Compassionate aged care requires more than efficiently run facilities – it requires the creation of nurturing homes.
The Royal Commission into aged care is now under way, inquiring into the extent to which agencies can best meet the needs of the people in their care, and the causes of any systemic failures. The commissioners are also focusing on the increasing number of Australians living with dementia, and the importance of dementia care within aged care services.
To go beyond organisational infrastructure and service delivery needs, the Royal Commission ought to be asking questions such as: How can we show empathy to those whose ability to relate to the others is reduced by their deteriorating brain? How do we ensure that each person is individually honoured in the end stage of their life?
Ensuring aged care services are person-centred will require investigations into how those living in aged care can exercise greater choice, control and independence in relation to their care, and how improvements between families and carers on care-related matters can be improved.
In order to make that quantum leap, they will need to take into account the new understanding coming from the science of compassion. Better understanding the nature of the ageing process and the factors that result in dementia is vital in developing new approaches to aged care and a better awareness of the nature of dementia.
Alzheimer’s is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer's disease accounts for 60 to 80 per cent of dementia cases.
Valuing and honouring the end of a human life needs to take into account the complexity of the human brain; and that complexity is astounding. It is estimated there are 300 times more connections in the human brain than there are galaxies in the Milky Way. One of the largest studies into Alzheimer’s was undertaken in the Nuns study which began in 1986, focused on a large group of American Catholic sisters.
This study allowed for research into a relatively homogeneous group (no drug use, little or no alcohol, similar housing and reproductive histories) and found how dramatically pathology alone can mislead. For example, about one third of the sisters whose brains were found to have Alzheimer’s plagues and tangles at autopsy had shown no symptoms and scored normal in all mental and physical tests while alive.
This research and other more recent studies into preventative factors are confirming that lifestyle factors are important. Renowned chef Maggie Beer is now focused on food as medicine in nursing homes, and cites a lack of education as the biggest barrier to nursing homes changing their menus. She is on record as saying an aged care chef requires very particular skills, because they have to understand the frailties and complex medical needs of residents.
Research is also finding our surroundings do affect our mental health – and this ought be taken into acount when designing the structures in which we house our frail and dementia residents.
It is pleasing to see the newly opened Ballarat Mercy Care has taken some of these findings into account, with a café, grocery store, chapel and landscaped outdoor areas contributing to a community feel. This community-style living at Mercy Place Ballarat and at BHS is also including childcare programs in their grounds – again on the basis that providing stimulating activities support quality of life outcomes.
The first Compassionate Ballarat hero is Nick Locandro, whose father died from early onset dementia. Last year, Nick rode 2000km to raise funds for his dementia research. He believes current aged care infrastructure does not adequately deal with dementia, specifically young onset dementia, and that needs to change in order for individuals to live with a sense of independence.
Science is now studying human motivations, in particular focusing more on understanding the positive qualities and motivations of the human mind, which include compassion, altruism and empathy.
As the Banking Royal Commission demonstrated, organisations must better understand that once they've provided employees with an underlying motivation that organises their thoughts and behaviours, those are the behaviours that will emerge within the culture of those organisations.
While there are wonderful people working in aged care – and many existing examples of compassionate care – if even a small proportion of the sector retains the narrow objectives of profit and efficiency, that’s what will often drive employees.
Professor Paul Gilbert – director of the UK's Compassionate Mind Foundation – reminds us: "Developing a compassionate mind creates certain patterns in our brains that organizes our motives, emotions and thoughts in ways that are conducive for our own and other people’s well-being."
It seems the Royal Commission could benefit from taking into account how the motivation of compassion might inspire the humanising of the entire aged care system.
Dr Lynne Reeder is a member of the Compassionate Balllarat Steering Group and an adjunct research fellow in the School of Health and Life Sciences at Federation University.