Objectives: Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers.
Setting: Caregivers of people with dementia living at home or in a care home.
Participants: in total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%).
Measurements: Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden”; “heartfelt sadness”; “worry and felt isolation”).
Results: only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower “heartfelt sadness.”
Conclusion: We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia.
OBJECTIVES: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life.
METHODS: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings.
RESULTS: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and NICE statements presented regarding end-of-life care planning and discussions.
CONCLUSIONS: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity and tensions regarding when these conversations should be initiated and by whom.