Professor Josephine Clayton

Director of Palliative Care Research & Learning, The Palliative Centre, HammondCare

The importance of planning for end of life is well known yet healthcare professionals such as those in aged and primary care, often find it difficult to initiate these courageous end-of-life conversations.

Sadly, it is often the case that Australian aged care residents and clients living with dementia don’t have the same opportunities to express their needs and wishes for care at the end of life. [1] And access to palliative care and support for their families and carers during this difficult time is often lacking, resulting in avoidable suffering for the person with dementia and their loved ones.

Providing high-quality end-of-life care for people with dementia has been identified as a key challenge, due to a range of issues. People with dementia experience an uncertain illness and care trajectory, which can include repeated, stressful transitions between different care settings. During the final year of life, it is common for people with dementia to experience symptoms such as pain, agitation, pressure ulcers and pneumonia. A common misperception in the community, and even among some care providers, is that dementia is not a ‘terminal’ condition. [2]  This misunderstanding makes discussions and proactive planning about future care needs difficult, especially in aged care settings. [3]

The Advance Project Dementia aims to help address these needs and provide practical and accessible resources that build the confidence of aged and primary care professionals to initiate conversations that enable people living with dementia to experience quality end-of-life care.

Tailored resources for frontline staff working in aged and primary care

The Advance Project Dementia Toolkit includes dementia-specific training and resources, informed by literature reviews and extensive input and feedback from the expert advisory group, GPs, nurses, allied health professionals, aged and primary care managers, careworkers, and people living with dementia and their families.

The free online toolkit is specifically designed for clinicians, managers, and careworkers in aged care and primary care settings and builds skills in initiating conversations about advance care planning and assessing the palliative care needs of people living with dementia. Training videos and eLearning modules feature interactive case studies based on real-life scenarios and give frontline staff tips and strategies that promote confidence to start those challenging conversations with the person living with dementia and their families.

It’s important to have ongoing conversations about the person’s end-of-life wishes initiated by staff members who already know the person with dementia and their family, and in a way that is respectful, supportive, and centred to the care of the person. The resources support a relationship-based approach to care that enables people living with dementia to have the opportunity to express their needs and preferences for care at the end of life and have access to palliative care and support for their families and carers.

The Advance Project Dementia is part of the larger collaborative project led by HammondCare in collaboration with various health organisations and universities across Australia, including our key partner CareSearch from Flinders University. The Advance Project is one of the National Palliative Care Projects, funded by the Australian Government.

The Advance Dementia Toolkit: http://www.theadvanceproject.com.au/dementia

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Dr Angela Zhang

School of Social Sciences, Faculty of Arts, Business, Law and Economics, University of Adelaide.  

I met Mrs Joyceⁱ in a residential care facility in Adelaide, South Australia. Mrs Joyce was a resident who had difficulties with walking, and yet followed a daily walking routine. Although she relied on her walker and staff assistance for support, she withstood the pain and made her own efforts to continue to walk. Once, after a painfully slow walk from the dining area back to her room, she told me that she felt at home in the nursing home. Despite her expression of contentment and relief, I could not believe what she said truly conveyed her experience. Given her ailing body, and the long and difficult walk through the corridor of the facility, I was shocked, and I wrote in my fieldnotes: ‘It can’t be true, especially for an elderly lady with terminal cancer who is cared for every hour of the week in a nursing home.’ 

Good physical health is often thought of as critical to experiencing a sense of living well. The phrase ‘health and wellbeing’ captures this notion and is gaining increasing significance in the arena of health and social care. However, thinking about wellbeing within this framework can be puzzling, given that, in a medical model, health is often considered as the absence of disease. Like Mrs Joyce, older people ordinarily present age-related diseases which are chronic and associated with functional limitations. They often need to move from home into a nursing home, which drastically affects their ways of living as well as their sense of self and being.

Is it possible for aged care residents to experience a sense of wellbeing in the presence of disease and functional decline? In reflecting upon how I felt towards Mrs Joyce’s remark at that time of my fieldwork, I found that I had held the assumption that aged care residents could hardly feel well due to their conditions of being impaired and dependent on institutional care. The moment when Mrs Joyce shared her feelings constituted a pivotal shift in my thinking on the potential for older people to experience a sense of wellbeing and home in nursing homes. This became a turning point leading to fruitful fieldwork from which a book titled, ‘At home in a nursing home: An ethnography of movement and care in Australia’, was produced.    
  
This bookⁱⁱ describes how it was often through the most mundane everyday activities, like changing position from sitting to standing, walking or eating, that residents could, despite their bodily limitations, feel cared for and at home in a nursing home. They need the kind of care that responds to their innermost needs and desires, by generating for them new ways of moving with relative ease. I call this kind of care ‘right care’. The purpose of this book is to help those who care for older people to practise right care by understanding what right care is and how to deliver it for residents’ wellbeing.

ⁱ Pseudonym is used for resident participant’s name.

ⁱⁱ Introduction to book: https://www.berghahnbooks.com/title/ZhangAt

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care. 

Dr Katrina Erny-Albrecht

Senior Research Fellow, CareSearch and palliAGED, Flinders University.

Almost two decades ago Hawthorne and Yurkovich were moved by their observations to publish an article on Human relationship: The forgotten dynamic in palliative care. [1] An update of the palliAGED Practice Tip Sheets for careworkers and nurses new to palliative care was undertaken in early 2022 leading to the addition of five new topics. These topics had been called for by the aged care sector and reflect the very profound human experience of dying. Listening to the sector and updating resources aligns with the quality processes underpinning CareSearch and palliAGED content and products. [2] 
The five new topics underpin compassionate support for older people adjusting to end of life as a valued individual with both dignity and choice.

• Advanced dementia behavioural changes
• Complementary therapy
• Psychosocial assessment and care
• Quality of life with deterioration and change
• Supporting families

In Australia dementia is the leading cause of death among women, and for all people over the age of 85 years. [3] Behavioural and psychological changes associated with advanced dementia are challenging. At times they can be confronting as the person you have come to know becomes at times unrecognisable and displays behaviour that might have dismayed their former self. Experience and evidence tell us that a focus on the underlying factors is a more effective way to respond to these behavioural changes. The potential causes are many and varied, helping carers to recognise this and the signs as well as ways to respond is what the palliAGED Practice Tip Sheets now do.

Use of complementary therapy is very common among people living in Australia. An umbrella term for a range of therapies and practices varying widely from nutritional supplements, massage and music therapy to reflexology and acupuncture.  While they often lack an evidence base, what they have in common is the potential to help the person faced with a life-limiting illness to ‘escape’ or ‘live in the moment’. To support the role of care providers in ensuring that this is safely approached we provide tips on having this conversation.

End of life affects our emotions, thoughts, attitudes, motivation, and needs along with those of our families. It also affects our social circumstances such as relationships and living arrangements. The myriad of psychosocial changes and feelings faced often require major adjustment and can be overwhelming. Knowing how this might be expressed by an older person and their family members and how to respond compassionately makes a difference. Psychosocial assessment and reassessment help you to support people as a disease progresses and their needs and circumstances change.

Changing health status as a person’s condition deteriorates, can also impact quality of life. But not always. When it does the signs may be subtle or slow to develop. Being able to recognise these signs and suggest ways to support the person with activities that are meaningful to them can make a difference.
Supporting families is also part of palliative care. It is a natural extension of caring for older people as families are part of who they are and their meaning in life. Simply recognising the needs of an older person and their family and changing the way interactions are handled can be very impactful for them.
A recent review of patient perspectives on models of palliative care found that ‘best practice is defined more by the qualities and values embedded in the care provided, not a particular program structure or setting’. [4] The importance of this is clearly recognised by the Australian aged care sector community as they identified the need for these new topics to enhance quality of care. 

These Practice Tip Sheets for careworkers and nurses bring together research that help us to understand and measure what is happening with different ways in which we can personalise care and nurture relationships at the end of life.  Something Hawthorne and Yurkovich thought lacking and even impossible. [1]  
Reproduced with permission from CareSearch’s Palliative Perspectives.