Experiencing Loss and Planning Ahead Study - Carer Interviews
Research type
Research Study
Full title
Experiencing Loss and Planning Ahead Study (ELPAS): Caring for a relative or friend with dementia
IRAS ID
232091
Contact name
Kirsten J Moore
Contact email
Sponsor organisation
UCL
Clinicaltrials.gov Identifier
11755/001, UCL REC number
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
The course of dementia over many years, gradual losses and uncertain life expectancy can mean that family carers experience feelings and symptoms of grief before the death of the person for whom they are caring. UK guidelines recommending that carers are offered information about bereavement supports and dementia progression are rarely followed in practice. Between 47-71% of family carers of people with dementia experience grief before the death and 20% experience complicated grief after the death. Emotional support during care rather than solely after the death may be beneficial.
Preparation for end of life has medical, psychosocial, spiritual and practical components, including having a family member or healthcare professional to help make decisions, knowing what to expect about the terminal condition and having finances in place. Preparation for end of life is associated with less complicated grief after death but has not been explored before the death of the person with dementia. Factors reflecting preparation for end of life can potentially be altered suggesting that improving preparation could reduce grief intensity before the death. Very few studies have examined preparation for end of life and severity of grief before death among carers of people with dementia. Knowing which modifiable factors reflecting preparation for end of life are most closely associated with grief before the death will inform the development of a resource for carers.
This study aims to examine the relationship between family and friend carers’ feelings of grief before the death of a person with dementia and how well carers are prepared for that death. The primary hypothesis is that modifiable factors indicating preparation for end of life are associated with lower grief before the death in carers of people with dementia. Secondary objectives will provide further guidance for supporting carers experiencing grief before the death.REC name
London - South East Research Ethics Committee
REC reference
17/LO/1881
Date of REC Opinion
14 Dec 2017
REC opinion
Further Information Favourable Opinion