People living with dementia and carers can provide a powerful voice for change and a perspective on dementia no one else can provide.
Some of our Advocates give their stories below:
Making a difference day to day – Diann Bates
Receiving a diagnosis of dementia can be challenging at any age, however things can be more complex for a younger person – particularly if they are still working, paying a mortgage or looking after a family.
Alzheimer’s WA’s Younger Onset Dementia Program provides information and support for individuals, who are under the age of 65 and living with dementia, and their families.
Diann Bates lives with her partner, teenage children and pet dog Timmy. Three years ago, at the age of 47, Diann Bates was diagnosed with Younger Onset Alzheimer’s.
“Alzheimer’s affects my day to day life in a myriad of ways that you absolutely take for granted… things that have been standard operating procedure… that you have done with your eyes closed for many years. It’s often the little things…”
Things as simple as cooking a favourite meal, feeding her dog, and watering plants are a daily challenge for Diann. Before her diagnosis Diann ran her own marketing business however she had to sell her business last year. Using her creative talent, Diann has created “tips and tricks for survival” to make her life easier, whether it be for cooking, parking the car or trying to remember something.
“I’m still quite active and try to do as much as I can. It allows me to be independent, to keep going a lot longer.”
Diann shares these workarounds with other people diagnosed with dementia through Alzheimer’s WA’s Advocates Program. As part of the Advocates Program, Diann regularly speaks at events on behalf of Alzheimer’s WA. Most recently, Diann presented at the 2017 Dementia Partnership Program Symposium.
“If I can give back in any way, shape or form, or help somebody in their life… why wouldn’t you?”
Diann is trying to remain as self-sufficient and independent as possible. Her mobile phone is full of alarms and reminders, and she uses apps on her phone to keep track of where she has parked her car. She finds preparation makes it easier to leave the house, particularly if she is going somewhere new.
“At times I get quite anxious if I have to go somewhere new or do new things.”
Selling her marketing business meant Diann lost a large part of her social network. For the last year she has been attending a ‘Friday Ladies Group’. Once a fortnight, women who have been diagnosed with Younger Onset Dementia meet at Mary Chester House in Shenton Park, before going out for the day; picking strawberries, playing Supa Golf, visiting galleries or the Zoo, or having their nails done.
Diann is proud of the fact she can still drive, as most of the ladies who attend the ladies group are driven by a carer. The support of the group is important, with stigma and loneliness being two of the most reported impacts from people living with dementia.
“When I first went I realised I’d never met anyone my age with Alzheimer’s. I could see the struggle in their brain that is the struggle I feel in my brain when I’m trying to think something through, or say something, or remember something… and I could just go ‘I know exactly how you feel,’
“It’s always a lovely day out with the girls. But it’s also sad sometimes when you see people continue to deteriorate.”
Although still in the early stages of Alzheimer’s, Diann recognises how hard it can be for those who are further progressed, their families and carers.
“Carers need someone like Alzheimer’s WA to provide support mechanisms. Alzheimer’s WA has touched base regularly with my partner, Greg, but at this stage I’m still capable to keep going.
“I try not to think about where that’s going. I live positively in the moment, count my many blessings and make the most of what I can do now.”
Love, Perception and Dementia Care – Dr Bill Jenkins
My name is Bill Jenkins. I am a retired academic and psychotherapist. In 2009 my wife, Heather, a professor of special education, was diagnosed with Frontotemporal Dementia. I cared for Heather at home until 2012, when she moved into a Dementia Care Facility. Currently, I am an advocate, a father, grandfather and poet. I begin this piece on love, perception and dementia care with a story from my childhood.
I was born and raised in a fishing village in the north of Scotland. When I was a boy, on Friday afternoons after school, my friends and I would rush down to the harbour wall to watch the fishing boats return from five days at sea. The boats had left a minute past midnight on Monday (bad luck to go out on the Sabbath) and they returned on Friday between about three to six o’clock to unload their catch for sale the next day.
The reason we went to the harbour wall was to see who could recognise the boats first as they came over the horizon. It was a vigorous competition. In all the years that I took part in this weekly ritual, I never once recognised a boat first. Why not? I wasn’t visually impaired, but the following information might help you understand.
All those years ago, my father was in business and all my friends’ fathers were fishermen. Their fathers were on those boats. When I strained to identify a boat, I was looking for physical characteristics, for the name on the prow, where the cabin was placed, colour and so on. I was just looking for things, my friends however, were looking for their fathers.
In 1923, the Austrian philosopher Martin Buber, produced an essay called ‘I and Thou’. In this essay he made a distinction about the way we perceive the world. He made a distinction between seeing other human beings and seeing objects. He named our perception of other human beings as forming ‘I – Thou’ relationships and our perceptions of objects as forming ‘I – It’ relationships.
Getting back to the harbour wall, my friends were looking at the boats in ‘I – Thou’ terms, personal terms, as the possibility existed that the father they loved and missed ‘might’ just be on board. They were looking for a beloved person; I was just looking for things. Different motivations!
I make this distinction because it points to an extremely significant issue in my experience of dementia care.
During the year or so leading up to Heather’s diagnosis, I had been aware of various subtle changes in Heather and in our relationship. She was less emotional than she had been, more likely to share personal details of our life together, even with strangers, and she appeared to have lost interest in some of our shared interests. As a couple we had been very close and we had been married for 35 years at the time of the diagnosis. We loved each other and we knew each other very well. But as a consequence of the emerging dementia our mutual and loving relationship came to an end. However, something significant happened once the dementia became well established and I had been caring for Heather for a year or so.
The development of dementia is usually seen as progressive loss of function: mental confusion, incontinence, recognition failure, apathy, memory loss, irritability, aphasia, dysphasia and so on. This increase and gradual progression in our partner’s dysfunction can change the way we perceive our loved one. It is largely insidious, it creeps up on us.
Being totally embedded in caring for my wife Heather, I was completely unaware that my perception of her had changed. I had stopped seeing her as my loving partner, and started seeing her as an object of care. During my care giving the way I saw my wife had shifted from an ‘I – Thou’ relationship to an ‘I – It’ relationship, without me being aware of the change.
One day I had a brain snap and realised what was happening. Memories of my time as a student of philosophy, in particular of the work of Martin Buber broke through the fog of dementia care. I had been thinking of Heather largely in terms of her deficits, and my care in trying to help compensate for them.
I didn’t fall in love with Heather forty five or so years ago because of all the amazing things she could do, I fell in love with a human being, a person, a lovely and wonderful woman and that hadn’t changed. I had just stopped seeing it. The dementia had blinded me to the love in my life.
Reflection on this realisation pointed to the importance of not losing sight of the personhood of the individual with dementia. It is such a destructive disease, not only does it deprive the individual of crucial functions, it is destructive of fundamental and mutual love, it also destroys relationships with family and friends. At the core of this destruction is the loss of the perception of the person, where the person becomes seen in dysfunctional terms.
Normally, the perception of who we are, our identity, is firmly connected with what we do, and what others expect us to be able to do. However this experience with Heather taught me that who the person is does not change, even when their capabilities change.
I would like to stress my belief that dementia does not change who the person is despite changes to their functional capacities.
But what about love?
The love that I shared with Heather which was shared mutually had gone, and there was no hope of its resurrection. But when I looked into Heather’s eyes, I loved her still.
This realisation helped me to see Heather in the light of a different kind of love, a love that persists and transcends the circumstances in which we might find ourselves. It is a love that enabled me to focus solely on who Heather is, not on what she could or couldn’t do, what she could or couldn’t share. So we could say that this kind of love helps us to see our world in a different way, in a way that is solely other directed, not self-directed.
Those of you with knowledge of ancient Greek thought will have detected that I have been talking about two different kinds of love. The mutual love is known as Eros – romantic love, which creates a loving space through mutual physical and emotional attraction. The other is Agape – the kind of love that does not rely on mutuality, it does not need reciprocation. This is the kind of love that saved me from the chaos of dementia.
Finally, in my caring, why did I come to focus on Heather’s loss of function, and lose sight of her personhood? I believe that it was self-protection, a way of reducing the focus on the loss of our mutual love, in particular the loss of her expression of loving emotion towards me. However, I suspect, that this may be a more complex issue.
The experience that I have tried to describe above is, I believe, an experience shared by many loving partners when one of them develops dementia.
I believe that it is crucial to not lose sight of the person, it is also crucial to allow oneself to love without the need for reciprocation.
With this kind of love we are able to assert and support the personhood of our loved one, without expecting anything in return.
With this kind of love we are able to support our friends and family.
With this kind of love we are free to open our life and our experience to others.
Finally, with this kind of love we strengthen ourselves so that we can continue to care for our beloved, without being blinded to focusing on who they are by the impact of dementia.
Wendy and Keith Glance
Keith and I have been dementia advocates for Alzheimer’s WA for the past 5.5 years.
When Keith was diagnosed with YOD one of our main concerns was the stigma he may experience. The change to his life overnight was immense. Going from working full time and enjoying cycling, walking and keeping busy …to retiring, giving up his drivers license, and finding meaningful ways to fill his days became a challenge!
We were both passionate about doing what ever we could to reframe our life in order to live well with this “hurdle”
Keith was adamant he wanted to stay fully engaged in life. He would put his hand up for anything that gave meaning and purpose. Becoming dementia advocates was a perfect fit!
Through that experience we have met so many wonderful people. We have had opportunities to break down stigma by delivering many radio, television and public interviews to share our story. We have travelled to Canberra, Sydney and Melbourne to participate in various networks in order to breakdown stigma and pave a better, fairer and more holistic way for people living with dementia and show how life can be meaningful under such circumstances.
Keith firmly believes this has “kept me engaged in the community” and “gave so much meaning and purpose to my life”. We enjoy all that goes along with being proud advocates for Alzheimer’s WA and continue to enjoy the opportunities that come our way to make a difference.