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P3. Needs and experiences of people with dementia and their carers I

Detailed programme, abstracts and presentations

P3.1. Needs of young people with dementia: views and experiences of people with young onset dementia and families


University of Nottingham, Nottingham, United Kingdom

Background: People with young onset dementia (YOD) often have different needs from older people with dementia but age appropriate local support is not always available. Our study entitled ‘Needs of young people with dementia’ aimed to explore the needs, unmet needs and their preferred type of support from the perspectives of younger people with dementia and their families.

Methods: The study comprised three stages: (1) Focus groups and interviews with young people with dementia (n=20) and their families (n=21), (2) UK-wide survey, and (3) consensus meeting. The qualitative data from focus groups and interviews were analysed to develop the survey. Thematic analysis of qualitative data and descriptive analysis of the survey were brought together to produce a lay summary report for the consensus meeting.

Results: Thematic analysis has highlighted: a ‘postcode lottery’ as availability of dementia services appropriate for younger people varied greatly depending on their locality, a lack of knowledge of YOD among local doctors leading to delayed diagnosis of dementia and a lack of sign-posting to appropriate post diagnostic support, and a lack of up-to-date YOD specific online information. Young people with dementia stated maintaining their ability to go out independently and to look after their home environment was particularly important. Difficult experiences of reduced social networks and the impact on family/spouse relationships were also highlighted. Finally, all participants who had access to peer-support groups emphasised the essentiality of ‘knowing you are not on your own’.

Conclusion: Experience of stigma and social isolation is not uncommon among young people with dementia. In addition to developing centralised guidelines and resources for timely YOD diagnosis and post-diagnosis support, strengthening peer-support networks and providing longer-term carer support was regarded as crucial to support their independence and to promote the social health of young people living with dementia and their families.

P3.2. Acces to formal care in dementia: The international Actifcare study

WOODS Bob1, VERHEY Frans2, DE VUGT Marjolein2, WOLFS Claire2, KERPERSHOEK Liselotte2, On behalf of Actifcare study team

1Dementia Services Development Centre Wales, Bangor, United Kingdom, 2Maastrich University, Alzheimer Centrum Limburg, Maastricht, Netherlands

Introduction: Many individuals are often not receiving services of the type, quality and timing that they need. The international Actifcare study aimed to better understand the reasons for inequalities in access to healthcare. At the macro level, we assessed and compared health care systems giving accessto formal home care across Europe using literature review, expert consultation and focus groups. At the individual level, performeda cohort study in 8 EU countries in order to examine the predisposing and enabling factors for access to formal care, needs and quality of life in community dwelling dementia patients and their carers. This was combined with a cost–consequences analysis, based on the clinical and economic data. Based on these empirical findings, we formulated recommendations to improve access to formal care across Europe.

Results: Facilitators for formal care use were a lower score on instrumental and daily activities of life, the person with dementia living alone, having a higher educated informal carer, and the informal carer visiting a support group. Older and higher educated people with dementia and younger carers found access to home personal care easier, and lower educated carers were more likely to be admitted sooner. These findings indicate inequity in access to care. Qualitative results showed that there was a lack of information about available services, and that having a key contact person was regarded as crucial. The number of unmet needs was associated to a lower quality of life, but not to costs. Thus, untimely access to care does not impact short-term costs but reduces quality of life. Future research should assess the longer-term effects as well as focus on strategies to prevent unmet needs.

P3.3. Caring for relatives with agitation at home: A qualitative study of positive coping strategies

HOE Juanita1, LIVINGSTON Gill2, JESNICK Leah2, TURNER Rebecca2, LEAVEY Gerry3

1City, University of London, London, United Kingdom, 2UCL, London, United Kingdom, 3Ulster University, Coleraine, United Kingdom

Background: In the middle and later stages of the illness, over 50% of people with dementia will experience agitation, including repetitive speech, sounds and movements, verbal abuse, shouting, restlessness and aggression.  Agitation is associated with family carer distress resulting in the breakdown of care and care-home admission.  Trials of psychological interventions for reducing agitation in people with dementia living at home have been unsuccessful.  Our aim was to identify successful strategies of family carers with relatives with dementia and agitation living at home, to inform future care interventions.

Methods: We held a focus group with participants from the Alzheimer’s Society Research Network, who suggested topics for inclusion in the individual interview schedule.  We then conducted in-depth individual interviews with 18 family carers.  All were caring for a relative with dementia and symptoms of agitation.  We asked the carers to talk about their experiences and explored the agitation (type, severity, duration, provocation factors and reaction) and the effectiveness of strategies used.  We used thematic analysis to identify emerging themes.

Results: Carers described initial surprise and then acceptance that agitation is a dementia symptom and learned to respond flexibly.  Their strategies encompassed: prevention of agitation by familiar routine; reduction of agitation by addressing underlying causes and using distraction; preventing the situation getting worse through enabling risk, not arguing; and control of their emotional responses by ensuring their relative’s safety then walking away, carving out some time for themselves and using family and services for emotional and practical help.

Conclusions: Overall family carers devised, learnt and implemented effective strategies to reduce or avoid agitated behaviour, and this enabled them to continue caring for their relative at home for longer.  These interviews provide valuable information on potentially helpful strategies that can be manualised and tested in future randomised controlled trials for clinical effectiveness.

P3.4. Dat ben ik (This is me) – the app conversation starter based on good memories


1Alzheimer Nederland, Amersfoort, Netherlands, 2Proxcellence, Den Bosch, Netherlands

Starting a conversation with someone who has dementia can be difficult sometimes. How do you connect with someone who struggles to answer all kinds of questions because the memories are too hard to reach? The app “Dat ben ik” (This is me), for iOS and Android, originates from a grandchild’s wish to talk to his grandpa. The app can be used as a conversation starter, by reminisce on good memories. It can be filled with personal stories using pictures, text, video and audio. The laughter of a grandchild, the holiday pictures of 1950 or the sound of the balletclass can all bring back memories and makes it easier to connect.

The app is being developed in close contact with caregivers, relatives and health professionals. “This is me” is a collaboration of Alzheimer Nederland, SAP and Proxcellence, in order to combine substantive and technological knowledge.  

The presentation will show the process of development: how the idea of a grandchild trying to reach his grandfather was embraced by three organisations to start developing.

P3.5. Thinking ahead: Older carers' declining health and fears about the future


FHSCE, St George's University of London and Kingston University, London, United Kingdom

As populations age, numbers of unpaid, often family carers are growing. Data from the United Kingdom (UK) show that numbers of carers in general have increased by approximately 11% since 2001, but numbers of older carers have grown by over 35% over the same period. The proportion of carers aged over 85 years is increasing particularly rapidly. Many of these older carers are supporting someone living with dementia.   

We undertook a two-phase qualitative focus group study including 17 older carer (aged 70+ years) participants of people living with dementia in London, UK where we asked the participants to describe their experiences as older carers. Focus groups were audio recorded, transcribed and analysed thematically.

In the first phase, carers emphasised their love for the care recipients and the need to remain positive. They highlighted a range of challenges and satisfactions in their role. Satisfactions included a sense of achievement and personal growth whilst the challenges included tiredness, loneliness and difficulties in accessing support. Carers’ own declining health and concerns about what would happen to their loved ones if they died or were unable to care featured prominently. In the second phase, we asked carers to focus specifically on their concerns for the future.  Analysis here showed how anxiety about the future care of their loved ones negatively affected older carers’ well-being. It also identified how difficult they found it to broach the topic with the person they cared for, the wider family and with professionals. Those that had made practical plans for the future highlighted their enormous sense of relief. Carers here suggested the voluntary sector was ideally placed to provide carers with support in planning for the future. Many carers thought this support could best be provided in groups giving both peer support and support from trained volunteers and professionals.

P3.6. Caregivers’ beliefs about dementia: Findings from the IDEAL study

QUINN Catherine1, JONES Ian Rees2, MARTYR Anthony3, NELIS Sharon. M.3, MORRIS Robin G.4, CLARE Linda3

1Centre of Applied Dementia Studies, University of Bradford, Bradford, United Kingdom, 2Wales Institute for Social and Economic Research, Data and Methods, Cardiff University, Cardiff, United Kingdom, 3REACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter, Exeter, United Kingdom, 4King’s College London Institute of Psychiatry, Psychology and Neuroscience, London, United Kingdom

Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as dementia representations (DRs), as they try to make sense of the changes they are observing. A better understanding of caregivers’ DRs would enable healthcare professionals to provide more targeted support. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL), and caregiving stress. The participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. DRs were measured using questionnaire items covering: identity, cause, control, and timeline. Open-ended questions on identity and cause were analyzed using directed content analysis. Multivariate modelling was used to investigate associations between components of DRs and well-being, SwL, and caregiving stress. We found that almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress, were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. The findings indicate that healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.



Last Updated: Tuesday 10 December 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche