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Cited by 142Palliative Care and End-of-Life IssuesPalliative and Oncologic CareGeriatric Care and Nursing Homes

Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care

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Shega, Joseph W., Hougham, Gavin W., Stocking, Carol B., Cox-Hayley, Deon, Sachs, Greg A.·2008·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2007.06.011
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Abstract

To evaluate the impact hospice enrollment has on the terminal care of patients with dementia and describe the symptom burden these patients experience, caregivers of dementia decedents were assessed in a mortality follow-back survey. Patients had been managed through academic outpatient geriatric clinics in Chicago, IL. A total of 135 family members or other knowledgeable informants of persons who had died with dementia were queried about the patient's preferred location of death, location of death, satisfaction with patient care, and assessment of patient's pain and most bothersome symptom. Patients who were enrolled in hospice were significantly more likely to die in their location of choice (odds ratio [OR] 9.67; 95% confidence interval [CI] 2.57-37.0), and less likely to die in the hospital, (OR 0.04; 95% CI 0.01-0.18), compared to nonenrollees. Caregivers of hospice enrollees were more likely to rate patient care as excellent or very good (OR 5.65; 95% CI 2.61-10.34), compared to nonenrollees. Over 50% of caregivers of hospice enrollees and nonenrollees reported patient pain at a moderate intensity or higher on average in the last two weeks of life. No effect was observed between a caregiver reporting pain at a moderate level or higher and whether the patient was enrolled in hospice (OR 0.58; 95% CI 0.22-1.54). Hospice enrollees did not experience improvement in their most bothersome symptom's frequency, severity, or amount of distress caused (P=0.21, 0.39, 0.95, respectively), compared to nonenrollees. These results suggest that dying patients with dementia who are enrolled in hospice programs are more likely to die in their locations of choice and their caregivers are more likely to perceive that care is excellent or good than those who do not obtain hospice services. No effect on pain or other symptoms could be demonstrated in this analysis.

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  • Satisfaction with medical care is higher for families of individuals with dementia who are enrolled in hospice care than for families of individuals with dementia not enrolled in hospice care.

    “Satisfaction with medical care is higher for families of individuals with dementia who are enrolled in hospice care than for families of individuals with dementia not enrolled in hospice care. 937”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [937]

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Research works printed but not linked: 2

  1. Virnig B, Marshall M, Kind S, Dholakia R. Hos- pice use before death: variability across cancer diagnosis. Med Care 2002;40(1):73e78.
  2. McCarthy M, Addington-Hall J, Altman D. The experience of dying with dementia: a retrospective review. Int J Geriatr Psychiatry 1997;12:404e409.

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Authors
Shega, J. W., Hougham, G. W., Stocking, C. B., Cox-Hayley, D., & Sachs, G. A.
Affiliations
  • Northwestern University (US)
  • John A. Hartford Foundation (US)
  • University of Chicago (US)
Corresponding author
Shega, Joseph W.
ORCID
Hougham, Gavin W.
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2008-05
Volume
35
Issue
5
Pages
499-507
ISSN
0885-3924 (ISSN-L)
DOI
10.1016/j.jpainsymman.2007.06.011
OpenAlex
W2116358077
Cited by
142
References
37
Citations by year
2026: 1 · 2025: 6 · 2024: 5 · 2023: 9 · 2022: 13 · 2021: 7 · 2020: 9 · 2019: 7 · 2018: 6 · 2017: 6 · 2016: 6 · 2015: 12 · 2014: 14 · 2013: 6 · 2012: 9
FWCI
8.61
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
Funders
National Institute on Aging (K12AG00488-10, K12AG000488)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
Keywords
dementia, hospice care, end-of-life care, symptom burden, pain, caregiver satisfaction, place of death, hospice enrollment, most bothersome symptom
MeSH terms
Aged, Aged, 80 and over, Analysis of Variance, Data Interpretation, Statistical, Death, Dementia, Family, Female, Humans, Male, Caregivers, Hospice Care

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