With over 152 million people expected to live with dementia globally by 2056, author, human rights activist, and speaker, Kate Swaffer, hosted a special OfficeMax webinar earlier this year. Kate provided deeper insights into how caring for people who live with dementia is shifting in the 21st century. Here, we take a look at the key messages from Kate’s webinar.
There is an increase in dementia each year with the majority of families of people with dementia being the primary care partners.
"Dementia is the leading cause of disability and dependence in older people."There are an estimated 50 million people worldwide living with dementia, and there's one new diagnoses every three seconds. The global cost of dementia is at approximately 818 billion with the majority of care being provided by families or care partners. The current medical model of care is no longer appropriate for dementia. There's a lack of successful research toward treatments and care, as well as a lack of active support to live with dementia, not only to die from it.
A lack of education provided to families and care partners is also a detrimental factor to the standard of care for patients. The 2018 OECD (Organisation for Economic Co-operation and Development) report, "Addressing Dementia: The OECD Response" concluded in 2015: "Dementia receives the worst care of any disease in the developed world." Additionally, an article published earlier in 2018 found physicians generally get a total of up to 12 hours training in dementia care. Diagnosis rates in Australia indicate only around 50% of people with dementia receive a formal diagnosis, however in some countries diagnosis rates are as low as 8%.
Kate advocates we move from the traditional medical model of care and instead shift to a psychosocial and disability model of support. She argues that current structures such as "secure dementia units" are isolating and segregating, they are also a serious breach of human rights. This approach is based on a deficits model of care, and one that assumes people with dementia no longer have capacity. It lacks looking at what people can still do, and supporting a person's right to take risks, even with dementia.
Additionally, the stigma attached to dementia is still prevalent, and is based on outdated and prejudiced views of dementia, as well as a lack of awareness of the disease generally. Kate believes there is "a systemic and gross underestimation of the capacity of all people diagnosed with dementia, even in the later stages of the disease".
We can focus on increasing the quality of life for those with dementia with lifestyle changes and risk reduction. Governments must do this to ensure they can afford to provide health care for people into the future.
Although there is currently no cure and no disease modifying drugs for dementia, there are known risk reduction steps we can take including lifestyle and health factors, mental exercises and social engagement – which are all also vital to quality of life and wellbeing. Research now tells us what is good for the heart is also good for the brain.
People with dementia, their care partners and their families are now pushing for a more inclusive approach, underlined by fundamental human rights, in order to provide adequate care for the growing number of people with dementia. After a series of focus groups held to inform her second book on dementia, "Diagnosed with Alzheimer’s or another dementia", co-authored with Associate Professor Low, Kate found that the majority of people wish to remain in their home and receive community care rather than live in a residential aged care facility, whenever possible. People want greater support systems that enable independence. This is inclusive of simple changes such as the increase in recreational areas for walking in natural environments, access to the internet and being able to continue to attend community groups to stimulate activity and reduce loneliness.
There needs to be a call out for policy framework and long-term funding, as well as an increase in research toward risk reduction for dementia.
Kate argues that improving the lives of people with dementia through diagnosis and better post-diagnostic care and disability support is not only an important goal in itself, but also failure to do so will significantly drive up future costs. Research is needed on risk reduction and improvement of care as there is an estimated saving of 120.35 million in Australian alone if there is a focus on risk reduction.
Kate calls for policymakers to address a change in policy framework, ensuring care and treatment for people diagnosed with dementia are universal and enjoy the same basic human rights as all others. In order to do so, policymakers need to address major challenges focusing on how to reform the long-term funding of social care, as reliance on additional private funding is likely to be insufficient. Immediate actions should be addressed with kindness, compassion, and a focus on risk reduction and improvement of quality of life.