‘It’s the only disease where you’re not supported to fight for your life’: why Kate Swaffer is demanding dementia rights

Kate Swaffer had severe headaches from a young age. She was told she was neurotic, or a hypochondriac. She started researching what sort of psychological condition she might have that gave her neurological symptoms. But it turned out to be Arnold-Chiari malformation, a condition that required brain surgery. So Swaffer didn’t recognise the dementia symptoms when they started to appear. Just a side-effect of the ACM surgery, she thought.

“My first symptom was an acquired dyslexia,” says Swaffer, who had worked as a nurse – including a stint in a dementia unit. “I was getting numbers back to front, and letters back to front. I was suddenly spelling ‘that’ incorrectly.

“I was a mature-age uni student and I was having to look up what the word psychology meant and I was doing a psychology degree.”

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Then, at 49, she was diagnosed with younger onset dementia. Her first response was disbelief.

After the diagnosis she was told to get used to the idea of residential care and to get her affairs in order.

“It’s the only disease I know of where you’re not supported to fight for your life,” she says.

That was about 16 years ago. Since then, she has come out swinging against the ways in which people living with dementia are treated – including being told that their lives are effectively over. In the process, she has sparked global conversations about the rights of people living with dementia, as well as household conversations about how to care for people, and when that care can veer from being essential and protective, to patronising, to neglectful, to abusive.

Swaffer is doing a PhD on dementia and human rights at the University of South Australia. When Guardian Australia meets her on campus, she’s neat and brisk, and occasionally brusque about what she perceives to be failings in the system.

While she’s happy to answer any and all personal questions, she relentlessly steers the conversation back to her research and advocacy – of which there is a startling amount. She has sheafs of paper with statistics and explanations at hand and has written dozens of reports.

Swaffer co-authored a recent study (yet to be peer-reviewed) about dementia rehabilitation training for GPs and practice nurses. It argues that despite strong evidence for rehabilitation treatments, individuals are not often referred to them.

An article published in July continues her argument for reparations for people with dementia whose human rights are violated in care institutions, similar to that set up for survivors of institutional child sexual abuse. People with dementia suffer institutionalisation, segregation, detention, violence and neglect, she and co-author Linda Steele from the University of Technology Sydney, wrote.

The violations are widespread, grounded in structural discrimination, and the redress could include compensation, but also apologies, rehabilitation, and public education.

It would also mean acknowledging that people living with dementia are as entitled to recompense as anyone else.

‘There’s a sense that it’s an older person’s disease’

The Australian Institute of Health and Welfare estimates about 29,000 people have younger onset dementia.

In 2021, 124 people under 65 died from dementia – meaning it was recorded as the underlying cause of death. Others will have died with dementia.

Swaffer co-founded Dementia Alliance International (DAI) and has served as chair, chief executive officer and as a board member. She was the first person living with dementia to give a keynote address at the World Health Organization. In 2017, she was named South Australian of the Year.

Diagnosing younger onset dementia is complicated because it’s rare and can mimic more common conditions including anxiety and depression.

“They’re looking for the obvious things first,” Dr Kylie Radford, a neuropsychologist from the University of New South Wales’ school of psychology, says. That delay in diagnosis can mean a missed opportunity to “reduce risk factors to prolong the period of functional independence” and to slow some of those changes.

Related: Almost half of dementia cases could be prevented or delayed, study finds

The Australian Dementia Network – a group of scientists and researchers – has established best practice guidelines which includes creating personalised strategies for however people’s symptoms are manifesting. They list psychological supports, occupational therapy, speech and language therapy, diet and exercise advice, and more ways to rehabilitate people.

Associate Prof Samantha Loi from the Neuropsychiatry Centre, Royal Melbourne hospital and Department of Psychiatry, University of Melbourne, says the average delay in diagnosis has shrunk from approximately four years to about a year, although there are outliers.

Dementia Australia executive director of services, advocacy and research, Dr Kaele Stokes, says the delays are still serious. “Kate’s experience is still quite typical of the experience of a lot of people,” she says. “It’s not well understood in the community or in healthcare. There’s a sense that it’s an older person’s disease.”

That dementia predominantly affects those in the later stages of their lives may contribute to the delayed diagnosis of younger people. The “older person’s disease” label might also be responsible for the attitude that the person may as well give up and wait for the end.

‘We need a big switch in the world’

Swaffer, clearly, did not take the advice to prepare for the end. Instead, she embarked on a mission to fight the preconceived notion that a dementia diagnosis is “only a death sentence”.

She is on the NDIS, and says she gets excellent support from the university. Things like software for literacy, speech therapy, and Webster packs to organise medication can all help. These are just some of the things she wants everyone to have access to. But while she’s grateful for the support, she acutely aware of what she’s lost.

Losing her driver’s licence after her diagnosis hit hard. “I was a farm kid. I learned to drive sitting on pillows in a ute. It was like someone chopped my legs off.” Being no longer able to drive, she says, can lead to loneliness.

And it’s “emotionally devastating” to go shopping with a support worker wearing a uniform, she says. She’s an ex-chef, but struggles to follow recipes and can’t cook when she’s home alone in case she leaves something on the stove. She has laminated help sheets around the house, reminding her to do things such as take her keys when she leaves.

“All these strategies are great,” she says, “As long as you remember what they’re for.”

Her experience nudged her to change her PhD from being about the stigma of dementia, to looking at dementia as a disability – where support and dignity are human rights.

While everyone from the World Health Organization to Australian government departments and the NDIS recognise that dementia causes disability, she says, that understanding has not filtered through to how people with dementia are treated.

“I think the reason that the violations of the rights of people with dementia, from the time of diagnosis, then in community care, then residential care … has a lot to do with the fact that the biomedical view is dominant,” she says, meaning social and psychological supports are not given. She calls it a “therapeutically nihilistic” view.

Related: Toby lives with childhood dementia. Limited funding in Australia is leaving families without hope

“We’re not being sent to rehabilitation.”

Loi says too often people are told to get their affairs in order, rather than directed to better information and support.

“It’s devastating and traumatic, but you’ve got a good 10 or 12 years,” she says of people who receive a younger onset diagnosis. “So let’s get things going so you can have a fulfilling life.

“People think they’re going to be incontinent and drooling and hopeless. That’s not the case.”

The government has committed to stop all people under the age of 65 – including those with dementia – being put in aged care by 2025. Loi says most younger people want to stay at home, but there’s the issue of support for both the person living with dementia and their carers.

Stokes agrees that staying at home is ideal but not always possible. “If it gets to a point where they’re no longer able to be supported safely at home, or by their families because it becomes too challenging,” she says.

“It’s a progressive, cognitive decline. It’s a terminal condition.”

Putting people in homes is a form of segregation, Swaffer argues, and she’s scathing of facilities being labelled “dementia friendly”. “We don’t have schizophrenia villages. We don’t have cancer villages,” she says. And such places not only perpetuate stigma, but could exacerbate behaviours. Social isolation has been shown to increase the risk of developing dementia by 50%, and to exacerbate the symptoms in people already diagnosed.

Related: One in five Australians wrongly believe dementia is ‘normal part of the ageing process’, survey shows

“We need a big switch in the world so that people with dementia can keep living,” she says.

Swaffer says she’s a “realist” and that some people at some stages will need care. She concedes she may, at some point, need to move into residential care. But she wants it to look fundamentally different.

“We do need assisted living for some people. But what we need is a new way of providing assisted living,” she says. “A home for people that looks like a house you and I would live in.”

There should be between six and 10 people, with double beds, and couples living together, she says. “If I needed assisted living, my husband could stay with me and live there and sleep with me until I died.”

Swaffer’s neurologist has said she should probably have another brain operation for the ACM, but general anaesthetic risks accelerating her dementia. It’s not an urgent decision to make, but a scary one. “I might not even know who I am,” she says. “See the person, not the deMEntia,” she wrote in a recent presentation. “I’m still ME.”

For now, she’s maintaining a frenzy of activity and flits briskly through a broad range of heavy topics, not least her own death.

She is conversant in death. Swaffer’s grandfather gave her a cemetery plot for her 18th birthday, she explains with a laugh. She spent a lot of time with her grandparents and their friends and was pretty comfortable talking about death and its rituals.

She ended up giving away the Lipson burial site to another relative.

“I say that I’ve lost the plot twice now,” she says. “I lost my funeral plot and then the plot.”