Caregiver resource utilization: Intellectual and development disability and dementia.
Victoria Fleming, Kristin Litzelman
PMID 34124823WHAT IT FOUND
Caregivers of adults with intellectual and developmental disabilities contacted similar numbers of agencies as other groups, but nearly half did not use suggested services because they were unavailable.
This contrasts with dementia caregivers, who contacted more agencies but often found services they were ineligible for.
Key findings
01Caregivers of adults with intellectual and developmental disabilities did not contact significantly more agencies than caregivers of adults without these disabilities.
02Nearly half of caregivers of adults with intellectual and developmental disabilities did not use suggested services because the services were unavailable.
03Caregivers of adults with dementia contacted nearly twice as many agencies as those without dementia, but often did not use services due to ineligibility.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study used a convenience sample from one US state, so results may not apply to other regions or healthcare systems. Data relied on caregiver recall and self-report, which can be inaccurate. The analysis could not control for the age of the care recipient due to unequal distributions across groups. The survey did not reach many caregivers of color or underserved populations. The study could not control for the actual level of need of the caregiver or care recipient.
Declared interests
The authors have no conflicts to disclose.
The easy way to misread this
Do not assume that high service utilization indicates a well-supported caregiver. Dementia caregivers contacted more agencies but often could not use the services due to eligibility rules, while intellectual disability caregivers contacted fewer agencies and often found the suggested services simply did not exist in their area.