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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 ,
Deirdre Johnston ,
Jeannie Leoutsakos ,
Melissa Reuland ,
Jill Kelly ,
Halima Amjad ,
Karen Davis ,
Amber Willink ,
Danetta Sloan  and
Constantine Lyketsos
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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
*
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: [email protected].
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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.

Keywords

dementiaunmet needscommunity-livingcare recipientscaregivers
Type
Original Research Article
Information
International Psychogeriatrics , Volume 31 , Issue 11: Issue Theme: Psychiatric Morbidity in Exceptionally Old People , November 2019 , pp. 1643 - 1654
Copyright
© International Psychogeriatric Association 2019 

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