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P2. Carers of people with dementia

Detailed programme and abstracts

P2.1. RHAPSODY, a web-based multimedia, information, and skill-building program for carers of people with young-onset dementia in the Netherlands

PEETOOM Kirsten1, DAEMEN Maud1, BAKKER Christian2, GROOT ZWAAFTINK Rob3, OOSTIJEN Andrea3, KOOPMANS Raymond2, VERHEY Frans1, DE VUGT Marjolein1

1Department of Psychiatry and Neuropsychology / Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands, 2Radboud University Medical Centre, Radboud, Department of Primary and Community care, Nijmegen, Netherlands, 3Alzheimer Netherlands, Amersfoort, Netherlands

Young-onset dementia, with a symptom onset below age 65, has a profound impact on the person with dementia, and on the health and quality of life of family members as well. This is caused amongst others by behavioral changes, changes in family relationships, difficulties at work and financial problems. 

The JPND funded RHAPSODY project aimed to gain insight in current policy and information provision regarding young-onset dementia in six European countries. Key results were a need for more information among carers on young-onset dementia and available care, but also a need for practical advice on how to cope with the caregiving situation and finances.  

This resulted in the development and evaluation of a German, French, English and Portuguese version of a web‐based multimedia, information, and skill‐building program for carers of people with young-onset dementia. The program includes thematic modules that consist of written and video content, case‐studies, presentations from professionals, and downloadable materials. A pilot study with 61 caregivers showed good acceptability and feasibility of the program.  

Based on these positive results, the program is currently translated and adapted to the Dutch context, in close collaboration with Alzheimer Netherlands, the Dutch Young-onset Dementia Knowledge Center, experts, and end-users. This includes creating new video material with presentations from professionals, in which they among others explain the medical background of young-onset dementia and reflect upon experiences from Dutch informal carers. Also written content on available care and support in the Netherlands is newly developed. The program will be incorporated on and evaluated by users in the summer of 2020. 

P2.2. Strategies to manage refusals of care: a comparison of family carer and care home staff experiences

BACKHOUSE Tamara1, MIOSHI Eneida1, JEON Yun-Hee2, KILLETT Anne1

1University of East Anglia, Norwich, United Kingdom, 2University of Sydney, Sydney, Australia

Background: People in the later stages of dementia often need assistance with their personal care. Due to factors such as difficulties understanding, discomfort, or the caregiver approach, some people with dementia will refuse assistance with their care. Little is known about how family carers and care home staff cope with refusals of care on a daily basis.

Aim: To identify the strategies used for managing refusals of care in dementia in family and care home settings.

Methods: We conducted qualitative, face-to-face, semi-structured interviews with 20 family carers of community dwelling people with dementia and 12 care home staff who cared for people with dementia. Interviews were analysed using inductive qualitative content analysis.

Findings: The analysis generated four key themes: acting to prevent refusals occurring; communication strategies; leaving care undone or adapting care; support and safety. To prevent refusals family carers assessed the person’s mood before deciding to start a task, whereas care home staff were more likely to look for unmet needs or distract the person to get care completed. Both family carers and care home staff used encouragement and explanations to coax people with dementia through personal care interactions. Family carers reported showing their emotions, while care home staff simplified the sound of the task when talking to the person. Both groups would leave care undone or offer reduced care when faced with determined refusals. Family carers had far less support to manage refusals than care home staff who drew heavily on the staff team around them.

Conclusion: Our findings demonstrate the different experiences and skills of family and care-home caregivers when coping with refusals of care. Learning from each context can enable us to gain a comprehensive overview of strategies in use, some of which could be transferred to the other setting to aid better management.

P2.3. Portrait of Carers and Dementia perceptions in France : evidence from Elders 4 (survey on longevity, dependency, risk and support)


Mederic Alzheimer Fundation, Paris, France

Who are the carers? What are their difficulties? How do they define dementia? Do non-carers perceptions differ from carers’ ones? All these questions drove Mederic Alzheimer Foundation’s new survey: Elders 4. Elders 4 inherits from 3 waves of analysis of dependency risk perceptions and informal care provision. This fourth wave aims at focusing on dementia perceptions; this focus will result in a barometer describing dementia perceptions and how these perceptions vary with having and helping relatives with dementia.

At the time this abstract is being written, the survey is still in the field, but we can already give some information. The Elders 4 protocol relies on two questionnaires: one for the main respondent and the other for his or her partner when he/she has one. This protocol allows us to enter households and gain a better understanding of how households organise themselves to face relatives’ care needs; in particular, relatives with dementia.

10 000 households were selected to receive Elders4’s questionnaires and ensure the representativeness of the final sample to the French population aged between 40 and 79 years old. We expect around 7 500 households to answer but the return rate might be lowered dued to the covid-19 crisis. Nevertheless, we have already received 6 500 households’ answers. As an illustration, the following items will be part of our analysis (translated from French):

  • If you reach age 80, how likely are you to live with dementia?
  • In your opinion, are you enough informed about dementia?
  • Since you learned that your relative has dementia, how has your relationship with him/her evolved?

These questions will be analysed with regards to the household’s informal care provision and dementia ‘experience’.

The presentation will produce an overview of the most salient facts highlighted in this very unique dataset.

P2.4. Comparing carer burden in family carers of people with and without dementia: An Irish national dataset

TEAHAN Áine1, LAFFERTY Attracta2, CULLINAN John3, FEALY Gerard4, O'SHEA Eamon1

1Centre for Economic and Social Research on Dementia, NUI Galway, Galway, Ireland, 2CAREWELL Project, University College Dublin, Dublin, Ireland, 3School of Business and Economics, NUI Galway, Galway, Ireland, 4School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland

Background: Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups, especially among those caring for people with and without dementia. This study aimed to examine differences in carer burden in a sample of family carers providing care for people with and without dementia.

Methods: Secondary data analysis was conducted on an Irish national cross-sectional dataset of 2,311 family carers of older people receiving a government funded Carer’s Allowance. Multivariable ordered logistic regression was used to analyse four levels of carer burden (low; mild; moderate; high). The main independent variable of interest was diagnosis of dementia, while controls included a range of variables relating to the person being cared for, the family carer, and the context of care.

Results: One-fifth of survey respondents cared for a person with dementia. Our analysis identified a range of variables that were significantly associated with carer burden. These variables included dementia diagnosis, dependency level, education, residence, co-residence and perceived support. Compared with family carers of people without dementia, family carers of people with dementia were significantly less likely to report low or mild carer burden (-6.95 ppts and -3.64 ppts respectively) and significantly more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts respectively).

Conclusion: To conclude, family carers of people with dementia are likely to experience higher levels of burden than those caring for people without dementia. Caring is not a homogenous task, so policy makers and support systems need to respond in different ways to different caring situations. In addition, while previous research points to dementia symptomology as the main contributor to carer burden, our findings suggest that wider social factors also play a significant role.

P2.5. A qualitative study of the everyday life and well-being among young relatives of parents with dementia

BJØRNSKOV Stina, NIELSEN Marianne Lyngmose, GREGERSEN Rikke

VIA University College, Aarhus, Denmark

Background: In Denmark, approximately 3000 persons aged 30 or below have a parent with dementia. So far, efforts to support young people with parents with dementia have been sparse and up until recently, they have constituted an overlooked group in the Danish welfare system.

Previous research has shown that adult relatives are severely affected regarding both their everyday life and well-being. Experiences from practice and preliminary research suggest that young relatives may face similar challenges. However, knowledge on these topics is inadequate.

Aim: To explore how 18-30 year-olds experience their everyday life with a parent with dementia and how the life situation affects the youngster’s engagement in leisure activities, social life, education and work. The long-term goal is to contribute to improve preventative efforts and support provided by professional caregivers to this marginalized group.

Methods: In May to August 2018, a qualitative interview study among relatives aged 18 to 30 years was performed (7 Females, 4 Males). Participants were recruited through dementia associations, social media and professional caregivers. Qualitative data were obtained by 11 semi-structured interviews using a themed interview guide. Data were analyzed and interpreted in a phenomenological-hermeneutic perspective.

Results: The situation of the young relatives was described by three main themes: Concerns, Change of roles and Responsibility/Chores. The young relative's conditions within the three themes had direct consequences for their daily lives in relation to, for example, their education, work, social life and opportunities to take care of themselves. Activities usually related to adolescence and early adulthood were often downgraded due to their parents' dementia.

Conclusion: The everyday lives of the young relatives regarding education, work, social relationships etc. were heavily affected by the circumstances that accompany their parents' dementia diagnosis.



Last Updated: Wednesday 23 September 2020


  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche