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

sad-505857_960_720.jpg

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

hands-2257419_960_720.jpg

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.

cochrane

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

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