"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*, Alexandra Burton, Monica Leverton, Ruminda Herat-Gunaratne, Jules Beresford-Dent, Kathryn Lord, Murna Downs, Sue Boex, Rossana Horsley, Clarissa Giebel, Claudia Cooper

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

35 Citations (Scopus)

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.

Original languageEnglish
Article number5
JournalBMC Geriatrics
Volume20
Issue number1
DOIs
Publication statusPublished - 3 Jan 2020

Keywords

  • Dementia
  • Functioning
  • Independence
  • Psychosocial intervention
  • Qualitative
  • Support systems

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