When Peter Berry was first diagnosed with early-onset Alzheimer’s at age 50, his first thoughts were that he was a burden to his family and they’d be better off without him. Eventually, he dealt with his depression by thinking about how alone he and his family felt after his diagnosis and choosing to help others going through similar experiences. Now, Berry is an Alzheimer’s advocate who shares his experience on his YouTube channel, social media page and at speaking events.
- Berry believes that eating well, going on long cycling trips and frequently socializing with others may help him slow down the progression of his Alzheimer’s
- Know when to rest, but also know when to be active, he adds
- People with dementia want to be treated the same as people treated them before their diagnosis, says Berry
- He requests that people do not ask their caregivers how those with dementia are doing when people with dementia are present
Being Patient spoke to Berry about his experience living with early-onset Alzheimer’s and how he worked to combat his depression through patient-centered advocacy.
Being Patient: What initially prompted you to see if you might Alzheimer’s? How did you know that something was wrong?
Peter Berry: I didn’t think that anything was wrong. I was happy with the way things were going. It was my wife who noticed the problems that I was having. At that time, I had been running my business for 24-25 years but wasn’t running it as well as I had in previous years. I was taking a lot of notes, but I was stumbling and making many bad decisions. I think my wife came into our office at home, and it was trashed with sticky notes reminders, something I had never tried before. She got the ball rolling with getting a diagnosis and getting me to see a doctor. That process took three years, believe it or not.
Being Patient: Some people develop mild cognitive impairment before being diagnosed with Alzheimer’s. Was it the same for you?
Peter Berry: My doctor was trying to rule out elements such as depression and other possible conditions. It took three very long years for me to be diagnosed. And it was only pure chance that we got a diagnosis because we were approached by someone else. Someone had looked at my test results and came up with the idea that this guy is not doing well, something is wrong, so let’s look at his brain scan. They compared my cognitive scans, and they could see the deterioration of my brain over a period of three years.
Being Patient: When you got the diagnosis, what was that like? You mentioned that you considered ending your life. How did you get over the shock?
Peter Berry: When we sat down with the doctor, she said that I had early-onset Alzheimer’s and told me that my life expectancy was eight to ten years maximum, I believe. I thought, yeah, I can deal with this. No big deal. So what? I was quite numb to the whole thing. It was not really until I got home, or when we got home that I realized the diagnosis was for my wife and me, and not just me as an individual.
I think over the course of a few weeks, because there was no support after the diagnosis, the outcomes associated with the disease weighed heavy on my shoulders. For a good year, I went into a deep depression. We never told anybody about the diagnosis for probably twelve months. We decided to keep it very quiet because to be very frank, I felt quite embarrassed. To say, “I have Alzheimer’s”—I was ashamed of it all. The depression got worse, worse and worse. My skills began to diminish, which varied in my reading and writing. It was then that I thought that my family would be better off without me; that is where I was mentally during that time.
Simple things such as signing my name became very strange to me. Still, to this day, I cannot remember if I am right- or left-handed; I have absolutely no idea. My writing is pretty much the same regardless of what hand I put a pen in. And it came to me that I had no idea what my signature looks like. So I just wrote my name, and I did not know if it was my signature or not. And it does get you down, little things like that. I came to realize that I knew what my name was. But, my signature, every time I signed it, it was different from the last time I signed.
These are the types of things people don’t realize. Another scary situation that I cannot dwell on, but think about when I go to bed is, what if I wake up tomorrow with something else that I cannot do? This is a big problem. I can live without signing my name or forgetting this interview within an hour. I cannot live with the fact that I may wake up tomorrow and my ability to speak like I am now has been drastically changed within that night or three or four weeks, or even a few months. That is the bigger picture that scares me about dementia: not being able to project myself like I used to. That is why I try to do so much now.
Being Patient: How did you get over your depression and suicidal thoughts?
Peter Berry: It is such a strange thing. I am a glass-half-full type of person now. I have always been a positive person. I think when I got to my lowest point, to virtually no return, I thought, “I don’t think that any living person should have sunk to this level of depression.” It suddenly dawned on me that there was no actual person helping my family or me while going through this transition. I thought, “Hang on, I know what it is like to be here.” I know what it is like to have my head virtually “in the loops.” So, if nobody is helping us, then who is helping other people who have been diagnosed last week, or tomorrow or even six months ago? That gave me the encouragement that I needed to think to myself, OK I have a purpose now: to educate others, help others and hopefully inspire people to live as well as they can with this condition. I try to explain that life is not over with dementia; life is just different. That is what stirred me up. That gave me a second chance and a purpose, and that is what people with dementia need: a sense of purpose to feel as though we have something to give.
Being Patient: What are some of the hurdles you face in your everyday life, or things that catch you off guard, caused by your condition?
Peter Berry: The YouTube videos I create were my daughter’s idea, believe it or not. I used to write everything down in my journal. But when dementia got to where I could not read or write, she said to me, “Dad, you should make videos.” I said, “Well, I don’t know about that,” but she ended up helping me create a video. We thought that I’d probably make four or five videos, but here we are now. We have about 85 weeks’ worth of videos.
Being Patient: It does not seem like your condition has robbed you of your words at all. Why do you think that is?
Peter Berry: I have a theory. People like me didn’t get dementia on Monday and were diagnosed on Thursday. We have lived with this condition for many years. So as people, we develop natural coping methods. We can probably have a conversation with someone in the street for ten minutes, and they would not even know that we have dementia. We get so good at putting on a show. It’s a coping strategy that we naturally fit into our lives. You try and live your life the best way you can. It’s not like you go out, break your leg, and it’s difficult to walk. It’s similar to having pain in your right hand for six months, and then you gradually alter to using your left hand.
I think this is what happens with all of us with dementia. Over a period of time, we learn to cope. We cope very well in our earlier stages because we are physically active. That is why I emphasize the importance of exercise. I spend a lot of time cycling. I have cycled across the country. I cycled across England last year to raise funds for young dementia here in the UK. It is one of the ways that I cope with my dementia. I have given dementia an identity. I picture my dementia to be a little person. My dementia is a little short fat man with a pointy nose, who is grumpy. Something I say quite often when I go cycling is that I’m leaving my dementia at home. I leave him sitting a home twiddling his thumbs, and he is not in control—I am. I am in control! I become what I was, instead of what I am now. You’ve got to be able to leave your issues at home for a while and get away from them. I believe that physical exercise is such a wonderful thing. It helps me deal with everything.
Being Patient: Otherwise, does your dementia feel all-consuming?
Peter Berry: People who suffer from the disease know the journey and path we’re taking. We all know the end product of this disease. But it’s all about what you do in between. It is not about what I can’t do, but what I can do.
Being Patient: Do you feel like you can slow down the progression of this disease?
Peter Berry: I think that if you eat well, and you live life in a positive manner, then that helps to slow the progression down. If I sat in this house, didn’t ever go out, chose to be depressed, and didn’t interact with others, I think that I would be a lot worse than I am now. Medication and doctors actively play a part in this as well. I also believe that we are responsible for ourselves. It is up to us to help ourselves.
Being Patient: You’re going to be on television soon for your participation in The Restaurant That Makes Mistakes. Can you tell us about that project?
Peter Berry: I was contacted by Channel 4 here in the U.K. They wanted to do a documentary with people who have dementia and learn about their interactions in the work environment. Technically, we are unemployable, according to different sources. A group of 14 others got together with different disabilities, and we opened a restaurant in an old fire station. We oversaw that restaurant for seven weeks, with support from several top chefs.
But the real support came from us encouraging one another. Once we were given instructions on our tasks, we then got into the workflow. We reclaimed our independence. Our tasks entailed conducting service, preparing tables, taking orders and the list goes on. Some people had mobility issues, some had speech issues, some people had sight issues. But the fantastic thing about it was that we eventually all became one big family. Now they are trying to roll out a similar restaurant that’s available for a few weeks every year throughout the U.K. Hopefully, the project will encourage the world to employ somebody with a disability or dementia. I think the program airs sometime in March this year. I’m not sure about the exact date yet because they are still editing. But it will be a groundbreaking program. We are hoping it shows employers that we still have so much to give as a group and individually.
Being Patient: What was it like being involved in that community? And do you feel like you were able to do what was expected of you?
Peter Berry: I was good at escorting people to their tables. Some people were really good in the kitchen. We all played to our strengths, but we all assisted each other. To be a part of a team, to be a part of something that gave all of us a sense of purpose, was a very wonderful thing. Some people had issues with their speech, but by the end of the second week, their speech had improved because they were with people that understood them. We all understood each other there and supported one another in different ways. Most of us don’t get that! Once we are diagnosed, there is only us. We can’t seem to locate people with similar situations. If we can, they’re in major towns and cities, which can be difficult to access. So, that peer support for those seven weeks was absolutely fantastic.
Being Patient: How do you think the quality of sleep you receive helps you deal with your dementia? Do you have any tips for getting a good night’s sleep if you have dementia?
Peter Berry: Sleep is something that I do reasonably well. I think it is because I do so much during the day that it makes me so tired, and all I can do at night is sleep. But I do find in the afternoon that I have to sleep. If you need to rest, rest. Sleep for 40 minutes, an hour, whatever. I think it helps so much. I know that it helps me. I get so mentally tired. To give you an example, your brain today is chugging along like a large engine. My brain is revving like mad. Trying to keep up the pace. I am getting mentally exhausted trying to do this. I actually have to go off and do another major talk in our town, so today is going to be pretty full on. But I think sleep is pretty essential. Know when to rest, but also know when to be active; those are the key things.
Being Patient: What would you like others to know about how those with dementia want to be treated?
Peter Berry: We are still us! I’m not different. I can understand people. We don’t need to be talked down to. We don’t need people to ask our partners about us when we are standing right there. Just talk to us as normally as you would with anyone else. That, for me, is really refreshing.
It’s not that people are being nasty or have harmful intentions; I strongly believe that people don’t know how to talk to us. There is a lack of awareness. That is why I say just to treat us like you normally would. It took 15 minutes to get my diagnosis. I was not different from when I walked into the doctors than when I left. I was the same person. No one else treated me differently until a year later. People changed their attitudes towards me, which they should not have done because I was that same person before I told them about my diagnosis. So really, treat us as you would do anybody else.
Being Patient: Can you tell us more about the support you get from your wife?
Peter Berry: A diagnosis is for the whole family. It is not just for the individual. People ask, “Do you suffer from dementia?” I say, “I don’t suffer. The people around me suffer. My wife suffers.” I think that all the partners and caregivers are the ones who suffer. My wife is the one who wrote instructions for me to start the process of cooking a meal when she comes home from work. She is the one who sets up all the reminders on the electronic devices that we have in our house because I forget to drink, I forget to eat, to do all of these things. So, she has to be my external memory. She has to be the one who organizes every normal thing from driving to appointments to scheduling things to eat. I can help her prepare food, but I have to do it all under instructions. Without her support, I would not be here. The shirt I am wearing today, there was a note in my bedroom saying “Put these jeans on, put this shirt on.”
Being Patient: What does your Facebook page mean to you? How do you use this as your panel?
Peter Berry: Technology has been a great thing for me. It has become a great support network for me and many others. I had never dreamed that my message would go global. I started making my videos to help others, but that turned the other way around. What people really don’t understand is how their responses help me, too. Watching the videos I make is now helping me. It is giving me the encouragement to carry on doing things.
Being Patient: What is the name of your Facebook page?
Peter Berry: My Facebook page is called Peter Berry Living with Alzheimer’s. Everybody lives with little bits of dementia in their lives, but so many don’t really realize it. Dementia is such a complicated condition, but it is surrounded by many solutions. And a little tip for today is don’t delve into the nasty messy stuff of trying to work out the mechanics of dementia or Alzheimer’s, because you never will. Look at the simplicity around it. Look at the simple solutions. Once you deal with the simple stuff, it makes the complicated part of dementia a lot less complicated.