Care Recipient Concerns About Being a Burden and Unmet Needs for Care

Disabled older adults' needs for help with daily activities sometimes go unmet with potentially long-term negative consequences for health and well-being.

To examine the relationship between care recipient unmet needs and (1) concerns about being a burden; (2) perceptions of caregiver burden; and (3) and caregiver self-reports of burden in community-dwelling care recipient-caregiver dyads.

Telephone surveys with 196 linked caregiver-care recipient dyads from the 2017 Pittsburgh Regional Caregiver Survey. Of 376 caregivers who gave initial permission to contact the recipient (February-July), 262 caregivers were recontacted and gave permission to attempt a care recipient survey (September-October; n = 196 completed; 74.8% response rate). In addition to the burden measures, we controlled for several covariates, including disability level, receipt of paid help, and care recipient and caregiver sociodemographics.

Slightly more than one fourth (27.2%) of care recipients were "very concerned" about being a burden, and 43.6% were "somewhat concerned." Care recipient concerns about being a burden (exp(B) = 1.71, 95% confidence interval [CI] exp(B) [1.15, 2.54]); and caregiver self-reported burden (exp(B) = 1.82, 95% CI exp(B) [1.17, 2.85]) were independent predictors of more care recipient unmet needs. Recipient perceptions of caregiver burden were not independently predictive. Care recipients with higher disability levels, those without paid help, and those whose caregiver was not a spouse/child also reported more unmet needs. The impact of burden on unmet needs was stronger for instrumental activities of daily living/mobility needs than for activities of daily living needs.

Potential interventions to reduce unmet needs should take a dyadic approach, focusing on reducing both care recipient perceptions of being a burden and caregiver experienced burden.