhan, MESKELL Pauline

Introduction and Background: Cognitive decline in dementia can commonly result in the person with dementia believing that a deceased spouse/relative/friend is alive or they ask to ‘go home’ when they no longer live in their usual residence. Carers are then faced with a dilemma, do they ‘correct’ the person with dementia, tell them the ‘truth’ or do they ‘play along’ and tell them a ‘lie’.

Aim: To determine the best approach for carers to take with people with dementia to maximise the welfare of the person with dementia when they ask questions or make statements that are false.

Methods:  A mixed methods convergent parallel design was used. A descriptive qualitative approach, using focus group interviews with people with dementia (n=14) and with carers (n=18) across the Island of Ireland, and an international Delphi survey of health care professionals was undertaken. Ethical approval was obtained. This paper reports on the findings from the qualitative data.

Findings: Carers and people with dementia reported that lying to a person with dementia with an intention to cause harm is never an acceptable strategy. However, the use of therapeutic lying was considered acceptable once it is used to promote wellbeing and safeguard the welfare of the person with dementia. The intention must be to minimize harm for the person with dementia.  Participants felt strongly that the action taken must be respectful and mindful of the person’s dignity and in no way undermine the person’s autonomy. Carers need to undertake an individualised assessment before making a judgement as to the best approach to use. In the context of nursing home care the detailed life history of the person with dementia was considered crucial to this process. A list of reflective questions which carers should consider before using therapeutic lying will be presented.

PO1.7. Meeting without Boundaries

LABRUYERE Sandrine, JUNGLAS Lisa, KRAUS Tania, BARTSCHINSKI Tobias

A European programme: The « Meeting without Boundaries » programme began in 2012. It was created by two associations sharing the same conception and ethical views concerning dementia:  France Alzheimer Vaucluse (France) and Alzheimer Gesellschaft München (Germany).  Since five years this European programme has been enabling people with dementia accompanied by a family member, volunteer workers and professionals from both associations to regularly come together for a week’s time.

A programme based on exchange and communication: « Meeting without Boundaries » enhances communication between participants, enabling them to share their respective experiences. Each meeting is an opportunity to compare the vision and the approach of each country in regards to dementia in our society and how each one deals with dementia from a political, social and cultural point of view. These discussions between European neighbors are not only very enriching for the participants but they also give mutual inspiration for both associations.

A programme which gives priority to those with dementia: their wishes, their ideas, their role as citizens in society

The goal of this programme is to break through the prevailing prejudices concerning dementia and to change the way it is looked upon in our societies.  « Meeting without Boundaries » makes a point of highlighting the competences of those who have dementia and largely includes them in the organization of the annual meetings. This programme enables them to remain active members of our society and to express their opinions, their views, their experience as they did publicly at the European Parliament during their third meeting in Belgium in 2014.

Our speech presenting “Meeting without Boundaries” will be illustrated by photos and a video in which participants relate their personal experience of the programme.

PO1.8. Experiences with useful activities in people with young-onset dementia

BIELDERMAN Annemiek, KOOPMANS Raymond, BAKKER Christian, DE VUGT Marjolein, GERRITSEN Debby

Background: In people with young-onset dementia (PwYOD) the sense of usefulness is compromised, due to the loss of roles that are linked to a younger life phase. Feeling useful has been suggested to be important for quality of life and social wellbeing. Therefore, for PwYOD it is important to have the opportunity to feel useful.

Objective: The aim of this exploratory study was to (1) investigate how often community-dwelling PwYOD undertake useful activities, (2) explore their experiences with these activities, and (3) examine differences in experienced quality of life, general health-rating and satisfaction with activities between PwYOD with low, medium and high engagement in useful activities.

Methods: 27 PwYOD-caregiver dyads were included in the study. To obtain a heterogeneous sample, PwYOD with different dementia causes were included. Structured interviews were conducted with both the PwYOD and caregiver to explore the kind of activities PwYOD undertook, the frequency of and experiences with these activities. Also, general health-rating and experienced quality of life of the PwYOD, next to demographic information was obtained. To examine differences between PwYOD with low, medium and high engagement in useful activities, group wise effects were analyzed using non-parametric Kruskal-Wallis tests.

Results: The activity level of PwYOD varied, with approximately one third of PwYOD reporting that they often engaged in useful activities, and similar percentages of PwYOD reporting medium or low activity levels respectively. PwYOD rated their current useful activities with a 7.4±1.5 on a scale of 1-10. Further analyses showed that PwYOD reporting high engagement in useful activities also had higher ratings of general health (p=0.014) and quality of life (p<0.01). Furthermore, they were more satisfied with their current activities (p=0.029). As opposed to the PwYOD perspective, the majority of caregivers reported low levels of useful activities in the PwYOD. Only 19% of the caregivers reported that their relative often engaged in useful activities. However, the majority of caregivers judged the frequency of current useful activities as more or less adequate or adequate.

Conclusion: Preliminary results of this exploratory study indicate that there may be an association between engagement in useful activities and quality of life in PwYOD. Furthermore, the perspective towards activities may differ between the PwYOD and the caregiver. This study suggests a need for stimulating useful activities in PwYOD and supporting caregivers in finding ways to stimulate and involve their relative with dementia in useful activities.

PO1.9. The activists behind disease – the Finnish model of participation

KUUSTERÄ Kirsti, YLITOLONEN Juha, KATTAOUI Taru

In recent years, the Alzheimer Society of Finland and the 44 local memory associations have developed methods to enhance the participation of people with memory diseases. We know, based on a survey to the local associations, that the opportunities that people with memory diseases have to participate to the governance in associations, vary and follow unique local habits.

After a brief benchmarking on European good practices, a national working group of people with memory diseases and their family members was started in 2013. The work of this Memory Activists -group has been well received and the regularly collected feedback from the group has been invariably positive.

As the work of the national Memory activists have been established and the need of a uniform participatory model identified, we have been building a model and support for local Memory Activists -groups. The aim is to have a group in each 18 regions of Finland by 2018. The local Memory Activists will uphold the work of the local associations and discuss the situation of people with memory diseases at the region. The principles guiding Memory Activists -groups are 1) genuine influence and 2) promoting and supporting active participation of all members. 

The Memory Activists -groups give people with memory diseases and their family members new opportunities to have a say to the work of memory associations and to the wider society. Chance to steer the work of memory associations, to showcase perspectives of special groups (such as people with young dementia), and to speak on behalf of all the people with memory diseases, are examples of reasons that make this form of volunteer work worthwhile for the Memory Activists.

PO1.10. Step by step towards a dementia friendly society- Information and education for retailers, police officers and security guards

KARRMAN Ann-Christin, NORDBERG Gunilla

Greater awareness and understanding in the community will enable people with dementia to remain living in their own home longer. Therefore people in the community need knowledge about dementia to be able to understand and assist people with dementia in their daily life. Creating information and education materials for grocery stores, police officers and security guards is important steps to reach the goal: A dementia friendly society.

Swedish Dementia Centre (SDC) is a non-profit foundation and the government founded national centre for excellence in dementia care. Our commission is to collect, structure and disseminate knowledge into the society and facilitate translation of research into practice. SDC actively promotes future development in care of persons with dementia – towards a more dementia friendly society. In cooperation with various actors, we have taken a series of initiatives.

Shopping is an important part of daily life. For people with dementia, it is unfortunately often associated with anxiety and stress. In order to help stores to be better adapted to people with dementia, SDC has, in collaboration with others, developed a knowledge support kit with tips and advices on how to make it easier for people with demetia to continue to do their everyday shopping. Small changes in shops can make big difference.

Police officers and security guards are two occupational groups who also meet people with dementia in many different situations. SDC has created a web-based education together with a toolbox with additional material and an information pamphlet to provide basic knowledge to these groups. What signs and symptoms can indicate that a person they meet may suffer from dementia, how to deal with a person who has difficulty remembering and expressing himself as a result of such illness? This is two of the questions addressed in the education package.

PO1.12. An asset based approach to outcome measurement: two new positive psychology outcome measures for people with dementia

STONER Charlotte, ORRELL Martin, CSIPKE Emese, SPECTOR Aimee

Objectives: Outcome measurement in dementia research often centres on psychological symptoms including depression, anxiety and neuropsychological behaviours and it is often inferred that, by reducing these symptoms, an increase in wellbeing will be observed. Positive psychology theory takes the opposite stance and refers to the study of human strengths and capabilities that contribute to wellbeing. This approach examines the presence of positive traits such as hope, resilience and humour and seeks to understand how these positive traits contribute to wellbeing. This has been examined in the qualitative literature and represents a more asset or strengths based approach to dementia than traditional models. However, to examine the role of positive psychology in a quantitative manner, robust outcome measures are needed. The aim of this study was to examine the psychometric properties of two positive psychology outcome measures for people with dementia.

Methods: Positive psychology outcome measures were developed during an earlier, iterative mixed methods study. The measures were subject to an internal pilot (n=33) and then, following feedback from experts and minor revisions, were used in a larger scale observational study at five UK National Health Service Trusts from 2016- 2017. Participants completed the two new positive psychology measures, alongside measures of depression and quality of life.

Results: The new measures were analysed using psychometric testing including analyses of internal consistency, convergent validity, factor structure and a path analysis using structural equation modelling techniques. Main results will be available in mid 2017 and presented at the conference.

Conclusion: Previous outcome measures developed for people with dementia have failed to recognise the importance of positive psychology concepts as an agent in wellbeing. The use of psychometrically robust positive psychology outcome measures reflects a more balanced approach to wellbeing and can support future research and care.

PO1.13. Representations and adjustment in dementia

QUINN Catherine, MORRIS Robin, CLARE Linda

People’s understanding of their illness, or illness representations, can have an impact on their response to the illness and their well-being. The Common Sense Model (CSM) proposes that in order to make sense of symptoms a person will develop individualised illness representations. These are formed of five components - label, cause, timeline, controllability and consequences – which interact to form a schema or set of beliefs. The CSM is a useful model for examining a person’s beliefs about dementia. To date, however, few studies have explored illness representations in people with dementia and there is no standardized tool to measure illness representations in people with dementia. We explored the illness representations held by people with dementia as part of a study that aimed to develop and validate a new measure, the Representations and Adjustment to Dementia Index (RADIX), which explores how people with dementia understand and adjust to having dementia. Participants were 400 people with mild to moderate dementia from the UK who were enrolled in the IDEAL cohort study. Here we focus on participants’ perspectives on the nature and causes of their symptoms. When asked to name the condition, participants were more likely to use a descriptive label such as memory problems than a diagnostic label such as Alzheimer’s. Most participants could identify a possible cause of the condition. Usually this was the ageing process, but other perceived causes were changes in the brain, hereditary factors, illness or disease, lifestyle and life events. The findings indicate that people with dementia held a variety of beliefs about their condition and this has implications for the provision of support for people with dementia. In particular, a person’s illness representation should be identified and taken into account in order to provide tailored information and advice.

PO1.14. Many faces of the memory diseases

HIETAKANGAS Minna

The Memory Society of Finland is launching a campaign called The Many Faces of Memory Diseases in September 2017. The aim of the campaign is to give voice to the people with a memory disease and their families. On the website of the campaign they tell their own stories related to memory diseases.

The Many Faces of Memory Diseases shows that there doesn’t exist only one story, but every story of a memory disease is different. The website of the campaign is going to be published at week 38 when we spend the Memory Week in Finland. It gathers people’s stories across the Finland.

Communications Planner of Muistiliitto makes the first interviews. After launching the website people with memory diseases and their loved ones can tell their stories on the web site.

One aim of the campaign is to reduce the stigmas related to memory diseases and affect the attitudes of people. The campaign gives tools for everyone to meet a person with a memory disease.

The campaign is promoted in social media channels to get coverage in media. The social media channels are used to encourage people to take part in the campaign.

PO1.15. Making Norrköping municipality dementia-friendly: outline of a study protocol

KULLBERG Agneta, ODZAKOVIC Elzana, NEDLUND Ann-Charlotte, HELLSTRÖM Ingrid

Dementia awareness in the civil and public society are urgent. In Sweden, the majority of people with dementia are living in ordinary housing and continuous to live at home during the disease developments. Although, an increased prevalence is expected in coming decades, research focusing on strategies that support making the society dementia-friendly based on people living with dementia own experiences is rare. By involving people with dementia this study design provides a basis for developing a dementia-inclusive community in Sweden. 

Research on the worldwide development of dementia- friendly initiatives proposes that a participatory approach is essential to get people living with dementia involved and empowered.

The purpose is to explore how experiences and knowledge of people living with dementia can inform the local community to become more dementia-friendly and thereby contribute to the development of a model. The study addresses what dementia-friendly mean for people living with dementia based on their experiences and priorities.

We apply a case-study design with a participatory approach with ethnographic methods. Initially, we conduct sit-down and/or walking interviews individually or in groups with people with dementia. In the process of data analysis, a framework will be formed in dialogue and expert groups with people with dementia will be established. Health and care workers, service staff (as e.g. within transport) in the civil society, will be invited to workshops where results from the interviews by expert groups and researchers will be presented and reflected on. In parallel a reference group are established with local politicians and key stakeholders in the society for disseminate awareness of the dementia-friendly initiatives.

The study gives voice to people with dementia and opportunities to contribute collectively to create a dementia-inclusive society in a bottom-up approach directed to the relationship between co-researchers and the public and civil society. 

PO1.16. Development of content for a couple-management guide aimed at couples living with dementia

BIELSTEN Therese

Objectives: This study describes the development of content for a couple-management guide aimed at couples in which one partner has a diagnosis of dementia. The rationale for this study is based on the importance of sustained sense of couplehood and maintained relationship quality within couples, in which one partner has a diagnosis of dementia, and the lack of interventions that aim to empower couples in nurturing their relationship and their well being in context of everyday life. Methodology and methods: The methodology of the study was informed by Alfred Schutz (1973) framework of social phenomenology applied by using previous research of couplehood and wellbeing in dementia as a” scientific system of references” which was further explored and interpreted through the subjective meaning of couples living with dementia. Data consisted of semi-structured interviews and written material from five couples, in which one partner had a diagnosis of dementia. The objectives of data collection were to confirm the relevance of themes informed by previous research, and to allow new themes outside the pre-determined themes. For analysis of data we used a hybrid approach of thematic analysis, with combined deductive and inductive analysis, which was carried out by applying the” scientific system of references” of couplehood and wellbeing in dementia to the data, and by gaining the subjective meaning from expert actors (couples) in everyday life from the data. The relevance of the findings was further explored through a series of member check processes. Conclusions: The suggested content informed by previous research was confirmed to be of relevance for couples well-being in everyday life and additional topics were added after analysing the data, and through member check processes.

PO1.17. Living a meaningful life in relational changes: A systematic meta-synthesis of qualitative studies on persons with dementia

ERIKSEN Siren, HELVIK Anne-Sofie, JUVET Lene, SKOVDAL Kirsti, FØRSUND Linn Hege, GROV Ellen Karine

Background: Psychosocial aspects are essential in health and well-being. When suffering from dementia social relationships will be challenged and often changed. Considering how important relationships with others are for health and well-being, the challenges faced by persons with dementia, and the help and support they require, there was a need a for a systematic review of the literature on this perspective. Therefore, we aimed to interpret and synthesize persons with dementias experience of lived relations with others.

Methods: A systematic, computerized search in six databases was conducted, combining terms for different types of dementia and qualitative methods.  Studies were restricted to peer-reviewed research articles written in English, published between January 2004 and May 2016. Inclusion criteria were: (1) sample of persons with dementia only; (2) qualitative interview; (3) person with dementia's voice was explicit; (4) describing experiences of social relations.

Results: The searches resulted in 1,309 articles. Among these, 131 were further explored and 63 were included for review. The meta-synthesis includes interviews with 874 persons with dementia.

Living with dementia changes life, leads to new social roles and different social statuses. Persons with dementia experience being disconnected and dependent on others, feeling like being a burden, and being a person who is treated in paternalistic ways. Family, friends and others with dementia might play significant roles in their ability to maintain a meaningful life (See table 1)

Conclusion: The three categories emerging from the data: change in life, change in relations and maintenance of meaningful aspects in life, are inter twinned and essential in sustaining a lifebuoy for persons with dementia. The comprehensive meaning of the material is understood as the expression:Living a meaningful life in relational changes.

Table 1: Overview of findings: categories and subcategories

Categories

Change in life

Change in relations

Maintenance of meaningful aspects in life

Subcategories

New roles and different social status

Protecting roles and stabilizing life

Being disconnected

Being dependent

Being a burden

Being treated

Supportive interactions

Being with peers

PO1.18. Decline of the political acknowledgment of Alzheimer’s disease in France

DESANA Maris-Odile

Although the decline of cognitive abilities was long considered a natural consequence of aging, repeated campaigns along with a better understanding of the disease thanks to research, finally tempered these misconceptions. For years now, Alzheimer’s has been considered a full-fledged pathology, with causes and symptoms, for which there is available care. This evolution came hand in hand with political and social awareness of Alzheimer’s disease. This is manifested by the progress made under strong political stimulus and which gave this pathology a specific place in the world of healthcare:

  • in 2004, the recognition of the disease as a long term illness, triggering 100% medical cost coverage by Social Security (sanitary scope).
  • in 2008, attribution of the “Major National Cause” label (social scope).
  • The development of public health plans (including the 2008-2012 Plan), which largely contributed to setting up a care system specific to Alzheimer’s disease (medical-social scope).

However, these hardly obtained improvements have been threatened by public authorities over the past few years, namely with the 2013 announcement of a comprehensive neurodegenerative disease plan which would replace the previous Alzheimer Plan. Ever since, public authorities have favored a global approach with common solutions, risking at times to overlook the specificities of each pathology.

Two more recent major events attest to this worrisome decline:

  • in the medical field, the efficiency of symptomatic treatment having been deemed insufficient, the delisting of reimbursed medication is being considered by many. Despite the fact this would deprive a number of patients of this drug approach which has proven beneficial, this would be a negative message for society. Given the lack of therapeutic hope, many may consider a diagnosis as being useless, even though it is the first step toward accessing the set of help and care benefits.
  • In the governance field, the national body of users recently created in France (UNAAS), unfortunately does not recognize Alzheimer’s disease as such, and too many would still like to reduce it to the aging factor.

In light of these preoccupying events, France Alzheimer wants to continue to fight to give Alzheimer’s disease all the consideration it deserves within the public sphere.

PO1.19. Tangotherapy, a novel approach to supporting and caring for persons with dementia

D’ANASTASIO Clelia, RIBANI Valeria, CALZOLARI Maria

Background: Riabilitango® Method is based on exercises selected from the steps of Argentine tango to improve balance, posture, motor coordination and movement in people with neurological and cardiopulmonary diseases (1-4). The results obtained with music therapy in people with mild dementia (5), have led us to believe that Riabilitango® can be usefully employed in their favor, aiming at stimulation either of motor skills, either at socialization, self-esteem and subjective well-being. We present an experimental protocol being carried out through collaboration between the non-profit organization ARAD, an association of people with dementia and their caregivers, and Olitango Association.

Materials, methods, results: Courses of 12 Riabilitango® meetings lasting 1 hour each, for groups of up to 15 persons with moderate dementia and mild motor disturbances but capable of autonomous walking, and of up to 15 caregivers. Before beginning each course, ARAD experts administer these tests and replicate them at the end: 1) Neuropsychiatric Inventory Questionnaire; 2) Geriatric Depression Scale (to people with dementia and caregivers); 3) Mood Thermometer (persons with dementia and care-givers); 4) Tinetti Test for walking and balance evaluation.

Before starting, an information/training meeting for caregivers is carried out at the Alzheimer Coffee (ARAD). The efficacy and the liking are evaluated both by the administration of the pre-post test, either through focus groups conducted by psychologists.

A video reports this experience and it may be used for dissemination purposes and as a teaching aid in the courses for health workers. Informed consent and releases from participants have been acquired.

The meetings are still ongoing, statistical data will be available in June 2017.

PO1.19a Pilot project on the use of a music education program to foster intergenerational understanding and reduce stigma on dementia

D’ANASTASIO Clelia, RIBANI Valeria, BARBANI Elisa

Inizio modulo Music Together® is a music education program for children from 0 to 5 years developed by the Center for Music and Young Children®, Princeton, USA.

It aims to provide a relaxed, playful, participative and explorative activity to develop musical intelligence and to prepare childrens’ future advances in music. It also favours strong relationships with the accompanying adult, unveiling inedited musical skills through exchange between generations.

We present the design of a project drawn up by ARAD association volunteers, aimed to experiment Music Together® with persons with dementia attending an “Alzheimer’s Coffee”, children of the nearby nursery, their parents, to stimulate their well-being, encourage the relationship between generations, favour the knowledge of people with dementia in a pleasant environment to counteract the stigma of the disease.

Informations are collected about previous working activities of participants with dementia, knowledge of nursery songs and rhymes, preferences about leisure activities.

Music Together® Teacher guides the class to songs and dances, use of objects (scarves, balls...), improvisations with children and adults. 

Before the meetings, mood of people with dementia and their caregivers is detected with the “thermometer of the mood”.

At the beginning of the meeting the activity is mainly directed at children playing with musical instruments such as bells sewn on soft little pillows, small sounding eggs, percussions tools.

Then these instruments are distributed to the elderly too. Songs are invented on the basis of the collected data, miming crafts, animal sounds, singing the rhymes suggested by the elderly.   

4 encounters (one per month) are programmed, each lasting 45 minutes.  At the first meeting partecipated 44 elderly, 12 mothers with their small children.

The activity is still ongoing, results of this pilot project, together with video documentation of the activities for which the necessary releases have been obtained, will be available from July 2017.

 

PO1.20. Towards knowledge dissemination and utilization of scientific results within the National Dutch Dementia program; Memorabel

PAPMA Janne, VAN DER MARCK Marjolein, OSSENKOPPELE Rik, VOS Stephanie

Introduction:The dementia research and innovation program ‘Memorabel’ is part of the Dutch National Dementia Plan (“Deltaplan Dementie”, https://deltaplandementie.nl/en). This eight-year scientific program covers four themes: (i) dementia etiology, (ii) dementia diagnostics, (iii) prevention and treatment strategies, and (iv) (cost)efficient dementia care. Memorabel currently includes over 80 scientific projects, investing €32 million. In order to ensure that scientific proceeds will eventually reach its end users, a policy on knowledge dissemination and utilization of project proceeds is implemented by ZonMw. In the current project we aim to identify the end products and end users of Memorabel, and bundle the experiences of dementia researchers in terms of facilitators and barriers for eventual implementation of scientific proceeds in the Netherlands.

Methods: The project started in October 2016 with a brainstorm session with all Memorabel project leaders. They were challenged to contemplate on potential barriers and facilitators to reach end users of the projects. Next, phone interviews were conducted with project leaders in order to define their experiences, and identify potential effective implementation approaches. Particular attention was paid to implementation strategies that transcend individual projects. We will discuss our results with an expert group including dementia patients, caregivers, clinicians, case-managers, policy makers and healthcare insurance companies. We will integrate results from the meetings with project leaders, expert group and interviews in a report on knowledge dissemination and utilization of Dutch dementia research, and will advise ZonMw on effective implementation approaches.

Results: Results will entail the proceeds of this project, i.e. a report on the status of knowledge utilization within Dutch dementia research, and a recommendation on effective implementation strategies in order to reach the end users of Memorabel.

Conclusion: Policy on knowledge dissemination and utilization is imperative for a dementia research grant, and will facilitate and accelerate scientific proceeds reaching its end users.

PO1.21. Behavioral and psychological symptoms of dementia (BPSD) at the early stage in Holocaust survivors – clinical experience from an Israeli geriatric psychiatry clinic

MARKS-NEUMANN Lucie

The early stage of dementia is characterized by gradual memory decline, difficulty to express oneself accurately, disorientation to time and place and general confusion.  As a result of these symptoms and the growing dependency on others, people with dementia may react with depression and/or anxiety. The individual reaction is largely shaped by the inner world, which was formed from childhood experience and reflects in personality traits.

We are now witnessing dementia in Holocaust child survivors, who had been severely traumatized in their childhood. The confusion, disorientation and helplessness, echo their childhood traumas and awaken them, sometimes to the extent that memories are experienced as actual events. The early stage of dementia in Holocaust survivors is thus often characterized by greater suffering compared to people who had normative lives.

Nearly a quarter of the elderlies in Israel are Holocaust survivors. We bring vignettes of therapy from our clinic, which reflect how the past awakens with the onset of dementia. Vignettes show how the lack of basic trust results in pervasive refusal to get help both in therapy and at home, and the memory loss and helplessness are translated to paranoid ideations and horror. 

It is extremely important to know the biography of the person with dementia so reactions which might seem exaggerated can be understood in the context of his/her life and empathic ways can be found to help.

PO1.22. Communication with mutual respect: A rewarding life despite dementia - a report covering a collective destigmatization campaign by German people with and without dementia

WILLIG Simone

„Nothing about us without us” demand people with dementia throughout the world.

Communication with equality enables concerted joint action. With the intent of a vast destigmatisation campaign, people from different occupational groups, both with and without dementia, combine and share their abilities and knowledge since summer 2015.

What has happened ever since the beginning of that campaign? What do people with dementia really deserve to become a „dementia champion “? What does communication with mutual respect really mean and how does it, how can it work?

The report covering the various actions – especially in the area of social media and film – illustrates just how successful a fresh, ‘potential orientated’ view of people with dementia can be. It shall encourage people with dementia, or more exactly, ‘despite dementia’ to continue to stride their path of life and to bring their capabilities into their roll in society.

PO1.23. “Back to a future”

DE ROSA Giuliana, FRANCONE Caterina, VERDE Martina, RUSSO liana, FARAONE Antonella

Introduction: The association for neurogeriatric diseases and Alzheimer's syndrome, A.M.N.E.SI.A. has used, within the meeting center, Casa Alzheimer, a model derived from the observation of the emotional adaptation strategies developed by each person suffering from neuro-cognitive deterioration and their relatives, towards the pathology. A path that goes through a complex and moving inner world wich waits to be read and shared. 

Aims: To give global support both individualized and for a interpersonal relationship, putting the elderly person at the center of any intervention; a support wich begins from the emotional adaptation strategies, exalting and enhancing them, in order to redefine each person in their role and psychophysical balance.

Objecives: maintaining balance and well being at all levels, and specific objectives customized and integrated at every competence.

Materials e Methods:  Fifteen elderly, between 65 and 90 years of age, partecipated, with diagnosis of minor and severe dementia. Their selection was carried out through the use of numerous evaluation strategies wich, starting from acceptance, medical examination and cognitive and affective evaluation, have started observation processes; and every possible method in order to support and customize the therapies. The elderly have been divided in groups according to their attitudes and rehabilitative needs, thorugh the creation of different spaces (…“worshops”) complementary to each other in order to help socialization. The duration was six months with two meetings a week.

Results: Significant improvements in mood were highlighted, increased ability to socialize, increased sense of self-efficacy-autoefficacia, increased sense of identity with recovery of the motivation to treatment.

PO1.24. Dementia in rural wales: the lived experience

SMITH Kathryn, HOGAN Hayley

Over 83% of Wales is defined as a rural area yet little opportunities have been created for people affected by dementia (PAbD) living in rural areas to share their experiences. More importantly, without this engagement, the development and/or review of services, policies and strategies in Wales have little influence from people affected by dementia in rural communities.

Alzheimer’s Society Cymru created opportunities to actively involve people affected by dementia living in rural communities across Wales so that they could share their experiences of living with dementia in a rural community. Experiences were analysed for emergent themes to ensure that the themes that were identified were as a direct result of the experiences of people affected by dementia rather than pre-determined assumptions.

The themes identified from the experiences of PAbD included lack of transport, dementia awareness and accessible services. These themes, and others, have been discussed and explored in a report which concludes the perceived challenges and assets that influence the ability of people affected by dementia to live well in rural communities. As a result, this report has influenced and shaped an Alzheimer’s Society Cymru policy report. Additionally, it has been used by the Welsh Assembly Government to influence the development of their first Wales Dementia Strategy. A Wales Rural Dementia Working Group, made up of key enablers and decision makers, has also been established to ensure that people affected by dementia in rural Wales live as well as possible.

People affected by dementia are experts by experience and this engagement project identifies the importance of continually and actively involving people affected by dementia to influence everything that directly affects them. Engagement should no longer be seen as an innovative practise, but at the heart of everything we do.

PO1.25. Attentional response related to the reminiscence through the music in people affected by Alzheimer`s disease and other dementias

AMPUDIA Patricia Álvarez, RODRÍGUEZ Ainhoa Carpintero, AMEZ Laura Fuentes, QUIROGA Amparo Rodicio, DIÉGUEZ Flor Juan

In recent years there is an increase interest in developing new approaches for the treatment of dementia and among them Alzheimer’s disease (AD) and other dementias by using alternative strategies which can be developed in parallel to pharmacological therapies. In this sense, within Alzheimer Leon we have recently developed an investigation project about attentional with music therapy. The research has been done to verify and know the impact that music has on people affected by Alzheimer's and other dementias in different stages of the disease. Through this field work we have been able to know how music can increase attention in Alzheimer's disease and other dementias with severe cognitive impairment.

Through the special technology, Sociograph is an exclusive technology able to measure the impact of a stimulus within a group of people, which measures, collects and processes the skin resistance. Due to its sensitivity and reliability, the electrodermal activity (EDA) is one of the most widely used physiological phenomena within the field of social sciences. Such activity refers to the bioelectrical action of the skin surface, which involves complex mechanisms of activation and control. Further, it is very sensitive to emotional stimuli and cognitive processes. The series of records obtained is divided into two variables, which coincide with the EDA categories: Electrodermal Level (EDL) and Electrodermal Response (EDR).

Our study focus to know the effect of the use of music in reminiscence therapies with people affected by Alzheimer's and other dementias in the various stages of the disease. In this research we studied 48 people affected by Alzheimer's disease and other dementias, (20 GDS-3-4; 18 GDS-5-6 and 10 GDS-7) they were distributed in 6 groups: 3 control groups and 3 experimental groups. The groups were conformed according to the different cognitive levels, being divided the control and experimental groups randomly.

 In total, 6 sessions of reminiscence of average duration of 20 minutes each one, in which only in the experimental groups the music was used. Through the Sociograph technology, the individuals' electrodermal activity was recorded during the sessions. The differences were significant between the control groups and experimental groups both with mild cognitive impairment and severe cognitive impairment in the increase of attention through the use of music. The results show how music is a very effective therapy to improve attention in people affected by Alzheimer's disease and other dementias in different grades.

Also, the research showed that the use of the music as a therapeutic tool in a reminiscence therapy for people affected by Alzheimer's disease and other dementias is especially important with people with GDS 7, because the attention in this group was increased more, than people with GDS 5-6.

This research opens new ways of working because it demonstrates the usefulness of music to improve therapies that are developed with people affected by Alzheimer's disease and other dementias with mild and especially with severe cognitive impairment.

PO1.26. Living as normal a life as possible includes having a holiday, supported holidays for people with dementia and their carers

LÜCK Saskia, MUNN Nathalie

The relationship between the carer and the person with dementia can become strained without any support for the carer. This support can be for example in the form of sharing experiences with others in a similar situation or it can be in the form of assistance with daily care activities. The Alzheimer’s Society in Brandenburg has taken on the challenge of offering this support to people with dementia and their carers during a supported holiday. In this way the carer can experience some relaxation and relief while spending a nice time in a different environment with their partner/mother/father with dementia. This would be very difficult without any support.

The Brandenburg Alzheimer’s Society has been carrying out these holidays since 13 years and would like them to benefit more people. Of course this type of holiday requires more planning and organization but it really can provide relief to those taking part and improve the family’s quality of life.

On the basis of our experience we would like to talk about:

  • The organization needed to enable the guest with dementia to be as independent as possible
  • Suggestions for activities such as excursions, visits to museums, creative activities (together and alone)
  • A program specifically for the caring relatives during the holiday (relaxation, sport, training sessions, advice)
  • Quality control aspects (Training sessions for the caring relatives and care key, 1 professional carer for 2 persons with dementia)
  • Financial aspects (costs for guests, possibilities of using the care insurance for supported holidays in Germany)

Since last year we have been participating in the federal model project ESPRIT which is evaluating the effects on people taking part in the supported holidays and the conditions for their success. Data collected during 6 holidays run by us and the Alzheimer’s Society in Hamburg is feeding into the evaluation. It will be analysed by the Institut for Gerontological Research in Berlin to help create quality standards for supported holidays for people with dementia and their carers.

All in all we fight for the interests of families where dementia is a challenge. In Germany and also in Brandenburg the offers for supported holidays are growing. Let us encourage this development!

PO1.27. A prevention program for older healthy adults at risk of cognitive decline

BARLOU Klea, KARPATHIOU Nomiki, DIMAKOPOULOU Eleni, VLACHOGIANNI Aggeliki, POTAMIANOU Dimitra

Background and Objectives: 47 million people worldwide are living with dementia. This number is estimated to increase to 131.5 million by 2050 (ADI, 2015). As there is no cure for dementia, controlling modifiable risk factors seems to play an important role in reducing the impact of the disease. Α multi-component program was developed in order to support participants to adopt new behaviors and habits that reduce the risk of cognitive decline. The program is based on the ThinkingFit intervention (Dannhauser et al., 2014) and was culturally adapted to meet the needs of the Greek population.

Methods: Participants (n=10) were recruited from the memory clinic of the Dementia Day Care Center of Athens Alzheimer Association. They all had evidence of subtle cognitive impairment, but did not meet criteria for mild cognitive impairment. The intervention program included physical, cognitive and social activities. In a second phase, participants were asked to engage in a variety of suggested activities. Outcomes were measured using cognitive and physical fitness tests, as well as an activity questionnaire. Assessment was performed at baseline, at the end of the first and second phase. The activity questionnaire was readministered at 12 months post-intervention.

Results: Adherence levels were high for all components of the program. Improvement was found for the 2 min Step test (p=0.020). A significant difference exists for trail making-B test (p=0.028) and phonemic fluency (p=0.080), suggesting an improvement in executive skills. A trend towards engaging in more activities and for longer duration was found at the end of the program.

Conclusions: Participants seem to benefit from their participation in the program. Executive function is the cognitive area that seems to benefit most from this type of intervention. A follow up study with a larger sample size is needed to confirm the results.

PO1.28. My handbook – when I have received a dementia diagnosis

HOFFMAN Wilhelmina, SAMUELSSON Ewa

There are school- and handbooks written for people working in social care and health care. There are also available information and material for family carer. Some prose is written by or about people with dementia. When the question came about information material, a handbook for the person affected, we had none we could hand out. Now we have. The SDC, established 2008, is a non-profit foundation and the government founded national centre for excellence in dementia care. Our commission is to collect, structure and disseminate knowledge into the society and facilitate translation of research into practice in care. Our main goal is a more dementia friendly society. The centre has produced several handbooks for people working in different care-settings; in social care as well as health care, together with web-based free of charge education programs, including family carers. Until two years ago we did not have the thought of writing a handbook for a person diagnosed with dementia. This book has now been produced and its content is facts about dementia, tips and advices to make the daily life easier. It discusses different type of aids and smart tools. Information about driving and other practical issues is also a theme. One chapter deals with feelings of difficulty and to find support. The handbook has been written after interviews with persons affected by dementia. They have provided us with their experiences and shared their tips and advices. Before the book was finished it was also proofread by several persons affected by dementia. The book is now available in Swedish and is free of charge to load down from our homepage.

PO1.29. Joining forces to improve psychosocial care for people with cognitive deficits across diagnoses: social health as a common framework

STIEKEMA Annemarie, VAN HEUGTEN Caroline, DE VUGT Marjolein

Cognitive deficits are core to dementia and have a major impact on independence and participation in daily life. The impact of cognitive deficits on everyday functioning is similar in other populations dealing with cognitive deficits, such as people with brain injury (i.e. stroke) or a severe mental illness such as schizophrenia. These similarities have resulted in the development of comparable psychosocial interventions across populations which aim to support people to adapt to cognitive deficits by teaching them to make use of existing capabilities and (re)gaining skills, or by adapting the environment. We argue that each of the fields separately and the field of psychosocial care in general would benefit from a closer collaboration with regard to the development and evaluation of innovative psychosocial interventions.

Collaboration between different fields has been complicated by the use of different care models, each with their own terminology. The concept of social health - the ability to participate in work or other meaningful activities and to feel healthy despite a condition - translates to the leading care models within the fields of dementia, brain injury and severe mental illness. We put forward that the concept of social health provides a common language and framework for collaboration. Based on this, we elaborate on examples of adjusting key elements of interventions that proven to be successful in one population for use in other populations, of common innovative directions such as eHealth programs to work together on, and for overcoming barriers and identify facilitators for similar existing programs. A major step forward would be the use of common outcome measures to show the benefits of psychosocial interventions across the fields. With this presentation we hope to disseminate our thought.

PO1.30. Being involved in research – an example from a UK study

SARTAIN Kate, GOLDBERG Sarah, O’BRIEN Becca, HARWOOD Rowan

Service user involvement in research is important. This presentation, by a former carer of parents with dementia (KS), will explore how service users have been integrated into a research study which aimed to develop and test the feasibility of a dementia communication skills training course for healthcare professionals (the VOICE study). The VOICE study involved conversation analysis of video recorded conversations between healthcare professionals and patients with dementia in the acute hospital.  These findings were then used to develop a dementia communication skills training course.

Prior to the initial funding application, the PPI group contributed their thoughts on the potential benefits of the study and the acceptability of video recording patients with dementia in the acute hospital. KS as a co-applicant contributed to the proposal prior to submission.  She attends and contributes to all project management meetings alongside two other PPI members.  Two further PPI members sit on the project steering committee. KS reviewed all patient facing documentation for the observational study. The training intervention was developed over four days of meetings involving three PPI members and the research team and training experts. PPI contributions to the intervention included that the course be two days (a month apart) with a reflective diary between the two days.  Some of the video clips used in the training were questioned in terms of how person-centred they were, which changed the focus of how and what was taught and resulted in a greater focus on person-centred care in the training. KS has attended two courses to support the fidelity and acceptability to service users of the intervention. 

In this study, service users have been integrated into the research team to enhance the study design, ensure governance from a service user’s perspective, improve the intervention and ultimately to benefit patients with dementia and their carers.

PO1.31. The role of the artist in arts-based dementia care

MITTNER Lilli, LOTHERINGTON Ann Therese

Along with increasing knowledge about positive effects of creative arts on everyday life for persons with a dementia comes a growing interest among carers in using the arts, particularly music, to enable communication and connectivity with people whose ability to speak has declined. Music interventions with as well professional musicians as musical amateurs, that is, care staff or informal carers, point to the advantages of music in care for persons with a dementia. However, very few studies have so far analyzed the distinctive role the artist might have in the moments of connectivity that a music session creates, or in other words, asked what the artist might accomplish that the amateur cannot. The aim of this paper is, therefore, to elaborate on the role of the artist in arts-based dementia care.

The concept of relational aesthetics (Bourriaud 2002) transcends the understanding of artwork as an encounter between a viewer and an object. Instead, artwork creates social environments in which people come together to participate in shared activities. The paper presents a meta analysis of innovative projects that brings professional musicians, staff and people with dementia together and investigates the quality and precondition for the creative moment within the framework of relational aesthetics.

In widely known projects as for example “Music for Life” or “Lost Chords” the artist appears as an equal to the person with dementia, a co-investigator of the musical knowledge production. The music intervention becomes a space of possibilities, a way of entering relationships, and a source of equal empowerment and creation of moments of meaningful cooperation and participation. Our hypotheses generated from the meta analysis are that professional artists, thanks to their educational background, are particularly well prepared to act on the unexpected and handle the unknown, and to encounter each situation as a new creative possibility.

PO1.32. Identifying patterns of communication in patients attending memory clinics: a systematic review of observations and signs with potential diagnostic utility

BAILEY Cate, BLACKBURN Daniel, POOLE Norman

Background and Aims: Subjective cognitive complaints are commonly encountered in primary care and often result in referral to memory clinics. However, meta-analyses have shown such concerns do not consistently correspond to objective memory impairment or predict future dementia. Memory clinic referrals are increasing, with greater proportions of patients attending who do not have dementia. Studies of interaction in memory clinic assessments have identified conversational profiles which can differentiate between dementia and functional disorders of memory. Such profiles could reduce the need for unnecessary investigations in patients without dementia. To date studies exploring communication patterns for the purpose of diagnosis have not been reviewed.

Methods: This review utilised a systematic approach to synthesise studies with heterogeneous methodologies. A combination of narrative description and typical memory clinic assessment were employed as a framework. This facilitated the identification of signs and observable features of communication which could clinically differentiate between dementia and functional disorders of memory.

Results: 16 studies were met criteria for selection. Three overarching themes emerged: 1) Patient participation, ability to answer and companion involvement, 2) Cognitive assessment during interaction, and 3) Strategies and accounts for loss of abilities in people with dementia.

Conclusion: Whether the patient attends with a companion, how they participate, give autobiographical history, demonstrate working memory, and qualitative observations during routine cognitive testing are all useful in building a diagnostic picture. No one sign is likely to prove diagnostic, nor would observation replace history taking, examination or blood and imaging investigations where appropriate. However, equipping clinicians with an increased repertoire of observational tools could aid both those working in and referring to memory clinics. Future studies should explore these phenomena in larger populations, over longer periods, include dementia subtypes, and develop robust definitions of functional memory disorders to facilitate comparison.

PO1.34. Affiliate stigma and caregiving consequences for the family members of patients suffering from a mental illness similarities and differences in the cases of dementia and schizophrenia

MOGLAN Maria, SFETCU Raluca, GAGIU Corina, DOBRE Cristiana, TUDOSE Catalina

Caring for a person suffering from a mental health disease has physical, psychological, emotional, social, and financial consequences for the caregiver, often referred to as caregiver burden. One particular type of consequences is represented by courtesy or affiliated stigma, which stigma is acquired through having a relationship with a stigmatized individual and it refers to a set of negative believes and affects which may lead to withdrawal from interpersonal relationships. In this study we aim to better understand the complicated relationship between affiliate stigma and burden of care for the family members of two distinct groups of patients suffering from a mental health problem, respectively neurocognitive disorders and schizophrenia. In order to do so, the Affiliate Stigma Scale (ASS) and the Involvement Evaluation Questionnaire (IEQ) have been completed by all family members of patients diagnosed with dementia or schizophrenia, which have been hospitalized in a large psychiatric hospital in Bucharest for two consecutive weeks. The comparative results as well as their implications for policy, clinical practice and research will be discussed in this presentation.  

PO1.35. AniTa – Relatives (of people with dementia) in exchange

WOOCK Kristina, CORDING Linda, BUSCH Susanne

Carers of people with dementia have often been the center of consideration and research. The project AniTa (German acronym for “relatives in exchange”) revisits this aspect of dementia care with the focus of attention on distant living family members. Modern working conditions often demand the willingness to shift ones place of residence according to the requirements of the job. The project AniTa, which is sponsored by the “GKV Spitzenverband”, aims to involve the group of distant living relatives into the care of their elders by helping them to connect with others who are in the same situation. In two model areas in the south and north of Germany several institutions, among them Alzheimers Germany and regional Alzheimer organizations, support and promote the project. Via web page distant living relatives can search informal help and support for their elders while at the same time they offer to give the same support to some as yet unknown person in their own vicinity. The project team matches the data and helps to build exchange relationships on a preferably reciprocal basis. Main objective of the attendant research is to find out whether distant living relatives are willing to participate in an exchange of care, if they profit from it and if the program proves to be profitable to those in need of care. The attendant research will consist of interviews with the parties concerned, expert focus-group interviews and the collection and analysis of quantitative data.

The project will start in May 2017. By giving a presentation at Alzheimer Europe at such an early stage of the project, it is intended to discuss the study design and the concept of the project against the background of first results in order to enhance and develop the program.

PO1.36. Person-centred care in dementia: Systematic review and development of an integrated model

BOSCO Alessandro, SCHNEIDER Justine, COLESTON-SHIELDS Donna Maria, ORRELL Martin

Objective Person centred care underpins most therapeutic work in dementia care owing to its consideration of the needs of the person and for its individualised approach to care. Although its effectiveness is supported by robust evidence base, the current practice in person-centred care still places people with dementia as the objects of care rather than advocates of their own health. In addition, despite the fact that the key role of carers has been widely acknowledged in governmental policies, this does not necessarily reflect on current practice.

Aims We aimed to develop an integrated model to care which gives new positioning to people with dementia and their carers within the person-centred care. This review comprises four different phases:

  • Systematic review and meta-ethnography on personhood in dementia;
  • Scoping review and content analysis of health care policy documents on personhood and dignity in dementia;
  • Development of an integrated model to care;
  • Consultation with PPI members.

Results The three order constructs from the meta-ethnography were: Dignity and personhood, coping with dementia, and barriers to dignity in care. When positive strategies and coping mechanisms are present there is increased likelihood to experience better sense of self, dignity and have improved quality of care. Conversely, the more negative the barriers to dignity, the less positive the strategies and coping mechanisms, the less positive the quality of care experienced. 

Our content analysis revealed six themes: Role to play, family, environment, behaviour, policy and law, health care partnership.

Conclusions We found that equal positioning in dementia care is promoted by active participation in social, civic and political life. This is promoted through behavioural changes at micro and macro levels of society: providers of care being trained in co-producing health care; policy makers creating opportunities with, rather than for people with dementia.

PO1.38. Relatives of people with dementia – caregivers as key figure in domestic support arrangements

FREWER-GRAUMANN Susanne

While dementia represents the most common reason for admission into nursing homes, studies reveal that most people with dementia prefer to stay at their homes. With the ongoing social transformation process (i.e. higher mobility demands, increased employment of women), the conditions for domestic caretaking of relatives have increasingly deteriorated over the years.

As a result, placement in a nursing home often becomes necessary. Despite this fact, relatively little is known about how caregivers manage their support arrangements, i.e. why some caregivers don’t rely at all on existing support structures.

To fill this gap, 14 semi-structured interviews were conducted with caregivers of people with dementia. The interviews were transcribed and evaluated using the methods of the Grounded Theory.

The results show that support arrangements can be described as viable if they are focused on diversity (i.e. including formal and informal network components) and reliability (as a result of successful negotiations between the caregivers and the different network partners). Caregivers play the key part by assuming a bridging role between different formal and informal support systems. When the assurance of autonomy fails, caregivers don´t rely on formal or informal network components, because they need to be in charge of their network. Accordingly, clarity on roles needs to be accomplished through negotiating procedures so that caregivers’ claim for autonomy can be assured. Therefore, successful negotiation procedures were identified as one key condition for the viable design of support arrangements. That requires the caregivers to have a high degree of competency.

The present study identified negotiation with formal network partners as particularly difficult. This reveals that in addition to appropriate relief services relatives need to be supported in their roles as managers of the support network. Moreover, the possibility of remaining in one's own household will continue to increasingly depend on that success.

PO1.39. Persons with downs syndrome and symptoms of Alzheimer’s disease in the Swedish care-context, a caregiving perspective when testing persons with ds for ad

WESTERLUND Karin

Background: Luckily, Swedish citizens with Downs Syndrome (DS) live a longer life now.

Genetic drivers result in a high frequency of Alzheimer’s pathology in these individuals

Approximately 1700 Swedish persons with DS have received a Dementia-diagnosis

Objective: The objective of this on-going project, year 2015-2018, is to investigate Swedish persons with DS and AD; to raise awareness on caregiving issues surrounding the AD-testing process

Project design: 1) A work model based on the AD-testing procedure, has been set up: Based on the Dementia-diagnosis set by the primary physician; Interviews is done with the patients surrounding contact network, utilising selected tools and scales such as e.g.: “Early Signs”, “DSDS”- (Dementia Scale for Downs Syndrome) 2) The caregiver perspective; given the circumstances, the patient, family members, and contact persons is interviewed. The interviews become the “caregiver perspective” in the annual report to the project funder Allmänna Arvsfonden and in cooperation with the Swedish Down Association.

Methods:

  • The project speaks at Swedish NGO -events to meet more caregivers face-to-face.
  • A motion picture will be released year 2017 utilizing actors with DS
  • An education program for residential home nursing staff about AD & DS is on-going

Results: Education for residential staff in parallel with caregiver interviews in three regions in Sweden; gave the project insights in knowledge gaps with residential staff and the magnitude of the caregiver burden.

Discussion: 1) The project design provides a robust framework to evolve a caregiving perspective to the AD testing procedure for persons with DS. 2) Further expansion of the project should incorporate: cooperation with other European NGOs, explore Quality-of–life measurements for persons with DS & AD and to develop caregiver education packages

PO1.40. Developing an online support tool for family carers of people with dementia at the end of life

DAVIES Nathan, WALKER Nina, HOPWOOD Jenny, ILIFFE Steve, ROSS Jamie, WALTERS Kate, RAIT Greta

Background: Caring for someone with dementia is one of the most demanding caring roles, and end-of-life care can be very difficult for families. A lot of support for carers is provided outside of their home, which many cannot attend due to the commitments of their supporting role. The aim of the current study was to understand what support carers need towards the end of life, their views of receiving support online, and to develop a prototype online support tool.

Methods: A co-design approach with three phases:

  • A systematic review of existing internet-based interventions for family carers
  • Semi-structured interviews with older family carers (65 years +) using purposive sampling to determine the optimal format, content and design of the support tool
  • User-testing with family carers to assess the acceptability and content of the tool with focus groups.

Findings: Carers discussed several challenges including; understanding and expectations of end-of-life, adapting to a caring role, and a lack of openness. Carers expressed a lack of understanding about what to expect towards the end of life. They discussed a need for more information about practically caring, such as information about eating and nutrition.

Carers expressed difficulties adapting to their caring role highlighting the need for support with many aspects including; managing behaviours which challenge and managing medical decline.

Carers’ views about online support spanned a spectrum reflecting a diversity of internet usage. Simplicity was requested for the design and navigation of the website. Videos were viewed positively as opposed to text, watching videos was likened to the shared experiences in support groups.

Discussion: The internet is seen as a viable option for supporting carers over 65 years of age, however it is not beneficial to simply be provided as an information resource and may need interaction with trained professionals.

PO1.41. Carer support – usability and usefulness of an integrated ICT platform supporting informal caregivers of people with dementia

LUNDE Lene, MOEN Anne, SPIRU Luiza, ANDRUSHEVICH Aliaksei, DUZHA Armend

Dementia is characterized by a progressive loss of cognitive, functional and social abilities. Being an informal caregiver for people with dementia (PwD) is challenging. There is a recognized lack of suitable resources and methods to alleviate these challenges. New Information Communication Technologies (ICT), such as internet-mediated interventions, are increasingly used to support informal caregivers of PwD. We share findings from a pan-European multilingual ICT-based system for training, orientation and support of informal carers of PwD. The CarerSupport platform offers a suite of services; 1) informative post with facts, tips, advice and coping strategies, 2) forums for peer networking among informal carers or consultation with health professionals, 3) tele-consultation with health-professionals, and 4) training programs addressing relevant topics. 176 informal carers from Italy, Switzerland, Romania and Norway were recruited during April-September 2016 to participate in 8 weeks’ field trials to test the CarerSupport platform’s usability and usefulness (response rate 28.1%). Demographic data, including caregivers’ situation, knowledge and use digital platforms, were collected at baseline. At the end of the field trials, usability and user satisfaction were assessed with questionnaires. Summarized, the participating informal caregivers were between 21-94 years old, with mean age of 58 years, 73.3% were female. Almost all trial participants were family caregivers and almost half supported their parent. Nearly half of the caregivers reported 1-3 years of caregiving services. Most of the participants were satisfied with the platform, and demonstrated willingness to use it regularly. Our results are promising in addressing perceived needs for information and support among informal caregivers. Furthermore, the CarerSupport platform has potential to reduce current service fragmentation as a single-entry point to a wide range of services. However, the participants pointed out that features like private rooms in forum must be added to make the platform better.

PO1.42. The family’s experience and perception of phases and roles in the progression of dementia: an explorative, interview-based study

CLEMMENSEN Trine Holt, BUSTED Laila Mohrsen, SØBORG Jane, BRUUN Poul

Background: Dementia constitutes a serious international public health problem, with the number of diagnosed patients expected to double before 2030. Relatives play an important role in how the progression of dementia is addressed because they must accept responsibility for the coherence of family life. The aim of this study was to examine how family members experience the challenges of everyday life throughout the progression of dementia, from the first signs of dementia until at least six months after the person with dementia has moved to a care facility.

Methods and materials: 14 individual interviews were conducted with relatives from families of persons with dementia over the course of two months in 2014. The participants were family members from eight families, both spouses and adult offspring. Families were recruited from three different nursing homes in a Danish municipality. Data were analysed by inductive content analysis.

Results: Through the progression of dementia – from the perspective of the family – a model of three phases was developed. These phases involved small changes in everyday life, adaptations to everyday life, and the loss of everyday life. The analysis further identified the following two archetypes of relatives that develop throughout the progression of dementia: the protective relative and the decisive relative. The study found that the two types of relatives experience different challenges during the three phases. It is important for health professionals to be familiar with these changes, when they evaluate whether the relatives of a person with dementia require help.

Conclusion: The relatives continuously experience challenges throughout the progression of dementia and must adapt to these changes and losses in everyday life. A greater understanding of each of the archetypes’ experiences during the identified phases is necessary when providing care to a family of a person with dementia.

PO1.43. How a “Carer Controlled Health Record” for a person living with dementia can help hospital health professionals individualise care and support family caregivers

BAUER Michael, FITZGERALD Les, FETHERSTONHAUGH Deirdre

People with dementia are known to be at greater risk of adverse outcomes when in hospital.   Research highlights the importance of health professionals acknowledging the role of family caregivers in improving healthcare planning and delivery for people in hospital who cannot provide information themselves. Family caregivers of people with dementia however often feel undervalued and disengaged from decision-making, care delivery and discharge planning processes when in hospital and as a result express frustration, the absence of knowledge and education, poor communication, a lack of involvement, distrust and unpreparedness for their caregiving role, both during the hospital stay and after discharge. To support family caregivers’ needs to be kept up-to-date with hospital care, contribute to care decisions and discussions and be prepared for their role in after-hospital care, a Carer Controlled Health Record (CCHR) was developed from the literature and using a modified Delphi technique with stakeholders representing a range of health professionals, caregivers and people living with dementia.

This presentation will showcase the CCHR which allows the sharing of key information between hospital health professionals and family caregivers, including the role of the caregiver prior to admission, expectations about the caregiver’s involvement, the caregiver’s expectations of health professionals and relevant information about the person with dementia including their communication needs, nursing and medical care and advance care planning. Use of the CCHR can; 1) enhance the quality of care delivered; 2) assist health professionals with care delivery and be labour saving; 3) empower the family caregiver and person they support; 4) assist discharge planning and 5) improve the hospital experience for both the family caregiver and the person with dementia.

PO1.44. The role of gender as a determinant factor of shame levels and other psychological parameters in caregivers of patients with dementia

TSATALI Marianna, AVDIKOU Konstantina, GOUVA Mairy, STEFANATOS, Charalampos, TSOLAKI Magda

During the care of a patient with dementia, shame can occur for various reasons. A caregiver can feel ashamed because of the patient’s behavior. Additionally, the thoughts of caregivers on whether or not they are sufficient to their role as caregivers, can also be associated with increased levels of shame. Therefore, these thoughts can increase the levels of shame that a caregiver may feel, something that possibly affects patient’s care. Trying to identify further the role of shame in dementia care, we investigated whether the levels of shame differed in male and female caregivers. Specifically, internal and external shame, levels of anxiety and aggression were analyzed, in order to find possible differences between men and women caregivers. 21 males and 34 females were recruited by the Greek Alzheimer's Association in Thessaloniki, Greece. The caregivers who took part in the study, were the main providers of care for their patient with dementia. After reading the information sheet and signed the informed consent of the study, the participants completed the following psychological tools: a) The Experience of Shame Scale (ESS), b) the Others As Shame scale (OAS), c) the Hostility and Direction of Hostility questionnaire (HDHQ), d) the State-Trait Anxiety Instrument (STAI). Independent Samples t-test showed that female participants had increased levels of Internal t(53)=2.54, p= .038 and External shame t(53)=2.11, p= .049. However no significant differences by means of gender were found in State Anxiety and Hostility. Additionally, significant positive relationship was also found between the internal shame and aggression (r=.38, df=53, p= .042). Taking into account that shame is considered as a determining factor which intervenes in patients with dementia daily care, the role of gender is very important, because it differentiates the levels of shame experienced by a caregiver. Therefore, it is particularly important to focus on the different ways in which both sexes experience their role as caregivers.

PO1.45. The memory café experience in Portugal: reasons for attending and impact on caregivers’ lives

ALVAREZ Catarina, SOUSA Isabel, AMANTE Maria João, ARAÚJO Lia

Introduction: Memory Café is a psychosocial intervention for caregivers widely implemented, consisting in monthly meetings for persons with dementia or memory problems and their family caregivers held in an informal and community setting. However, there is little published research on its effects in participants’ lives.

Objective: This study aims to identify the benefits of Memory Cafés in caregivers.

Methods: 68 family caregivers that have participated in at least two sessions in one of nine portuguese Memory Cafés constituted the sample. The mean age was 63,8 years (SD 12.9), 69.1% were female, the majority was married (69.1%) and attended a mean of 11.6 (SD 3.8) school years. 76.7% of caregivers lived with the person with dementia, 55.9% were spouses, 32.2% sons/daughters and 11.9% other relatives. Data was collected from a questionnaire for caregivers to recognize the reasons for attending a memory café and the changes experienced in their lives due to their participation. 

Results: Reasons considered important were “friendly and safe social place” (98.6%) “getting useful information from professionals” (98.5%), “allows me to learn new things by sharing experiences with other participants” (98.5%) “helping me to be in a better mood” (98.5%) “casual and relaxed atmosphere” (98.5%) “allows me to meet others in the same situation” (97%) “being together with other caregivers” (96.9%). Regarding positive changes in their lives, it is noteworthy the more self-confidence and self-esteem (93.5%), improved relationship with the person with dementia (92.1%) and greater ability to care (90.5%).

Conclusion: Results confirm the importance of interventions for caregivers that foster social relations and support in an informal context that provides information about dementia. Improving confidence and ability to care as well as the relationship between caregiver and the person with dementia, benefits both of them. This study supports the replication of this intervention in Portugal and worldwide.

PO1.46. Psychosocial interventions designed for dementia caregivers

NTANASI Eva, EXARCHAKOU Vasiliki, SAKKA Paraskevi

Caring for a person with dementia can be challenging, potentially influencing caregivers’ health, mental health, work, social relationships, and quality of life. To alleviate caregivers’ stress and enable them to cope effectively with the demands of caring, numerous interventions have been developed. Psychoeducation programmes are designed to inform caregivers about dementia providing skills training and education. Moreover, counselling either in groups or in individual session focuses to the emotional burden of caring (i.e. anger and depression management).

The aim of the present study is to investigate the efficacy of three different interventions for family caregivers of people with dementia. The study sample consisted of 84 caregivers participating either in a 2-year person-centered support group (14 persons), in a psychoeducation programme (30 persons), or in individual counselling sessions (10 caregivers). There was also a control group of 30 persons, who although cared for a family member, they did not receive any support. All interventions were implemented in Athens Alzheimer Associations Day Care Centers. Participants’ quality of life, depressive symptoms and caregiving burden were measured with Adult Carer- Quality of Life Questionnaire, Beck’s Depression Inventory and Zarit Burden Interview respectively. All questionnaires were completed at the end of each intervention.

Results: Compared to the caregivers who did not receive any support, those who participated in any of the psychosocial interventions described above showed less depressive symptoms and lower burden. Differences between the three interventions will be also presented in detail.

PO1.48. Social support for informal caregivers via telephone: feasibility and effectiveness of the TALKING TIME randomized controlled trial

DICHTER Martin, ALBERS Bernd, TRUTSCHEL Diana, WERMKE Katharina, SEISMANN-PETERSEN Swantje, HALEK Margareta, BERWIG Martin

Background: Caring for people with dementia (PwD) at home requires an enormous amount of time, organization and commitment. Therefore, informal caregivers (ICs) of PwD often feel a high burden. Even though support groups on-site have shown positive effects on the subjective well-being and on the perceived social support of ICs, relatives either have no time or opportunity to leave the PwD alone or there are no support groups in the vicinity. The Talking Time project therefore aims to close this supply gap by providing structured telephone-based support groups in Germany for the first time.

Methods: A 3-month two-armed randomized controlled trial (Clinical Trials: NCT02806583) compared the feasibility and effectiveness of the Talking Time intervention to usual care (control). Outcomes (Self-rated mental health (primary), self-rated physical health, social support, caregiver reaction and people with dementias’ challenging behavior (all secondary)) will be measured at baseline (T0) and after 3 months (T1). A process evaluation was carried out using a mixed-method design.

Results: 36 of the included 38 informal caregivers and people with dementia dyads completed the trial. The differences between baseline and T1 demonstrated a positive but not significant development in the intervention group compared to the control group. This positive but not significant tendency for the development in the intervention group was also found for the secondary outcomes. The application of the Talking time intervention was feasible and resulted in no harms.

Discussion: The results demonstrate the feasibility of the talking time intervention and promising results regarding the primary and secondary outcomes. After an optimization of the intervention its effectiveness has to be investigated in a bigger evaluation trial.

PO1.49. Supporting informal dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burde

THYRIAN Jochen René, ZWINGMANN Ina, HOFFMANN Wolfgang, MICHALOWSKY Bernhard, DREIER-WOLFGRAMM Adina, HERTEL Johannes, WUCHERER Diana, EICHLER Tilly, KILIMANN Ingo, TEIPEL Stefan

Objectives: Current research suggests that dementia care management (DCM) aimed at identifying and meeting the various needs of persons with dementia (PwD) and their caregivers can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n= 317 dyads of caregivers and community dwelling PwD participated in a general practitioner (GP)-based, cluster-randomized intervention trial with two arms (DCM versus care as usual) and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions. Secondary intention to treat (ITT) per protocol analyses were conducted on the caregiver’ outcomes.

Results: Caregivers in the intervention “DCM” group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e., emotional support), caregivers’ subjective burden due to behaviour change (i.e., cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e., financial losses) compared to caregivers in the control “care as usual” group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower informal dementia caregivers` burden in multifaceted dimensions. By targeting the dyad, DCM might be beneficial to other caregiver support programs since effects on the caregiver might moderate or mediate the effects on the PwD and vice versa.

PO1.50. Carers’ experiences of dementia cafés: a place to feel supported and be yourself

GREENWOOD Nan, SMITH Raymond, RICHARDSON Angela, AKHTAR Farrukh

Background: Informal, unpaid carers play an important role in supporting people living with dementia. However, being a carer can be difficult and carers may benefit from support themselves. Alzheimer’s, dementia or memory cafés are one such type of support. These cafés, which originated in the Netherlands in the 1990’s, are usually offered in the voluntary sector and are a place where people living with dementia and those supporting them can meet and socialise with others in similar situations. 

Methods: This qualitative study used digitally recorded semi-structured interviews to explore the experiences of eleven carers attending five dementia cafés in and around London, United Kingdom. Data analysis was thematic.

Findings: Although the cafés often differed in how they were organized and in the activities provided, there were many reported similarities amongst carers in the benefits identified. Analysis revealed four main themes:

  • cafés provide a friendly, relaxed, welcoming atmosphere where carers can go with the person they care for and feel supported and accepted
  • visiting cafés often brought a sense of normality to carers’ lives
  • carers and people with dementia often anticipate attending the cafés with pleasure and saw it as an important event in their calendar
  • carers enjoy both socialising with others and the activities provided

Carers also highlighted other benefits including peer support, information provision and support from the volunteer café coordinators.

Conclusions: Dementia cafés are a valuable form of support and may be unique in allowing carers to feel accepted whilst frequently also giving them brief respite from their caring role.  However, for cafés to offer the best possible support, more needs to be known both about the perspectives of café attendees living with dementia and the perspectives of attendees from diverse ethnic and cultural groups.

PO1.51. The necessity for sustainable intervention effects in dementia care: results of an mhealth intervention based on the experience sampling method

BARTELS Sara, VAN KNIPPENBERG Rosalie, KÖHLER Sebastian, PONDS Rudolf, MYIN-GERMEYS Inez, VERHEY Frans, DE VUGT Marjolein

Objective: Caring for a person with dementia can be challenging over years. Therefore, interventions for caregivers with a sustained effectivity are needed. Our mHealth intervention using the experience sampling method (ESM) showed positive effects on caregivers’ well-being over a period of two-month after the intervention. In this study, we examined the effects after six-month of the selfsame intervention to evaluate the sustainability of positive intervention effects.

Methods: The six-week mHealth intervention based on the ESM consists of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback) and a control group (providing regular care without intervention). Caregiver sense of competence, mastery and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the six-month follow-up data (n=50).

Results: Positive intervention effects on sense of competence, perceived stress and depressive symptoms were not sustained over six-month follow-up.

Conclusion: The benefits of this mHealth intervention for caregivers of people living with dementia were not found over a long time. Similarly, other psychosocial interventions in dementia care rarely have or report long-lasting effects. In order to contribute to caregivers’ well-being sustainably, researchers and clinicians should continuously insure flexible adjustment of the intervention and consider additional features such as a ‘boost-dose’. In this regard, mHealth interventions can offer ideally suited and unique opportunities.

PO1.52. A journey into dementia: the cinema as a sharing tool

BRUNO Patrizia, FRANCONE Caterina, DE ROSA Giuliana, PENNACCHIO Antonietta, CONTE Concetta

Introduction: The association for neurogeriatric diseases and Alzheimer's syndrome, A.M.N.E.SI.A., within different activities aimed to raise awareness to the issue of dementias, has designed a "Cineforum" project for all of those who live this problematic condition, both operators and caregivers. This project consists in the vision of a movie concerning the topic of the "third age", the movie was screened each second wednesday of the month, at the "meeting center" in Villaricca, a municipality in the province of Naples. 

Aims: Starting from the idea that cinema is a great means of cultural communication, easy to enjoy and engaging for most people, the main objective is to give a space of aggregation and emotive containment for all of those who live this experience, giving them the possibility to share their thoughts with the team of specialists.

Material and Methods: The initial phase of the project begins with the choice of the movie to be included in the program. This task is done by a caregiver, who is a cinema expert. The movies selected by the caregiver are proposed to the equipe which, separately, watches them and decides wether to insert them in the program. Hereafter, the operational phase begins: in the chosen day, there is a first phase of informal hospitality, in a convivial atmosphere and after consuming a short dinner together, the participants watch the movie. After that, there is a phase in wich the participants share opinions and reflections with the equipe, in this phase the geriatric doctor and the psychologist moderate the discussion, providing specific informations on the subject and encouraging the sharing of the emerging contents.

Results: The movies or some part of them, for their didactic value as a whole or for the intensity and significance of some scenes, could make the participants reflect and help them to modify dysfunctional behaviors, helping both caregivers and operators. Furthermore, this project promotes the sharing of the emotions related to the illness and a better management of it. It also stimulates the interest towards the subject of the third age, not only for what regards dementia but also for what concerns the general situation of the person with his or her "needs" in the true sense of the word.

PO1.53. From family carers to national dementia strategy in action

ZLOBEC LUKIC Stefanija, KRIVEC David

Dementia was not discussed up to 2009 in Slovenia. Hence, there was no National Strategy in place. In 2009, National Strategy for dementia was launched. Two specialists in the field of dementia and myself as representative of Spominčica - Alzheimer Slovenia and family carer of young onset dementia housband took initiative for this Strategy, which received support from Parliamentary Health Board. Minister of Health issued a decree to establish a Working Group of 10 experts in January 2010, that comprised of 10 professionals from different areas (psychiatrists, neurologists, GPs and representatives of Spominčica and the Government). In the next five years the working group prepared the Dementia Strategy. In May 2016 Minister of Health signed the Strategy. The strategy focuses on individual and his needs through achieving three goals: early diagnosis, access to treatment and therapy and coordinated support. In the next month the activities to prepare the Dementia Strategy Action Plan started. The action plan focuses on to achieving the goals with setting specific actions for defined agencies and actors. The actions are prepared by three subgroups comprised by relevant stakeholders. The subgroups are: health, social welfare and research and education. The action plan will be prepared by June 2017.

In Slovenia we have established a working group of family carers of persons with dementia three years ago. The group is in contact regularly, we support each other. The group works very well and in our experience it is great to have it! Alzheimer Europe lunch debates in Brussels emphasized the need for wide public campaign to prepare a National Strategy. On our initiative all eight Slovenian MEPs endorsed by signing the AE Dementia Pledge that dementia becomes the priority of public health. Spominčica successfully promoted through nationwide Alzheimer Cafés, support groups, education programs for carers, Spominčica magazine etc. ever since.

PO1.54. From visitor to care partner: “family presence” practices in a long-term residential care home from the lived experience of a family carer

MATZ Gerlise

“Mummy, I don’t want to be shot.”  It was 2:30 a.m.  My mother had a terrified look in her eyes when she uttered these words.  She was a young child in the war when she and her family were forced to flee the advancing army.  I sat down beside her at the edge of her bed, reassuring her that we were safe and could go to the toilet together without any worries.  She did what she had to do while I provided the usual assistance, and then we walked back to her bed, where she fell asleep instantly, soundly and peacefully.  Then I went home. 

No nurse or care aide could have been expected to be with my mother at that specific moment, much less understood the historical context of her statement, her personal situation within that context, or even the language of the statement.  My mother understood English, but rarely replied in English anymore; one of my tasks was to translate and interpret her statements and life experiences for care staff. 

(Had I not been there, she would have tried to run from the loud bed alarm, not made it to the bathroom in time and/or likely fallen.) 

At that point, my mother was in a long-term residential care home that practiced a philosophy of collaborative, person-centered care (Kitwood 1997), enabling family members to contribute to care beyond “visiting hours.”

In a time of budget cuts and understaffing, and of mass migration with its attendant trauma and communication barriers, “family presence” policies are especially vital to the wellbeing of people with dementia in hospitals and care homes.  But what are the benefits and the risks of such “family presence” policies from the perspective of a family carer?  How can self-care and person-centered care be balanced?

PO1.55. She has been diagnosed with Alzheimer’s disease but won’t accept the diagnosis: what then?

CUTLER Stephen, ANGHEL Mirela

There is much useful literature available on how to deal with a loved one’s diagnosis of Alzheimer’s disease and how to deal with the aftermath of the diagnosis. Helpful material is provided by organizations such as the Alzheimer’s Association and the National Institute on Aging in the United States and Alzheimer Europe, to name just a few. Brochures, pamphlets, and booklets abound with tips for caregivers and care recipients, carrying titles such as: “Now What? Next Steps After a Diagnosis of Alzheimer’s Disease” (NIA, 2016). Conferences such as the annual meetings of Alzheimer Europe represent another source of valuable information. Not to detract in the slightest from the importance and necessity of providing such information, this presentation contends that much of this material is predicated on an acceptance of the diagnosis by the person who has Alzheimer’s disease. But what about the person diagnosed with Alzheimer’s who refuses to accept the diagnosis or vigorously denies having Alzheimer’s? We begin with a brief case presentation of denial and then raise for thought and discussion several questions and issues that follow from diagnostic non-acceptance. At the most basic level, do we even know how many persons accept the diagnosis and how many reject it? Among deniers, how long does denial last?  Are there typical precipitating events that convert denial to acceptance? If early diagnosis offers the best chance of treatment, what are the implications when someone denies they have the symptoms of Alzheimer’s or rejects a diagnosis of Alzheimer’s? Issues of autonomy and benevolence are always difficult when dealing with Alzheimer’s, but how should potential caregivers and those vested with legal responsibility for loved ones diagnosed with Alzheimer’s deal with denial? In short, we raise the general issue of caregiving for individuals diagnosed with Alzheimer’s when denial is present.

PO1.56. Caregiving/supporting students of persons with and without dementia

MINDERMANN Nele, BUSCH Susanne

Caregiving/supporting relatives of care-dependent persons are oftentimes focused by research. The study at hand, conducted by the Hamburg University of Applied Sciences (HAW), however focusses on the group of caregiving/supporting students. Students represent a special group of caregivers as next to the care/support of a closely related person they may be confronted with multiple challenges ranging from exam preparation to temporary jobs and familial obligations. The cross-sectional study aims at examining the timely burden as well as the extend of the regular caring/supporting situation. Furthermore, it looks at the subjectively experienced strains caused by regular caregiving/support of students with a special focus on relatives of people with dementia.  Ideas and recommendations to improve the support of affected students are specified. To reach the formulated objectives a standardized online questionnaire was sent out to all HAW students (N=16,892). Within the analysis 14% (n=126) of the respondents (n=859) were identified as caregiving/supporting students. A separated consideration of the groups of caregiving/supporting students with and without a relative with dementia showed a higher timely burden during the lecture period, in activities to achieve income and a higher timely burden due to familial obligations in the group of students caring for a person with dementia. Also the subjectively experienced strains are considerably higher in that very group. Both groups mostly provide care in the areas household, administration and leisure activities, less support is provided in the ‘classical’ areas of care like mobility and hygiene. Remarkably, no student reported to make use of the HAW-internal support. Yet, the students commented that adjusting the study and exam regulations to individually facilitate the university life of affected students would be helpful. Further differentiated results of the study as well as solution approaches for a better support of caregiving students will be presented.

PO1.57. The lived experience of family caregivers of dementia people with those of patients with cancer in Indonesia: a comparison study

KRISTANTI Martina Sinta, ENGELS Yvonne, EFFENDY Christantie, ASTUTI UTARINI Adi, VERNOOIJ-DASSEN Myrra

Background: While in Indonesia cancer is well accepted as a disease requiring caregiving, dementia is still considered ‘a normal condition’. These differences might affect the lived experiences of family caregivers. Family caregiving, in essence, relates to the relationship between the (family) caregiver and the patient, as well as to the specific social and cultural context.

Aim: We aimed to compare the lived experiences of family caregivers of people with dementia (FCD) with those of patients with cancer (FCC) in Indonesia, and to explore the role of their social health in these experiences.

Method: A qualitative design was applied. In-depth interviews were conducted with FCC and FCD in two outpatient clinics of a tertiary hospital in Yogyakarta. The constant comparative method was used for data analysis. Data were interpreted using the concept of social health to explore the lived experiences of the family caregivers. Atlas.ti software was used to organize data.

Results: Twelve FCD and thirteen FCC were interviewed. Three themes were identified: beliefs on caregiving, problems with caregiving and dealing with issues. Most codes were applicable for both groups of family caregivers and half of the categories were related to social health: challenges, consequences, hiding, social support and the approach of the caregiver. Only FCC were concerned with the quality of the service, financial aspects, hiding their emotions and disclosing the cancer diagnosis, while only the FCD experienced the feeling of losing their relationship with the patient. Dementia care appeared to be characterized by its simplicity and the direct ties between medical specialists, people with dementia and FCD, whereas care coordination appeared to be problematic in caring for someone with cancer.

Conclusion: FCD and FCC largely had similar experiences with the caregiving process. Gaining a better understanding of the specific lived experiences of family caregivers and of their social health opens new avenues for interventions to improve their quality of life.

PO1.58. Working toward dementia-friendly hospital wards: three lived experiences from a family carer on a vascular surgery ward

MATZ Gerlise

While the Alzheimer Society in the UK has made notable recommendations for the development of dementia-friendly communities, researchers (c.f. Hung et al. 2017) have also suggested that further translational research work is needed to develop dementia-friendly hospital wards.

Acute Care for Elders (ACE) wards themselves need environmental overhauls, along with accredited professional development and ongoing training in dementia practices for nurses, physicians, and allied health care staff as well as “family presence” policies in order to implement effective person-centered hospital care.  But what about other hospital wards?  As patients admitted to hospital with dementia increasingly include those with complex medical needs, how do medical wards not designed for Older Adults accommodate and treat patients with dementia?

This presentation tells the story of three specific interactions of a patient and medical staff on a vascular surgery ward from the perspective of a family carer.  The patient was admitted to the Emergency Department with multiple co-morbidities (e.g. diabetes, cardiovascular conditions, etc.) and life-threatening gangrene, necessitating an amputation, though she was still able and determined to walk after ortho-trauma and vascular surgeries.  The patient’s diagnosis of severe, mixed dementia made it medically necessary for the family carer and a sibling to take turns staying with her around the clock on the vascular surgery ward over a continuous 3.5-month period to take care of her “social needs” and ensure patient safety (hers and that of other patients).  Three lived experiences with (1) nurses, (2) a vascular surgeon, and (3) a psychiatrist specializing in gerontology, will be examined with regard to recommendations for dementia-oriented (inter-professional) communication strategies. 

PO1.59. Game for change applications in dementia care

LIU Noreena, WILLS Gary, RANCHHOD Ashok 

Dementia is a disease that progressively affects the brain. The patient’s carers play an important role in providing treatment. Family carers face a long and difficult journey to look after their relative with dementia. Games for change are used for creating social change for many different issues and purposes, such as political parties, human rights and global health. Games for change with different purposes include games for education, games for health and social games. The main purpose of these Games for change is to raise awareness of a subject, in order to change the way people, think or behave.  Games for education are about understanding the issues and situations in the subject. Games for health can present for brain training or involved information effect health. Social games can be a platform to increase the people’s community and share their information and emotional state. The social games can be linked with the health or education elements. This research project is about creating a game to engage dementia carers, engaging with the education, health and community elements. The aim of this study is help family carers to look after dementia patients by helping the carers to understand dementia and thus reduce their stress. The intervention is an engagement tool to increase the size of the people’s community, while also raising awareness about dementia issues by playing games, in order to provide more psychological support.

PO1.60. An online support programme for informal caregivers of people with dementia: protocol of a randomized controlled trial 

PINTO-BRUNO Ángel, KLEIBOER Annet, van STRATEN Annemieke, POT Anne Margriet

This project aims to determine the effectiveness and cost-effectiveness of an online intervention (iSupport) for dementia caregivers to decrease caregiver’s stress, burden, and symptoms of depression and anxiety. This online support programme developed by the World Health Organization (WHO) includes several CBT techniques like problem-solving, relaxation and cognitive reframing as well as psycho-education. The content of the intervention consists of 23 lessons organized around 5 modules: What is Dementia? Being a caregiver, caring for Me, providing everyday care, and dealing with challenging behaviour. All the lessons are personalized and include small exercises with instant feedback.

A superiority two-arm randomized controlled trial comparing the effects of the online support programme with a minimal intervention comparison condition will be carried out from 2017 to 2019 in The Netherlands. Informal caregivers (n=200), experiencing at least some stress or burden, will be recruited through websites, national caregivers associations, and advertisements in newspapers, magazines, etc. The experimental group will be provided with access to the intervention for 3 months while those in the comparison group will receive an informative eBook with currently available information about relevant topics on dementia care. Assessments will be done at baseline (t0), 3 months after baseline (post-intervention, t1), and 6 months after baseline (follow-up, t2). Comparison between groups and the size of the intervention effect at post-test and follow-up will be analysed. Cost-effectiveness analysis from a societal perspective will be included. In order to carry out this study, the intervention is currently being translated into Dutch and the content is being adapted to the specific needs of the cultural context.

If the results of this study would show evidence about the effectiveness and cost-effectiveness of this intervention, it would be possible to bring the opportunity to benefit from this intervention to others caregivers in The Netherlands.

PO1.61. Me and my Nan against the world

BROOKE Joanne, BROOKE Lee

Just me, a 17-year-old boy and my Nan with no understanding or knowledge of dementia, no support from the appointed social carers or advice on how to care for someone, just pure trial and error on a daily basis to survive each day as it came.

I was just starting college, a new beginning for me when my Nan was diagnosed with dementia, but we had all guessed for a very long time. I was home whilst my parents were at work and my siblings at school, when Nan would knock on the door or phone. Nan wanted to be anywhere but her beautiful bungalow, but immediately became distressed as she did not want to be here either. I didn’t complete college that year.

The aim of this presentation is the sharing of poetry and lyrics, which have been written through my experience as a young adult, to raise awareness of the support teenagers may need when a relative is diagnosed with dementia, who may often become an unrecognised/unseen carer. However, more importantly to connect to the younger generation through other forms of media and raise awareness and understanding of the impact of dementia to remove the fear and stigma, but also how the younger generation can positively support a person living with dementia and their family.

Below is an extract from one of my poems:

“You was my hero

That's why I stayed by your side

You didn't understand but I always tried

I lent my hand and I always cried

It never went to plan

You didn't know I called you Nan

That's the thing with dementia

Others just bury their head in the sand

The tension constantly grew

Didn't know what I was supposed to do

But please just remember that I'll always love you.”

PO1.62. Family carers of people living with dementia in Ireland: a one-year longitudinal study of physical and psychological wellbeing

HOPPER Louise, JOYCE Rachael, JELLEY Hannah, WOODS Bob, ORRELL Martin, IRVING Kate, VERHEY Frans

Caring for a person with dementia can place huge demands on family members and is associated with poor physical and psychological wellbeing.  This study, part of the JPND Actifcare project, explored the emotional distress, care-related stress, care-related quality of life, social networks, physical health and perseverance time of family carers in Ireland, over one year.  It also examined the influence of dementia severity (CDR) on these outcomes. People with dementia and carer dyads (n=43) were recruited through GPs, memory clinics, and local adverts. Psychometric measures were gathered at baseline, 6-, and 12-months. Carers’ levels of anxiety, depression and care-related stress were found to increase significantly between baseline and 12-months.  The quality of the dyadic relationship reduced significantly between baseline and 12-months, and between 6- and 12-months.  Carers of a person with moderate dementia (CDR 2) were found to have the worst outcomes at each of the three time points.  At baseline, they had significantly higher levels of care-related stress, significantly lower levels of care-related quality of life and significantly poorer physical health than both carers of a people with questionable (CDR 0.5) and with mild  (CDR 1) dementia.  At 6-months carers of people with moderate dementia had significantly higher levels of care-related stress and significantly lower overall happiness than carers of people with questionable dementia.  Finally, at 12-months they had significantly lower quality of life, and relationship quality than carers of people with questionable dementia, significantly higher emotional distress than carers of people with mild dementia, and significantly higher care-related stress and poorer physical health than all other carers.  Results demonstrate the need to support carers' psychological well-being as the dementia journey progresses and dementia severity increases, to enable them to continue in their vital role. 

PO1.63. Effectiveness of the experience sampling method intervention ‘partner in sight’ for spousal caregivers of people with dementia: results of a randomized controlled trial

VAN KNIPPENBERG Rosalie, DE VUGT Marjolein, PONDS Rudolf, MYIN-GERMEYS Inez, VERHEY Frans

Objectives: There is a call for interventions that effectively support caregivers of people with dementia in daily life. Ecological momentary interventions integrated with real-life assessments using the experience sampling method (ESM) could be promising to tailor interventions more toward the specific needs of the caregiver and toward those moments when support is most needed. The current study evaluates the effectiveness of the ESM intervention ‘Partner in Sight’ for caregivers of people living with dementia.

Methods: A randomized controlled trial with 76 spousal caregivers of community-dwelling people with dementia was performed. Participants were randomly assigned to the experimental group (six-week intervention ‘Partner in Sight’ consisting of ESM self-monitoring and personalized feedback), pseudo-experimental group (six-week pseudo-intervention consisting of ESM self-monitoring without feedback), or control group (usual care). Effects were evaluated pre- and post-intervention, and at two-months follow-up using retrospective measures of caregiver sense of competence, mastery, and psychological complaints (depression, anxiety, and perceived stress). Complementary, ESM measures of positive and negative affect were collected pre- and post-intervention.

Results: Both the experimental and pseudo-experimental group showed a significant increase in retrospectively measured sense of competence and a decrease in retrospectively measured perceived stress at two-months follow-up. Immediately after the intervention the experimental group showed a decrease in momentary negative affect compared to the pseudo-experimental and control group. No effects were found for retrospective mastery, depression, and anxiety, and for momentary positive affect.

Conclusions: ESM interventions could be an important asset to increase caregiver resources that could help to better adapt and manage difficult situations, and to protect caregivers against negative emotions.

PO1.64. A systematic review of randomised controlled trials (RCTs) of dementia carer interventions: the equality of care opportunities across dementia subtypes and countries

KISHITA Naoko, HAMMOND Laura, DIETRICH Celina, MIOSHI Eneida

Background Previous systematic reviews suggested that studies using more well-integrated multicomponent approaches with greater inclusion of various family carers (e.g., ethnicity, dementia subtypes) are needed. The present study aimed to systematically examine RCTs reporting the efficacy of psychological interventions for dementia family carers published over the last ten years.

Methods: Electronic literature databases were searched for articles. Two researchers independently completed screening and data extraction.

Results: Applying the inclusion criteria resulted in the identification of 27 studies using face-to-face interventions and 13 studies employing non-face-to-face interventions (e.g., internet, DVD). Of the 27 face-to-face treatment studies, 11 recruited carers of people with Alzheimer’s disease (AD) and 16 enrolled a mixture of carers of people with AD and other dementias, with only five reporting the percentage of individuals caring for people with AD and Vascular Dementia. Of the 27 face-to-face treatment studies, nine used multi-component interventions involving Cognitive Behaviour Therapy (CBT) techniques and the majority were conducted in Europe. Of those nine studies, six recruited therapists with a clinical psychology background as interventionists. Overall effect size on depression was small (g = 0.34, 95% CI = 0.06-0.62) and non-significant on burden.

Twelve studies used multi-component interventions involving non-CBT techniques. The countries where these studies were conducted varied across Asia, Europe, and South America. The majority of interventionists were nurses or allied healthcare professionals (e.g., OTs, social workers). Overall effect size on depression was non-significant and small on burden (g = 0.27, 95% CI = 0.08-0.46).

Discussion: There are gaps in the literature particularly regarding the efficacy of psychosocial interventions for carers of people with different types of dementia. The types of interventions varied across countries, with studies requiring therapists with clinical psychology backgrounds to deliver CBT-based interventions being conducted mainly in Europe. The equality of care opportunities for family carers will be discussed.

PO1.65. Adapting individual Cognitive Stimulation Therapy for delivery by a web-application

RAI Harleen, YATES Lauren, BARROSO CAVALCANTI Aline, SCHNEIDER Justine, ORRELL Martin.

People with dementia can face difficulties with staying mentally stimulated and engaged. Cognitive Stimulation Therapy (CST) offers a person based approach and can help to relieve some of these problems. It is a brief manualised evidence based psychological treatment for people with mild to moderate dementia which has shown to improve cognition and quality of life. CST is currently available in both a group and individualised format called iCST. It is worthwhile to explore a computerized version of iCST since computerized cognitive stimulation is a relatively underdeveloped research area. A computerized version of iCST which can be delivered via computers, tablets, and smartphones, would take together the added value of computer use and the beneficial effects of iCST which might produce combined, positive effects on cognition and quality of life. This study sets out to develop and evaluate the potential benefits of an iCST web-application within a feasibility study. The proposed methods for developing the iCST web-application will follow a combination of the guidelines published by the Medical Research Council for developing complex interventions and the Centre for eHealth Research roadmap. In addition, the potential for international implementation will be examined by adapting it for users in Spain and the Netherlands. The results will add to our previous knowledge of non-computerized CST. An iCST web-application will compliment traditional CST by making it even more accessible since tablet/smartphone users will be able to access it easily on their device. Furthermore, an iCST web-application will by highly relevant for upcoming generations who have grown up with the use of technology. 

PO1.66. Implementation and evaluation of a training program for informal caregivers of persons with dementia

WESCHKE Sarah, ZARM Katja, SCHWARZ Sabine, TEIPEL Stefan

In 2011, a training program called “living with dementia” for informal caregivers was established in the German state of Mecklenburg-Western Pomerania (MV). It was developed by the Alzheimer Gesellschaft MV in cooperation with the German Center for Neurodegenerative Diseases (DZNE) to support informal caregivers. In eight modules, participants learn about dementia and Alzheimer’s disease to better understand and to cope with behavioral and emotional changes of their family members. They also get information about legal aspects like entitlement to insurance benefits or health care proxies. To date, about 370 people participated in the training program.

To continuously improve the program, questionnaire data were collected regularly with two main objectives: first, to evaluate the program regarding information content and practical relevance; second, to estimate the level of burden before and after the training. We used the Zarit Burden Interview to assess caregiver burden. Pre-post data are available for nearly 100 participants. First analyses show a high level of burden (M> 24-26, which is the cut-off for standing in need for further assistance and intervention), and no significant reduction directly after the training, although most participants rated the program as positive and useful. In the next steps, we will try to identify variables which might influence the outcome, like for example health care utilization, social support or duration of disease. Results will be presented.

By identifying possible moderators, we have the chance to further support the individuals that benefit less from the current program. However, one reason for the lack of effect on caregiver burden might be the measuring time immediately after the training. Future studies should include follow-up measurements to take possible long-term effects into account. These could be more pronounced since it takes some time to integrate new coping strategies and behavioral modifications into everyday living.

PO1.68. Dementia service network: PDTA, a document in defense of person with cognitive decline and their family. An experience from North East Italy (Trieste)

SANTON Laura, VELLA Filomena, SCHREY Lara, BENEDETTI Giacomo

Background: Western Europe countries are facing explosive population ageing growth. In Italy according to the 2015 ISTAT data, population’s life expectancy is higher than European data (80,7 years for men and 85,6 for women), and the over 65 represent the 24% of the population (18,5% in Europe). Therefore, chronic age-related disease is increasing and dementia is one of the most representative of them. Indeed, it is well documented an exponential increase of a new patient category that is clinically complex and need multiple specific health care treatments representing a great challenge for the entire welfare system. 

Aim: In Trieste, a city in the North East Italy, there are about 5000 patients affected by dementia. The town is divided in four sanitary areas (districts) and in each one is present a reference point for dementia with a multiprofessional team (doctors, psychologists, nurses, social assistants). In order to optimize an integrated management of the person with cognitive decline (from the first stage to the advanced form) and of his family, we have introduced, according to the Italian Dementia National Plan, the PDTA: a diagnostic therapeutic welfare plan. PDTA is a document to better define the ideal sequence of that actions (the best one) done by professionals that work together all around the person with cognitive decline.

Results: During 2016 we evaluated in our district (District 2) 319 patients: 127 first access, 99 follow-up visits and 93 home visits. The average age was 81, the women were 192 while the men were 75. The group of patients included 4% of MCI, 28% of mild cognitive decline subjects, 44% of moderate cognitive decline subjects and 24% of severe cognitive decline subjects. 20 patients attended the group of cognitive therapy, while the group of relatives was composed of 13 persons that met once a month with a psychologist. In addiction, we activated an economic aid to improve home care for 45 patients and a path for the designation of a support administrator.

Conclusions: According to our experience, introducing the model of PDTA in practical clinic and the use of the multidimensional assessment allow us to face situations of high clinical complexity and high intensity of care. The main purpose of this strategy is to provide directive indications for promoting and improving interventions in the dementia field, not limiting to specialist and therapeutic actions, but particularly focusing on the support of patients and families throughout the pathways of care. Two main objectives are emerged from PDTA application: it strengthens the integrated network of services for dementia and it improves the quality of life of patients and their families by leading them through supporting empowerment and stigma reduction.

PO1.69. Semipublic spaces into dementia facilities

DARVO Gianluca

Alzheimer and other dementia diseases are rapidly growing all over the world and over the next few years will increase the spread of care facilities for people with dementia. In this scenario, we all should find some way to pull facilities, people and Alzheimer disease itself away from the corner, opening buildings and minds.

Create specific semipublic spaces into dementia facilities to host social functions and activities can be a vehicle to improve active involvement, inclusion, and integration of patients, relatives, stakeholders, and the whole society.

For example, we have placed art galleries in the wandering path of daily centers and residential facilities. Art is a powerful vehicle to connect what and who is inside and outside facilities because art is mainly perceived through emotive channels, and it is not always necessary a cognitive sphere; art reaches every people, even if in different ways, regardless their physical or cognitive frailties.

This kind of projects are important from two points of view: artists and community can use some spaces in the dementia facilities and, on the other side, people affected from dementia benefit from the presence of artworks and visitors in the facilities, with a global improvement of culture and social interaction.

Inserting social functions and activities into dementia facilities means opening dementia facilities to community, and promoting active involvement, inclusion and integration of relatives, caregivers and society. Besides, these kind of activities could produce further outcomes such as charitable actions and fundraising programs to support the development of additional social and care projects.

PO1.70. Secure and equal? Challenges in interpreter-mediated cognitive assessments

FIORETOS Ingrid, TORKPOOR Rozita

Cognitive testing is a central part of the diagnostic procedure for dementia diseases. The testing situation requires optimal conditions for interaction and communication between the participants. Among health professionals there is a great concern that interpreter-mediated cognitive testing does not provide reliable results. This research project aims to address that concern by recording 20 interpreter-mediated cognitive assessments performed at a specialist memory clinic in Sweden. The ensuing analysis, including translation by professional translators, reveals that communication is affected in various ways by mistakes made by both the interpreter and the health professional.

The study identifies several problems in the interplay between patient, health professional and interpreter.

Problems due to health professionals:

  • Using long sentences, and often talking fast.
  • Using medical terms, and jargon.
  • Allowing the interpreter to take charge of the testing situation.

Problems due to interpreters:

  • Not using the exact word.
  • Changing the message of what is said.
  • Not being neutral and impartial.
  • Interfering in the subject matter.

Problems due to the cognitive screening instruments:

  • Not adapted to be translated.
  • Not adapted to be interpreter-mediated.
  • Sensitive to cultural and educational background.

To improve the quality of the interpreter-mediated cognitive assessment it is needed to increase knowledge among both health professionals and interpreters. There is also need for adjusted cognitive screening instruments.

When the cognitive assessment is not secure and reliable it can lead to misdiagnosis and improper treatment.

PO1.71. Dementia raises many questions. Please ask, don’t wait!

DESBORDES Jean-Marie, Info-Zenter Demenz Team

There are about 7000 people currently suffering from dementia in Luxembourg.

If a cure is not found in the years to come, the number of people with dementia will keep rising due to the increasing life expectancy.

As you can see, dementia is becoming a genuine social and political challenge we will have to face in the next decades.

The National Dementia Plan was accepted at the Conseil de Gouvernement by the ministers present, and its implementation began in 2014.

Dementia and the diagnosis. There are a great deal of questions in this respect.

Since July 2016, the expert team of the Info-Zenter Demenz supports people with dementia and their families and provides them with information and answers to their questions.

This is an information office that Luxembourg’s residents can turn to free of charge. It is funded by the Ministry for Family Affairs through a convention.

Dementia must cease to be a taboo and needs to be accepted: Luxembourg is doing its part.

The purpose of this poster is to draw people’s attention to the importance and the services offered by the Info-Zenter Demenz in this respect.

PO1.72. Systematic review of sense of competence in family caregivers of people living with dementia: methodological issues and determinants

STANSFELD Jacki, ORRELL Martin WENBORN Jennifer, VERNOOIJ-DASSEN Myrra

Background: As the population continues to age and life expectancy increases, dementia diagnoses are on the rise (Alzheimer Society, 2014). Sense of competence denotes a caregivers feeling of being capable to manage the caregiving task and is an important concept in the caregiving literature. An understanding of what influences a caregiver’s perception of how competent they are with managing the caring task is important in informing the development of interventions (Li et al., 2012).

Methods: A systematic review of the literature identified quantitative and qualitative studies that had employed a measure of sense of competence in either interventional or cross-sectional research. Narrative synthesis was employed to synthesise the findings.

Results: There were 30 papers included in the review, of which 14 were intervention studies and 14 were observational studies. Two of the observational studies were mixed methods but the remainder were quantitative. Out of 14 identified interventional studies, 10 had reported a significant increase in sense of competence in at least one follow-up time point. Determinants of sense of competence included Behavioural and Psychological Symptoms of Dementia (BPSD), levels of depression, gratitude and meaning in caregiving.

Conclusion: The results of this review demonstrated that neuropsychiatric and BPSD symptoms of the person with dementia and the family caregiver’s reactivity to BPSD were a strong determinant of a caregiver’s sense of competence. However, a conceptual gap was identified in the existing literature with a limited number of studies reporting how positive aspects of caring or positive personality strengths can impact on a caregiver’s sense of competence.

PO1.73. Person-centered approach in counselling dementia caregivers

EXARCHAKOU Vasiliki, SAKKA Paraskevi, PRAGASTI Gabriella, ZOI Giota

Introduction: In Greece, the majority of people with dementia are cared at home, primarily by spouses and adult children. Providing care for people with dementia can have significant social, economic and health consequences for caregivers. The psychological burden of dementia is very important and increases as the condition of people with dementia declines. Athens Alzheimer Association is a non-profit organization that organizes numerous educational programs and support groups for caregivers of people with dementia, including person-centred support groups. These programs give caregivers the chance to talk through the challenges and ways of coping and share feelings, needs and concerns. Specifically, the person-centred approach in counselling and psychotherapy aims at establishing a safe environment through the facilitative role of the group leaders that include empathy, unconditional positive regard and genuineness, in order to assist the self-exploring of group members and the therapeutic process.

Aim: The aim of the present qualitative study is to explore dementia caregivers’ experience as members in a person-centered support group and to evaluate the efficacy of the intervention through the participants’ frame of reference.

Method: Seven women participated in weekly 2-hour counselling sessions facilitated by two counsellors trained in the person-centred approach. The overall duration of the program was 2 years. In order to achieve the study’s aims, all caregivers participated in semi-structured interviews. These interviews were transcribed and analyzed through Interpretative Phenomenological Analysis (IPA). This method allows us to draw significant themes from the interviews that elucidate a specific phenomenon.

Results/Conclusion: Being able to manage the negative emotions of caregiving was one of the main issues that emerged from caregivers’ interviews. All the themes that emerged from analysis will be presented in detail and the significance of using person-centred support groups for improving dementia caregivers’ quality of life will be highlighted. 

PO1.74. Women & dementia: a global challenge

LITTLE Amy, SWAFFER Kate

The impact of dementia is much greater for women than men the world over, revealed the Women & Dementia: A Global Challenge report launched earlier this year by the Global Alzheimer’s & Dementia Action Alliance (GADAA).

Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is now the biggest cause of death for women in some countries, yet currently only twelve countries offer gender-sensitive responses to the condition.

Throughout the world, women are experiencing higher dementia prevalence rates than men and face gender-specific barriers to living well with the condition.

The report finds that women provide the majority of both unpaid and formal care to people living with dementia. Two thirds of primary care partners worldwide are female, rising to more than 70% in lower and middle income countries. Those who support people living with the condition often have to make changes to their employment situation and women are more likely than men to reduce their hours to part-time, or stop work completely, to provide support to those living with dementia.

The stigma surrounding dementia exists universally and extreme forms of discrimination can lead to abuse. Older women affected by conditions such as dementia are exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition.

Dementia is a global women’s health, social care and rights issue that can no longer be ignored.

This session will reflect GADAA’s work on the issue of women & dementia including an expert-led seminar held on International Women’s Day and the Women & Dementia: A Global Challenge report. We will also showcase the new GADAA short film on the issue, hearing global perspectives on the gendered challenges of dementia.

PO1.75. International dementia planning, policy, and research initiatives related to people with intellectual disability:  International Summit on Intellectual Disabilities and Dementia

JANICKI Matthew, WATCHMAN Karen

To examine and discuss current science and practice with respect to dementia in adults with intellectual disability, the University of Stirling (Scotland) and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG; United States), organized and hosted an International Summit on Intellectual Disability and Dementia held in Glasgow, Scotland in October 2016. The Summit composed of professional and family representatives of international and national organizations from various countries with an interest in issues affecting adults with intellectual disability and dementia, examined social policy topics that included whether intellectual disability is included in national dementia strategies, lack of self-advocacy in this population, terminology when describing types of dementia, and human rights. Clinical and practice issues examined included: advanced dementia and end-of-life care, post-diagnostic services, supporting family carers, and strategies to determine the perspective of adults with intellectual and dementia in both practice and research.  A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas encompassing these issues.  The Summit proposed a number of recommendations for policy, practice and research and incorporated these into series of publications and topical summary bulletins designed to be international resources, practice guidelines. Noted also was that although countries are working under different health and social systems and possess different cultures and family expectations, there is commonality in the need for a common information and a highly trained domestic workforce to ensure the best possible supports are provided wherever persons with intellectual disability and dementia live.  This is one of a series of posters addressing outcomes/outputs of an international summit on dementia and intellectual disability held in Scotland in October 2016.  The Summit was composed of professional, family and self-advocate representatives of international and national organizations from twelve countries with an interest in issues affecting adults with intellectual disability and dementia.

PO1.76. Specialized clinical practice challenges in dementia assessment among adults with intellectual disability: International Summit on Intellectual Disabilities and Dementia

KELLER Seth

Adults with intellectual and developmental disabilities are living longer than they have ever done before and age-related health complications are now commonly being seen. The healthcare practitioner is often asked to assess the aging individual and render an opinion on whether the decline in function is normative or a sign of disease or illness. Specific intellectual disability and dementia aging complications, including early onset Alzheimer’s disease in those with Down syndrome, is a particular challenging complication for the healthcare practitioner. There has not been generally accepted education and training initiatives that are used and adopted throughout the world to assist with the evaluation, despite the fact that this is a common increasing health issue within this population. Unfortunately, age-related decline is frequently associated with an impairment in one’s activities of daily living, which often has a negative impact upon an individual’s quality of life. There is also an increase in the demand for supports from carers, the community, as well as from the government. Financial requirements increase as the degree and amount of supports grow. The ability to provide best practices of care would be expected to enable an overall relative improvement in quality of life in a cost effective, efficient manner. The poster presents an overview on this issue as well as the recommendations and action steps that are considered to help alleviate this current personal and societal healthcare dilemma. Additional information is sourced from work with the Down Syndrome Medical Interest Group (DSMIG-USA). This is one of a series of posters addressing outcomes/outputs of an international summit on dementia and intellectual disability held in Scotland in October 2016. The Summit was composed of professional, family and self-advocate representatives of international and national organizations from twelve countries with an interest in issues affecting adults with intellectual disability and dementia.

PO1.77. Exploring the effect of early-stage dementia on spousal relationship for people with dementia and caregivers

ZAFEIRIDI Paraskevi, DUNN Rosie, WOLVERSON Emma, PAULSON Kevin, WHITE Caroline

One of the changes in the lives of people with dementia (PwD) at a post-diagnosis level concerns the spousal relationship between the PwD and the spousal caregiver. The quality of marital or spousal relationship has been previously studied through the reported level of intimacy prior and after the onset of dementia (Morris, Morris & Britton, 1988). More recent research has explored the role of commitment in the marital relationship in early-stage dementia (Davies, 2011). Moreover, previous research has focused on the opinions of caregivers and neglect PwD (Braun et al., 2009). Therefore, the aim of this study is to explore the most important changes that dementia and caregiving cause to the spousal relationship for both PwD and caregivers. Another aim of this study is to expand findings about intimacy and commitment in dementia spouses to more areas, such as to sexual satisfaction, social life and contacts and everyday life activities. Data from semi-structured qualitative interviews with PwD and caregivers will be analysed with thematic analysis. The findings do not only reveal relationship changes after dementia diagnosis and their importance for both participant groups, but also provide useful information about the necessity of balance in the dyadic assessment when developing interventions.

PO1.78. Problem-Solving Technique (PST) group for caregivers of people with dementia in Israel

KAPLAN-REVAH Shelly, FIXMAN Mor, GROFMAN Valeria, SHEFET Daphna

Treatment of caregivers of people with dementia contributes to the well-being of both caregivers and patients, and is nowadays considered a mainstay of dementia management. Problem solving technique (PST) is a structured approach to mental and behavioral conditions, which has been adapted to dementia caregivers by the Reitman Center for Alzheimer's Support and Training in Toronto, Canada (i.e. CARERS program). The program is administered in small short-term groups by two professional instructors, and is based on teaching a structured model of problem solving, followed by role playing with a simulated patient (a trained actor). It has been proven effective in improving carers' caregiving competence, coping, burden, and perceived stress (Chiu et al, International Psychogeriatrics 2015).

Two years ago, a team from the Reitman Center administered a course of PST training for geriatric clinics in Israel. So far, our geriatric clinic is the first and only clinic in the country to implement the PST caregivers support groups.

We intend to illustrate through vignettes from our groups how the PST model works in enhancing communication skills, self-efficacy and coping. We shall note how cultural dissimilarities between Canada and Israel, two very different societies, influence the application of the model. Furthermore, our experience with various group models has taught us to best match a caregiver to the appropriate group by his or her character, ego strength and spouse's condition. We will share those insights during our presentation.

The registration to the ADI Berlin conference is with the assistance and blessing of Professor Joel Sadavoy, head of the Reitman Center for Alzheimer's Support and Training in Toronto.

PO1.79. Innovative psycho-dynamic group therapy for caregivers of people with dementia

FIXMAN Mor, SHEFET Daphna

Support groups for caregivers of people with dementia are fundamental for the well-being of both caregivers and patients, and are considered the mainstay of treatment in most countries today. There are many possible models, but as far as we know, all models are based on either emotional support or behavioral techniques (e.g. problem solving technique).

We present an innovative model of group therapy for spouses of people with dementia in psychodynamic approach. This model is the result of 5 years’ experience and exploration in our geriatric psychiatry outpatient clinic. The current group has been active for two years, and consists of bi-monthly sessions with ten spouses, directed by a clinical psychologist. Similar to conventional psycho-dynamic group therapy, work is carried out by interpretations of unconscious parts and of group dynamics, leading to integration and mutation. During the years and through this process, the group has moved from "technical" issues to deep work of mourning, allowing the members to acknowledge their grief while reclaiming active lives alongside the dementia of their spouse.  

Through vignettes from the current group, we will show how this work is achieved. To our knowledge, this is the first model of psycho-dynamic group therapy for caregivers of people with dementia. We encourage replication of the model in clinics elsewhere.

PO1.80. Non-drug interventions with people who have intellectual disability and dementia - International Summit on Intellectual Disabilities and Dementia

WATCHMAN Karen

Whilst there is a growing body of research focusing on non-drug (non-pharmacological) interventions with people who have dementia, the International Summit on Intellectual Disabilities and Dementia recognized that this does not include people who have both an intellectual disability and dementia. Innovative research is ongoing in Scotland to address this gap as part of a three-year implementation grant from the Alzheimer’s Society, UK. In this participatory action research, cycle 1 will include implementation of non-drug interventions with approximately 10 participants with an intellectual disability in the early stage of cognitive change. Cycle 2 extends the implementation to an additional group of participants experiencing advanced dementia. Each intervention will be unique to the individual and agreed in advance as part of a ‘goal setting’ exercise. Collaboration with co-researchers who have an intellectual disability is key to this inclusive and innovative project. Co-researchers are involved in photovoice methodology (using photography as method of data collection), on the study advisory panel and in staff recruitment. This research addresses points of consensus at the international summit: that peer support should be recognized for people with intellectual disability affected by dementia, and the importance of individualized post-diagnostic support. It is consistent with Commitment 15 the 3rd dementia strategy in Scotland, 2017-2020, by developing evidence to support locally informed services, workforce knowledge and post-diagnostic pathways for groups with protected characteristics (intellectual disability) and a diagnosis of dementia. This is one of a series of posters addressing outcomes/outputs of an international summit on dementia and intellectual disability held in Scotland in October 2016.  The Summit was composed of professional, family and self-advocate representatives of international and national organizations from twelve countries with an interest in issues affecting adults with intellectual disability and dementia.

PO1.81 Post diagnostic supports for people with dementia and intellectual disability in Germany: International Summit on Intellectual Disabilities and Dementia

GAERTNER Claudia

People with intellectual disability affected by dementia as well as their families and carers face a number of challenges from the time of early recognition of Alzheimer’s disease or related conditions to its eventual outcome. These challenges range from an accurate diagnosis and appropriate medical treatment to interpreting behavior and changes in communication as well as the need for day structure and adapting the environment.

The Theodor Fliedner Foundation, a social service provider in the fields of intellectual disabilities, mental illness and care for the elderly has begun a pilot project to implement the “Ageing in place” concept in their group homes for people with intellectual disabilities. Based on the Summit’s recommendation concerning community dementia-capable care practices and post-diagnostic support, the aim of the project is to ensure that people with an intellectual disability and a dementia have the opportunity to stay at their familiar surroundings as dementia progresses. Environmental modifications, staff training, and multidisciplinary team conferences all ensure dementia sensitive support and assistance via different psychosocial interventions including life-story work along with a compassionate and dignified attitude.

This is one of a series of posters addressing outcomes/outputs of an international summit on dementia and intellectual disability held in Scotland in October 2016.  The Summit was composed of professional, family and self-advocate representatives of international and national organizations from twelve countries with an interest in issues affecting adults with intellectual disability and dementia.

PO1.82 International implementation challenges of the Summit recommendations: International Summit on Intellectual Disabilities and Dementia.

SPLAINE Michael

The World Health Organization recognized the specific health and social care issues faced by people with an intellectual disability and their families affected by dementia, in particular adults with Down syndrome who are at high risk of Alzheimer’s disease at a significantly younger age. The 2016 International Summit on Intellectual Disabilities and Dementia tackled a number of public policy and practice issues that can have a significant effect on local and national plans and services development. To help with the translation of key strategies and recommendations in to action at various levels, the poster highlights three national or sub national level policy actions that are being taken to address the growing number and special life and support issues of persons with intellectual disability affected by dementia. Content will address how the recommendations can be implemented and infused into public policy to enable people with intellectual disability and dementia be part of the target groups for public awareness and services provision. This has been developed from the Summit’s recommendations related to national dementia strategies or plans, which drew from an Alzheimer Disease International study of 25 government/national Alzheimer’s/dementia plans. This is one of a series of posters addressing outcomes/outputs of an international summit on dementia and intellectual disability held in Scotland in October 2016.  The Summit was composed of professional, family and self-advocate representatives of international and national organizations from twelve countries with an interest in issues affecting adults with intellectual disability and dementia.

PO1.83. Involving people with dementia in heritage sites: The Dementia Sensory Palaces project

INNES Anthea, HARAGALOVA Jana, KLUG Kim, SCHOLAR Helen, SHARMA Monika

This paper provides an exemplar of an innovative approach to promoting access to national heritage sites for people with dementia. We will present findings for the first time to a European audience from the evaluation of the Dementia Sensory Palaces programme. This is a programme designed to promote access to two national heritage sites in the UK; Hampton Court and Kew Palace.  The programme is in keeping with national dementia plans and strategies to promote an inclusive approach for people with dementia namely Hampton Court and Kew Palaces.

Findings from the first 6 months of work of this ongoing evaluation project commencing will be presented. Our methods include interviews, observations and questionnaires.

The presentation will discuss the experiences of those living with dementia attending the sessions and in particular the role of the heritage site. This dementia sensory programme at Historic Royal Palaces demonstrates that it is possible to be inclusive in environments that might be seen to be less accessible due to the age of the building and the nature of architectural design of the period. Our work demonstrates that participating in a programme designed to promote social, intellectual and sensory stimulation is possible and highly valued by facilitators of the programme as well as people with dementia and their family members who participate. The project demonstrates that it is possible to adapt physical environments to not only accommodate those living with dementia, but to provide a welcoming and stimulating experience. This approach could be developed to other heritage sites in other countries and we will share with delegates elements of the model of the programme that could be adapted by others to enable people with dementia to participate in heritage based activities and environments in other cultural and heritage areas.

PO1.84. Community minded technology that’s helping people to look out for their neighbours – Purple Alert

COOPER Nicola, PETILLO Tommy

In 2016 Alzheimer Scotland published The Technology Charter for people living with dementia in Scotland, and a companion leaflet ‘Dementia and Technology’, putting technology firmly on the agenda for people living with dementia today.

Conversations about technology are now being embedded in post diagnostic support meetings and care plans, and demand for technology is escalating, demonstrating an acceptance of it’s potential and a trust in it’s benefits.

Top of the list in the challenges identified by people living with dementia is the desire to maintain independence for as long as possible and to continue to get out and about safely.

There are a number of technologies that can help with this e.g. personal alarms, door sensors and GPS devices, however they rely on wearable technology or interventions in the home, and both options can be expensive and/or intrusive.

We wondered if there could be a lighter touch service, with a grass roots approach that would also help to support people with dementia to stay safe while out and about.

Our answer to this is Purple Alert, a service designed by a co-production group, which included Alzheimer Scotland staff, service users – people living with dementia and carers, the National Dementia Carers Action Network, Police Scotland, Social Work, Dementia Friends Scotland, Health and Social Care Partnerships and telecare services.

Purple Alert is a missing persons service for people with dementia that allows the community to help if someone with dementia is missing. The service uses an app to share information at the point of crisis and allows for eyes and ears on the ground immediately helping with the search.

200 people were involved in a live pre-launch test of the app in April 2017, including representatives from Police Scotland Missing Persons. It is the only service of it’s kind in the UK and will launch in summer 2017.

PO1.85. The first dementia friendly community in France with Bistrot Mémoire

DONNIO Isabelle, SIPOS Irène

Since 2004, in Rennes, Bistrot Memoire welcomes people living with dementia and careers, every week, in a café, sharing good times and conversations. “Living well with dementia” is increasingly a reality thanks to such social innovations. Continuing to change the paradigm of dementia care is the new Bistrot Mémoire’s challenge with the implementation of the first Dementia Friendly Community in France. 

The preceding years have been marked by an emphasis on the development of services to rehabilitate people living with dementia. Awareness of the need to re-think the question of Alzheimer with people living with cognitive impairment, from the beginning until the end of their journey, is recent. French public policies are just beginning to be involved in the way of giving a real place and a voice to people living with such disabilities.

We have been impressed by experiences discovered in European countries. Inspired by meetings and encouraged by EFID, we decided to start the first dementia friendly community in France.

We began to raise awareness cultural partners such as the museums to welcome people living with dementia in 2012. Now we convinced the town mayor of the interest of the project and financers to give us some means.

We actually work with all of the local forces (people directly concerned, professionals, volunteers, in cultural and economics fields …) to persuade them of the need and the interest to change our image of Alzheimer disease, the importance of a welcoming community. Next step is a seminar where a plan of actions will be collectively designed. We set up two expression groups of people with dementia, especially for young people. Some are already part of our board and participate in the projects.

We hope the initiative will swarm around all over France.

PO1.86. Citizenship awareness: the importance of recognition, respect and redistribution for citizens living with dementia

NEDLUND Ann-Charlotte, TAGHIZADEH LARSSON Annika

Citizenship is a central concept in the idea of a good society. The concept encompasses the cultural, social, political, health-related and technical aspects of ageing in a changing society. Citizenship encompasses the meaning and practice of belonging to a society and its various policy areas. An important part of claiming full citizenship is to be acknowledged as an independent individual with rights and also as an actor in the society. Citizenship becomes constructed through a dynamic process that involves various actors. Through this process citizens with dementia, as targets of welfare-state policies, becomes socially categorized and positioned in an ambivalent way related to different attributes as e.g. disease, age, gender, background.  To study and problematize dementia and situations for people with a dementia diagnosis from a citizenship perspective has received increasing attention during the last decade. This paper critically discusses the “making” of people living with dementia as citizen targets. The paper has a comparative approach and draws on empirical examples from interviews with actors working in four Swedish welfare institutions and how they encounter citizens with dementia and furthermore how their practice relates to politics of redistribution, recognition and respect in that could end up excluding and/or including groups in society. The paper aims to further broaden the debate on how to enable citizenship and social inclusion for people with dementia. It contributes to research on living with dementia by critically analysing how perspectives on citizenship advance the thinking of being a citizen with dementia and how to challenge unfair practices, not least since justice requires recognition, respectandredistribution.

PO1.87. Association of light exposure intensity with the quality of sleep and behavioral symptoms in Chinese persons with Alzheimer's disease

LUK Wai Ming Albert

Background: Most studies reported light therapy could improve sleep disturbance in older persons with Alzheimer's disease (AD). No previous study about the effect of natural light exposure on sleep quality and behavioral symptoms in chinese AD population has been reported.

Objectives: This retrospective cross-sectional observational study aimed to investigate the association of light exposure intensity with the quality of sleep and behavioral symptoms in Chinese people with AD.

Methods: 60 males and 143 female diagnosed with AD with mean age of 81.6 years were recruited from Memory clinic of Queen Mary Hospital in Hong Kong, from July 2014 to December 2014. Beside collecting socio-demographic and co-morbid diseases information. Scores of Abbreviated Mental Test (AMT), Neuropsychiatric Inventory (NPI), Geriatric Depression Scale (GDS-15), Quality of life scales of both patients and caregivers (QOL-AD) were assessed. Sleep qualities and light exposure intensity (lux) were recorded and evaluated by Pittsburgh Sleep Quality Index (PSQI) and calibrated light meters.

Findings: Global PSQI score was significantly associated with morning and afternoon outdoor light exposure (r = -0.634 and -0.466). Both total and mean light exposure showed strong significant negative correlation with global PSQI score (r = -0.769 and -0.769). Gender identity showed significant correlation with global PSQI score (r = 0.034).  Global PSQI score was significantly associated with NPI total score (r = 0.261, p<0.001).  In multivariate analyses, global PSQI score was highly independent associated with the total light exposure (p=0.000), and significantly associated with the NPI score and gender (p = 0.011 and 0.021) after adjusting for potential confounders.

Conclusions: Intensity of natural light exposure was related to good sleep quality and lesser episode of behavioral symptoms in older chinese with Alzheimer’s disease aged 65 and above in Hong Kong. Hence, daily outdoor light exposure is highly recommended for persons with Alzheimer's disease.

PO1.88. Our Dementia, Our Voice: Working together to effect change

CAMPBELL Zoe, MURRAY Matt, OLIVER Keith, TOOKE Jane, KANE Martina, TERRY Gavin, HUTCHINGS Rachel, RIGBY Alice

 Over the past five years Alzheimer’s Society has increased the amount of engagement and co-production work delivered in partnership with people affected by dementia. This includes: setting up a network of over 60 Service User Review Panels (SURPs); developing our pioneering Research Network; and in the past 12 months delivering two major pieces of policy and campaigning work. Through the presentation of three case-studies we will share our first-hand experiences of delivering this work and plans for our new Strategy.

Following a successful pilot between 2010 and 2011 (Tooke, 2013) , we expanded our SURPs across England, Wales & Northern Ireland. Groups of up to 8 people with dementia (including those from seldom heard groups) meet once a month over a 12-month period, choosing the topics they want to discuss and review. This ensures that the contributions people make are personalised around the interests and needs of the group members. Over 250 topics have been discussed across a wide breadth of subjects including both Alzheimer’s Society and external services, information sheets, products and other initiatives which all benefit from the direct input from people with dementia. In December 2016 a unique conference bringing together SURPs from across the Network in person and via video conference launched a review. We will share the results and future plans.

Our campaigning and policy work now incorporates principles of co-production, demonstrated in the review and drafting of new ‘Dementia Statements’ and our State of the Nation consultation project work. Pushing beyond traditional evidence gathering (discussions, surveys and interviews), people affected by dementia reviewed existing statements, drafted new statements and launched them at our Conference. Our innovative survey of almost 1,000 people with dementia, delivered with support of trained volunteers, successfully challenged perceptions of how people with dementia can participate in social research.

PO1.89. Side by Side

CAMPBELL Zoe

In 2014 the Alzheimer’s Society started a 3-year project to develop a service, Side by Side, which would:

  • Ensure people with dementia are not excluded and remain active citizens.
  • Combat loneliness.
  • Reduce stigma and contribute toward Dementia Friendly Communities.

The service supports people with dementia to identify personal outcomes, the activity and services required to realise these and places volunteers with them to achieve these things

An external evaluation conducted by the National Council for Voluntary Organisations has shown that Side by Side:

  • Has increased peoples’ social networks, with many users having more and/or better interaction with others.
  • Is attractive to male users. There is an overall over-representation of male users (according to national dementia statistics)
  • Has enabled some people to feel more in control.
  • Has helped people with dementia to meet new people or catch up with old friends
  • Is enabling users to do things they enjoy and for some, to try new things
  • Has attracted a higher proportion of volunteers aged under 25 (compared to Society volunteers overall).
  • Increased volunteers understanding of dementia, which they have shared with others.
  • Has encouraged volunteers to become more active supporters of the Society:

 “…I’ve found new things to do…bird watching, going to cricket matches, steam trains... Side By Side gives me the opportunity to continue to enjoy life.”

 “…had increased her father’s confidence and that he was now undertaking a computer course…this would not have happened without Side by Side”

“The volunteers are taking him out [to] parks he hasn’t been to in 40 years. He’s bought himself a season ticket for cricket. He attributes that to his volunteer.”

The emerging delivery model for Side by Side will be replicable across countries. The Society would be willing to engage with colleagues from across Europe to share learning.

PO1.90. Creating a dementia-friendly generation

TREE Philippa

Nearly a third of young people in the UK know someone with dementia. As the population ages and the number of people living with dementia increases, more and more children are likely to be affected through family and friends.

By educating people about dementia we can help reduce stigma and increase understanding. If we start this education at a young age, we can help to create a dementia-friendly generation; a generation who are not afraid to speak about dementia, who understand how they can help, and make people affected by dementia feel involved in their communities.

We have created several resources to support children and young people (ages 5-25) in the UK to learn more about dementia, and to turn that understanding into action.

Teaching packs for primary and secondary schools, key stage one, two, three and four. All lesson plans are accredited by the PSHE Association (England) & CCEA (Northern Ireland) so they can contribute towards the school’s national curriculum in England, Wales and Northern Ireland

Dementia Friends is available for anyone aged 5+. We have adapted our Dementia Friends resources so people of all ages can learn about what it is like to live with dementia and how they can contribute to making our communities more dementia-friendly

We work with The Scouts Association, Girlguiding UK, National Citizen Service, Cadets and others to raise awareness about dementia and encourage action in the community.

We have free factsheets for ‘Explaining dementia to children and young people’ on our website.

Excitingly our latest resource will be available for use worldwide. We are currently developing a global youth animation which will not only increase people’s understanding of dementia, but will help to engage more young people with Dementia Friends. This animation can contribute to creating a worldwide societal change for those living with and affected by dementia.

PO1.91. Heart sound - how sound and radio can help to improve the relationship between people with dementia and their carers

SCHÖN Christine

The ear is a very sensitive organ: In the womb hearing is the first sense we develop and from this point forward our ears can never be closed again. Sound leads directly into an emotion. When we hear some typical sounds like cheerfully screaming children, splashing water and a light breeze - we immediately feel the summer. And collective listening is a very familiar thing for today’s elderly: in their youth radio was the main medium - families and friends came together to listen to entertainment programmes, sportscasts and concerts on the radio.

Carers and relatives of people with dementia often face the challenge of getting into emotional contact with those who often live in their own world. That is why the major concern of our sound projects is to strengthen the relationship between people with dementia and their carers.

Hörzeit – Radio wie früher (“Listening Time - Radio like in the old days”) is a worldwide unique radio program especially made for people with dementia. The non-profit sound-based web portal Herzton (“Heart Sound”) helps to activate people with dementia individually using all acoustic means: e.g. self-sung songs, dialects, interviews with contemporary witnesses and easy accessible soundscapes. They will be recorded and produced by sensitive sound artists and musicians.

Christine Schön has worked as a radio writer and host for German public radio stations for more than 15 years. She is also a sound artist and worked as a project manager for cultural projects (e.g. for Berlin University of the Arts). After being confronted with dementia in her own family she decided to use her experiences to support other relatives and carers and created Hörzeit and Herzton which both she edits and presents. She is the founder of the non-profit association Herzton – Mediale Begegnungsräume für Generationen e.V. (“Heart Sound – meeting places for generations”).

 

 
 

Last Updated: Tuesday 18 July 2017

 

 
  • Acknowledgements

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

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