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“My advice to others is to never give up, to utilise as much support as possible without allowing it to erode your self-worth, to reclaim your pre-diagnosis life, and finally, ignore those who seek to minimise you or your disabilities.” – Kate Swaffer
On Living with Dementia and the Pursuit of Reclaiming One’s Life
When Kate Swaffer was diagnosed with dementia at 49 years old, she was shocked, and it took some time to find her way to being positive about it. Some time later she heard an analogy that helped her, about how her condition and functioning could be likened to a swan on a lake where one can only see the calmness and serenity of the swan on the water without seeing the paddling that the swan has to do underneath the water for it to simply stay afloat.
A general term used to refer to a decline in cognitive abilities severe enough to interfere with daily life, dementia is not a disease in itself but an umbrella term that is used to describe an extensive range of symptoms associated with the deterioration of one’s thinking skills or a decline in one’s memory that is severe enough to affect a person’s ability to perform normal, day-to-day activities. Alzheimer’s disease accounts for about 50% of dementias, while vascular dementia, is the second most common type.
At the 6th Annual National Dementia Congress, in her presentation titled “Younger Onset Dementia: Reclaiming My Life,” inspirational speaker, writer, author, consumer advocate Kate Swaffer talked about her life after being diagnosed with dementia; how things have changed dramatically for her and her family; how people continue to have myths and misconceptions about the condition; how they should be dealing with people with dementia; and most importantly how great the possibility is to reclaim one’s life even after diagnosis.
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Younger Onset Dementia: Reclaiming My Life
On Living Well with Dementia
Kate expressed her concern about what living “well” really means. She explained how the word well is defined in the medical dictionary as “being free of disease.” While there could be further discussion on whether that is semantically right, there exists the question on whether it is possible to live well even with dementia.
In her talk at the 6th Annual National Dementia Congress, Kate enumerated the reasons for her speaking out and letting people know about her condition and her everyday battle with it, and it is significant to note the most critical of these reasons:
- To have a positive impact on improving diagnostic support and explain more fully the differing models of care
- To raise awareness and help educate people without dementia on how they should deal with it (if they have someone in the family with dementia)
- To empower other people with dementia to stand up for their rights and for their own needs
- To try and stop the concept on Prescribed Disengagement™
- To break down the myths, discrimination and the stigma
- And to improve the care and the overall quality of life for people with dementia as well as their families
Kate firmly believes that all the above are critical to better care and explained that if “people with dementia don’t tell you what it’s actually like from their perspective how can they reasonably expect other people to know or for there to be any change to become even possible.”
I live with dementia not always well but I treat the symptoms as disabilities and in that way manage to function much better than people who just look at them as deficits.
On Prescribed Disengagement™
When Kate was initially diagnosed (and the hundreds of people around the world that she has talked to also diagnosed with dementia), she was told “to give up work, to give up study, to get my end of life affairs in order, to get acquainted with aged care, and to go home and live for the time I have left.”
This treatment has pushed Kate to coin the term Prescribed Disengagement™ primarily because this depicts what it is, as the name literally suggests: “a prescription of disengaging from your pre-diagnosis life, which has the potential to set up a chain of hopelessness and helplessness. I can also set us up to become victims, and our care partners to become martyrs.”
She emphasised her disagreement with Prescribed Disengagement™ as it focuses on deficits and how it exacerbates the myths of dementia and how it creates hopelessness, which discourages people with dementia to strongly fight for their lives.
It’s not that we can’t function, we function differently to people without dementia, but if people keep telling us we can’t function or take over for us, it is easy to give up.
On the Models of Care for People with Dementia
Kate Swaffer described the elements comprising the current medical model of care that is being implemented which she experienced when she was diagnosed with dementia including diagnosis, Prescribed Disengagement™, referral to a service provider, advanced care directives, and age care, with minimal lifestyle support.
Kate then shared how the university disability sector support team helped her to learn to manage the symptoms of dementia as disabilities following the confirmation of diagnosis from her neurologist and after an assessment of her abilities and changes in her functioning, for which she was immediately given a program of support including recommending authentic rehabilitation and grief counselling.
The popular dementia advocate is a member of a number of international committees that are working on establishing international guidelines in dementia care; guidelines that she hopes will be resolute in terms of providing support and an ethical care pathway for people living with dementia in the same way that somebody with a stroke would be given.
The sector is doing its very best but there’s a lot more to be done.
On the Missing Pieces
One of the highlights of Kate Swaffer’s presentation at the 6th Annual National Dementia Congress was a deeper assessment of the missing pieces that are imperative to be established in order to simplify and understand the complex world of dementia and how society is currently dealing with it. Without hesitation Kate pointed out that often the biggest missing piece is “the full inclusion of people with dementia at every level in every single conversation.”
Kate also expressed her concern about how pointless it is to have so many research studies and events being organised to discuss the issue of whether there will be a cure for dementia in 2025 or not. She asserted that research and resources should also focus on better understanding of dementia and the quality of life for those people living with it.
She noted how in 2012, only $22 million was spent on dementia research as opposed to the $165,000 million that were allocated for cancer research. She pressed on to indicate how people with dementia need to have better outcomes for the life they’re living today and the need for a much stronger focus on that and not just a cure.
On Associated Language and Stigma
Kate closed her talk on the language and stigma associated with dementia.
Kate indicated how powerful language is in the care of people with dementia; the need for it to be respectful and person centred. She revealed how strikingly large the different emotions can be elicited with the use of the proper words and terms around people living with dementia and how impairing and disrespectful it is to be called “sufferer” or “demented” when people can simply say “person living with dementia.”
Finally, Kate suggested how imperative it is that people around the world aim to change their views of and about people with dementia and how critical it is to include them not only in the research but in all the conversations that are about them (as highlighted in her piece Dementia: Language and Stigma).
Millions of people with dementia across the world are voicing their opinions as they want to be part of these conversations; and until it stops being about them, without them, all the myths and misconceptions, and feelings of shame and guilt will continue to harm, isolate, discriminate and stigmatise them.
Related resources:
- Alzheimer’s Australia’s full dementia language guidelines
- Advocating dementia-friendly communities by Kate Swaffer
- Kate’s blog: Creating Life with Words: Inspiration, Love and Truth
- View and download presentations from the National Dementia Congress on Slideshare