Tony and Joy are ARUK Champions and Spokespeople for the Santa Forgot Campaign. We spoke to Tony to ask him about being married to Joy who has early onset Alzheimer's and hat advice he has for other couples in the same situation.
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Did you have a good understanding of Alzheimer's before Joy was diagnosed with the early onset?
Sadly, both my parents and two uncles had dementia, so I had seen the disease at its worst. Joy spent most of her working life alongside people living with dementia, so we were very aware of the dementia journey.
Please tell us how you felt when you found out about Joy's early onset Alzheimer's.
My first reaction when we received the diagnosis was relief. We had been trying to get a diagnosis for 6 years, and at last- we had a diagnosis and could start to get support.
Joy lives at home with your help, so what help do you have to offer her on a daily basis?
My main role is preparing meals, organising medication and helping to plan journeys for Joy's awareness work. Joy is a very independent person and I want to encourage that for as long as possible.
Joy has given up work but does a lot in the local community, so can you tell us a bit more about this and how has it helped her?
Joy's awareness raising work is one of the main reasons that she is so independent. Keeping active and having to think about talks that she gives is keeping her brain alert and is doing more than any medication could do to help her.
Joy started by producing a customer facing staff booklet and visiting nearly 200 local shops to encourage them to be dementia friendly. She was instrumental in setting up the only support group for young onset dementia in the Manchester area. She is now a media ambassador for Alzheimer's Research UK and The Alzheimer's Society. She is a dementia associate for Salford University and recently received an Honorary Doctorate for her work.
Her self-doubt and anxiety levels were such that she had to leave work- so how did you cope during this time?
It was a very difficult time for us both, but much more difficult for Joy. It was very hard to encourage Joy when we didn't know the cause of Joy's difficulties. I think the worst part was when Joy was not taken seriously. Some of the doctors wouldn't believe that anyone so young could be developing dementia. It wasn't until we moved from Kent to Salford in 2012 that we managed to get the diagnosis that we urgently needed.
Joy didn't receive a diagnosis for three years following the tests, so how did it make you feel to not be able to attribute her anxiety and self-doubt to anything specific?
We had feelings of frustration and anger during this period. We went through many stages of asking questions but receiving no answers. We almost gave up trying several times.
What have been the biggest highs and lows during this process?
There have been several highs and lows. Joy's frustration at forgetting names or losing items is very difficult to live with. I can't imagine how she feels sometimes and trying to reassure her is often enough to send her into a depression or rage.
The highs have come about due to Joy's passion for helping everyone to understand dementia. Joy has won several awards for her voluntary work including a Points of Light from the Prime Minister and an honorary doctorate from Salford University. She has met and spoken to many famous people, from politicians to actors, and shared her experiences with them.
What is a typical day like in your world now?
Every day is different. It could involve teaching at the university or sharing with a local group or business. Sometimes we plan a day off, which is great until the phone rings. We are very close to Media City, so are often called upon to talk about dementia. We never turn anyone down if we can possibly help it, because Joy's motto is "While I Can, I Will".
What advice do you have for other people who are supporting their partner or spouse with Alzheimer's?
Don't try to do it on your own. Join a carers' support group and find/make time for yourself.
Today, Wednesday 16 November, Alzheimer's Research UK (ARUK), launches Santa Forgot, a disruptive and beautiful animation that imagines a world where the magic of Christmas has been lost because Santa is living with the effects of dementia and no longer visits children across the world on Christmas Eve.
The attention-grabbing concept highlights the varied symptoms and social isolation of dementia and raises awareness that the diseases that cause it, most commonly Alzheimer's, strike indiscriminately and really can affect anyone, even Santa.
Santa Forgot's central character is a young girl called Freya, who has grown-up in a world where Santa has stopped visiting on Christmas Eve. On learning about Santa's condition, Freya travels to the North Pole. She offers her own support and re-mobilises the redundant elves as researchers, explaining her belief that 'if Santa has a disease, research can find a way to fix it'.
Through the depiction of Freya and Santa's elves, ARUK showcases that only with world leading research, new approaches and innovative thinking can the diseases which cause dementia be defeated.
Dementia is the world's greatest medical challenge, not only for the individuals affected and their families, but also for society as a whole. Over 850,000 people in the UK have dementia, and the condition has an economic impact in the UK of over £24bn a year, more than cancer and heart disease combined. It is also the leading cause of death amongst women in the UK.
Hilary Evans, Chief Executive of Alzheimer's Research UK, said:
"Santa Forgot is a poignant and powerful reminder that dementia doesn't discriminate. We have to be provocative about dementia, to help fight misconceptions and fatalism around the condition and to demonstrate that pioneering research holds the answers. Santa is an important cultural figure, but the idea that he too could be affected drives home the point that dementia can strike those most special in our lives."
"Dementia is one of our most feared conditions, but misunderstanding persists that it is an inevitable part of ageing. Santa Forgot, like previous campaigns from Alzheimer's Research UK, makes the simple point that physical diseases drive dementia, most commonly Alzheimer's. We have made enormous strides against diseases like cancer and AIDS, and with the right research we can do the same for dementia. Santa Forgot reminds us to believe in the power of research."
Stephen Fry, narrator of Santa Forgot, said:
"From the moment I was told about Santa Forgot I wanted to lend my support - it is an inspiring and beautiful take on a Christmas tale. I urge people up and down the country to get behind the campaign so we can fuel the fight against dementia and take a step forward to making it history."
Liz Ayre an Alzheimer's Research UK Champion:
Liz lost her husband Mike to early-onset Alzheimer's in 2013 aged just 51. Their daughter Ciana voices Freya in the animation. Liz said:
"Santa Forgot is beautiful, sad and hopeful all at once and stirred so many different emotions when we watched it. The film shows that dementia doesn't discriminate: it affects people from so many different backgrounds from nurses and teachers to world leaders and eloquent writers.
"If we're ever going to change how society views, or often ignores, dementia, we have to be a bit confrontational and challenge people's misconceptions. I hope Santa Forgot gives people two minutes to think about the impact of dementia this Christmas, and be inspired by how we can change the future with research. I'm proud that my family has been involved in the campaign, and to hear Ciana bring Freya's voice to life in the animation is a special moment for us and a great tribute to Mike."
tagged in Alzheimer's Alzheimer's Disease