Living beyond dementia

Kate Swaffer’s nursing career ended when she was diagnosed with dementia at 49. Now she is an internationally–regarded advocate for the right of people with dementia to remain engaged with their pre-diagnosis lives.

Eight years ago, at the age of 49, nurse Kate Swaffer was diagnosed with younger onset dementia and became one of more than 353,000 Australians with dementia.

She had been juggling a hectic lifestyle as a mother of two teenage children – one doing Year 12 – while working full time in an operating theatre and studying at the University of South Australia.

“I was doing all that – although with some difficulty – the day I was diagnosed. Then suddenly all that anyone saw were my missing pieces; my deficits,” she told the NSWNMA annual conference.

She went from having “a reasonably healthy IQ and a photographic memory” to some days not remembering her husband Peter’s name; from having “exceptional spelling and grammar and maths to not being able to spell simple words such as ‘that’.”

At 50 she badly failed her driver’s test, partly due to dementia symptoms similar to those of dyslexia.

“I was going through red lights thinking they were green and throwing on the brakes at green lights thinking they were red.”

Now an author, international speaker and activist for the rights of people with dementia, Kate Swaffer said she had learned to “live beyond dementia” – the subtitle of her book “What the hell happened to my brain?”

She argues it is wrong to try to start doing everything for someone with dementia and to tell them to slow down.

“In the first couple of years my husband was always trying to take over and do things for me rather than letting me struggle with my increasing disabilities.”

One day she found Peter sitting on the steps in tears with his head in his hands. He told her, ‘I know I am losing you and I’m afraid of what the future holds.’

Life can continue normally

Kate told conference: “For me to function with dementia I look calm on the surface but below the surface I’m paddling quite hard even to speak. Over the years my paddling has got more difficult and causes more fatigue.

“However if that swan stops paddling it will sink. We need to be supported to paddle harder so we can keep functioning for as long as possible.”

She calls the standard medical approach to dementia “prescribed disengagement” and brands it unethical “because it takes away all sense of hope for a future”, she believes.

“When I was diagnosed with dementia at 49 I was told to give up work and study because it would be too stressful and to get my end of life affairs in order. And to start going to respite care one day a month so I could get used to it.

“My husband was told that very soon he would have to give up work and become my full time carer.”

She said she lost her job because “nobody told me I had rights to remain employed with reasonable adjustments.”

However her university lecturers said there was no need to give up university and the university’s disability support staff “gave me back my hope. They set me up with an amazing amount of support.”

“Prescribed disengagement can often be the reason why people take on the persona of sufferer and victim of dementia – and also why our care partners become consumed in caring for us and often take on a martyr role.

“The thing that is missing is support for us to keep living: to stay at work, be volunteers, be active in our communities and to keep living our pre-diagnosis life if that’s what we want.”

Dementia sufferers deserve disability support

She cites a nurse she knows who had a stroke at 52.

“We didn’t think she would ever walk, talk or feed herself or use her right side again. Within six weeks she was out of hospital and within 12 months she was back at work following rehab.

“That’s when I thought, where the hell was my rehab? I have what could be likened to a progressive brain injury so I started to prescribe rehabilitation for myself.

“My neuro physiotherapist started to see the benefits of supporting me on that pathway and now teaches it to his masters of physiotherapy students at Flinders Uni.”

She said people with dementia deserve the same disability support as any other person living with disability.

“We need to support access for people with cognitive impairment in the community in the same way there is a ramp for people in a wheelchair in this building. “We need to be helped to manage risk not eliminate risk.”

A holder of several awards, Kate said she was particularly proud of being recognised in the 2015 national disability awards “because that puts dementia properly in the disability space.”

“The more I learn about dementia the more I realise that if we do treat the symptoms as disabilities, everyone with dementia will live a longer more productive life than they currently are able to.”

“If that swan stops paddling it will sink. We need to be supported to paddle harder so we can keep functioning for as long as possible.”  — Kate Swaffer

 

Kate Swaffer started her nursing career specialising in dementia and later worked in operating theatres until she was diagnosed with younger onset dementia – a category covering those under 65.

She is co-founder and chair of Dementia Alliance International, a board member of Alzheimer’s Disease International, chair of Alzheimer’s Australia Dementia Advisory Committee, and co-chair of the Consumers Dementia Research Network.

She regularly presents nationally and internationally on topics such as stigma and language and has received several national and international awards.