Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study

Abstract

Objectives: To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers.

Design: Analysis of cross-sectional, baseline participant characteristics before randomization in a care coordination intervention trial.

Setting: Baltimore, Maryland.

Participants: Community-residing PWD (n=254) and their informal caregivers (n=246).

Measurements: In-home assessments of dementia-related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were conducted to identify demographic, socioeconomic, clinical, functional, and quality-of-life correlates of unmet needs.

Results: The mean number of unmet needs was 7.7±4.8 in PWD and 4.6±2.3 in caregivers, with almost all PWD (99%) and caregivers (97%) having one or more unmet needs. Unmet needs in PWD were significantly greater in those with higher cognitive function. Ninety percent of PWD had unmet safety needs, more than half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD was significantly associated with nonwhite race, lower income, less impairment in activities of daily living, and more symptoms of depression. For caregivers, more than 85% had unmet needs for resource referrals and caregiver education. Higher unmet caregiver needs was significantly associated with nonwhite race, less education, and more symptoms of depression.

Conclusion: Many community-residing PWD and their caregivers have unmet dementia-related needs for care, services, and support. Providers should be aware that unmet needs may be higher in minority and low-income community residents, caregivers with lower education, and individuals with early-stage dementia. Identifying and treating symptoms of depression in PWD and caregivers may enable them to address their other unmet needs.

© 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

Figures

Figure 1. Percent of PWD (n=254) and Caregivers (n=245) with Any Unmet Needs by JHDCNA Domainsa

a Johns Hopkins Dementia Care Needs Assessment domains PWD – persons with dementia IADLs – instrumental activities of daily living ADLs – basic activities of daily living