The Clinical Course of Advanced Dementia.
Open accessAbstract
BACKGROUND: Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not been well described. METHODS: We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents' survival, clinical complications, symptoms, and treatments and to determine the proxies' understanding of the residents' prognosis and the clinical complications expected in patients with advanced dementia. RESULTS: Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37). CONCLUSIONS: Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.
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Advance care planning is uncommon in clinical practice for individuals living with dementia.
“ACP is recommended for individuals living with dementia, yet it is uncommon in clinical practice [5–7].”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [7]
In Results (Health Care Proxies’ perceptions; page unavailable), only 18.0% of proxies for nursing-home residents with advanced dementia reported receiving prognostic information from a physician, and only 32.5% reported counseling about expected complications. These findings support that relevant discussions were uncommon in this setting, but the study did not measure advance care planning as a whole or establish its frequency among all individuals living with dementia. (LLM, conf=0.84)
Experimental — accuracy not yet measuredAdvance care planning is recommended for individuals living with dementia.
“ACP is recommended for individuals living with dementia”
From Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology (2022) · cites this paper as [7]
The Discussion says patients, families, and providers must be prepared for end-stage dementia, and links proxies’ understanding of prognosis with fewer burdensome interventions. It does not explicitly recommend advance care planning for all individuals living with dementia; its findings concern nursing-home residents with advanced dementia and their health care proxies. (LLM, conf=0.78)
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- Authors
- Mitchell, S. L., Teno, J. M., Kiely, D. K., Shaffer, M. L., Jones, R. N., Prigerson, H. G., Volicer, L., Givens, J. L., & Hamel, M. B.
- Affiliations
- Beth Israel Deaconess Medical Center (US)
- Brown University (US)
- Hebrew SeniorLife (US)
- Pennsylvania State University (US)
- Dana-Farber Cancer Institute (US)
- University of South Florida (US)
- Venue
- New England Journal of Medicine
- Publisher
- Massachusetts Medical Society
- Published
- 2009-10-15
- Volume
- 361
- Issue
- 16
- Pages
- 1529-1538
- ISSN
- 0028-4793 (ISSN-L)
- 1533-4406
- PMC
- PMC2778850
- OpenAlex
- W2119123819
- Cited by
- 1,618
- References
- 38
- Citations by year
- 2026: 56 · 2025: 55 · 2024: 83 · 2023: 86 · 2022: 109 · 2021: 97 · 2020: 140 · 2019: 107 · 2018: 94 · 2017: 113 · 2016: 99 · 2015: 109 · 2014: 124 · 2013: 102 · 2012: 92
- FWCI
- 80.96
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- New England Journal of Medicine (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (R01AG024091, K24AG033640)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Keywords
- advanced dementia, nursing home residents, clinical course, mortality, pneumonia, febrile episodes, feeding difficulties, dyspnea, pain, health care proxy, prognosis understanding, end-of-life care, palliative care
- MeSH terms
- Aged, Aged, 80 and over, Alzheimer Disease, Feeding and Eating Disorders, Dementia, Female, Fever, Hospitalization, Humans, Male, Nursing Homes, Parenteral Nutrition, Pneumonia, Prognosis, Prospective Studies, Terminal Care, Incidence, Survival Analysis, Proxy
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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