We recently had a conversation with one of our consumers about the film Still Alice, younger onset dementia and empowering consumers. Here’s an insight into what was discussed:
We’re going to go out on a whim and assume that most of you watched the movie Still Alice and attempted to put yourselves in Alice’s shoes; you probably tried to empathise with her to better understand what it’s actually like to live with younger onset dementia. That is, of course what movies do, right? They build an emotional connection with you and the actors; they force you to feel as though you are one of the characters in the movie. For that 1.5 hours or so you’re watching the movie, you manage to escape reality and dive into a faux life.
Well, Vicki Noonan, a wife, mother of two boys – both in their mid-to-late twenties – former primary school teacher and person living with younger onset dementia is the exception. She, like everyone else in the cinema prepared herself to watch a film about a woman by the name of Alice who lived with younger onset dementia. Vicki was looking forward to watching a film that would depict a life similar to her own, but what Vicki couldn’t have imagined is how closely aligned the movie is to her own life. She walked out of the cinema that evening feeling as though she’d just watched her life unfold on the big screen.
Much like Alice, Vicki is a wife, mother and former teacher and she is also a person living with younger onset dementia. The difficulties Alice experiences in the film are the same day-to-day difficulties Vicki often encounters. For instance, the scene when Alice goes for a run and becomes confused and unaware of where she is or how to get home is a scenario Vicki knows only too well.
Vicki’s daily walks lead her to a fountain – a point that marks half-way and signifies to Vicki to turn around and walk back home. But on more than once occasion, for no other reason than her symptoms of dementia were stronger on those days, she walked past the fountain and became disoriented. Luckily, she lives in a small community, knows many of the community members and feels confident enough to approach them for directions. On the days when there’s no one around, she gets out her mobile phone and calls her husband for directions. Before we continue, we’d just like to point out that this is a prime example of how people with dementia can be empowered and supported to maintain their independence. They just need to feel the support of their communities to know that if their symptoms happen to take hold, they’ve got people nearby who would be only too willing to help. A little more understanding of dementia and the symptoms it presents will surely help to alleviate the anxious moments that people with dementia encounter.
That’s just a snapshot of Vicki’s life with dementia. Her symptoms of dementia actually started back in 2009 at the age of just 54, and it wasn’t until 2013 that her diagnosis of fronto-temporal and vascular dementias was officially made. Vicki’s type of dementia affects the part of the brain involved with numbers and counting, spatial awareness and basic decision-making skills. As a primary school teacher, a lot of Vicki’s working hours were spent teaching mathematics, but suffice to say, Vicki eventually felt that as a result of her symptoms of dementia, she couldn’t continue teaching.
There are a number of other activities that Vicki has had to forego as her symptoms of dementia have progressed, but she hasn’t thrown in the towel all together. There are many activities she has taken up or remained involved in, including golf, ball games, spending time with her dog, hanging out with her husband and children, shopping with her husband, catching up with friends, and of course going to the movies! There is one thing that she is particularly grateful she can remain involved in, and that’s having a voice on the issues that matter to people like her who live with dementia. After all, who better to provide feedback on our health system than those who actually use the service? The Alzheimer’s Australia Consumer Summit provides one of the opportunities Vicki has to do just that. Along with her husband, she was joined by 48 other consumers at Alzheimer’s Australia’s Consumer Summit earlier this week held at Parliament House, to voice their needs to politicians and to call for action on dementia-related issues.
There are parallel opportunities in Still Alice that Vicki can relate to. In one scene of the movie, Alice delivers an address at the Alzheimer’s Association Conference, explaining how her life has changed as a result of her condition and how people in her communities can support her. Similarly for Vicki in the Australian context, the Alzheimer’s Australia Consumer Summit provides a platform for people with dementia to voice their concerns about the difficulties the current health system presents and to identify ways to improve the system to better support and care for people with dementia.
So, what did Vicki raise at the Summit?
She raised the urgent need for expanded dementia-specific services. She wants politicians to understand that people with dementia have unique care needs, particularly those under the age of 65 with dementia. Think of all the conditions people have in Australia, and then think of how much they vary. How can we expect that everyone’s care and support needs will be met under one mainstreamed system?
Another point Vicki will raise is the urgent need for greater community awareness of dementia itself. As the film Still Alice identified, people think of dementia as an older person’s disease; something that comes with ageing. But it’s not, dementia does not discriminate. In the film, Alice was a mother with adult children who were studying and needed her support, she herself was employed as a teacher and at the peak of her career. She had worked hard to get to this point in her life, and then her condition began to strip her independence away from her. With more people in our communities able to recognise the symptoms of dementia, one would hope that collectively we could reduce the stigma that people with dementia too often face.
It was difficult listening to Vicki tell of her encounters with friends and family – or lack thereof, all because people didn’t know what to expect of her anymore, they didn’t know how to communicate or socialise with her. We listened at the other end of the phone as Vicki proceeded to tell us of the moments she’d be in town with her husband and saw people she knew. They’d quickly stop and say hi and tell her how good she looked. Which, don’t get us wrong, is lovely, but for someone like Vicki who has dementia, it’s frustrating to hear. Were they just simply making a passing comment, or were they implying that because she looked so good she couldn’t possibly have a terminal illness? Dementia is a somewhat invisible disease; people’s bodies don’t change, it’s their brain that does, which in turn affects different functions like in Vicki’s instance, her ability to calculate, her difficulty with spatial awareness and decision-making.
Alzheimer’s Australia’s Consumer Summit ended today with the presentation of a communique to Federal Ministers. The communique is an overview of priorities as set out by consumers who attended the Summit. It is our hope that the communique will help to implement positive outcomes for people with dementia to be ‘Still themselves’.
Much love to all who live with Alzheimer's and to the people that care for them. They are robbed of their life but still have a chance to participate and enjoy a different kind of life thanks to the support of family and loved ones. We need more money and effort put into this disease.
This story is very inspirational. I am still to see the movie but I am inspired. My husband had a CVA - [cardiovascular accident] plus a number of TIA's at the age of 57 and consequently developed Dementia = he died in 2009 at the age 63. I found it hard to accept the changes in our lives but knew there was nothing I could do about it. I am now halfway through writing a carer's handy reference guide that covers all the things I didn't know about - it should be completed by the end of this year. It took me 5 years to decide to write it - I am recalling some very happy memories.
thank you for sharing your personal journey
Hi my husband was diagnosed with early onset dementcia front lobe October 2014 This is a cruel disease for joe and my family especially not knowing a lot about it and what the future holds .Every day I look at my husband he seems confused and lost.I am going to see the film still Alice.I enjoyed reading about Vikki life and some same situations my husband is only 54 as well Thanks for listening.