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Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures

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Abstract

Purpose

To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development.

Methods

Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD’ QOL.

Results

Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression.

Conclusions

Correlates of QOL in community-residing PWD depend on who rates the PWD’s QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

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Abbreviations

ADLs:

Activities of daily living

ADRQL:

Alzheimer Disease-Related Quality of Life

CAS:

Caregiver Activity Survey

CSDD:

Cornell Scale for Depression in Dementia

DCNA:

Dementia Care Needs Assessment

DSM-IV-TR:

Diagnostic and Statistical Manual Fourth Edition Text Revision

GDS:

Geriatric Depression Scale

IADLs:

Instrumental activities of daily living

IQCODE:

Informant Questionnaire for Cognitive Disorders in the Elderly

MCI:

Mild cognitive impairment

MIND at Home:

Maximizing Independence at Home

MMSE:

Mini Mental State Examination

NOS:

Not otherwise specified

NPI-Q:

Neuropsychiatric Inventory-Questionnaire

NPS:

Neuropsychiatric symptoms

PGDRS:

Psychogeriatric Dependency Rating Scale

PWD:

Persons with dementia

QOL:

Quality of life

QOL-AD:

Quality of Life-Alzheimer Disease

QOL-AD_CR:

Quality of Life-Alzheimer Disease_Caregiver-Rated

QOL-AD_SR:

Quality of Life-Alzheimer Disease_Self-Rated

SF-12:

Short Form 12 Items

TICS:

Telephone Interview for Cognitive Status

ZBI:

Zarit Burden Inventory

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Acknowledgments

The authors would like to especially thank Mr. Leroy Hoffberger and the study participants and their study partners for their contributions to this work. We would also like to thank our community partners including Jewish Community Services, Levindale Hebrew Geriatric Center, and the Alzheimer’s Association Greater Maryland Chapter. This work was supported financially by the following organizations and individuals: The ASSOCIATED Jewish Community Federation of Baltimore, Harry & Jeannette Weinberg Foundation, Leonard & Helen R. Stulman Charitable Foundation, The Hoffberger Foundation, Hoffberger Family Fund, Leroy Hoffberger, David & Barbara B. Hirschhorn Foundation, Irving & Lois Blum Foundation, Leonor & Marc Blum, Lois Blum Feinblatt, Meyerhoff Family Charitable Foundations, and the Baltimore County Department of Aging. This work was also supported financially by Grant # K01MH085142 from the National Institute of Mental Health.

Conflict of interest

Under an agreement between DEMeasure and Drs. Black and Rabins, Dr. Black and Dr. Rabins are entitled to a share of income received by DEMeasure from sales of the ADRQL questionnaire and scale used in the study described in this article. Drs. Black and Rabins have ownership interests in DEMeasure. The terms of this arrangement are being managed by the Johns Hopkins University in accordance with its conflict of interest policies.

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Authors and Affiliations

  1. Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, 600 North Wolfe Street, Meyer Building 279, Baltimore, MD, 21287, USA

    Betty S. Black, Deirdre Johnston & Peter V. Rabins

  2. Dementia Care Consultation, LLC, P.O. Box 2, Arnold, MD, 21012, USA

    Ann Morrison

  3. Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, 5300 Alpha Commons Drive, 4th Floor, Baltimore, MD, 21224, USA

    Constantine G. Lyketsos

  4. Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, 550 North Broadway, Room 305, Baltimore, MD, 21205, USA

    Quincy M. Samus

Authors
  1. Betty S. Black
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  2. Deirdre Johnston
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  3. Ann Morrison
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  4. Peter V. Rabins
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  5. Constantine G. Lyketsos
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  6. Quincy M. Samus
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Corresponding author

Correspondence to Betty S. Black.

Appendix

Appendix

See Table 6.

Table 6 Dementia Care Needs Assessment (DCNA)
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Black, B.S., Johnston, D., Morrison, A. et al. Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures. Qual Life Res 21, 1379–1389 (2012). https://doi.org/10.1007/s11136-011-0044-z

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