Carers of People with Advanced Dementia: Their Experiences at the End of Life.

Aim: To test the feasibility of recruiting carers of people with advanced dementia, the acceptability of study tools and to explore their health and social care needs at the end of life and into bereavement. Previous research shows that carers of people with advanced dementia have high levels of carer burden, mental and physical poor health and anticipatory grief. Design: Pilot longitudinal cohort study. Method: Carers of people with advanced dementia (Functional Assessment Stage score 7c) were recruited from 11 care homes in London. The Zarit Carer Burden (ZCB), Brief COPE, Hospital Anxiety and Depression Scale (HADS), Inventory of Complicated Grief - pre loss (ICG), the SF-12 and the Satisfaction of Care at the End of Life in Dementia Scale (SWCEOLD) were used at baseline assessment and repeated monthly. Findings: 22 carers were approached and 16 recruited (73%). The mean age was 63 (range 46-80), 75% female, 36% married and 82% a child of the person with dementia. Mean ZCB score was 16.75 (range 0-48). On the COPE (range 2-8) the most common adaptive strategies were acceptance(mean 5.6) and religion (mean 4.5), most common maladaptive were self-blame (mean 3.1) and substance abuse (mean 3.1). On the HADS (cut off ≥8) 41% had possible anxiety and 12% possible depression. The mean pre-loss grief score (ICG) was 21.1 (range 10-44), SF-12 physical score 50 (range 33-52), mental health 50 (range 19- 64) and mean SWCEOLD 29.5 (range 13-38). Conclusion: Our pilot study found it was feasible to recruit carers of people with advanced dementia and that they were willing and able to complete questionnaires on their mental health, general wellbeing and grief. Most were not burdened or in psychological distress. They had low levels of anticipatory loss and grief. Wellbeing was not impaired and they were generally satisfied with their loved ones care. These results differ from previous studies, although the sample size is small, and we will now extend to a larger cohort study