A Rebellious Spirit

There are three types of advocacies — self-advocacy, individual advocacy and systems advocacy. Dr. Jennifer Bute is an expert in them all.

Recently awarded the 2022 DAI Richard Taylor Advocates Award by Dementia Alliance International, Bute, 77, works tirelessly to provide hope and practical resources to people diagnosed with dementia, their families and care partners.

She is also active in creating change within the systems that support people impacted by dementia as a speaker to medical students, care professionals and others.

Formerly a highly qualified senior doctor in a large clinical practice, whose patients included those with dementia, Bute began to notice symptoms of dementia in herself in her late fifties. She was diagnosed with young-onset dementia in 2009.

Recognizing her dementia as an opportunity as well as a challenge, Bute has created a website full of no-cost practical resources. She is also the author of a book, Dementia from the Inside: A Doctor’s Personal Journey of Hope, and a popular weekly Facebook blog.

Here, Dementia Connections speaks with Dr. Bute about her rebellious spirit and her lifetime of caring for others:

Q: What in your early life encouraged a focus on caring for others? Why did you become a physician?

A: My mother died when I was four and left my father with four little girls, aged two, four, and twins of six. And he brought us up entirely by himself for 10 years. He taught us to be independent and to look out for each other. I have my father to thank for my attitude.

I broke my leg at school when I was nine, both my fibula and my tibia. In those days you were told not to fuss, and I was encouraged to walk around on it. They later discovered that, not only was my leg broken through both bones, but it was also horribly out of place because of having been made to walk on it.

Dr. Jennifer Bute

In the end, it was reduced without anesthetic. I can still remember it. And I thought, this is rather good. These are clever people. I think I would quite like to become a doctor one day. So, a bad experience turned out to be a good one.

I had a bit of a rebellious spirit then and I still have. Teachers said no way could I be a doctor — that females were only nurses. It was just a challenge, really. I became a doctor because I was nosy, and I wanted to know why everything worked.

I worked in Africa for quite a long time running a hospital, then in India and in Ukraine. I’ve worked around the world in the slums and didn't get paid a penny for any of it, but I just loved it. I really, really loved it. And then, in the days again when female doctors weren't very popular still, I worked my way up through the ranks and became a physician in charge of the biggest practice in Southampton.

"I'm just grateful for anything that I can do to help and encourage other people and get them to see dementia is not the end of the world, because it isn't."

– Dr. Jennifer Bute

Q: In 2009, when you realized the need to transition to a new phase of life because of your diagnosis of Alzheimer’s disease, how did you psychologically prepare for and manage the transition?

A: I didn't really have any preparation because once I got the diagnosis — it was Alzheimer's to start with and changed later to probable Lewy body and vascular dementia — I had to take early retirement immediately. My patients meant too much; I couldn’t risk continuing to practice. The challenge after I retired was what was I going to do? It was another opportunity. Everything for me is an opportunity or a challenge.

Dr. Jennifer Bute

After the diagnosis I realized how few resources were available for people living with dementia. In the past I'd been involved in writing medical educational leaflets that help patients learn about their own conditions, so I thought I'd write some about how to cope with dementia. That was how my career as a dementia advocate started. When it got around that I'd written all these leaflets, people wanted me to talk about living with dementia. Now, whenever I speak at a conference, somebody hears me and gets me to speak at another one.

I'm just grateful for anything that I can do to help and encourage other people and get them to see dementia is not the end of the world, because it isn't. There are many conditions that are far, far worse than dementia. But to everybody, whatever they have, it's always the worst. I understand that, but we can live a lot better with dementia than many people think we can. I passionately believe that we can slow down the progression of dementia using a rehabilitation approach, like what is now standard treatment after a stroke. This approach is the basis for the cognitive stimulation method I discuss on my website called Japanese Memory groups.

My son’s favourite phrase is, “You can’t hide behind your diagnosis, Mum. Find some way to cope.” That approach wouldn’t work for some people, but it does for me because I have a rebellious streak and I’m very happy to be challenged to keep going.

"Advocacy means enabling the cause of dementia to be understood in a more positive way and to speak out for other people that aren't so able."

– Dr. Jennifer Bute

Q: What does advocacy mean to you?

A: It means so many different things. Advocacy means enabling the cause of dementia to be understood in a more positive way and to speak out for other people that aren't so able. Advocacy is enabling other people, just as I did as a physician, to get the best that they could from the health that they had. For me, advocacy is about opportunities and education. So much fear about dementia is portrayed by the media. We need to educate and enable people, and to give them hope that dementia may offer unexpected gifts.

The reason my website started was because I heard professionals talking about dementia in a very negative way. So, I asked if I could give a talk to the professionals, and my son recorded it and put it on a website. Before Covid, each year we would make a new video on something, whether it's sundowning or hallucinations or living alone or end of life issues — all very important issues. I’m glad to share what I've learned as I live amongst people with dementia — on my website and with thousands of people through my Facebook blog.

Q: How can we better support people living with dementia as advocates for themselves and within the wider dementia community?

A: I think that a lot of people with dementia feel very threatened when asked to become advocates. They may be uncertain of themselves and haven't yet found the hope that they need to. Encouragement is required, otherwise people can just be overwhelmed. I just love going to groups of people with dementia and encouraging them to do something that they didn't think they could do, even the simple things they used to do.

Most people seem to think people with dementia don't have any views on anything because they're not expected to have any views on anything. Many people with dementia wouldn't dare suggest or say anything unless they were encouraged to because they have absorbed that assumption already, which is incorrect.

I have a rebellious spirit, so it's too jolly bad if they don't want to hear what I have to say, but for some people it's not like that. People with dementia must be nourished and encouraged to share so that they feel they have value and purpose. Everyone has got something to contribute because everyone's story is different.