ELPAS

Experiencing Loss and Planning Ahead Study (ELPAS): Caring for a relative or friend with dementia

Project Summary

This study aimed to examine the relationship between carers' feelings of grief before the death of a person with dementia and how well carers are prepared for that death.

The course of dementia over many years, gradual losses and uncertain life expectancy can lead to grief amongst family and friend carers. We interviewed 150 family carers from England and Wales, surveyed memory clinics, Admiral Nurses and care homes to explore how carers and services recognise and manage grief during caring. We used the learnings from this study to develop an animation to raise awareness of carer grief.

You can see the animation via the link below

Caring for family or friends with dementia animation

Selected Publications

Moore KJ, Crawley S, Vickerstaff V, Cooper C, King M, Sampson EL (2020) Is preparation for end of life associated with pre-death grief in caregivers of people with dementia? International Psychogeriatrics. 32(6), 753-763. https://doi.org/10.1017/S1041610220000289

Moore KJ, Crawley S, Cooper C, Sampson EL, Harrison-Dening K. (2020) How do Admiral Nurses and care home staff help people living with dementia and their family carers prepare for end-of-life? International Journal of Geriatric Psychiatry, 35(4), 405-413. https://doi.org/10.1002/gps.5256

Moore KJ; Lee CY, Sampson EL; Candy B; (2019) Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review. Dementia http://dx.doi.org/10.1177/1471301219831530

Moore K, Goodison H, Sampson EL. (2019) The Role of the Memory Service in Helping Carers to Prepare for End of Life: A Mixed Methods Study. Int J Geriatr Psychiatry. 34(2), 360-368. doi:10.1002/gps.5034