A Problem Shared Is a Problem Halved: A Conversation with Michael Anthony Booth

Living with Dementia Advocate, Product Tester and Reviewer, Dementia Coach, Public Speaker, Mentor, Consultant, Educator, Trustee

By Daniel Brown

I sat down with Michael Booth last week. Michael is on our advisory board, lives with a rare form of young-onset dementia called diffused atrophy dementia, and has, against the advice of every clinician he spoke to, written a murder mystery novel. He cared for his mother through a decade of dementia before being diagnosed himself at 46. He had a lot to say about acceptance, about what to do in the first week after a diagnosis, and about why you should give your family room to fall apart a little.

Tell us a bit about who you are.

My name is Michael Booth. Author name Michael Anthony Booth, I don't want to get the two mixed up. I am a person living with dementia, specifically a very rare type called DAD, diffused atrophy dementia. I live in England, born in England, grew up in South Africa, came back about 20 odd years ago.

My mom had dementia beforehand, so I was caring for her. She had logopenic progressive aphasia, which means her speech went very early. Quite difficult to care for. I cared for her with my dad for 10 years before she passed away from the disease. I was diagnosed not long after that at the age of 46. I've been living with it for coming up to 5 years.

Work-wise, I was a project manager. International work, cable designs and manufacturing. I trained people, set quality standards and production methods. 

What did you like about the work?

The challenges. There was never one day the same. Always new things were coming up and we needed new solutions. There was never a stupid question within the team. You had a question, you asked the question. You had an idea, you gave the idea. I firmly believe that people should have the ability to express themselves and to contribute. It doesn't matter how senior or how junior you are, you speak. I'm an avid believer in teamwork and in doing research.

That came in very handy with my mom's diagnosis. Being an inquisitive person, I studied everything about dementia because I knew nothing about it. My granddad had dementia but he was well into his 80s. That was kind of what I knew. When my mom was diagnosed at 55, I thought, well, she's way too young for this, what's going on? I didn't even think it was a disease. I just thought people were getting old.

So I had to do a lot of research, and then I got fascinated by it. How many different types there are, how many subtypes, how it affects people differently based on personality and upbringing. I picked up a whole load of rubbish at first, but at the time you don't know it's rubbish until you start reading other things. It's like building a jigsaw puzzle, putting it all together.

Little did I know it would serve me later on.

Tell us about your own diagnosis journey. When and why did you get diagnosed?

I was going through palliative care with my mom. The doctors were walking us through all of the steps of what was going to happen. By this time my mom was pretty much comatose, really in late stage.

The doctors were telling us, prepare for the worst. And I kept asking the same question, but I didn't know I kept asking the same question. My dad was with me, and one of the nurses took my dad out and asked me to stay. She started asking me a number of different questions, questions she had already asked me before, but I didn't answer them the same. She said, have you ever thought about getting tested just to be sure? Every now and then it can be familial.

I just put it down to stress. You can imagine, you're literally watching your mother die right before your very eyes. But I would be driving around and forget where I was going. Sometimes I had to actually pull over and check my phone to find out where I was heading.

We did a full neurological workup. I had to speak to a psychiatrist on a couple of occasions. My wife had to speak to them as well, they check the family, not just what I'm saying. Then I had multiple scans. That's when it came back that I was diagnosed with young-onset Alzheimer's that affects all four quadrants of my brain. Normally a person is diagnosed in one specific area of the brain, like PCA or frontotemporal. Mine affects all four quadrants. The nickname they've given it is DAD, diffused atrophy dementia.

My mom's diagnosis process, because she was out of the system at the time, took 4 and a half years. Extremely emotional and painstakingly slow when you know something's wrong. It caused massive arguments, huge rifts within the family, particularly between my siblings and parents. This is what the medical fraternity, the clinicians, don't actually understand. What's going on behind closed doors when it takes so long.

But my diagnosis only took a year, because I had the links into the mental health team and the neurologist. So it shows it can be done.

How did you feel afterwards?

Like a kick to the stomach. It's a heavy blow. Bear in mind where my mind was, where my body was, where my emotions were. I was diagnosed between 6 and 8 months after my mom passed away. We were still grieving. And then a month later we went into lockdown with COVID. It was a traumatic time. I was still hoping it was just stress, that we would work through it, but there was an actual diagnosis. It was really difficult to come to terms with.

How about your family? How did they react?

Much the same. My dad was going through the same thing. He just had 10 years of living with my mom with it, and now suddenly he finds out that his oldest son has it as well. That was quite a blow. It took him longer to come around to it, because he never really accepted my mom's diagnosis. He always tried to fight against the disease rather than working with it, which created a lot of tension within the home. I was sometimes called at 2 or 3 in the morning to go around and sort things out because it had got a little bit too much.

I don't think people really understand, unless you live with it, what it's like behind the closed doors of living with somebody with dementia. When you see them out and about, we try to control a lot of the symptoms. We subconsciously do it. If you've got a limp and you go out, you try not to limp as much. It's that type of scenario. But when you're at home and you're in a relaxed environment, you relax, and that's when it becomes a problem. That's when situations arise.

Dealing with dementia behind closed doors is a totally different kettle of fish.

You've talked a lot about acceptance. After everything you just described, how did you get there?

It's not an easy process. But I am a person whose cup is half full. I always try to look at the positive side of things. I was down for a little while, when I say a little while it was a few months, trying to figure this whole thing out. Eventually I sat down and reasoned, and thought, what's really changed from pre-diagnosis to now? Nothing really, at this moment in time. So what can I do?

Because after the diagnosis, I had to get my driving checked. They gave me a test and I couldn't remember the answers, so they said it would be too much of a danger to be on the road. They took my license away. Then I had to contact my business insurance, because by law you have to. I was self-employed at that stage as a consultant, and they said they weren't able to offer me cover anymore. So literally within a week I got my diagnosis, lost my driver's license and my job. We went from two decent salaries down to one, yet the bills stayed the same.

There was a lot to comprehend. But I tend to look on the brighter side, and I thought, well, what can I do? I was already involved with the likes of Alzheimer's Society and Dementia UK through my mom. So I decided to get more involved and started to advocate a lot more.

What I found when I spoke to people, and I do a lot of one-to-one coaching, is that a lot of the problems people have once they're diagnosed, and their families have, is that they don't give themselves enough time to accept the diagnosis. It's not something that just happens overnight. It takes a lot of soul-searching. There's a lot of planning that needs to go into it, because you've got to get your Legal Power of Attorney sorted, check your wills. Once you're not cognitive enough to sign any of these documents, it's too late for you or your family. So you've got to try to get everything done as much as you can, plan everything moving forward.

My aim was: use the skills I've got to try to educate people, help people to accept, and from there just enjoy the rest of the time that I have. I don't know how long it's going to take or what's going to happen.

One thing I learned, which took me a little bit of time, was that my wife and I started arguing and bickering, which we never do. I wasn't giving her the space to deal with her emotions while I was going through the same thing. She was asking the same questions about the future. What's going to happen to my husband? What about my son? He was 18 at the time. What are we going to do about finances? Will we have to sell the house?

I wasn't giving people the space to deal with those emotions at the same time. Rather than each of us sitting with it, I decided let's openly discuss them, and we can work through them together. That helped a lot. It's not everybody's cup of tea, but it works. A problem shared is a problem halved.

What practical steps did you take?

I used the resources I had at hand. I used the mental health team. For anybody who doesn't have access, you literally go to your primary care provider and ask for a referral. It is your right to do so if you're diagnosed. Through the mental health team I got access to specialist nurses, psychologists, assistant psychologists, psychiatrists.

The first step was, I requested to speak to a psychologist, which I'd never done before. I'd never seen the benefit of talking therapy. But I had emotions and feelings I couldn't share with my family. Now, that contradicts what I've been saying, because I've been saying “talk about things,” but I had deep-seated feelings I didn't really want to put on my family because they were going through the same emotions. It was only going to make things worse if I started telling people, I'm scared, I'm worried, I don't know what's going to happen. When I tried to share those things, it always ended up in a whole lot of tears and we weren't getting anywhere.

So I thought, I'm going to speak to a professional. It doesn't have to be a professional. You could have a trusted friend, just somebody who's going to be able to support you through your journey and not necessarily give you answers, but just listen to how you're feeling.

While I was talking about it, they asked if we could have some of these discussions in front of student psychologists and psychiatrists. That's how I got into training with the NHS, helping them understand what it's like to live with this and the emotions we go through.

In addition to that, I contacted social work. Again, it's your right to request one. Normally social workers are only given to you at a late stage, but you can request one earlier. I requested a social worker who helped guide us through the documentation. The LPA, for example. It's really important to understand that there are two types of LPA, the legal and medical one, and the financial one. You need to do both. And don't assume that because your wife or children are your next of kin they'll get the right to do so. They don't. So it's really important to get that done.

Then I updated my will. Bank accounts that needed sorting. Whatever I didn't need in my name, I transferred over to my wife's name to make everything a whole lot easier. There's a lot of planning, a lot of forethought. The whole process is to try to make it as simple and painless as possible for later on.

You've got to let go of your pride a little bit. Let people take control of certain areas that you wouldn't normally, like your finances. It's there as a safeguard. By signing all of this documentation, it doesn't mean you don't have access or you can't control things. You can. You've just got a backup just in case. Because dementia is declining, you get to a stage where you can't manage, and somebody can just step in because you've done the prep work.

All of that is part of acceptance. So you can see why it doesn't happen overnight. Once you've got those things sorted out, for me anyway, my nerves settled. A lot of my inner demons settled. I was able to start moving forward and openly talking about things.

Does it still get to me? Yes. Sometimes I have down days. Sometimes I have down periods. But you've got to learn techniques to manage those. I listen to music. I'll go for walks. I'll take time when I need to be alone. Basically, that's how I manage it.

What advice do you have for other people post-diagnosis?

The most important thing, especially for your family, is to give them space to deal with it as well. Allow them to deal with it in their own way. Don't try to force your way of thinking and your questions onto everybody else. But talk openly at the same time. I know that sounds contradictory. Give each other space, yet talk.

The other thing is to try to control your stress levels as much as possible. From doing a lot of work with people living with dementia, I've found that as soon as your stress levels go up, and it doesn't have to be your stress, it could be somebody around you, your symptoms get a lot worse. Once a person starts to get agitated, then I start to feel agitated. It's similar in a way to being on the autism spectrum. When a person with autism gets agitated, you take them out of the room. It's much the same way of dealing with things.

Keep your stress levels as low as possible within the home. Then you're able to manage and concentrate.

But most importantly, don't let the disease take over your life. Yes, it's going to be part of your life moving forward, and yes, it's going to shorten your life. All of those things are 100% true. But while you can, live. You don't want to get into the late stage and think, I should have done this, I should have done that. You don't want your family to have regrets either. You want them to remember good times. I want to leave my family with happy notes of me, not of them remembering all the difficult times, the sad times. That can only happen if we accept what's coming.

Yes, there are going to be challenges. Are there going to be discussions and arguments? Yes. Periods of feeling sad? Yes. Will there be tears? Yes. It's how you deal with those, how you move forward, how you live your life, and get involved. It's amazing how much it helps.

Another little tip that really helps: find a peer support group. Whether online or near you, find one. If you're a carer, find one for carers. If you're a person living with it, find one with people diagnosed. It's amazing how talking to people who are going through similar things can help. You can tell them things and they can tell you things that you wouldn't normally tell other people. They understand where you're coming from because they're going through it.

What does acceptance mean to you?

For me, acceptance means my new reality. Dementia is a terminal, neurodegenerative disease. It's going to take a number of years, we don't know how long.

Acceptance is living in the now. Looking at the past, accepting who you were. Looking to the future and preparing for it. But always living in the now. You're able to go into the future and plan. You're able to look back and see, okay, I used to be able to do that and I can't anymore, but now I can do this.

It's being able to adapt to everyday situations that you start to struggle with. It's not the dictionary definition of acceptance, but that's what I would put into the basket.

You've recently written a book. Actually, two books.

The first one is more on the acceptance side, Dementia, You Are Not Alone. Guidance on how to find support.

The second is a murder mystery novel. Forget Me Not: The Letter in the Headboard. Writing it was a challenge. I used to enjoy creative writing when I was younger. I'd been writing short stories for the dementia training I was creating, to make it relatable. The stories were based on real life experiences, I'd change the names. Then I had this plot in my head that kept bouncing around for nearly two years.

I thought, what if I try? But everybody I spoke to, psychologists, psychiatrists, neurologists, told me my brain wouldn't be able to manage it.

One day I just thought, I'm going to sit down and start typing and see how far I get. Even if I never finished it, even if I was the only person to ever read it, at least I'd know I'd done something. I started writing. Then a friend asked if she could read it. I sent it to her, hadn't quite finished. She said, this is really good, you must finish this.

A number of times I almost stopped. Trying to keep the characters in line, I was getting them mixed up. I was jumping from one area to another. My wife would help me keep the story in line. I had pages and notes all over the show.

The symptoms displayed by Moira, the main character, are the symptoms I live with. She's my alter ego, I suppose. She discovers this murder, and it goes into a much bigger plot. It's based in Hartlepool. I thought I was going to make places up or use places I hadn't been to, but I found it really difficult to describe areas I hadn't been to. So I just stuck to places I know. I tried to limit the number of characters so it was easier to manage. But it was still difficult.

What I found really difficult was describing my symptoms in a way people would be able to understand and relate to. Not to feel sympathetic, because I don't want sympathy, but rather empathy. Giving them the ability to walk in my shoes for a little bit. But I didn't want to write the whole book about my symptoms. That's why I mixed it in with a bit of murder and a bit of love story, so you're actually being educated without even realizing it.

The relationship between Moira and her carer, Trina, who's also her best friend, I hope is something carers will pick up on. The way she phrases things, the way she manages situations. She doesn't panic. The person repeats the same thing a thousand times, it's okay, she just carries on. That's what I tried to build in. It's the way I used to care for my mom. It's the way my wife cares for me. Keeping those stress levels down, managing the situation, and moving on.

How did you manage writing while living with dementia? Any tools or tricks?

I set my computer up so the font is larger. I set the typeface to Trebuchet, which is the easiest for people living with dementia to read.

After a period of time, fatigue starts to set in. Some days I can't think straight at all. I leave those days, I won't write. Other days I'd start writing fine, and then suddenly it was like letters would all be mixed up. So I'd switch to a dictation app. The problem with dictation is you're supposed to say comma, full stop, capital letter, and I forget all of that. So I just talk and it writes, and I go back and edit later.

Some days were better than others. There were days I could write a couple of chapters. Other days I'd have to be in bed because it took that much out of me. Sometimes I would dictate and my wife would type. Notes from my computer, papers all over the house.

And now I can't even believe I'm thinking about doing it again. The first book ends on a cliffhanger, and everybody's writing back saying I have to finish it. So we'll see.

A few things stuck with me from this conversation. The first is what Michael said about LPAs, that there are two and you need both, and that next of kin doesn't automatically inherit the right. I think a lot of families assume otherwise.

The second is the framing of acceptance as something that takes prep work, not just a mindset. Sort the documents, sort the accounts, sort the will. Then your nerves settle.

The third is the line about leaving your family with happy notes.

Michael's books are Dementia, You Are Not Alone and Forget Me Not: The Letter in the Headboard. He's kept the prices low on purpose. If you're reading this and you want to share something with a family member or a colleague who's just been diagnosed, those are worth a look.

If you're a clinician or carer and you want to hear more from Michael, he sits on our advisory board and does one-to-one coaching. We'll be opening up more of that through the Simon app soon.

Thanks for reading.

Daniel

Connect with Michael Here:

https://www.amazon.com/Dementia-You-Are-Not-Alone/dp/1917367244

Website: https://www.michaelanthonyboothauthorpage.co.uk/

Email: michaelbooth2023@gmail.com

LinkedIn: https://www.linkedin.com/in/michael-booth-4598212a7/