Introduction Carers of people with advanced dementia (AdvD) have high burden and poor mental and physical health. The CoMPASs:IOn programme has developed and is piloting a complex intervention to improve end-of-life care for people with AdvD including support for families.

Aim(s) and method(s) Pilot longitudinal cohort study of carers (target N=40) of people with AdvD (Functional Assessment Staging Scale 7a and above), assessed at study entry then monthly for 9 months or until patient death using the HADS, SF-12 and Satisfaction with Care at the End of Life in Dementia Scale (SWCEOLD).

Results 25 carers currently recruited (mean age 62, range 43–91; 68% female; 76% child of the person with dementia, 48% in paid employment). 92% of those they care for reside in care homes. Initial SWC-EOLD scores were 29.7 (range 13–40), consistent even in 7 carers whose relative died (mean score 30.3 (range 13–40) a month before death, 32.1 (range 13–40) after bereavement). On HADS (cut off ≥8), at initial assessment 40% had anxiety, 28% depression. Anxiety decreased over time; 20% have recorded anxiety 9 months later (7 carers). Two months post-bereavement, 14% of carers had anxiety or depression. At first assessment, SF-12 physical scores were 50 (range 33–58) remaining constant, mental health 48 (range 19–64) declining to 44 post death.

Conclusion(s) It is feasible to recruit carers of people with AdvD and retain them into bereavement. Carers were satisfied with on-going care and around the time of death for the person with AdvD. Accrual continues for a further 4 months.