Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study.
OBJECTIVE
To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers.


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


METHODS
Baltimore, Maryland.


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


METHODS
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.


CONCLUSIONS
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.
Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland.
Betty S
BS
Black
Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland.
Deirdre
D
Johnston
Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland.
Peter V
PV
Rabins
Morrison and Associates, LLC, Baltimore, Maryland.
Ann
A
Morrison
Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland.|Johns Hopkins Bayview Medical Center, Baltimore, Maryland.
Constantine
C
Lyketsos
Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland.|Johns Hopkins Bayview Medical Center, Baltimore, Maryland.
Quincy M
QM
Samus
D000368:Aged; D000369:Aged, 80 and over; D015142:Baltimore; D017028:Caregivers / Q000523:psychology; D003430:Cross-Sectional Studies; D003704:Dementia / Q000451:nursing* / Q000523:psychology; D005260:Female; D015577:Geriatric Assessment; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D020380:Needs Assessment; D011788:Quality of Life