Words by Kate Swaffer, Chair, CEO & Co-founder, Dementia Alliance International, Author, Activist & SA Australian of the Year 2017.
Right now in Australia, there are more than 445,000 people living with dementia. Every week, an estimated 1800 new diagnoses are made. And the latest ABS data shows dementia as the second-leading cause of death nationally for men and women, and the leading cause of death for women.
As these numbers have grown, most people fear a diagnosis of dementia, more so now than cancer. And when it comes to stigma, I’d liken the stigma attached to dementia to where we were with cancer and HIV/AIDS in the 1970s.
It really puts it in perspective, doesn’t it?
Why am I so passionate about this issue? Because I am one of more than 26,000 people in Australia who are under the age of 65 and have dementia – specifically, younger onset dementia.
Having been diagnosed 10 years ago at the age of 49, as someone who was still working and studying at university, married and raising two sons, it came as a huge shock. This was only exacerbated by the fact that I was once a nurse, and had worked in dementia, yet had no idea younger people could be diagnosed with dementia.
Since then I’ve come to understand all too well the many misconceptions surrounding dementia, which affect both those with younger onset dementia like me and people with older onset dementia too.
Perhaps one of the most common misconceptions out there is that failing cognitive and other abilities lead only to death. As if once a diagnosis has been made, there is no other thing to do but to get one’s life affairs in order and prepare to die – rather than fight to live.
Depending on when the diagnosis is made, there can still be much time left to live, and live more positively to the fullest extent possible with a diagnosis.
Yes, dementia is a terminal illness. No, it’s not a normal consequence of the ageing process, even though it’s most commonly seen in the elderly. And no, there is currently no cure and no disease modifying drugs available – although the few drugs available may slow the progression of dementia for up to two years.
Clinically speaking, the medical definition describes dementia as the gradual deterioration of functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. There are more than 100 types or causes of dementia, with Alzheimer’s disease making up between 50%-70% of all dementia.
But if we move away from an approach of medical facts and statistics, there are many other ways to view dementia that offer an entirely new perspective – and one that I hope you’ll understand.
John Sandblom, who lives in the USA and was diagnosed with a rare younger onset dementia 11 years ago, put it like this: “We are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us.”
Dr Allan Power, who is well known for his work in the field, describes his patients with dementia more simply as “experiencing a shift in the way they view the world”.
For me personally, I see dementia as a progressive chronic condition, causing acquired cognitive disabilities. When I was first diagnosed, I felt devastated. I cried for weeks. But since then I’ve come to see dementia through the lens of disability.
Disability … which means that with appropriate disability assessment and support, we can live with more independence and a higher quality of life for much longer. And this is especially so if we are diagnosed earlier in the disease process.
The World Health Organisation also describes it as a disability, stating: “It is one of the major causes of disability and dependency among older people worldwide.”
For me, this way of looking at dementia has been the key to living more positively and independently with it myself, and towards reducing what is currently too often seen as only a tragedy and loss by others.
Accepting the cognitive changes of any type of dementia as a disability – albeit progressive and chronic – means too that everyone with dementia has the right to disability support, in the same way we would with any other acquired disability.
Everyone with dementia has the right to disability support, in the same way we would with any other acquired disability.
Thankfully, over the past few years we have learned much about the different types of dementia, and the clinical and academic community have been working towards a more timely diagnosis in order to better support research and improve quality of life for those of us living with dementia.
There’s also been a rise in the number of people speaking out about their experience with dementia in a bid to change not only the narrative of dementia, but the way forward, and to improve the lives of those living with the ever-changing complexities of an incurable, progressive chronic condition.
It’s a revolution of sorts – to set about a much-needed change in how we as a society view and treat people with dementia.
We are challenging the medical model of care, and the 20th century management of dementia, which is only a pathway to deficits and death. We are asking for language that is more positive and more respectful, in much the same way the disability community advocated more than 30 years ago. And we are demanding a human rights-based approach to dementia, with a more supportive and enabling approach to living with it once diagnosed.
What does that mean? A human rights-based approach means things like disability assessment and support at the time of diagnosis, not just support with our activities of daily living. It is an approach that includes cognitive and physical rehabilitation, including speech pathology – not just for swallowing when we are near death, but for language and communication disabilities at the time of diagnosis, and so many more changes in our abilities we may encounter in between.
Because, as people living with dementia, we have the same right to continue to live our pre-diagnosis lives to our fullest potential as anyone else with a terminal progressive condition. And we have the right to the support needed to do so. Whether we’re younger and employed, or older and require extra support to remain at home and engage with our usual recreational activities, it’s about living the best life we can. And those benefits are not just for us – they extend to all those around us, our friends and family, our carers and helpers, and wider society on the whole.
After all, we are all ageing, and we are all going to die. Each and every one of us. But there’s no reason why dementia should be the catalyst to stop living. Or hinder us from experiencing love and respect throughout the roller coaster of dementia.
There’s no reason why dementia should be the catalyst to stop living. Or hinder us from experiencing love and respect throughout the roller coaster of dementia.
I’ve heard many stories about people who, once diagnosed, find the experience of isolation increases as family and friends stop visiting, not sure of what to do or say. Perhaps they fear dementia themselves, or find it too confronting to spend time with someone who is changing – unsettled by the uncertainty.
I always like to remind people that while some changes in behaviour are due to the pathology of dementia, most are due to external factors such as loneliness, boredom, feeling trapped, having difficulty communicating, having to live in a nursing home, being separated from a partner, or even untreated pain. A holistic and compassionate view is essential to understanding the difference.
To everyone reading this, I encourage you to rethink what you believe you know about dementia, and see that it is possible to live more positively with it. What we need is for others to accept us as we change and focus more on what we can do – as opposed to seeing us increasingly as ‘empty shells’, or as ‘sufferers’.
I know when I learned to focus on what I can still do and saw the positives, my life became much richer for it. In fact, dementia is the third greatest gift in my life. But for others, they may need a little help to see it that way.
In fact, dementia is the third greatest gift in my life. But for others, they may need a little help to see it that way.
At a global level, we need to rethink dementia if we are ever to reduce the stigma, discrimination and never-ending loneliness of the diagnosis – and this is something that transcends country borders, language, race and political views. While intangible and hard to see or pinpoint, the influence of misguided beliefs and attitudes is immense, and for those who feel it most – people living with dementia – it’s difficult to contend with alongside the reality of living with the changes brought on by dementia.
I’m hopeful that by sharing my story you’ll be as supportive of your neighbour, your mother, brother, or anyone you know or love who has dementia, as you would if they had cancer or any other illness.
And if we as a society start to view dementia differently – as a condition causing disability and not only the death sentence – then we will start to see people diagnosed with it differently and treat them differently at both a personal and systemic level going into the future.
We need to create a new model of care that each and every one would be want – one that is empowering and enabling.
After all there is a new case of dementia somewhere in the world every three seconds, and the WHO predicts this number will double by 2030 and more than triple by 2050. That could be you or someone you love.
