Skip to main content Accessibility help

Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics

  • Betty S. Black (a1), Deirdre Johnston (a1), Jeannie Leoutsakos (a1), Melissa Reuland (a1), Jill Kelly (a1), Halima Amjad (a2), Karen Davis (a3), Amber Willink (a3), Danetta Sloan (a4), Constantine Lyketsos (a1) and Quincy M. Samus (a1)...



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.


Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses.


Participants lived in the greater Baltimore, Maryland and Washington DC suburban area.


A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs.


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.


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.


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.


Corresponding author

Correspondence should be addressed to: Quincy M. Samus, Department of Psychiatry, Johns Hopkins University School of Medicine, Mason F. Lord Building, East Tower, #326, Baltimore, MD 21224, USA. Phone: 410-550-6493; Fax: 410-550-5930. Email:


Hide All
AGS Clinical Practice Committee (2003). Guidelines abstracted from the American Academy of Neurology’s dementia guidelines for early detection, diagnosis and management of dementia. Journal of the American Geriatrics Society, 51, 869873.
Alzheimer’s Association (2018). 2018 Alzheimer’s disease facts and figures. Alzheimer's & Dementia, 14, 367429.
Alzheimer’s Disease International (2018). World Alzheimer Report 2018. The State of the Art of Dementia Research: New Frontiers. London: Alzheimer Disease International. Accessed October 4, 2018.
Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care. Does it matter? Journal of Health and Social Behavior, 36, 110.
Beach, S. R., Schulz, R., Friedman, E. M., Rodakowski, J., Martsolf, G. and James, A. E. (2018). Adverse consequences of unmet needs for care in high-need/high-cost older adults. The Journals of Gerontology: Series B. doi: 10.1093/geron/gby021
Benner, M., Steiner, V. and Pierce, L. L. (2018). Family caregiver’s reports of hospitalizations and emergency department visits in community-dwelling individuals with dementia. Dementia, 17, 585595.
Black, B. S., Johnston, D., Morrison, A., Rabins, P. V., Lyketsos, C. G. and Samus, Q. M. (2012). Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures. Quality of Life Research, 21, 13791389.
Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C. G. and Samus, Q. M. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61, 20872095.
Brandt, J., Spencer, M. and Folstein, M. (1988). The telephone interview for cognitive status. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 1, 111117.
Cohen, J. (1988). Statistical Power Analysis for the Behavioral Sciences (2nd edn). Hillsdale, NJ: Lawrence Erlbaum Associates.
Cummings, J. L., Medg, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A. and Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 23082314.
Dyer, S. M., Harrison, S. L., Laver, K., Whitehead, C. and Crotty, M. (2018). An overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia. International Psychogeriatrics, 30, 295309.
Folstein, M. R., Folstein, S. E. and McHugh, P. R. (1975). ‘Mini mental state’. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.
Gallagher, D. et al. (2011). Determinants of the desire to institutionalize in Alzheimer’s caregivers. American Journal of Alzheimer's Disease & Other Dementias®, 26, 205211.
Gaugler, J. E., Kane, R. L., Kane, R. A. and Newcomer, R. (2005). Unmet care needs and key outcomes in dementia. Journal of the American Geriatrics Society, 53, 20982105.
Gitlin, L. N., Hodgson, N., Piersol, C. V., Hess, E. and Hauck, W. W. (2014). Correlates of quality of life for individuals with dementia living at home: the role of home environment, caregiver, and patient-related characteristics. The American Journal of Geriatric Psychiatry, 22, 587597.
Gitlin, L. N. et al. (2009). The tailored activity program to reduce behavioral symptoms in individuals with dementia: feasibility, acceptability, and replication potential. Gerontologist, 29, 428439.
Hinrichsen, G. A. and Ramirez, M. (1992). Black and white dementia caregivers: a comparison of their adaptation, adjustment, and service utilization. Gerontologist, 32, 375381.
Hughes, T. B. et al. (2014). Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. International Psychogeriatrics, 26, 18751883.
Jeong, Y. and Jung, M. J. (2016). Application and interpretation of hierarchical multiple regression. Orthopaedic Nursing, 35, 338341.
Johnston, D. et al. (2011). Identification of community residing individuals with dementia and their unmet needs for care. International Journal of Geriatric Psychiatry, 26, 292298.
Jorm, A. F. et al. (1996). Further data on the validity of the Informant Questionnaire on Cognitive decline in the Elderly (IQCODE). International Journal of Geriatric Psychiatry, 11, 131139.
Jorm, A. and Jacomb, P. (1989). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): socio-demographic correlates, reliability, validity and some norms. Psychological Medicine, 19, 10151022.
Kerpershoek, L. et al. (2017). Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice. Aging & Mental Health, 22, 897902.
Kroenke, K., Spitzer, R. and Williams, J. B. W. (2001). The PHQ-9: validity of a brief depression severity inventory. Journal of General Internal Medicine, 16, 606613.
Lanctot, K. L. et al. (2017). Neuropsychiatric signs and symptoms of Alzheimer’s disease: new treatment paradigms. Alzheimer's & Dementia, 3, 440449.
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179186.
Logsdon, R. G., Gibbons, L. E., McCurry, S. M. and Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510519.
Lyketsos, C. G. et al. (2006). Position statement of the American Association for Geriatric Psychiatry regarding principles of care for patients with dementia resulting from Alzheimer disease. The American Journal of Geriatric Psychiatry, 14, 561572.
Lyketsos, C. G. et al. (1999). The General Medical Health Rating: a bedside global rating of medical comorbidity in patients with dementia. Journal of the American Geriatrics Society, 47, 487491.
Mazurek, J., Szczesniak, D., Urbanska, K., Droes, R. M. and Rymaszewska, J. (2017). Met and unmet care needs of the elderly with dementia living at home: personal and informal carers’ perspectives. Dementia, 1471301217733233. doi: 10.1177/1471301217733233
McClam, T. C., Marano, C. M., Rosenberg, P. B. and Lyketsos, C. G. (2015). Interventions for neuropsychiatric symptoms in neurocognitive impairment due to Alzheimer’s disease: a review of the literature. Harvard Review of Psychiatry, 23, 377393.
McKhann, G. M. et al. (2011). The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer's & Dementia, 7, 263269.
Mirando-Castillo, C., Woods, B., Galboda, K., Oomman, S., Olojugba, C. and Orrell, M. (2010). Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes, 8, 132.
Morrisby, C., Joosten, A. and Ciccarelli, M. (2018). Do services meet the needs of people with dementia and carers living in the community? A scoping review of the international literature. International Psychogeriatrics, 30, 514.
Perneczky, R., Wagenpfeil, S., Komossa, K.,Grimmer, T., Diehl, J. and Kurz, A. (2006). Mapping scores onto stages: Mini Mental State Examination and Clinical Dementia Rating. The American Journal of Geriatric Psychiatry, 14, 139144.
Porter, C. (2018). Advance directives as a tool to respect patients’ values and preferences: discussion on the case of Alzheimer’s disease. BMC Medical Ethics, 19, 9.
Rabins, P. V., Lyketsos, C. G. and Steele, C. (2016). Practical Dementia Care (3rd edn). New York: Oxford University Press.
Samus, Q. M. et al. (2018). MIND at Home-Streamlined: study protocol for a randomized trial of home-based care coordination for persons with dementia and their caregivers. Contemporary Clinical Trials, 71, 103112.
Samus, Q. M. et al. (2017). Comprehensive home-based care coordination for vulnerable elders with dementia: Maximizing Independence at Home-Plus Study protocol. International Journal of Care Coordination, 20, 123134.
Samus, Q. M. et al. (2014). A multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (MIND) pilot randomized trial. The American Journal of Geriatric Psychiatry, 22, 398414.
Scholzel-Dorenbos, C. J., Meeuwsen, E. J. and Olde Rikkert, M. G. (2010). Integrating unmet needs into dementia health-related quality of life research and care: introduction of the Hierarchy Model of Needs in Dementia. Aging and Mental Health, 14, 113119.
Schulz, R. and Martire, L. M. (2004). Family caregiving of persons with dementia: prevalence, health effects and support strategies. The American Journal of Geriatric Psychiatry, 12, 240249.
Stein, J. et al. (2017). Unmet care needs in the oldest old primary care patients with cognitive disorders: results of the AgeCoDe and AgeQualiDe Study. Dementia and Geriatric Cognitive Disorders, 44, 7183.
Triplett, P. et al. (2008). Content of advance directives for individuals with advanced dementia. Journal of Aging and Health, 20, 583596.
van der Roest, H. G. et al. (2009). What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21, 949965.
Waldemar, G. et al. (2007). Recommendations for the diagnosis and management of Alzheimer’s disease and other disorders associated with dementia: EFNS guideline. European Journal of Neurology, 14, e1e26.
Ware, J. E., Kosinski, M. and Keller, S. D. (1996). A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Medical Care, 34, 220233.
Wilkinson, I. M. and Graham-White, J. (1980). Psychogeriatric Dependency Rating Scales (PGDRS): a method of assessment for use by nurses. The British Journal of Psychiatry, 137, 558565.
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of impaired elderly: correlates of feelings of burden. Gerontologist, 20, 649655.
Zhou, Y., Slachevasky, A. and Calvo, E. (2018). Health conditions and unmet needs for assistance to perform activities of daily living among older adults with dementia in Chile. International Journal of Geriatric Psychiatry, 33, 964971.


Type Description Title
Supplementary materials

Black et al. supplementary material
Tables S1-S2

 Word (18 KB)
18 KB


Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed