The DOI matches its Crossref record; 52 of the 54 references it cites were found in a registry or an index.
Unmet Needs of Community‐Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study
Open accessAbstract
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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“Furthermore, unmet needs may contribute to a higher likelihood of institutionalization, placing additional strain on both healthcare systems and family caregivers [5, 6].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [5]
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“More severe neuropsychiatric symptoms predicting more unmet needs have been extensively reported [5, 29].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [5]
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“To assess the need for care, we used the translated and adapted Brazilian Portuguese version [15] of the Johns Hopkins Dementia Care Needs Assessment (JHDCNA, 2.0) [5, 6].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [5]
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Cites
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Assessment of Activities of Daily Living, Self-Care, and Independence
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“Quantitative literature in part supports this, with unmet medical needs being related to carerQOL[39].”
BackgroundMartyr, A., Nelis, S. M., Quinn, C., Wu, Y., Lamont, R. A., Henderson, C., Clarke, R., Hindle, J. V., Thom, J. M., Jones, I. R., et al. (2018) · Psychological Medicine · doi:10.1017/s0033291718000405 · Cited by 335
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What do family caregivers of people with dementia need? A mixed‐method systematic review
Bressan, V, Visintini, C., & Palese, A. (2020) · Health & Social Care in the Community · doi:10.1111/hsc.13048 · Cited by 210
Metadata
- Authors
- Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C., & Samus, Q. M.
- Affiliations
- Johns Hopkins University (US)
- Morrison and Associates, LLC Baltimore Maryland
- Corresponding author
- Black, Betty S.
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2013-11-25
- Volume
- 61
- Issue
- 12
- Pages
- 2087-2095
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC4001885
- OpenAlex
- W2013551598
- Cited by
- 335
- References
- 54
- Citations by year
- 2026: 13 · 2025: 18 · 2024: 33 · 2023: 30 · 2022: 39 · 2021: 30 · 2020: 41 · 2019: 31 · 2018: 39 · 2017: 26 · 2016: 16 · 2015: 12 · 2014: 7
- FWCI
- 8.12
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Hoffberger Family Fund
- LeRoyHoffberger
- Harry and Jeannette Weinberg Foundation
- Rosenberg Foundation
- Hirschhorn Foundation
- Stulman Charitable Foundation
- Meyerhoff Foundation
- Marc and Leonor Blum
- Baltimore County Department of Aging
- Blum Family
- Lowell Glazer
- Greif Family Fund
- Marvin Schapiro Family Foundation
- Lois and Phillip Macht
- Eliasberg Family Foundation
- Richard and Rosalee Davison
- Alison & Arnold Richman
- Moser Family Philanthropic Fund
- Richard Lansburgh
- Anonymous
- Jewish Community Federation of Baltimore
- Jewish Federation of Baltimore
- National Institute on Aging (R01 AG038440)
- Weinberg Foundation
- Forest
- Glaxo-Smith-Kline
- Eisai
- Pfizer
- Astra-Zeneca
- Lilly
- Ortho-McNeil
- Bristol-Myers
- Novartis
- National Football League
- Elan
- Functional Neuromodulation Inc.
- National Institute of Mental Health (K01 MH085142)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Health Sciences › Medicine › Geriatrics and Gerontology › Geriatric Care and Nursing Homes
- Keywords
- dementia, unmet needs, informal caregivers, community-dwelling older adults, care coordination, caregiver needs, safety needs, meaningful activities, caregiver depression, racial and ethnic disparities, socioeconomic status, activities of daily living, caregiver education, resource referral, early-stage dementia, quality of life
- MeSH terms
- Aged, Aged, 80 and over, Cross-Sectional Studies, Dementia, Female, Health Services Needs and Demand, Humans, Male, Quality of Life, Baltimore, Geriatric Assessment, Caregivers, Needs Assessment
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