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

Published online by Cambridge University Press:  04 February 2019

Betty S. Black
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Deirdre Johnston
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Jeannie Leoutsakos
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Melissa Reuland
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Jill Kelly
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Halima Amjad
Affiliation:
Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Karen Davis
Affiliation:
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
Amber Willink
Affiliation:
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
Danetta Sloan
Affiliation:
Department of Health Behaviors and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA
Constantine Lyketsos
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Quincy M. Samus
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Corresponding
E-mail address:

Abstract

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.

Type
Original Research Article
Copyright
© International Psychogeriatric Association 2019 

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References

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.CrossRefGoogle Scholar
Alzheimer’s Association (2018). 2018 Alzheimer’s disease facts and figures. Alzheimer's & Dementia, 14, 367429.CrossRefGoogle Scholar
Alzheimer’s Disease International (2018). World Alzheimer Report 2018. The State of the Art of Dementia Research: New Frontiers. London: Alzheimer Disease International. https://www.alz.co.uk/research/WorldAlzheimerReport2018.pdf?2. Accessed October 4, 2018.Google Scholar
Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care. Does it matter? Journal of Health and Social Behavior, 36, 110.CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Brandt, J., Spencer, M. and Folstein, M. (1988). The telephone interview for cognitive status. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 1, 111117.Google Scholar
Cohen, J. (1988). Statistical Power Analysis for the Behavioral Sciences (2nd edn). Hillsdale, NJ: Lawrence Erlbaum Associates.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Hinrichsen, G. A. and Ramirez, M. (1992). Black and white dementia caregivers: a comparison of their adaptation, adjustment, and service utilization. Gerontologist, 32, 375381.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Jeong, Y. and Jung, M. J. (2016). Application and interpretation of hierarchical multiple regression. Orthopaedic Nursing, 35, 338341.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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, 131139.3.0.CO;2-5>CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Lanctot, K. L. et al. (2017). Neuropsychiatric signs and symptoms of Alzheimer’s disease: new treatment paradigms. Alzheimer's & Dementia, 3, 440449.Google ScholarPubMed
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179186.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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 Google ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Rabins, P. V., Lyketsos, C. G. and Steele, C. (2016). Practical Dementia Care (3rd edn). New York: Oxford University Press.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Triplett, P. et al. (2008). Content of advance directives for individuals with advanced dementia. Journal of Aging and Health, 20, 583596.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of impaired elderly: correlates of feelings of burden. Gerontologist, 20, 649655.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed

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