PrepareD: helping families with dementia prepare for future care
Research type
Research Study
Full title
PrepareD: understanding and improving support to help people with dementia and their families prepare for future care
IRAS ID
252298
Contact name
Martin Knapp
Contact email
Sponsor organisation
London School of Economics and Political Science
Duration of Study in the UK
4 years, 11 months, 31 days
Research summary
Dementia is the leading cause of death in England and Wales, yet research shows that experiences in advanced illness and at end of life for people with dementia and their carers can be poor. Advance care planning (ACP) can enable people with dementia to have a say in their future care and has been associated with improved end of life outcomes and experiences. However, research shows that people with dementia are often reluctant to discuss advanced illness or end of life, or prefer to do so only informally with family members, and are reluctant to record their wishes in writing. Carers may also wish to avoid these conversations. This suggests a gap between ACP in policy and with how people with dementia and their carers understand and negotiate their preferences for care in practice.
This study will investigate:
• How do people with dementia and their carers prepare for advanced illness and end of life?
• What factors influence whether and how they prepare?
• What are people’s experiences of preparing for advanced illness and end of life?
• How do people with dementia and their carers interact and influence each other when preparing for future care, and what expectations do they have of each other?
• Does preparing for advanced illness and end of life make a difference to end of life outcomes and experiences?To answer these questions, we partner the ESRC-funded DETERMIND study [n=900, https://www.nihr.ac.uk/news/nihr-announces-15-million-of-new-dementia-research-in-partnership-with-the-economic-and-social-research-council/10018]. We use integrated quantitative and qualitative methods. We will conduct secondary analysis of DETERMIND survey data, carry out in-depth qualitative interviews with 40-50 purposively selected carers from the DETERMIND cohort and, wherever possible, the people with dementia they care for, and administer a postal survey with DETERMIND carers who become bereaved during the course of our study. We also use a co-design workshop to draw out implications for policy and practice.
REC name
Social Care REC
REC reference
19/IEC08/0048
Date of REC Opinion
16 Sep 2019
REC opinion
Favourable Opinion