Dementia, spirituality and palliative care

Palmer, J. et al. | Research literature on the intersection of dementia, spirituality, and palliative care: A scoping review | Journal of Pain and Symptom Management | published online | January 2020

Abstract

Context

Dementia marks an increasingly prevalent terminal illness for which palliative care, including spiritual care, could improve quality of life. Research gaps exist in understanding the intersection of dementia, spirituality, and palliative care.

Objectives

We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research.

Methods

The scoping review followed methods from The Joanna Briggs Institute Reviewers’ Manual (2015). We developed a priori a scoping review protocol outlining the Population, Concept and Context for study, data sources, search strategy, inclusion/exclusion criteria, and procedure for screening, extracting, and analyzing data.

Results

The final sample consisted of 19 studies with the following themes: Characterizing Spiritual Needs, Preferences, and Resources; Characterizing Palliative or Spiritual Care; Predicting Provision of Spiritual Care; and Assessing Spiritual Care Interventions. Eighteen studies were published in the past decade, and eleven were based in Europe. The majority of studies focused on long-term care settings, grouped stages of dementia or did not specify dementia stage, and investigated interventions indirectly related to spiritual care. Many studies were limited in sample size and in generalizability/ transferability and used less sophisticated research designs.

Conclusions

Research across dementia, spirituality, and palliative care needs to examine distinct stages of dementia, settings beyond long-term care, and formal spiritual care interventions plus utilize rigorous study designs (e.g., randomized clinical trials). Such research could advance practice and policy that enhance quality of life for tens of millions of persons with dementia and their family members worldwide.

Quality indicators to assess optimal palliative care for older people with dementia

This paper provides a summary of the quality indicators available to assess optimal palliative care in older people with dementia, and identifies the major gaps related to recommendations for which indicators remain to be developed | Palliative Medicine

Background:
A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.

Aim:
To identify and critically evaluate quality indicators for end-of-life care in dementia.

Results:
We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines.

Conclusions:
We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.

Full document: Amador, S. et al. | A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia | Palliative Medicine | 2019 Vol.33(4) | p415–429.

Factors influencing palliative care in advanced dementia: a systematic review

Mataqi M, Aslanpour Z | Factors influencing palliative care in advanced dementia: a systematic review | BMJ Supportive & Palliative Care | Published Online First: 03 April 2019

Abstract
Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs.

Aim: To investigate the factors influencing provision of PC services for people with advanced dementia.

Methods: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data.

Key findings: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning.

Conclusions: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.

Record £3.7m research grant to ‘transform’ palliative care for dementia

Researchers in London are aspiring to create a “step-change” in dementia care through an innovative study funded by a record-breaking grant | Nursing Times | The Carer

The largest ever research grant to improve palliative and end of life care for people with dementia and their carers in the UK (£3.7m) has been awarded to researchers at the Marie Curie Palliative Care Research Department, UCL, and the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Kings College London.

The grant will be used to fund research to help understand the current and future needs for dementia palliative care, how people with dementia move through the health and social care system and develop new ways to deliver these vital services. The research is one of four collaborative projects being funded by the ESRC-NIHR Dementia Research Initiative 2018, which aims to improve the lives of people living with dementia across the UK.

The team’s Empowering Better End of Life Dementia Care Programme (EMBED-Care) will develop new ways of supporting patients with advanced dementia, where they live and receive care. The terminal illness charity, Marie Curie, provides core funding to the Marie Curie Palliative Care Research Department, UCL, which includes posts dedicated to improving the evidence base for palliative and end of life dementia care. Determining a person’s palliative care needs, then initiating and delivering this care for patients with dementia was one of the research gaps identified by the Palliative and end of life care Priority Setting Partnership with the James Lind Alliance.

Full story: £3.7m Research Grant Set To Improve Care For People With Dementia | The Carer

Advance Care Planning for people with dementia

My future wishes: Advance Care Planning (ACP) for people with dementia in all settings | NHS England | Alzheimer’s Society | tide

Image source: http://www.england.nhs.uk

The guide provides signposting, information and support for colleagues in health, social and community care settings, around advance care planning for people living with  dementia. It identifies key actions from the point of an initial diagnosis of dementia through to the advanced condition, in order to highlight and prompt best practice irrespective of care setting.

It also considers situations where it has not been possible to initiate an ACP / future wishes conversation early and provides some tips on how to manage this.

The aim of this resource is to help practitioners, providers and health and social care commissioners:

• create opportunities for people living with dementia to develop an ACP through
  initiating and / or opening up conversations;
• ensure advance care planning is fully embedded in wider inclusive, personalised care and support planning for dementia;
• ensure people living with dementia have the same equal opportunities as those
  diagnosed with other life limiting conditions / diseases, in terms of accessing palliative care services / support.

Full document: My future wishes: Advance Care Planning (ACP) for people with dementia in all settings 

The prevalence of comorbid cancer and dementia

Findings suggest that dementia is associated with poorer cancer outcomes

Objectives: A comorbid diagnosis of cancer and dementia (cancer–dementia) may have unique implications for patient cancer-related experience. The objectives were to estimate prevalence of cancer–dementia and related experiences of people with dementia, their carers and cancer clinicians including cancer screening, diagnosis, treatment and palliative care.

Method: Databases were searched  using key terms such as dementia, cancer and experience. Inclusion criteria were as follows: (a) English language, (b) published any time until early 2016, (c) diagnosis of cancer–dementia and (d) original articles that assessed prevalence and/or cancer-related experiences including screening, cancer treatment and survival. Due to variations in study design and outcomes, study data were synthesised narratively.

Results: Forty-seven studies were included in the review with a mix of quantitative (n = 44) and qualitative (n = 3) methodologies. Thirty-four studies reported varied cancer–dementia prevalence rates (range 0.2%–45.6%); the others reported reduced likelihood of receiving: cancer screening, cancer staging information, cancer treatment with curative intent and pain management, compared to those with cancer only. The findings indicate poorer cancer-related clinical outcomes including late diagnosis and higher mortality rates in those with cancer–dementia despite greater health service use.

Conclusions: There is a dearth of good-quality evidence investigating the cancer–dementia prevalence and its implications for successful cancer treatment. Findings suggest that dementia is associated with poorer cancer outcomes although the reasons for this are not yet clear. Further research is needed to better understand the impact of cancer–dementia and enable patients, carers and clinicians to make informed cancer-related decisions.

Full reference: L. McWilliams, C et al. | A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care | Aging & Mental Health |  Published online: 18 Jul 2017

Deaths from dementia set to quadruple by 2040

The number of people who will die from dementia could almost quadruple over the next 20 years, suggests a study published in BMC Medicine | Story via OnMedica

Researchers analysed mortality statistics for England and Wales from 2006 to 2014 to estimate the prevalence of palliative care need in the population.

By using explicit assumptions about change in disease prevalence over time and official mortality forecasts, they modelled palliative care need up to 2040 as well as making projections for dementia, cancer and organ failure.

They calculated that by 2040, annual deaths in England and Wales could rise by at least 25.4% from 501,424 in 2014 to 628,659 in 2040.  If age and sex-specific percentages with palliative care needs remained the same as in 2014, the number of people requiring palliative care could grow by 25% from 375,398 to 469,305 people a year.

However, if the upward trend observed from 2006 to 2014 continued, they said, the increase could be as much as 47% more people needing palliative care by 2040 in England and Wales.

In addition, disease-specific projections showed that dementia (increasing from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) would be the main drivers of the growing need.

The authors concluded: ‘Our analysis indicates that palliative care need will grow far more over the next 25 years than previously expected’.

Full reference: Etkind, S. N et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017 15:102.

Palliative care interventions in advanced dementia

Murphy, E. et al. (2016) Cochrane Database of Systematic Reviews. Issue 12. Art. No.: CD011513.

Image source: Cochrane

Background: Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia.

Authors’ conclusions: Very little high quality work has been completed exploring palliative care interventions in advanced dementia. There were only two included studies in this review, with variation in the interventions and in the settings that made it impossible to conduct a meta-analysis of data for any outcome. Thus, we conclude that there is insufficient evidence to assess the effect of palliative care interventions in advanced dementia. The fact that there are six ongoing studies at the time of this review indicates an increased interest in this area by researchers, which is welcome and needed.

Read the full review here