Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics
Open accessAbstract
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.
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Neuropsychiatric symptoms likely contribute to increased caregiving demands, making it harder for caregivers to fully address all needs.
“Neuropsychiatric symptoms likely contribute to increased caregiving demands, making it harder for caregivers to fully address all needs [1].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [1]
The Discussion (page not specified) reports that people with more neuropsychiatric symptoms had significantly more unmet needs, and that caregivers who spent less time with them may be less able to identify or address needs. It also describes neuropsychiatric symptoms as challenging to treat. The paper does not establish the proposed link that those symptoms increase caregiving demands, which in turn makes it harder for caregivers to meet all needs. (LLM, conf=0.84)
Experimental — accuracy not yet measuredLower education among people with dementia may lead to less access to health literacy and resources, making it more challenging to navigate care systems, understand their own needs, and advocate for appropriate services.
“Individuals with lower education may have less access to health literacy and resources, making it more challenging to navigate care systems, understand their own needs, and advocate for appropriate services [1, 25, 26].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [1]
The Discussion (page unavailable) identifies less education as a correlate of unmet needs in people with dementia and suggests that education may help people obtain information about and access to dementia-related services. It does not specifically address health literacy, navigating care systems, understanding one’s own needs, or advocating for services. (LLM, conf=0.82)
Experimental — accuracy not yet measuredPeople with dementia often experience numerous unmet needs, including difficulties with daily activities, social engagement, emotional well-being, and access to healthcare.
“People with dementia (PWD) often experience numerous unmet needs, including difficulties with daily activities, social engagement, emotional well‐being, and access to healthcare [1, 2].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [1]
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- Authors
- Black, B. S., Johnston, D., Leoutsakos, J., Reuland, M., Kelly, J., Amjad, H., Davis, K., Willink, A., Sloan, D., Lyketsos, C., & Samus, Q. M.
- Affiliations
- Johns Hopkins University (US)
- Corresponding author
- Samus, Quincy M.
- ORCID
- Venue
- International Psychogeriatrics
- Publisher
- Elsevier BV
- Published
- 2019-11
- Volume
- 31
- Issue
- 11
- Pages
- 1643-1654
- ISSN
- 1041-6102 (ISSN-L)
- PMC
- PMC6679825
- OpenAlex
- W2914203969
- Cited by
- 145
- References
- 57
- Citations by year
- 2026: 15 · 2025: 26 · 2024: 25 · 2023: 18 · 2022: 24 · 2021: 19 · 2020: 13 · 2019: 3 · 2018: 2
- FWCI
- 11.73
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- International Psychogeriatrics (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (R01 AG046274, 08/15/2014-04/30/2019, NCT02396082)
- Centers for Medicare and Medicaid Services (1C1CMS331332, 09/01/2014-11/30/2017, NCT02395731, = 342)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- dementia, unmet needs, informal caregivers, home safety, health care needs, daily activities, neuropsychiatric symptoms, caregiver education, quality of life, cognitive function
- MeSH terms
- Aged, Aged, 80 and over, Cross-Sectional Studies, Dementia, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Quality of Life, Baltimore, Geriatric Assessment, Caregivers, Needs Assessment, Independent Living
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