Nurses’ experiences of pain management for people with advanced dementia approaching the end of life

De Witt Jansen, B. et al. (2017) Journal of Clinical Nursing. 26(9-10) pp. 1234–1244

Aims and objectives: To explore hospice, acute care and nursing home nurses’ experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

Background: Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care.

Conclusions: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

Relevance to clinical practice: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.

Read the abstract here

Family caregivers’ conceptualisation of quality end-of-life care for people with dementia

Davies, N. et al. Palliative Medicine. Published online: October 25, 2016

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.

Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.

Design: Qualitative study using in-depth interviews and analysed using thematic analysis.

Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.

Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.

Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Read the full article here

Increase in the number of people dying with dementia

Public Health England has published a range of products which examine the deaths of people recorded with dementia between 2012 and 2014.

Figures show the number of deaths with a mention of dementia was:

  • 6.6% of all deaths in 2001
  • 15.8% of deaths in 2014

This is most likely due to an increase in awareness and recording of dementia.

New reports have been produced by the Dementia Intelligence Network (DIN) in collaboration with the National End of Life Care Intelligence Network (NEoLCIN) and draw on national data to see if there have been changes in dementia deaths over time, who the people dying with dementia are, where they die and the cause of their death.

The findings suggest that people who live in more deprived areas die with dementia at a younger age than those who live in more affluent areas.

There are also considerable differences between the place of death for people who have dementia and the general population. People with dementia are considerably more likely to die in hospitals and care homes and less likely to die at home or in end of life care settings such as hospices.

Read the Dementia Intelligence Network (DIN) and the National End of Life Care Intelligence Network (NEOLCIN) reports here

Read the PHE press release here 

Image source:

Dementia map | Showing how regions prevent, diagnose, support and care for dementia patients

Department of Health | Published online: 16 August 2016

For many of us, the first time we hear about dementia might be when an elderly relative is rushed to A&E for something seemingly unrelated. How alert is your hospital to dementia? What is the prognosis for those who are admitted? How long are they likely to stay?

dementia map
Image source: DoH

View the interactive Dementia Map here

Systems to identify potentially inappropriate prescribing in people with advanced dementia: a systematic review

Disalvo, D. et al. BMC Geriatrics. 2016; 16: 114.

Image source: George Hodan // CC0

Background: Systems for identifying potentially inappropriate medications in older adults are not immediately transferrable to advanced dementia, where the management goal is palliation. The aim of the systematic review was to identify and synthesise published systems and make recommendations for identifying potentially inappropriate prescribing in advanced dementia.

Methods: Studies were included if published in a peer-reviewed English language journal and concerned with identifying the appropriateness or otherwise of medications in advanced dementia or dementia and palliative care. The quality of each study was rated using the STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) checklist. Synthesis was narrative due to heterogeneity among designs and measures. Medline (OVID), CINAHL, the Cochrane Database of Systematic Reviews (2005 – August 2014) and AMED were searched in October 2014. Reference lists of relevant reviews and included articles were searched manually.

Results: Eight studies were included, all of which were scored a high quality using the STROBE checklist. Five studies used the same system developed by the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program. One study used number of medications as an index, and two studies surveyed health professionals’ opinions on appropriateness of specific medications in different clinical scenarios.

Conclusions: Future research is needed to develop and validate systems with clinical utility for improving safety and quality of prescribing in advanced dementia. Systems should account for individual clinical context and distinguish between deprescribing and initiation of medications.

Read the full article here

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

Saini, G. et al. BMC Palliative Care. Published online: 7 July 2016

Background: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.

Methods: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.

Results: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.

Conclusions: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

Read the full article here

Palliative care, personhood and ethics in dementia

Royal Society of Medicine: Published on Feb 1, 2016

To watch the full lecture visit:

About this lecture: Dr Julian Hughes discusses the philosophical aspects of caring for patients with dementia nearing the end of life. Dr Hughes covers clinical issues in palliative care and the ethics of treating a patient with dementia. Dr Hughes also finds a philosophical explanation of personhood and the soul.

This lecture was part of the ‘Mind, body and soul: an update on psychiatric, philosophical and legal aspects of care of patients nearing the end of life’ event at The Royal Society of Medicine in London.

Advance care planning for people with dementia living in long-term care settings

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

Full reference: Esther-Ruth Beck. Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature. Dementia. Published online before print September 16

Advance care planning and palliative medicine in advanced dementia: a literature review

Advance care planning is a targeted intervention that promotes autonomy for end-of-life decisions. It is particularly important in dementia where the illness impairs individuals’ decision-making abilities. Patients with advancing dementia experience significant comorbidities such as malnutrition and dehydration. They may have no advance care plan (ACP) in place and this can pose difficult management questions for their families and attending physicians concerning palliation and end-of-life care.

This narrative review aims to assess the factors that affect the clinical use of advanced care planning and palliative care interventions in patients with dementia, and to help guide future primary research, systematic reviews and service development in the UK.

Fulll text available at The British Journal of Psychiatry

Advance care planning and palliative medicine in advanced dementia: a literature review. ,

Expert views on the factors enabling good end of life care for people with dementia: a qualitative study

BMC Palliative Care 2015, 14:32

Dementia, of all long term illnesses, accounts for the greatest chronic disease burden, and the number of people with age-related diseases like dementia is predicted to double by 2040. People with advanced dementia experience similar symptoms to those dying with cancer yet professional carers find prognostication difficult and struggle to meet palliative care needs, with physical symptoms undetected and untreated. While elements of good practice in this area have been identified in theory, the factors which enable such good practice to be implemented in real world practice need to be better understood. The aim of this study was to determine expert views on the key factors influencing good practice in end of life care for people with dementia.

Semi-structured telephone and face-to-face interviews with topic guide, verbatim transcription and thematic analysis. Interviews were conducted with experts in dementia care and/or palliative care in England (n = 30).

Four key factors influencing good practice in end of life care for people with dementia were identified from the expert interviews: leadership and management of care, integrating clinical expertise, continuity of care, and use of guidelines.

The relationships between the four key factors are important. Leadership and management of care have implications for the successful implementation of guidelines, while the appropriate and timely use of clinical expertise could prevent hospitalisation and ensure continuity of care. A lack of integration across health and social care can undermine continuity of care. Further work is needed to understand how existing guidelines and tools contribute to good practice.

This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

via BMC Palliative Care | Abstract | Expert views on the factors enabling good end of life care for people with dementia: a qualitative study.