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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)...

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.

Copyright

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: qmiles@jhmi.edu.

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