Why Would Caregivers Not Want to Treat Their Relative's Alzheimer's Disease?

Authors

  • Jason H. T. Karlawish MD,

    1. From the Department of Medicine,
    2. Geriatrics
    3. Institute on Aging
    4. Leonard Davis Institute of Health Economics
    5. Center for Bioethics; University of Pennsylvania, Philadelphia, Pennsylvania
    6. Alzheimers Disease Center, Philadelphia, Pennsylvania.
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  • David J. Casarett MD,

    1. From the Department of Medicine,
    2. Geriatrics
    3. Institute on Aging
    4. Leonard Davis Institute of Health Economics
    5. Center for Bioethics; University of Pennsylvania, Philadelphia, Pennsylvania
    6. Center for Health Equity Research and Promotion, Philadelphia, Pennsylvania
    7. Philadelphia Veterans Affairs Medical Center, Philadelphia, Pennsylvania
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  • Bryan D. James Mbioethics,

    1. From the Department of Medicine,
    2. Geriatrics
    3. Alzheimers Disease Center, Philadelphia, Pennsylvania.
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  • Tom Tenhave PhD,

    1. Biostatistics and Epidemiology, and
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  • Christopher M. Clark MD,

    1. Neurology; Division of
    2. Institute on Aging
    3. Alzheimers Disease Center, Philadelphia, Pennsylvania.
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  • David A. Asch MD

    1. General Internal Medicine
    2. Institute on Aging
    3. Leonard Davis Institute of Health Economics
    4. Center for Bioethics; University of Pennsylvania, Philadelphia, Pennsylvania
    5. Center for Health Equity Research and Promotion, Philadelphia, Pennsylvania
    6. Philadelphia Veterans Affairs Medical Center, Philadelphia, Pennsylvania
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  • Dr. Karlawish is supported by a Paul Beeson Physician faculty Scholars Award, and National Institute on Aging (NIA) Grants K01 AG-00931 and P30-AG01024. Dr. Casarett is supported by a Health Services Research Career Development Award from the Department of Veterans Affairs and a Paul Beeson Physician Faculty Scholars Award. Dr. Clark is supported by NIA Grant P30-AG01024.

Address correspondence to Jason H. T. Karlawish, MD, Institute on Aging, 3615 Chestnut Street, Philadelphia, PA 19104. E-mail: jasonkar@mail.med.upenn.edu

Abstract

Objectives: To determine family caregivers' willingness to use Alzheimer's disease (AD)-slowing medicines and to examine the relationships between this willingness, dementia severity, and caregiver characteristics.

Design: Cross-sectional survey.

Setting: In-home interviews of patients from the Memory Disorders Clinic of the University of Pennsylvania's Alzheimer's Disease Center.

Participants: One hundred two caregivers of patients with mild to severe AD who were registered at an Alzheimer's disease center.

Measurements: Subjects participated in an in-home interview to assess their willingness to use a risk-free AD-slowing medicine and a medicine with 3% annual risk of gastrointestinal bleeding.

Results: Half of the patients had severe dementia (n=52). Seventeen (17%) of the caregivers did not want their relative to take a risk-free medicine that could slow AD. Half (n=52) did not want their relative to take an AD-slowing medicine that had a 3% annual risk of gastrointestinal bleeding. Caregivers who were more likely to forgo risk-free treatment of AD were older (odds ratio (OR)=1.7, P=.04), were depressed (OR=3.66, P=.03), had relatives living in a nursing home (OR=3.6, P=.02), had relatives with more-severe dementia according to the Mini-Mental State Examination (MMSE) (OR=2.29, P=.03) or Dementia Severity Rating Scale (DSRS) (OR=2.55, P=.002), and rated their relatives' quality of life (QOL) poorly on a single-item global rating (OR=0.25, P=.001) and the 13-item quality-of-life (QOL)-AD scale (OR=0.38, P=.002). Caregivers who were more likely to forgo a risky treatment were nonwhite (OR=6.53, P=.005), had financial burden (OR=2.93, P=.02), and rated their relative's QOL poorly on a single-item global rating (OR=0.61, P=.01) and the QOL-AD (OR=0.56, P=.01).

Conclusion: These results suggest that caregivers are generally willing to slow the progression of their relative's dementia even into the severe stage of the disease, especially if it can be done without risk to the patient. Clinical trials and practice guidelines should recognize that a caregiver's assessment of patient QOL and the factors that influence it affect a caregiver's willingness to use AD-slowing treatments.

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