Recently our WYLD members attended a debate organised by Capacity Australia. The debate examined the need and relevance of nursing homes from an international perspective.
The debate was Chaired by Human Rights Lawyer and UNSW Ageing Futures Institute member Professor Andrew Byrnes, with several international experts in ageing, aged care, law and social sciences arguing both sides of the question. Professor Henry Brodaty, took a position on the affirmative side and Institute Director Professor Kaarin Anstey helped set the scene with opening remarks alongside Royal Commission Assisting Counsel, Mr Paul Bolster and Professors Nahathai and Tinakon Wongpakaran from Chang Mai University, Thailand.
Thank you to Capacity Australia for supporting WYLD members in attending the event. This post is a collaborative effort showcasing the perspectives of WYLD members from the United Kingdom (England, Laura Booi), Asia (Singapore, Melissa Chan), Europe (Sweden, Katarzyna Hess-Wiktor), and North America (Canada, Karen Wong). We will give you our thoughts on what we heard.
Laura Booi PhD, Gerontologist, Co-Founder of WYLD, Newcastle University, UK
As a gerontologist much of my work focuses on nursing home issues, especially in relation to direct care providers in these settings, and the systemic difficulties surrounding their role. Agreeing with Professor Susan Kurrle, ‘the free market economy does not work well for vulnerable older adults in nursing homes’, nor does it work well for the marginalised, predominately migrant women workforce who are employed as direct care providers in these settings.
In this debate I was aware that there was no representation of the workforce in nursing homes. I understand that it is difficult to have this lived experience present because of socio-economic barriers preventing participation in academic discourse. Several of the speakers shared valuable stories of their parents who now live in nursing homes, but not a single ‘lived experience story’ was shared from a care provider’s perspective. How could the viewpoint and experiences of direct care providers in nursing homes have been brought to this debate? If we are genuinely debating ‘abolishing nursing homes’, shouldn’t we include both the residents’ and the staffs’ wellbeing, safety and security in this conversation?
We have heard how living in inadequate nursing homes affects residents’ quality of life, yet we need to give voice to how working in these settings also affects the direct care provider. Research shows that direct care providers are often inadequately trained for their role, asked to provide care for a dozen or more residents with complex needs, and suffer staggering rates of burnout, emotional distress and physical injuries on the job. We know the current system of nursing homes is not sustainable, what innovative solutions may be discussed regarding nursing home care, if there was representation from direct care providers?
Melissa Chan, President of WYLD, Founder Project We Forgot, Singapore
“Our homes echo who we are. We see ourselves mirrored in our surroundings, the small things, like a picture, a cup or a flower vase. Through time, our surroundings are reflective of who we are as well as constitutive of who we are. The home usually is the site for the concentration of memories. It is central to our human development. Do we stop developing as humans at a certain age?” – Professor. Gerard Quinn
While the debate explored the idea of removing the model of institutional care, it also highlighted that the gap of knowledge, skills and time, is often a struggle for a family to care for a loved one at home and in the community. Even if we were to encourage ageing at home, it is important that we think about the care infrastructure that ensures we keep social isolation at bay. Many of the speakers agreed that there isn’t a one-fixed model that we are after. It is about finding a model that interweaves structural support, as well as the needs and wants of a person.
As Professor Susan Kurrle rightly mentioned, “Rather than abolish all homes, let’s get rid of the bad ones and promote the good ones.” The first and crucial step is for us to openly discuss the implications of the current model and what that does to personhood. Only by acknowledging the gaps, can we work to progressively raise the bar by shining light on best practices, localising these models of care and building better residential homes.
Communities need to come together to redefine what residential care can look like. There is a big gap and a strong human need for us to rethink, reimagine and drive a paradigm shift toward an improved model of care. Let’s think out of the box so that people can genuinely age in place.
Katarzyna Hess-Wiktor PhD, Co-Founder & CEO, Minnity, Sweden
What struck me most was the contrast between Prof. Israel Doron’s conclusive argument for abolishing nursing homes (“You cannot take the institutional totalistic essence out of nursing homes”) and the picture painted by Prof. Titti Mattsson of seniors in Sweden claiming their rights to get a place at a nursing home to alleviate feelings of insecurity, loneliness and fear.
Would individual care at home solve the challenges experienced in a total institution? Would the residential settings in Covid-19 times reduce the feeling of insecurity, anxiety and loneliness? Probably not, and as the numbers show, many seniors in Sweden withdrew from accepting offers of places in nursing homes in the times of the pandemic and isolated in their homes often suffer from involuntary loneliness.
The debate showed that although we are not able to entirely eradicate the opposition beyond the needs of the individual and the group in nursing homes, we should facilitate it for the residents to negotiate the norms, rules and schedules to respect their personhood.
Karen Lok Yi Wong, Social Worker, University of British Columbia, Canada
As a social worker with experience practising in nursing homes, I would like to share my thoughts and reflections. I am more inclined to say that there is no clear-cut answer as to whether we should abolish nursing home or not. There are both positives and negatives of having or not having nursing homes. The key is whether we are able to include the voices of different stakeholders, especially the potential and existing service users of nursing homes, and work collaboratively together.
People are diverse. They have different health and mental health conditions and thus different care needs. However, they also have different capabilities to cope with these conditions and needs. Also, they have different identities (gender, social class, culture). These identities intersect, and place them in different social positions. Moreover, people have different support networks. For instance, some have families who can support them at home. Some have no families. Some have families who cannot support them at home because of personal conditions in their lives. Many speakers mentioned human rights. From the perspective of social work in a human rights framework, human rights involve having needs met. However, how the needs are met depends on person’s context. If we think about care contexts, people have different care needs. These needs should be met. However, how these needs are met depends on people’s contexts. It is a complex and interwoven framework, but I believe that people should be given the information and choices to decide how they would like their needs to be met depending on their contexts.
Final thoughts from the World Young Leaders in Dementia
The key takeaway from this debate is that although there were strong arguments for why nursing homes need to be abolished, there is a myriad of different types of nursing homes, all appealing to different populations and needs. As long as the desires of the resident are taken into account and their human rights upheld, it is the decision of the individual and their loved one regarding where they choose to live, and it is up to the government and industry to provide those options, where need be. The conversation surrounding human rights, care quality and wellbeing in nursing homes will not be going away, and we at WYLD look forward to being involved in future discussions and innovations in this area.
More information on the global debate can be found here: https://capacityaustralia.org.au/capacity-australia-international-debate-nursing-homes-should-be-abolished-september-2-2020/
Follow Capacity Australia’s work here: https://capacityaustralia.org.au/