Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study

Authors

  • Betty S. Black PhD,

    Corresponding author
    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    • Address correspondence to Betty S. Black, Department of Psychiatry and Behavioral Sciences, 600 North Wolfe Street, Meyer 3-142, Baltimore, MD 21287. E-mail: bblack@jhmi.edu

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  • Deirdre Johnston MB, BCh,

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
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  • Peter V. Rabins MD, MPH,

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
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  • Ann Morrison PhD, RN,

    1. Morrison and Associates, LLC, Baltimore, Maryland
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  • Constantine Lyketsos MD, MHS,

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    2. Johns Hopkins Bayview Medical Center, Baltimore, Maryland
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  • Quincy M. Samus PhD

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    2. Johns Hopkins Bayview Medical Center, Baltimore, Maryland
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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.

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