Self-Reports and Caregivers’ Proxy Reports of Unmet Needs of Persons With Dementia: Implications for Both Partners’ Health-Related Quality of Life

Objective: This study examined in a large sample of dementia caregiving dyads the associations between both partners’ reports of unmet needs in persons with dementia (PwDs) and both partners’ health-related quality of life (HRQOL). Methods: This was a cross-sectional self-report survey of 521 community-dwelling dyads in a pragmatic trial in the Netherlands. The Camberwell Needs Assessment was used to measure PwDs’ unmet needs. Both partners’ self-reported their HRQOL using the EuroQol-5. Results: Controlling for covariates, PwDs’ self-reported greater unmet needs were significantly associated with PwDs’ and caregivers’ lower self-reported HRQOL (actor effect; b = −0.044, β = −0.226, z = −3.588, p <0.001 and partner effect; b = −0.021, β = −0.131, z = −2.154, p = 0.031). Caregivers’ proxy reports were greater than PwDs’ self-reported unmet needs (Δ=0.66,χ 2(1)=55.881,p<.0001). Conclusion: Clinicians should use caution in relying on caregiver proxy reports of PwDs’ needs and HQOL alone regarding healthcare decision making