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. 2020 Jan 3;20(1):5.
doi: 10.1186/s12877-019-1406-6.

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

Penny Rapaport  1   2 , Alexandra Burton  3 , Monica Leverton  3 , Ruminda Herat-Gunaratne  3 , Jules Beresford-Dent  4 , Kathryn Lord  4 , Murna Downs  4 , Sue Boex  5 , Rossana Horsley  5 , Clarissa Giebel  6 , Claudia Cooper  3
Affiliations

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

Penny Rapaport et al. BMC Geriatr. .

Abstract

Background: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this.

Methods: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England.

Results: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk.

Discussion: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

Keywords: Dementia; Functioning; Independence; Psychosocial intervention; Qualitative; Support systems.

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Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. Prince M, Wimo A, Guerchet M, Ali G, Wu Y, Prina M. World Alzheimer Report 2015. The global impact of dementia. An analysis of prevalence, incidence, cost & trends. London: Alzheimer’s Disease International; 2015.
    1. World Health Organization . Dementia: a public health priority. Geneva: World Health Organization; 2012.
    1. van der Roest HG, Meiland FJ, Maroccini R, Comijs HC, Jonker C, Droes RM. Subjective needs of people with dementia: a review of the literature. Int Psychogeriatr. 2007;19(3):559–592. doi: 10.1017/S1041610206004716. - DOI - PubMed
    1. Lord K, Livingston G, Robertson S, Cooper C. How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study. BMC Geriatr. 2016;16(1):68. doi: 10.1186/s12877-016-0242-1. - DOI - PMC - PubMed
    1. Giebel CM, Sutcliffe C, Challis D. Hierarchical decline of the initiative and performance of complex activities of daily living in dementia. J Geriatr Psychiatry Neurol. 2017;30(2):96–103. doi: 10.1177/0891988716686835. - DOI - PubMed

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