"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

TY - JOUR

T1 - "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

T2 - Stakeholder perspectives

AU - Rapaport, Penny

AU - Burton, Alexandra

AU - Leverton, Monica

AU - Herat-Gunaratne, Ruminda

AU - Beresford-Dent, Jules

AU - Lord, Kathryn

AU - Downs, Murna

AU - Boex, Sue

AU - Horsley, Rossana

AU - Giebel, Clarissa

AU - Cooper, Claudia

N1 - Funding Information: This work was supported by the Alzheimer’s Society (UK) and was carried out within the UCL Alzheimer’s Society Centre of Excellence for Independence at home, NIDUS (New Interventions in Dementia Study) programme (Alzheimer’s Society Centre of Excellence grant 330). This project is also part-funded funded by The National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC). The views expressed here are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. The funding bodies did not contribute to the design of the study and collection, analysis, and interpretation of data or in writing the manuscript. Publisher Copyright: © 2020 The Author(s).

PY - 2020/1/3

Y1 - 2020/1/3

N2 - 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.

AB - 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.

KW - Dementia

KW - Functioning

KW - Independence

KW - Psychosocial intervention

KW - Qualitative

KW - Support systems

UR - http://www.scopus.com/inward/record.url?scp=85077479969&partnerID=8YFLogxK

U2 - 10.1186/s12877-019-1406-6

DO - 10.1186/s12877-019-1406-6

M3 - Review article

C2 - 31900113

AN - SCOPUS:85077479969

SN - 1471-2318

VL - 20

JO - BMC Geriatrics

JF - BMC Geriatrics

IS - 1

M1 - 5

ER -