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.

Objective. To investigate effects of a novel dementia care coordination program on health services utilization. Data Sources/Study Setting. A total of 303 community-dwelling adults aged ≥70 with a cognitive disorder in Baltimore, Maryland (2008-2011. Study Design. Single-blind RCT evaluating efficacy of an 18-month care coordination intervention delivered through community-based nonclinical care coordinators, supported by an interdisciplinary clinical team. Data Collection/Extraction Methods. Study partners reported acute care/inpatient, outpatient, and home-and community-based service utilization at baseline, 9, and 18 months. Principal Findings. From baseline to 18 months, there were no significant group differences in acute care/inpatient or total outpatient services use, although intervention participants had significantly increased outpatient dementia/mental health visits from 9 to 18 months (p = .04) relative to controls. Home and community-based support service use significantly increased from baseline to 18 months in the intervention compared to control (p = .005). Conclusions. While this dementia care coordination program did not impact acute care/inpatient services utilization, it increased use of dementia-related outpatient medical care and nonmedical supportive community services, a combination that may have helped participants remain at home longer. Future care model modifications that emphasize delirium, falls prevention, and behavior management may be needed to influence inpatient service use.

Purpose To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development. Methods Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD’ QOL. Results Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression. Conclusions Correlates of QOL in community-residing PWD depend on who rates the PWD’s QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

Objective:Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD.Design:Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses.Setting:Participants lived in the greater Baltimore, Maryland and Washington DC suburban area.Participants:A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs.Measurements:Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers.Results:PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD.Conclusions:Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD’s unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

Among over 5 million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, , identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6 months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3 months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6 months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.

Objectives To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. Design 18-month randomized controlled trial of 289 community-living care recipient (CR)/caregiver dyads. Setting 28 postal code areas of Baltimore, MD. Participants Informal caregivers (i.e., an unpaid individual who is regularly relied on by the CR for assistance). Intervention All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by non-clinical community-workers to address unmet care needs through individualized care planning; referral and linkage to dementia services; provision of caregiver dementia education and skill building strategies; and care progress monitoring by an interdisciplinary team. Measurements Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. Results Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, but there was no statistically significant between-group difference. There were no significant group differences in most caregiver burden measures, depression, or QOL. There was a potentially clinically- relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with controls. Conclusions No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. Yet, MIND appeared to have had a modest, and clinically-meaningful, impact on informal caregiver time spent with CRs.

HBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC.