Caregiver outcomes of a dementia care program.
Leslie Chang Evertson, Lee A Jennings, David B Reuben and 4 others
PMID 33714024WHAT IT FOUND
Caregivers of dementia patients who did not benefit on program measures often said nurse recommendations missed their stage-specific needs; 45 of 53 responders still rated the nurse-led program very to extremely beneficial.
Key findings
01Among 53 caregivers who responded after not meeting clinical benefit criteria, 45 rated the nurse-led dementia program very to extremely beneficial, while the 56% who felt overwhelmed were less likely to do so.
02Interviews identified seven themes about why some caregivers did not benefit, including recommendations that did not match perceived needs, barriers to access, stage mismatch, unmet service needs, needing more education or support, ineffective behavioral advice, and poor rapport.
03Caregivers reported barriers to using recommended services, including transportation, distance, lack of respite, computer-based resources, language, and overwhelming caregiving burden.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The analysis focused only on dyads that did not meet clinical benefit criteria at 1 year, so it does not represent all caregivers in the program. Only 12 of 40 randomly selected caregivers agreed to interviews, and 41 of 111 surveyed caregivers responded. The study could not capture 49% of dyads who did not return for the annual visit, some of whom may also have been non-benefiting. The work was done in one program at one site, so the themes may not apply to other dementia care programs. Some interviews and surveys happened after the patient had left the program due to death or other reasons, so caregivers relied on memory. The stated purpose was to generate improvement ideas, not to produce accurate population estimates.
Declared interests
The supplied metadata lists N.I.H. Extramural support. The article text provided does not include an author conflict-of-interest declaration or statement about sponsor role in design, analysis, or writing.
The easy way to misread this
Do not read the 45 of 53 beneficial ratings as proof the program works. These were caregivers who did not meet clinical benefit criteria, and the study reports perceptions and themes rather than a tested effect.