People with dementia: ‘We can still contribute to this society’

"When I was diagnosed it was just a shock, a disaster to me because I was not prepared." [Sarantis Michalopoulos]

This article is part of our special report Is Europe ready for Alzheimer’s?.

Europe needs a strategy to tackle dementia, two people with dementia told euractiv.com, stressing that they have a role to play in research and society in general.

Helen Rochford-Brennan is Chair of the Irish Dementia Working Group and a member of the European Working Group of People with Dementia. Hilary Doxford is a volunteer for the Alzheimer’s Society in England and also a member of the European Working Group of People with Dementia.

They spoke with EURACTIV’s Sarantis Michalopoulos at the 26th Alzheimer Europe Conference in Copenhagen.

Can you tell me about your personal experience of being diagnosed with dementia?

Helen: When I was diagnosed it was just a shock, a disaster to me because I was not prepared. I was still working, I was planning my retirement, I was enjoying my life and I was very involved in my community and on the boards of many organisations. I was deeply shocked. And I suppose for me, the most difficult thing was to let go all of that.

Hilary: It took me 6-7 years to get a diagnosis. I knew something was wrong with my brain seven years before I got the diagnosis. I went back to my general practitioner several times in that intervening period and when I got the diagnosis it was not a surprise to me because I knew something was wrong. It’s not the diagnosis you want to hear, but in a way, I found it as a relief to understand. I had something that told me what my problems were. Although I am still working now, it has a huge impact on your life.

Helen: Giving up everything is the hardest thing to do. You wake up in a morning, and you have nothing but isolation. You have no job, you have to step down as I did from all the organisations I was involved in. I was fully employed. These are difficult things. How do you tell your family? My husband often says he wants to have some of the Helen that was and not the Helen that is. When you are diagnosed, you are very alone and isolated.

Can you tell me about the kind of post-diagnostic support offered to you and how it could be improved? What should the main priorities be?

Helen: First of all, there is no cure, no medicine. I was under age 65 and there wasn’t any post-diagnosis support for me. There is nothing, absolutely nothing. So I went home, I had no one to turn to. The general practitioner was supportive, the pharmacists understood my illness, but other than that I had nobody and it took me a long time to finally accept. I was fully aware of the stigma around the illness.

Hilary: For me, it was the same. There was no support. I was on my own when I got the diagnosis. I hadn’t told my husband about my worries. So, when I went and told him it came to him as a real shock. In fact, the way I told him was really bad, because I had not thought about it. I had not prepared him for it. When I got the diagnosis, I was offered a follow-up appointment to bring my husband with me. After that, I was told to come back in a year, or (if I was worried) book an appointment when you feel like it.

This is not support. A year is too long. This disease can progress really quickly for some people. In fact, at the point of diagnosis, I was told I had 18 months to 2 years before I would need a lot of supporting care. And there is a medical professional telling me to come back in a years’ time? This is half way through the time period he is telling me I’m going to be incapable. He got that wrong cause it is 4 years now and I am okay still. But I had no support whatsoever.

Helen: My consultant used to say to my husband, “Please try not to make Helen feel depressed”, and he was saying, “How am I supposed to do it?” Then one day my consultant suggested to me to visit the Alzheimer’s Society. He thought it could help me, so I went there and it was true. There was light.

A nurse told me considering my background you should focus on research because research is really important today around dementia. A friend of mine was listening to the radio, a professor asking for people to be involved in research and she gave me his name. My son insisted I had to write a letter, but I didn’t know what to say. It was eleven o’clock on Saturday night and we were writing a letter. The next morning at 09:00, Professor Robinson came back to me. That was the first step after a long time that got me out of my house, that there might still be a life for me.

Can you tell us about how you became involved with the European Working Group of People with Dementia (EWGPWD)? Are you also involved in national level advocacy?

Helen: I became a member of the research working group in Ireland, which has existed for 4 years now. From there, I was nominated to become chairwoman, very soon after I joined, I think.

Maybe because you deserved it.

Helen: Maybe! I immediately created structures in the group and after that, I was nominated to become a member of the European Working Group of People with Dementia (EWGPWD). All these things were wonderful and enlightening experiences and gave hope that I can live again and make a contribution to society.

Hilary: I was similar. My first question after I got diagnosed was “How long have I got?” My second question was “What research can I get involved in?” And the neurologist said, “I don’t know.” I went to the website of the English Alzheimer’s Society and saw that they had an English network of volunteers and I joined that.

Now I am Ambassador for the Society and I joined the EWGPWD, like Helen. Happiness and hope were brought back to my life. We see now what is going on. Things are gradually changing.

What more can be done at European and national and level to improve the lives of people with dementia?

Helen: First of all, every country should have a national dementia strategy. But not just have it, they must implement it. We also should have a European Strategy for dementia. It’s the fastest illness globally. There is no cure. We need to be looking at how, even though there is so much research happening and I am optimistic that something is going to happen.

But we definitely need a European strategy. In every aspect of research, people with dementia should be involved, because we have the experience and knowledge.

Hilary: I totally agree. Now the World Health Organisation starts setting a framework that hopefully national societies and governments will then start to do something. It’s great that it’s on the agenda on this level. The real work is done on the ground. The people who deal with that every day need to have resources and strategies that will make their job easier and more effective.

How can policymakers, clinicians, and scientists, engage more with people with dementia in research and policy?

Helen: One of the main difficulties we people with dementia face is that most of us lose our careers, our jobs. So, a kind of a pension or disability allowance would be in order. When there is a requirement we would like, in particular for pharma for large conferences, to consider some kind of honorarium.

Because you are traveling a long distance and you want to buy a bottle of water and you might forget it. I will forget it. I will forget that I will need something. Expenses must be paid. Most of the time I travel alone. We want to be appreciated and respected as people who can make a contribution. I am still the same Helen like the one before I got my diagnosis. I want to contribute as much as I can.

Hilary: We need to build working groups of people with dementia and the European one is great. We are just setting one up in England now, but every country needs one. We need to develop networks of people with dementia, which will be good for us, for professionals. People with dementia need to have access to a group where they will be granted the assistance they need.