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 prior to randomization in a care coordination intervention trial. SETTING Baltimore, MD. 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 in PWD was 7.7 (SD=4.8) and 4.6 (SD=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 among those with higher cognitive function. Ninety percent of PWD had unmet safety needs, over half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD were associated significantly with non-white race, lower incomes, 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 were associated significantly with non-white 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 among 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.

Objectives To assess whether a dementia care coordination intervention delays time to transition from home and reduces unmet needs in elders with memory disorders. Design 18-month randomized controlled trial of 303 community-living elders. Setting: 28 postal code areas of Baltimore, MD. Participants Age 70+, with a cognitive disorder, community-living, English-speaking, and having a study partner available. Intervention 18-month care coordination intervention to systematically identify and address dementia-related care needs through individualized care planning; referral and linkage to services; provision of dementia education and skill building strategies; and care monitoring by an interdisciplinary team. Measurements Primary outcomes were time to transfer from home and total percent of unmet care needs at 18 months. Results Intervention participants had a significant delay in time to all-cause transition from home and the adjusted hazard of leaving the home was decreased by 37% (HR = 0.63, 95% CI 0.42 to 0.94) compared to control participants. While there was no significant group difference in reduction of total percent of unmet needs from baseline to 18 months, the intervention group had significant reductions in the proportion of unmet needs in safety and legal/advance care domains relative to controls. Intervention participants had a significant improvement in self-reported quality of life (QOL) relative to control participants. No group differences were found in proxy-rated QOL, neuropsychiatric symptoms, or depression. Conclusions A home-based dementia care coordination intervention delivered by non-clinical community workers trained and overseen by geriatric clinicians led to delays in transition from home, reduced unmet needs, and improved self-reported QOL.

Background This study examines the relationship of unmet dementia-related care needs of community-dwelling persons, and their caregivers (CGs), to measures of caregiver burden. Methods Cross-sectional baseline data were analyzed from participants in a dementia care coordination trial of community-residing persons with dementia (PWD) (n = 254) and their caregivers (n = 246). Participants were recruited from Northwest Baltimore, Maryland. The Zarit Burden Inventory (ZBI) was used to measure subjective caregiver burden. Objective burden was measured by estimating the total hours per week spent doing things for the PWD and/or how many hours CGs missed paid work in the prior month due to caregiving responsibilities. The Johns Hopkins Dementia Care Needs Assessment was used to identify unmet dementia-related care needs. Bivariate and multivariate linear regressions examined the relationship of unmet needs, demographic, clinical, or functional characteristics with caregiver burden measures. Results In adjusted multivariable models, patient neuropsychiatric symptoms and caregiver unmet emotional needs explained 22% of the variance in ZBI scores. In adjusted multivariable models, caregiver need for respite, patient functional dependency, and caregiver unmet specialty medical needs explained 26% of the variance in the hours per week spent caregiving. PWD’s level of functional dependency was the sole correlate of missed time at work, explaining 11% of the variance. Conclusions Addressing potentially modifiable unmet caregiver needs may reduce subjective and objective caregiver burden.