End-of-life care for people living with dementia in residential aged care: Strategies informed by practice

End-of-life care for people living with dementia in residential aged care: Strategies informed by practice

An article written by Madeleine Juhrmann, Josephine Clayton and Jon San Martin, HammondCare

A recent Australian study explored the experiences of 56 residential aged care staff in providing end-of-life care to people with advanced dementia. Madeleine Juhrmann, Jon San Martin and Josephine Clayton of HammondCare explain what this research discovered and suggests some implications for aged care.

Why was it important for your team to do this research?

Dementia is leading cause of death for Australian women and second leading cause, after coronary heart disease, for men. According to the Australian Government’s Institute for Health and Welfare, residential aged care homes (care homes) are the second most common place of death, accounting for 36 percent in 2021, which increases to 50 percent for people aged over 85. Given Australia’s ageing population, increasing prevalence of dementia, and the findings of the Royal Commission into Aged Care Quality and Safety highlighting significant gaps in current models of palliative aged care, the impetus for understanding strategies for improving palliative and end-of-life care in these settings has never been so important.

What did you find out?

Our study explored the perspectives and experiences of 56 aged care staff, including residential managers, nurses, careworkers, pastoral care workers and volunteers, providing palliative and end-of-life care to people living with dementia across care homes. Our findings suggest these staff members are committed to providing person-centred palliative and end-of-life care for people living with dementia, recognising the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.

As part of our analysis, we developed a summary table (see Table 2 in the paper)  outlining the key areas participants identified could be improved and suggested strategies to address these issues. These include (amongst others):

  • Promoting family awareness of and acceptance of the terminal nature and stages of dementia, death, dying and palliative approaches using accessible language
  • Making advance care planning a national requirement for entry into a care home
  • Mandating essential palliative care experience training for all staff and volunteers, including care home affiliated GPs.
  • Developing a palliative care committee of champions in the care home, with representation across all staff roles.
  • Enabling staff to participate in cultural rituals related to residents dying.
  • Allocating an extra staff member on shift when a resident is nearing end-of-life.
  • Ensuring end-of-life medications and equipment are always readily available on site in case of unexpected resident deterioration ….

Did any of the findings surprise you?

It was surprising, but reassuring, to hear many of these suggested strategies could be easily implemented into most care homes. ‘Ensuring 24/7 visitor access to care homes’, ‘revisiting advance care planning with the resident (where possible) and/or the family/substitute decision maker soon after admission’, and ‘rostering regular staffing patterns to promote continuity of care’ were some examples of practical measures that could be adopted by most care homes immediately, in turn having the capacity to significantly improve the quality of palliative and end-of-life care being delivered in these settings.

What do you see as the major implications of the study for the wider aged care workforce?

Our findings make practical recommendations for improving the quality of palliative and end-of-life care, summarised by the perceptions and experiences of aged care staff working on the frontline. Within the discussion of our study, we compare and contrast our findings with international best practice evidence, highlighting the similarity in suggestions being made across all studies and reinforcing the strength of our conclusions. The data driven and practical strategies outlined above and discussed in more detail in the paper have the potential to be readily translated into practice to help improve palliative care for aged care residents living with dementa.

Research has the potential to have a positive impact on individuals and societies. What do you hope the impact of this research will be? 

We hope to see the findings put forward in this study build on a growing body of literature, which supports the inclusion of high-quality palliative and end-of-life care for people living with dementia in aged care. Empowering the aged care workforce to deliver excellent care through targeted strategies will facilitate evidence-based improvements.

 

Authors



Madeleine Juhrmann 

HammondCare 

 

 



Jon San Martin

HammondCare 



 



Professor Josephine Clayton

HammondCare 


 


Reference

  1. Juhrmann ML, San Martin A, Jaure A, Poulos CJ, Clayton JM. Staff perspectives on end-of-life care for people living with dementia in residential aged care homes: Qualitative study. Front Psychiatry. 2023 Apr 25;14:1137970.
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1 comments on article "End-of-life care for people living with dementia in residential aged care: Strategies informed by practice"

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Marie

Good work.As a partner of a late stage dementia patient in care home I would welcome a study about the benefits/drawbacks of visiting and effects on patient and visitor in this long term and unpredictable illness

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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.