A Voice for Dementia

Christine Maddocks from Eastbourne has been awarded a British Empire Medal (BEM) in recognition of outstanding advocacy for people living with dementia 

Christine (Chris) Maddocks was diagnosed with vascular dementia when she was just 60, and since then she has also been diagnosed with Parkinson’s disease and dementia with Lewy bodies. Following her diagnosis, Chris has used her own experiences to help others understand more about dementia and is an ambassador and trustee for Alzheimer’s Society. 

Chris, a retired police officer, describes herself as a dementia activist, giving talks and lectures to a variety of audiences to educate others about the realities of living with the condition. Becoming actively involved with the dementia movement has given Chris a renewed sense of purpose. 

Can you tell us about your experience of being diagnosed?

"I was out of sorts, so I went to my GP who said she was “there for my physical, but not my mental health”. I left the surgery in tears. I then had a series of strokes and was referred to the Elderly Care Assessment unit, where I was diagnosed with dementia at 60 (in 2016). I wasn’t given any information or referred to any services. I just went home devastated and cried for three months. After that I plucked up the courage to contact Alzheimer’s Society."

How do you use your experience to help others understand more about dementia in your role as a dementia activist? 

"There’s so much ignorance, which is why I raise awareness. When I was diagnosed, I was basically told to go home and get my affairs in order. I lost my job at the same time, which was crushing, as we all need a reason to get up in the morning. I don’t want other people to go through what I went through. 

"I work with the Dementia Voice Groups and Time for Dementia (a programme designed to raise dementia awareness in the next generation of healthcare professionals) as part of the work I do for Alzheimer’s Society, where I am a Trustee and Ambassador. 

"I run a peer support group in Eastbourne, and work with the local Dementia Action Alliance and NHS. I have spoken nationally and internationally at conferences, and I work with the media."

What do you particularly enjoy about being a dementia activist? 

"Making a difference; people say, “Oh, I didn’t know that about dementia”. I emphasise that there are three stages to dementia, a beginning, middle and end. I have found people tend to jump to the end, but there is a life after diagnosis. That’s very important to me. 

"I once shared my story and a lady came up to me afterwards and said, 'Thank you for sharing my story'. I said, 'I didn’t share your story, I shared my story,' and she said, 'No, you shared my story, I just can’t put it into words.' That’s when I realised, I could be a voice for people with dementia, who don’t feel they have a voice. "

What are the realities of living with the condition? Please could you give an example? 

"If you go to a medical appointment or even at the bank, people will stop talking to you and start talking to the person with you, if they know you have dementia. That makes me want to stand on the roof top and shout, 'I am still me!' It’s so frustrating."

Tell us about your BEM – what did you do when you first found out you were being awarded, and what does it mean to you? 

"I received a letter and at first, I thought it was a hoax. I shared the letter with my partner Heather, and she said, 'No this is true.' It still hasn’t sunk in. I now feel proud, humbled and honoured. I just keep re- reading the letter, just to take it in."

What would you like to see change with people’s understandingof dementia?

"That we can still live our lives. Currently, we come under social care, but I think we should come under health care. People with dementia have to fight for everything and are not listened to. I say, ‘see the person first and not the dementia’. They may not know who they saw yesterday, or where they went, but they will always remember how you made them feel, so smile and be kind. "

Have you found support from any local groups or people in Eastbourne or elsewhere in Sussex? 

"It’s a postcode lottery depending on where you live unfortunately, which 

is why I started my own group. If you need support, the Alzheimer’s Society have an online Dementia Forum that is open day and night and their Support Line on 0333 150 3456 is open daily. There is so much information on their website too including details of local services, at alzheimers.org.uk, most of all, don’t be afraid to get support. "