Dr Priyanka Vandersman

Research Fellow, End of Life Directions for Aged Care (ELDAC), Flinders University

The aged care sector provides care and services to over 80% of Australians who are in the last year of their life, with statistics indicating that the residential aged care sector cares for over a third of all deaths. Following the Royal Commission into aged care 2018-2021, added demands have been placed on the already busy and fast-paced aged care sector. The need for greater reporting and transparency, high standards of care, and effective organisational processes has been placed on the sector forcing it to think of innovative approaches of care planning and delivery, including the care provided to those who are at the end of life.

One of the ways of ushering innovation into aged care is via use of advanced digital technologies to improve care outcomes. Indeed, prioritisation of technology integration into aged care, including the use of digital care management systems, is one of the recommendations of the Royal Commission, and in line with the  Department of Health and Aged Care’s Digital Transformation Agenda. As work continues at the systems level to address structural barriers to change, opportunities currently exist across the aged care sector to embrace strong leadership and foresight around digital technology to ensure that organisations are prepared to meet requirements in the future.

The Technology and Innovations stream of the End of Life Directions for Aged Care (ELDAC) project aims to support the aged care sector in utilising technology to improve their end of life and palliative care practices. Housed within the Research Centre for Palliative Care Death and Dying (RePaDD) at Flinders University, this stream of ELDAC has developed a number of digital health tools to support aged care services’ palliative care planning and provisioning processes, one of which is the ELDAC digital dashboard.

The ELDAC digital dashboard is a system application that aged care providers can embed as part of their IT systems. It is designed to track and visually represent key end-of-life care processes and indicators – supporting a consistent and comprehensive approach to end of life. One of the unique abilities of the dashboard is that it uses existing data that is captured within the service’s clinical data management system, processes it, and provides a one-stop shop for clinicians to graphically view and track all relevant care activities relating to their residents/clients. There is no need to feed data to the dashboard, which makes it ideal for integration into existing systems.

Since its development in late 2019, the dashboard has not only been integrated into the systems of four aged care IT providers/teams but has also been road tested in the real world with a rigorous implementation trial being conducted at 14 residential aged care sites across Australia. The results indicate a reassuring openness among the aged care workforce to engage with technology and a notable ability of the dashboard to help nurses organise end-of-life care, and support audit and compliance activities while promoting accountability in the EOL processes at the service level.

So, what does the dashboard experience tell us about technology for palliative care in the aged care sector? Firstly, it shows us that well-designed and carefully implemented digital tools can appropriately support staff and services in identifying and responding to an older person’s needs as they move into the last months, or year, of life. Secondly, the dashboard offers an interesting example of how new technologies can enhance the capacity of existing systems. Finally, the dashboard experience demonstrates that the aged care workforce is open to engaging with novel technologies, if these technologies have the potential to help them provide better end-of-life and palliative care to their older residents/clients.

The need for and rate of integration to IT within aged care is going to move rapidly in the next few years. Services will need to build workforce capability and look at how core work can be supported by digital innovations that have meaning for the workforce and the residents or clients. Technology providers and project leaders will need to ensure that technology products represent good value not only financially, but in terms of their value to aged care and their responsibilities.

*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 Simone Marino, Postdoctoral Research Fellow

Social Care and Ageing (SAGE) Futures Lab, Edith Cowan University (ECU)

Dementia has become an epidemic with numbers projected to rise exponentially.

In Australia, this number includes people from culturally and linguistically diverse backgrounds (CaLD); and such diversity presents challenges to service delivery.

The existing literature reports that many existing aged care services in Australia do not adequately address the needs of Australia’s culturally diverse ageing population, particularly around ‘cultural safety’. Similarly, the Final Report of the Royal Commission into Aged Care Quality and Safety reported a lack of community support and social stimulation for individuals living with dementia, especially those from diverse backgrounds.

The Co-musichiamo project was inspired by the scarcity of studies involving people living with dementia from migrant backgrounds and their families, as well as the lack of appropriate services and resources to support their cultural wellbeing. Developed in collaboration with Professor Loretta Baldassar (Director of the ECU SAGE Lab), this project is located at the intersection of anthropology, ethnomusicology, ageing and dementia studies.

Co-musichiamo is a neologism evoking both the Italian term comunichiamo – ‘let’s communicate’, and musichiamo – ‘let’s make music together’.  Co-musichiamo explores the relevance of music, migration life-storytelling, and first language to support the wellbeing of people from culturally and linguistically diverse backgrounds living with dementia in Australia. This innovative idea uses reminiscence and autobiographic memory through the collection of oral histories with Italian migrants living with dementia and their families, both at home and in residential care, to co-create culturally tailored songs that support cultural identity and wellbeing.

Through a series of sessions involving participants and their family members, migrant stories and oral histories are collected, together with the soundscapes and individual soundtracks of participants’ lives, to co-create a song together. The songs feature the ipsissima verba – the very words that we all use in our narrative – which define the identity of a person, playing a pivotal role for their cultural memory and wellbeing to leverage identity. Music is known to release stress and nostalgia, reconnect socially, and facilitate retrieval of cultural memory. It is also a cultural strategy for the ‘loss of presence in the world’, as it is via the senses, that people can access ‘the original opening’, situated in one’s world.

The preliminary results of Co-musichiamo show that the co-creation of culturally tailored songs, composed and sung with the participants in their first/home language, can enhance physical and social engagement, and contribute to the general well-being of people from migrant backgrounds living with dementia. Participants demonstrated improvement in mood and increased communication.

Dementia Australia is very supportive and interested in the innovative idea of Co-musichiamo and the development and implementation of a music engagement intervention research project in residential and home care aged care settings.

*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.

 

About the author

Simone is based in Adelaide and has been a lecturer for more than 10 years at the University of South Australia, teaching sociology, migration and identity studies, and Italian studies. He is currently a Postdoctoral Research Fellow at the Social Care and Ageing (SAGE) Futures Lab at Edith Cowan University (ECU). His work in this role focuses on implementing social science approaches to support the development of social and community care interventions for the ageing and aged care sectors, with a particular focus on dementia.

Bridget Fraser, Colleen Doyle, and Anita Goh

National Ageing Research Institute

Researchers at National Ageing Research Institute compare the pre- and post-pandemic ‘rollercoaster’ media coverage of loneliness experienced by older people living in residential aged care and the social support available to them. They find an increased media focus on these issues during the pandemic that needs to translate into ongoing initiatives for improving the mental health and wellbeing of aged care residents.

One of the impacts of the COVID-19 pandemic was raising awareness of mental health and wellbeing. We all learnt to manage restrictions to movement and especially the ways we socialised and kept in contact with friends and family. However, prioritising physical health often meant mental health was challenged. Constant media reports about the dangers associated with the new virus bombarded us in 2020 and 2021. In 2022 media attention to COVID-19 has plummeted. This roller coaster of media coverage was nowhere more evident than in reporting about older people living in residential aged care.

We recently assessed how a major Australian newspaper reported on loneliness and social support of people living in residential aged care before the COVID-19 pandemic compared to during the pandemic. We conducted a search of The Age newspaper’s reporting of loneliness and social support in people living in residential aged care. The newspaper was chosen as the media source as it is a common and trusted source of health information in Australia, with 15.7 million Australians reading them in print or online (Roy Morgan, 2019). Articles were identified through the newspaper databases Factiva and NewsBank, alongside The Age online website. The two search periods were pre-pandemic (TP1 = January 2018 until December 2019) and during the pandemic (TP2= January 2020 until December 2021). Search terms: ‘nursing home’, ‘residential aged care’, or ‘aged care’ were used alongside at least one of the terms; ‘loneliness’, ‘befriending’, or ‘social support’. The inclusion criteria were broad and included news reports, opinion pieces, advertising features, TV show reviews, alongside spectrum, green guide, and lifestyle pieces.

Information about the article characteristics (i.e., format, source, author), the content presented, total word count, photos, or videos was analysed. The Table below shows that reporting increased markedly during the pandemic.

Table 1: Summary of the volume of articles published in two time periods

TP 1 (Jan 2018-Dec 2019)  n (%) TP 2 (Jan 2020-Dec 2021) n (%) Articles published* 19 27 Article type     News reports 14 (74%) 20 (74%) Opinion pieces 3 (16%) 3 (11%) Average word count 746 words 924 words Contained images** 6 (32%) 14 (52%) Contained videos 1 (5%) 9 (33%) Article entirely focused on loneliness in residential aged care*** 7 (37%) 10 (37%)

*These totals include The Age Online articles, which are duplicates of the articles that often contain additional words and include additional photos and videos. Four duplicates were published in TP1, and eight duplicates were published in TP2.

** Images were of aged care residents and paintings or drawings of aged care residents.

*** The remaining articles have up to four paragraphs dedicated to loneliness in aged care.

The themes of the articles differed between the two time periods. During TP1, 32% (n=6) of articles referred to a specific aged care facility, Trinity Manor and how it followed the Eden philosophy. In total, 63% (n=12) of TP1 articles reported ways that social support could be increased to reduce loneliness. A total of 21% (n=4) of TP1 articles mention an aged care resident by name. During TP2, 78% (n=21) of articles detailed the impact of COVID-19 on aged care residents, specifically due to the inability to have visitors. In total 59% (n=16) of these TP2 articles detailed the importance of having family members visit them. All up 30% (n=8) of TP1 articles specifically referred to programs that were in place to combat loneliness in aged care facilities, such as the ‘Conversation in Isolation’ project, the Commonwealth visitors scheme and the T.V show ‘Old peoples home for 4-year olds’. A total of 26% (n=7) of TP2 articles referred to health care services, especially the need for more staff in these aged care facilities. And 26% (n=7) of TP2 articles described the need for government funding to reduce loneliness in aged care facilities.

We found that during the pandemic there was an increase in The Age’s media coverage surrounding loneliness and social support in residential aged care. There were more opinion pieces published, longer articles published, and more supporting assets published alongside the article (images and videos).  

The pre-pandemic articles focussed more on specific aged care facilities, and on the ways that social support was already being provided to residents. There was some reporting on ways that social support could be increased to reduce loneliness, but these were not detailed. During the pandemic, the articles covered a larger breadth of topics relating to loneliness in aged care and reported more specific and detailed methods of improvement. There was a larger focus on different ways social support can be increased in aged care to reduce loneliness, for instance through government funding and improvements in health services, and especially encouraging family members to make contact.

Our analysis showed that the pandemic has resulted in increased media attention on loneliness in aged care as a situation that needs immediate solutions, and increased reporting of the need for social support to be increased. As the media move away from COVID-19 reporting, let’s hope that the raised awareness does not fade away but leads to ongoing action to improve the mental health and wellbeing of older people living in residential care.

*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.

 

Author information   

Bridget Fraser is a LaTrobe University student, enrolled in a Bachelor of Health Sciences and Public Health, who undertook this reported analysis as part of a placement at NARI.

Professor Colleen Doyle is Honorary Fellow at NARI and Honorary Professor at Swinburne University.

Dr Anita Goh is a senior research fellow at NARI and a clinical neuropsychologist. 

By Kristina Walsh

Southern Vales Compassionate Communities and College of Nursing and Health Sciences, Flinders University

Compassionate Communities are recognised globally as a public health approach to improving end of life within the community. [1] They do this by shifting the culture of the current medical model of palliative care to an approach that promotes and encourages community action in areas such as health literacy, supporting carers and families to receive home-based end-of-life care and developing social networks that care for each other. [2] These endeavours intend to complement and support the services that already exist by identifying gaps and developing initiatives to fill them. 

Since late 2020, I have had the pleasure of being part of the development of the first compassionate community in South Australia.  This was seeded and supported by the Peak Body, Palliative Care South Australia.  As a movement, compassionate communities are firmly rooted in the community development space, driving action that has impact on the local population and making sustainable changes.  It has at times been a challenge as a health professional with my feet concreted into practice development within the community nursing setting.  I am grateful for my previous work experience in primary care which helped to develop my awareness of the Ottawa Charter for Health Promotion, as driving community action has been central to this work.  In terms of sustainability, important connections for our compassionate communities were made with the Onkaparinga Council community development team and with other local community groups, such as Health Cities Onkaparinga.

To learn more about the development of a sustainable compassionate community, the Healthy End of Life Project [2] identifies community development practices that underpin areas for community-driven action.  It refers to aspects of community development such as leading from behind by mentoring, coaching and encouragement, drawing on community strengths, respecting community members’ knowledge and encouraging leadership.  From my experience, community development teams advocate for this and encourage sustainability by offering their support and guidance for long-term solutions.  Being underpinned by the Ottawa Charter, HELP [2] assert that all aspects of their guide are crucial to be of benefit to the population.  These include identifying people willing to carry out this work, whole community participation, helping people to understand who does what and community-generated programs that are creative and fun.  Collaboration that helps communities to connect and generate resources, as well as building partnerships across all sectors empowers sustainability.  Work involving planning at the community level (strategic) and the individual level, policy at local government, community and primary health care, medicine and community service organisations are all crucial to the sustainability of compassionate communities as a public health movement.  There are some elements of HELP seeded throughout my experience of helping to lay the foundations of a local compassionate community. 

After two years of building and sustaining our group, a creative collaboration has evolved between the Southern Vales Compassionate Communities and Healthy Cities Onkaparinga (HCO).  With HCO’s roots firmly held in that of the Ottawa Charter, work is underway to establish more compassionate community groups within the City of Onkaparinga in South Australia.  The Onkaparinga Compassionate Communities Collaborative (OCCC) is a one-year Project conceived by Healthy Cities Onkaparinga and the Southern Vales Compassionate Communities and funded by the Department of Health and Wellbeing through the 2022 Palliative Care Grants Program Round. The Vision for OCCC is for Onkaparinga to be recognised as a Compassionate Community where people feel supported to live and die well in accordance with their wishes, feel supported at times of grief and loss and have information and confidence to make choices about end-of-life experience and care.  The Southern Vales Compassionate Communities will continue to operate as one of the groups within the OCC Collaborative, providing mentorship and support to the groups that are established through this project.

The work of Southern Vales Compassionate Communities has been driven by our community.  The skills of those within our community who are interested in sharing compassion for one another to live, die and grieve well have been developed through empowerment and mentorship with our community members leading successful projects over the last 2 years.  This has included Death Cafes, Art for the Heart (grief peer support group), Peer Led Advance Care Directive workshop for over 50’s, as well as other small community offerings of support.  We have made connections with local carer support groups and plan to extend our networks with residential aged care, retirement villages and dementia support groups in the future.  

From my experience, the strength of our Compassionate Community has been determined by the individuals within it.  Collective leadership is most productive and one that is centred around empowering and supporting each other to lead programs that are sustainable and that are evaluated in a way that is suited to community development.  Measuring the success of this work must involve evidence of lived experience, storytelling, and narratives. [3] It is suggested by Horsfall et al. that the development of appropriate and realistic measures of impact and knowledge production in this area is important and that leaders in the field of research ‘must advocate for the value of alternative types of knowledge as being valid, meaningful and rigorous.’ [3, p.12] Often Compassionate Communities rely on grant funding for projects which at times may require impact measures that are not always reflective of measures that are more civic-centred.  This is particularly important when considering the evaluation of compassionate community projects. 

*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 Dr Trish Cain, Prof Davina Porock, A/Prof Eyal Gringart*

Centre for Research in Aged Care, Edith Cowan University

*Trish Cain, Davina Porock and Eyal Gringart are academic scholars and allies - not members of the LGBTI community

 

For many people, thoughts of needing aged care services are unnerving. For lesbian, gay, bisexual, transgender, and intersex (LGBTI) people, these thoughts can be especially daunting and complex. While facing many similar reservations as heterosexual and cisgendered communities, LGBTI older people must navigate a space shaped by historical legal, structural, and social exclusion. A fear of discrimination and biased care means that many Australian LGBTI older adults have negative expectations of service quality and are reluctant to engage with the aged care system. [1, 2]

While Australia may be considered a rapidly changing society with respect to LGBTI rights, many advances have been relatively recent [3] and for the current generation of LGBTI older adults, have occurred late in their lifetimes. Someone now aged 83, would have been 58 years old when homosexuality was decriminalised in Tasmania, 73 years old when their rights and needs were recognised by the LGBTI Ageing and Aged Care Strategy, and 78 years old when they could marry their partner. In the words of one LGBTI older adult: ‘I used to be illegal and now I’m a priority.’ [4]

Recent years have seen federal government-commissioned strategies [5] and targeted consultation [6] designed to foster inclusion and equity of care. However, the recent Royal Commission into Aged Care Quality and Safety highlighted many ongoing and unresolved issues. Extracts from publicly available witness statements and hearing testimony reveal several key concerns. For many LGBTI people, fear of discrimination remains, and as a result, some opt to hide their sexual identities. For example, ‘LGB people receiving home care services speak about the need to “straighten up their home” for fear of discrimination of poor care.’ [7] Concealing a part of one’s identity leads to being hidden in the system and needs remaining unmet.

To protect themselves, many will then hide or modify their identities, bodies, experiences, relationships, and/or attractions, rendering themselves invisible. This can lead service providers to assume they don’t have any L, G, B, T, or I clients and, therefore, that they do not need to consider their needs in service provision, planning and practice. [7]

Where there are attempts at inclusion, testimony suggests that while these may be well meaning, they are not always enough. ‘There is often a lot of goodwill around staff wearing rainbow badges or putting up welcome rainbow signs or stickers without actually doing anything to ensure the service is inclusive.’ [7]

The Royal Commission reports acknowledge that more work in this space is required. Fortunately, the way forward is relatively clear as ‘best practice approaches to LGBTIQ inclusive health and aged care service delivery are well understood in Australia, though they are not consistently implemented.’ [7] Changes in policies cannot ignore history. What is needed now is broad cultural change and a commitment to workforce training and education at all levels. It is only when everyone feels safe that Aged Care Quality Standard 1—’I am treated with dignity and respect and can maintain my identity’—can be said to be achieved. 

*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.