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Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

  • Kirsten J. Moore (a1), Sophie Crawley (a1), Victoria Vickerstaff (a1), Claudia Cooper (a2) (a3), Michael King (a2) and Elizabeth L. Sampson (a1) (a4)...

Abstract

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.

Design:

Cross-sectional.

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 (ClinicalTrials.gov ID: NCT03332979).

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Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

Corresponding author

Correspondence should be addressed to: Kirsten Moore, Marie Curie Palliative Care Research Department, 6th Floor, Maple House, 149 Tottenham Court Road, LondonW1T 7NF. Phone +44 2076799488. Email: kirsten.moore@ucl.ac.uk.

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Keywords

Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

  • Kirsten J. Moore (a1), Sophie Crawley (a1), Victoria Vickerstaff (a1), Claudia Cooper (a2) (a3), Michael King (a2) and Elizabeth L. Sampson (a1) (a4)...

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