Palliative care in dementia: issues and evidence

Hughes, Julian C.; Jolley, David; Jordan, Alice; Sampson, Elizabeth L

doi:10.1192/apt.bp.106.003442

Cited by 101 publications

(79 citation statements)

References 87 publications

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“…This review complements the work of others that have demonstrated how fragmented and descriptive research on end-of-life care for people with dementia is regardless of setting, and the absence of work that is dementia specific (Hughes et al, 2007). What this review starkly illustrates however, is the lack of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.…”

Section: Discussionmentioning

confidence: 67%

End of life care for community dwelling older people with dementia: an integrated review

Goodman

Evans

Wilcock

et al. 2009

Int J Geriat Psychiatry

106

102

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Objective: To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes). Design: An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list. Results: Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped into four broad categories: Dementia care towards the end of life, palliative symptom management for people with dementia, predicting the approach of death for people with dementia and decision-making. The majority of studies were descriptive. The few studies that developed dementia specific tools to guide end of life care and outcome measures specific to improve comfort and communication, demonstrated what could be achieved, and how much more needs to be done. Conclusions: Research on end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses. There is a need for investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.

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Section: Discussionmentioning

confidence: 67%

End of life care for community dwelling older people with dementia: an integrated review

Goodman

Evans

Wilcock

et al. 2009

Int J Geriat Psychiatry

106

102

View full text Add to dashboard Cite

show abstract

“…Evidence exists that the care of people with dementia, especially towards the end of their lives, is less than optimal (195). Palliative care stands well with the aims of person-centred dementia care and is beneficial in relation to caring for people with dementia.…”

Section: Palliative Carementioning

confidence: 99%

Nursing Students' Intentions to Work in Dementia Care: Influence of Age, Ageism, and Perceived Barriers

McKenzie

Brown

2014

Educational Gerontology

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“…93 Several reviews point unequivocally to the importance of adopting palliative approaches in the case of non-malignant diseases such as dementia, particularly in acute settings. [94][95][96] There is also continuing evidence of inequalities in referral to and use of specialist palliative care services for older people. 20 Older people are proportionally more likely to die from conditions other than cancer, and hence are disadvantaged in access to specialist palliative care services by diagnosis.…”

Section: Introductionmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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BackgroundImproving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guidance has been published regarding the management of palliative care transitions within this setting.Aims(1) to explore how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspective of clinicians and service users; (2) to examine the extent of potentially avoidable hospital admissions amongst hospital inpatients with palliative care needs.DesignA mixed-methods design was adopted in two hospitals in England, serving diverse patient populations. Methods included (1) two systematic reviews; (2) focus groups and interviews with 58 health-care professionals to explore barriers to, and facilitators of, palliative care transitions in hospital; (3) a hospital inpatient survey examining palliative care needs and aspects of management including a self-/proxy-completed questionnaire, a survey of medical and nursing staff and a case note review; (4) in-depth interviews with 15 patients with palliative care needs; (5) a retrospective case note review of all inpatients present in the hospital at the time of the survey who had died within the subsequent 12 months; and (6) focus groups with 83 key decision-makers to explore the implications of the findings for service delivery and policy.ResultsOf the 514 patients in the inpatient survey sample, just over one-third (n = 185, 36.0%) met one or more of the Gold Standards Framework (GSF) prognostic indicator criteria for palliative care needs. The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Agreement between medical and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor. In focus groups, health professionals reported difficulties in recognising that a patient had entered the last 12 months of life. In-depth interviews with patients found that many of those interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. The retrospective case note review found that 35 (7.2%) admissions were potentially avoidable. The potential annual cost saving across both hospitals of preventing these admissions was approximately £5.3M. However, a 2- or 3-day reduction in length of stay for these admissions would result in an annual cost saving of £21.6M or £32.4M respectively.ConclusionsPatients with palliative care needs represent a significant proportion of the hospital inpatient population. There is a significant gap between NHS policy regarding palliative and end-of-life care management in acute hospitals in England and current practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Palliative care in dementia: issues and evidence

Cited by 101 publications

References 87 publications

End of life care for community dwelling older people with dementia: an integrated review

End of life care for community dwelling older people with dementia: an integrated review

Nursing Students' Intentions to Work in Dementia Care: Influence of Age, Ageism, and Perceived Barriers

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

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