By Judith Leeson

Director Vector Consultants, Career Development Counsellor and Coach/Hope Filled Engagement

I wonder if, like me, you are sitting in your favourite chair reflecting on the years that have passed, and those to come, and wondering how your future will look. At present I am coping with somewhat limited physical abilities, living independently with my husband on our small rural property and trying to imagine what the transition from Home Care Support to residential care may look like, if or when needed.

My day is lived exactly how I want to live, after six decades of paid employment- sleep in until 9 am, breakfast in my dressing gown, shower, put on farm- sensible clothes, and go out into the garden. There I am able to closely inspect our veggie garden, and herbaceous border, pull up some stray weeds and make a secret list of tasks for my husband.

My next enjoyable task is to check and respond to my emails, read the world news on the internet, and look for learning opportunities where I am able to enrol in stimulating webinars that match my interests and my values. I then reply to messages from family, friends and colleagues, and compose provoking responses to people on LinkedIn and Facebook. Lunch on leftovers with my husband, and then a whole afternoon to do exactly what pleases me, and also is of use to the community. Some days it is reading, others coffee and shared cake with friends, movies, visits with the Garden Club, attending Board meetings, dozing in my chair, feeding the chooks, picking the roses, and planning the evening meal.

All of these activities have meaning, contribute to my purpose-driven life, and are just a small portion of what I do throughout my day – but no day is the same, as I respond to the outside world, and try to sustain the important relationships I enjoy.

So, what are meaningful activities? For me, they are those which allow me to express my interests, and my values, and to build on my experience through learning new and useful skills. Some of them enable me to continue my life of supported independence, those which enable me to explore the world, sometimes by proxy, and continue to initiate and maintain meaningful relationships. My voluntary work is very important to me, and I am trying to make a difference where I can, so I read widely and write down my thoughts.

Does your day resemble mine? What has meaning for you and makes your day sing? Would you like to share some of my daily activities in residential care, or would the prospect fill you with horror? Let’s hope that there will be an affectionate dog, a lazy demanding cat, and some chooks in the garden so that we can engage with them, feed and love them. Perhaps there will be a small library, even a book club, classes in painting or craft, some classical music performances, opportunities to be involved in the University of the Third Age, immersive travel experiences using virtual reality, a woodworking shed, cooking for fun (with lots of chillies), a garden to tend, and veggies to include in our menu, even an elegant bar for sundowners, and a special space for reading? What support, if any, would you need to choose your daily activities so that you continue to have a meaningful life in residential care?

How would you like to transition into residential care from where you live, or from hospital if you have been ill or had an accident?  On my first day in residential care, when everything is strange and new, I would like to sit with someone who is genuinely interested in the life I have left behind, the previous day in fact. I would want to continue the life I had and be able to select daily activities that have purpose and meaning for me. I would want my choices from yesterday acknowledged today as being of importance and meaningful to me. I would want real challenges, but genuine support to engage with my family, friends and the world as I had done yesterday.

If I have early dementia, I may need assistance to undertake meaningful activities during my day but substituting any with little or no meaning for me would further reduce my capacity to make decisions and continue to learn. Meaningful activities are motivated by our interests, values, preferences and past experience, and often involve learning. They cannot be superimposed or reduced to meaningless tasks. Without our story to inform our daily lives, activities can be mindless, filling in time without purpose, blankly watching a television program aimed at adolescents. 

So, dear reader, how would you want to spend your days in residential care? We are all unique individuals, with unique life histories, so what activities would be meaningful to you?  If my short list of activities that would be meaningful to me is not of interest to you, what would you choose?

Please let me know, dear reader so that we can transform our future in aged care, our lives continue to have purpose and meaning, and our days continue with hope-filled engagement.

*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.

By Hilary O’Connell

Wellness and Reablement Lead, iLA.

The Australian population continues to increase in age and supporting older Australians to live well and have the best quality of life for as long as possible is a key government objective.

Ageing is a normal experience for everyone and affects people differently through their lifespan. Healthy ageing means different things to different people. To some it might mean living independently at home, for others, it means having the best possible physical and mental health or maintaining social connections with family, friends, and the wider community.

As we age, for some people, managing everyday activities of daily living can become compromised and support from the aged care system may be sought. At this stage, the response is often for services to be provided such as cleaning, personal care, social support, and meals to compensate for what a person is having difficulty doing as opposed to providing support to help a person retain or regain their capacity to manage, without that support.

Whilst ageing itself is inevitable, how we age according to the World Health Organisation (WHO) is prefaced by healthy behaviours throughout life. WHO defines healthy ageing as ‘the process of developing and maintaining the functional ability that enables wellbeing in older age’ and ‘creating the environments and opportunities that enable people to be and do what they value throughout their lives’. [1]

Importantly, WHO reiterates that being free of disease or infirmity is not a requirement for healthy ageing as many older adults have one or more health conditions that, when well controlled, have little influence on their wellbeing.

Maximising a person’s chance of ageing as well as possible

In the context of WHO’s definition of healthy ageing and the need to create the environments and opportunities that enable people to live and age well, how do we better support people to:

• move more/be physically active
• maintain a balanced diet
• be socially connected
• stay cognitively sharp
• maintain a sense of purpose and,
• have a positive attitude towards ageing.

And importantly for older Australians receiving support from the aged care system, how do we move away from predominantly task-based care delivery to supports that actively enable and maximise a person’s capacity, health and wellbeing?

Changing the discourse

The need to change the discourse within the aged care sector to one which has a preventative focus was identified in the 2021 Royal Commission into Aged Care Quality and Safety Final Report. The report referenced the need for a greater focus on healthy ageing and reablement, and a requirement for increased access to preventative care and early intervention to address risk factors that delay the need for aged care services. [2]

Additionally, the Australian Government’s Commonwealth Home Support Program requires service providers to deliver support within the context of a wellness, reablement or restorative care approach. This means providers need to focus on supporting older Australians to actively retain and/or regain their highest level of function, independence, and confidence to manage daily living activities and in so doing reduce their need for longer-term support.

Yet despite the plethora of information around how age-related decline can be minimised through reabling approaches, there continues to be an entrenched stereotype of individual ageing as an inevitable process of decline and degeneration over which we have little control. And worryingly a seeming lack of association between the abundance of information available about how to actively support people to retain and/or regain capacity and the delivery of aged care services.

Everyone should have access to the information and support they need

LiveUp is an initiative launched in 2022, to bridge this important interface between promoting healthy ageing behaviours and empowering older Australians to remain independent for longer. Developed by iLA with funding from the Australian Government Department of Health and Ageing, LiveUp is a free national healthy ageing platform designed to promote early intervention and delay the premature decline of a person’s capacity to live or function independently. The site, liveup.org.au, is a valuable resource not only for individuals but also for aged care providers and can help people take what could be seen as an investment approach to ageing, to help us think about what healthy ageing looks like and consider how we want to live our later years. With the knowledge that even small changes make a big difference.

LiveUp offers an online quiz, screening tool, and access to impartial information and personalised suggestions. The site encourages people to take action. This might include making a minor lifestyle modification to optimise their level of ability, commencing an exercise routine, self-selecting and purchasing a low-cost assistive technology product, connecting with locally relevant activities and community support or contacting My Aged Care. LiveUp also features regularly updated healthy ageing articles designed to provide information on various age-related issues, and people can join their online community – the ConnectUp Facebook Group - to share their healthy ageing journey, ask questions and support others to optimise their health and wellbeing.

It is never too early or too late

We all know there are everyday things that we can do to help us fully live our later years. The premise of LiveUp is that by helping people understand how to take control of many of the changes that occur as we all age, people can take action and continue to enjoy the highest quality of life. The site highlights the importance of that old adage, ‘use it or lose it’–something that is relevant to us all.

*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.

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.

 

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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.