Chris Maddocks’ dedication to raising awareness about the real lived experience of people with dementia has earned her numerous accolades, culminating most recently in the award of a British Empire Medal (BEM).
Following this prestigious honour, presented by the Lord-Lieutenant of East Sussex, Chris reflects on her journey, from the devastating moment of receiving a diagnosis of vascular dementia, when she feared her life was over, to finding the strength to use her personal experiences to support and inspire others living with the condition.
Could you tell me about your life before your diagnosis?
I grew up in Cardiff and for most of my childhood I aspired to be a PE teacher – I was sports mad. But just before I took my O-levels, I contracted meningitis and lost six months of school. I only passed two exams, so I couldn’t get into college to pursue my ambition. I was devastated and had no idea what I was going to do next. All I knew was that I didn’t want to work in a nine-to-five office job. I later saw an advert for a Police Officer role and I thought, “that looks a bit different – I can do that”.
I served as a Police Officer for 30 years, working in lots of different departments and received three awards for good service during that time. After I retired from the force, I worked for different agencies, including the Environment Agency, where I looked at environmental crime.
When did you start experiencing symptoms of dementia, and how long did it take to receive a diagnosis?
Between 2013 and 2015 I had three minor strokes and while they didn’t affect me physically, they affected me cognitively. I had problems with my recollection, and I was extremely tired all the time. So, I took a long time off work because all I was doing was sleeping. From there, things seemed to get worse, and I thought I was going mad. One morning I woke up and I couldn’t remember how to get dressed, or if I’d taken my medication. I decided to visit my GP, and I remember telling her, “something is not right in my head”. My GP turned to me and said that she was there for my physical health, not my mental health. I left there in tears - I didn’t know where to go, or who to turn to.
A few months later, I lost coordination in my hand, so I was taken to hospital – they thought I’d had another stroke. From there, they referred me to the Elderly Care Assessment Unit despite me being just 60 years old at the time. I went to the appointment, which I thought was going to be an assessment, and the consultant diagnosed me with vascular dementia.
How did you feel when you received this news?
I wasn’t expecting it at all. One part of me thought “at least I know what I have now – I’m not going mad”. But I felt like I’d been given a death sentence. I cried for three months and didn’t leave the house because every time I tried to speak to someone, I’d burst into tears.
How did you find the strength to overcome the impact of your diagnosis and start adapting to a new way of life?
After three months, I plucked up the courage to call the Alzheimer’s Society, and they sent someone round to see me that day. They were just about to set up a course called ‘Living Well with Dementia’, so I signed up. Once a week for six to eight weeks, I met up with other people who had recently been diagnosed. We laughed together and cried together, and we talked about everything that was on our minds. It was a life saver for me.
You’ve become actively involved in raising awareness around dementia and educating others about the realities of living with the condition. When did this work begin, and what inspired you to start?
It was at the end of the Living Well with Dementia course when one of the organisers said, “Chris, you speak well. Would you be happy to share your dementia story?” I thought about it and finally agreed because I felt that I didn’t want people to go through some of the things that I went through when I got my diagnosis.
I lost my job because of my dementia, and they put me through a disciplinary process. It was just awful. I had no support from the healthcare system either – it was just a case of “you’ve got dementia, get your affairs in order”. I’d lost my sense of purpose and had no reason to get up in the morning. But I remember sitting at home and thinking “you’ve got a choice here, Chris. You can either sit at home and watch daytime television, or you can do something with what’s left of your life”. So, I decided to share my story.
I’ve since spoken at conferences, nationally and internationally, and I’m an ambassador for Alzheimer’s Society, the Lewy Body Society and NAPA [National Activities Providers Association].
Do you think that sharing your experiences and helping others has helped you to live well with dementia?
Definitely. It’s about keeping busy. In 2017, I moved from Cardiff to Eastbourne, where I now live, and started volunteering at a local hospice.
I’ve also taken lessons in beach fishing, and I do jigsaw puzzles. I don’t sleep well, so I usually get up early and head to the beach to take photographs of the sunrise. I know that my life will be shortened by my dementia, but I want to do as much as I can, while I can.
As well as vascular dementia, I was later diagnosed with Lewy Body dementia and Parkinson’s disease. But I’ve remained determined to make a difference to others.
You’ve also helped people in the LGBTQ+ community who have been diagnosed with dementia to gain access to help and support. Could you tell me more about this work?
There’s a huge need for support for LGBTQ+ people who live with dementia. I had a friend who was trans and he said to me “I take HRT every day. What happens to me when my dementia gets worse and I forget to take my medication?” LGBTQ+ people who live with dementia also find it very difficult to come out about their sexuality because they feel they will be ostracized. This is because they often regress back to a time when it was a criminal offence to be gay.
So, I helped set up an online peer support group for LGBTQ+ people living with dementia and I’ve worked with Alzheimer’s Society on a project called Bring Dementia Out. The purpose of this was to identify and address the specific needs of LGBTQ+ people affected by dementia.
What impact has your dementia awareness work had on the lives of individuals you’ve reached? Could you share some positive outcomes with us?
I remember sharing my story at a peer support group for people who have had strokes. Afterwards, a lady came up to me and said, “your story is very similar to mine. I’ve not been able to put my experience into words, and you’ve helped me do that, so thank you.” I thought, if my story can affect somebody like that then it’s worth it.
I also try to break down barriers around dementia and raise awareness about the impact a diagnosis has on people. I gave a talk at a Lewy Body convention and one of the things I said was “when you give somebody a diagnosis, please give them some hope…tell them about all the things they can still do despite their condition”. One of the clinicians came up to me afterwards and said, “thank you for saying that. I’ve never thought about it that way.”
The other thing I’m involved with is Time for Dementia. It started at the Sussex Medical School in Brighton, and it connects healthcare students with families affected by dementia to gain a deeper understanding of the condition. That’s been very successful and it’s being rolled out across the country.
How do you plan to keep building awareness around dementia in the future?
I’ll never stop raising awareness. I’m a dementia advocate and I’m going to carry on while I still can. I’ve been involved in lots of research groups – something I didn’t think I’d be able to do – but who better to help with research about dementia than someone living with it?
You’ll likely be asked to do more talks now you have your British Empire Medal…
Yes. It’s still a bit of a ‘pinch me’ moment. When I got the letter, I thought it was a wind-up, and not a very nice one!
Honestly though, I feel extremely proud, but very humbled and honoured because I never expected anything like this. It just goes to show the impact that my work has had on people.
What messages of hope would you give to people who are newly diagnosed with dementia?
I’d say to them that there's always a reason to get up out of bed in the morning, you’ve just got to find out what it is. It might be just getting dressed and going for a walk – that’s an achievement even if you don’t see it that way. Also, peer support is very important because it enables you to share your experiences with others going through the same thing.
Chris Maddocks will speak at the Care & Dementia Expo, to be held at the NEC on March 25-26.