The ‘natural’ endpoint of dementia: death from cachexia or dehydration following palliative care?

Koopmans, Raymond T.C.M.; Sterren, Karin J. M. A. van der; Steen, Jenny T. van der

doi:10.1002/gps.1680

Cited by 59 publications

(37 citation statements)

References 31 publications

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“…Within respiratory system disorder, the most common cause was pneumonia followed by choking on food. These results are consistent with the findings of a study that investigated the causes of death in 890 elderly individuals with dementia of various aetiology in nursing homes [28] . The 3 most prevalent causes of death were cachexia, cardiovascular disorders and pulmonary disease, mainly pneumonia.…”

Section: Discussionsupporting

confidence: 82%

Survival in a German Population with Frontotemporal Lobar Degeneration

Nunnemann

Schuster²,

Förstl³

et al. 2011

Neuroepidemiology

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Background: The present study aimed at analysing survival of patients with behavioural-variant frontotemporal dementia (bvFTD), semantic dementia (SD) and progressive non-fluent aphasia (PNFA). Furthermore, the objective of the study was to identify prognostic factors associated with survival and to examine causes of death. Methods: Interviews were performed with the proxies of 124 patients with frontotemporal lobar degeneration (FTLD). Results: Survival from the onset of first symptoms was significantly longer in SD than in bvFTD (10.5 years). Median survival in PNFA was 12.6 years. Age at onset, gender, education and severity of dementia at diagnosis did not significantly influence survival. We did not identify any phenocopy cases. The most frequent cause of death as reported by caregivers was respiratory system disorder. Conclusion: This study adds to the growing literature on survival in patients with FTLD and provides insights into the causes of death.

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Section: Discussionsupporting

confidence: 82%

Survival in a German Population with Frontotemporal Lobar Degeneration

Nunnemann

Schuster²,

Förstl³

et al. 2011

Neuroepidemiology

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“…It may be related to other problems, such as cognitive impairment, depression, or pain. [18][19][20][21] Often, such symptoms are also burdensome for families. 22 The multidisciplinary palliative approach may be helpful in anticipating, assessing and managing problems.…”

Section: A Palliative Care Approach Refers To All Treatment and Care mentioning

confidence: 99%

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

et al. 2013

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Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. Results: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. Conclusion:We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

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“…In nursing home-based samples, these conditions are also common causes, but about one-third of death certificates list the dementia itself (in a US study [8]), or cachexia/dehydration (in a Dutch study [9]). The difference may be due to recording practices in different settings.…”

Section: Death With Dementiamentioning

confidence: 99%

“…Not all patients reach the terminal phase with complete ADL-impairment, incontinence, and bedridden status. A Dutch study reported only 15% of nursing home residents with dementia ended their days in such condition [9]. Older age, male gender, comorbid disease, cognitive and functional status, and neuropsychiatric symptoms are all related to mortality [12,13].…”

Section: Death With Dementiamentioning

confidence: 99%

Dying with Dementia: What We Know after More than a Decade of Research

Steen

2010

JAD

Self Cite

224

177

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Abstract. Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underway in various countries. Guidelines for care and treatment, still mostly consensus-based, support the benefits of advance care planning, continuity of care, and family and practitioner education. Assessment tools for pain, prognosis, and family evaluations of care have been developed and some have been shown to be effective in clinical practice. With increasing numbers of well-designed, large-scale studies, research in the next decade may result in better evidence-based guidelines and practice.

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The ‘natural’ endpoint of dementia: death from cachexia or dehydration following palliative care?

Cited by 59 publications

References 31 publications

Survival in a German Population with Frontotemporal Lobar Degeneration

Survival in a German Population with Frontotemporal Lobar Degeneration

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

Dying with Dementia: What We Know after More than a Decade of Research

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