In the film Still Alice, Alice has to leave her post as a university professor due to the progression of her young onset dementia. My name is Joy and I found this to be an amazing film. It's very moving and thought provoking, yet at the same time tells a story that is accurate and factual. I feel qualified to say this because I myself live with young onset dementia.
Alice and I have very different backgrounds, mine being as a nursing assistant with very little formal education. However, where Alice lost her role as someone who teaches with authority to the next generation of professionals I have found a new role at the University of Salford. I have surprised my family and myself by being invited to work as a Dementia Associate at the University. I teach on the M.Sc. Dementia: Care and Enabling Environments, I am a research advisor for a study of young onset dementia and I am specialist advisor to the Salford Institute for Dementia.
This work is vitally important in the way that approaches to dementia are taken forward. This includes finding a cure for dementia and also looking at the needs of people with dementia in the future. My role in this work is important to me because I am passionate about getting these messages out there. These messages are important to talk about so that the next generation will be more dementia friendly. My work as a dementia activist gives me a reason to get up in the morning and gives me a positive focus, rather than dwelling on the negative symptoms of dementia or the disease itself.
Where Alice highlights the need to engage in the 'art of losing' there is also the need to engage in the 'art of finding'; finding a new route. I have found out that I can contribute even in an academic environment, something that I thought I would never accomplish.
In the film, Alice's husband is played by Alec Baldwin. I found myself getting cross with the character of the husband. Why wasn't he spending more time with her? Why is he taking such a matter of fact attitude? In my life the role of my husband is played by Tony, quite where I would be without his love and care I don't know.
Throughout the film Alice's appearance diminishes suggesting that she is losing her identity. Colleagues at the University have commented that as they have worked alongside me for the past year, they have noticed that my appearance has become more striking and my presence more powerful. This may have something to do with the increase in my confidence due to feeling a valued part of society, something I lost the day I was given my diagnosis.
One aspect of my appearance that is often commented on is my hair. Before my diagnosis of young onset dementia my hair was boring brown with a bit of grey. Now my hair is vibrant purple.
This started as a statement of my intention to live well with this nasty disease. Having my hair dyed purple was just supposed to be a one off special treat given to me by my local salon. However, I got to be known as 'the lady with purple hair' rather than 'the lady with dementia', so now my hair is increasingly purple.
Young onset dementia means that trying to live in the moment is a challenge because the future is always lurking in the background revealing my fears. I don't know what the future holds so the fears can be overwhelming. My biggest concern is not being able to interact with my grandchildren. I feel that my grandchildren need me and I don't want to miss out on their growing up years.
I am STILL JOY. Deep down I know that I am STILL JOY and my voice is louder than the voice of Alzheimer's disease. I don't intend giving in to the voice or the disease any time soon.
This article was co-authored by Natalie Yates-Bolton of the Salford Institute for Dementia, University of Salford.