Better palliative care for people with a dementia

Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such | BMC Palliative Care

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Image source: Susan Lockhart – Wellcome Images // CC BY-NC-ND 4.0

Background: People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.

Main body: An interdisciplinary workshop on “Palliative Care in Neurodegeneration, with a focus on Dementia”, was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify ‘gaps’ for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended.

Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.

Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

Full reference: Fox, S. et al. (2017) Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliative Care. Vol. 17 (no. 9)

Dementia Caregiver Grief and Bereavement

Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research

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The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:

(a) a lack of ethnic and gender diversity among caregivers studied,

(b) limited use of valid instruments to study dementia caregiver grief and bereavement,

(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,

(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement

(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

Full reference: Arruda, E.H. et al. (2017) Dementia Caregiver Grief and Bereavement: An Integrative Review. Western Journal of Nursing Research. Vol.  39 (no. 6) pp. 825-851

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

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 | Journal of Clinical Nursing

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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.

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.

Full reference: De Witt Jansen, B. et al. Nurses’ experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study. Journal of Clinical Nursing. 26,(9-10) pp. 1234–1244

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

hospital-bed-315869_1280Researchers 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.

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

Palliative care interventions in advanced dementia

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

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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

 

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