Extended Family Caregivers for Persons Living With Dementia.
Karen A Roberto, Jyoti Savla
PMID 35960005WHAT IT FOUND
Extended family caregivers of people with dementia provided substantial daily care, often without respite or training. 36% of grandchildren reported substantial emotional difficulty, and 25% of nieces/nephews reported physical difficulty.
Key findings
01Respite was rare: less than 10% of Study 1 caregivers used respite, and only two of the 10 Study 2 caregivers did.
02In Study 1, 68% of grandchildren and 59% of sibling caregivers cared for a relative who had one or more self-care needs, while household activity assistance was common across all caregiver groups.
03Caregivers reported difficulties: 36% of grandchildren reported substantial emotional difficulties and 21% reported financial difficulties, while 25% of nieces/nephews reported physical difficulties.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This is a descriptive mixed-methods analysis, not a test of whether any service or intervention improves caregiver or patient outcomes. Study 1 used existing survey data, and NSOC caregivers were not necessarily primary caregivers; data were collected on up to five helpers. Extended caregiver subgroups were small, especially siblings (2%) and stepkin (1%), so group differences should be read cautiously. Study 2 had only 10 extended family caregivers from a rural Appalachian sample, and the study was not focused specifically on extended family caregivers. Depression and anxiety were measured with brief screening items, not clinical diagnoses. The authors report some higher percentages for grandchildren and nieces or nephews, but many comparisons were not significant.
Declared interests
No conflicts-of-interest statement is provided in the supplied text. The article is listed as supported by NIH extramural research funding.
The easy way to misread this
Do not read the higher percentages of emotional, financial, or physical difficulty in grandchildren and nieces/nephews as proven group differences. The paper reports no significant differences among extended caregiver groups for these difficulties, and it did not test whether services reduce strain.