Dr. Jennifer Brute is a medical doctor. She was diagnosed with early onset Alzheimer’s Disease in 2009. Upon adjusting to her life with dementia, she set out to spread awareness about the illness and tackle the stigma around it. Her book “Dementia From The Inside” tells about a personal journey of a doctor venturing into the ups and downs of the dementia diagnosis, meanwhile maintaining a cheerful and hopeful look for those living with the illness, and those who join them on that journey. Jennifer now lives in a dementia village and helps fellow residents, meanwhile running her advocating work through her website “Glorious Opportunity”. 

Well yes, a new value and purpose, a new career, really. But because I have taught all my life, since I was a little girl, I thought: “Well, why not teach about dementia?” So many people have no idea that so much can be done, that it is not the end of the world. Yes, things change, and there are problems and difficulties. But my word, there is a lot of good stuff. And people who look after people with dementia can be helped and encouraged to look at it in a different way.

You know, I have learnt so much from other people. People say: “He[a relative with dementia] follows me around like a dog.” And I say, do you treat him like a dog then? They say: “What?! Of course not!” Well, then why do you say that then? [I try] to help people recognize that the words they are using to themselves are actually affecting the person [with dementia] as well.

In England we have these setups that people are meant to go into in order to experience what people with dementia feel like. That makes me very cross. They put their gloves on, they put their shoes on, and the gloves are rubber, and everything they feel is like that. Which is rubbish.

The idea is good - to help people feel what it is like. But let’s do the truth rather than what somebody thought once upon a time. So [dementia] is about being overcome with the environment and what you see. It is hearing things all the time. It is having hallucinations of animals and things and other things depending on our background. Because dementia doesn't cause hallucinations, it just releases the memories in the brain. It lets them out. [...]

Depending on your career, [the hallucinations differ]. I know people with dementia who worked in the police; soldiers. They have dreadful hallucinations as you can imagine. They are bad memories, if you like, which are kind of locked away. When you are young, you are taught: “No, you mustn't use that word, you don’t do that.” So there are certain things that are put away in a part of the brain which has a door that says “No entry” on it almost. And when you get dementia, the hinges come off [that] door. The door opens, and they ease out, which is why some people with dementia swear a lot. It is not their fault, it is just that the hinges come off the door. Where they were not allowed anymore, they are just kind of coming out, because there is nothing there to stop them. They don’t do it on purpose, it is just how it is. The same with hallucinations. It helps people to understand that. I have discovered that a lot more people with dementia have hallucinations than admit it. Because they are either frightened by it or they don't understand that they are hallucinating. 

I didn't understand that they were hallucinations until I was put on my medication. Then they disappeared for a while, for about 2 or 3 years, and I was told that was what was likely to happen. They have come back now, but not as bad as they were before. They can be quite funny. I am walking up the stairs and think someone is coming up towards me. I kind of put my arm out or my elbow out and see if they bump into it or not. And if they are real people, they say: “What did you put your arm out for?!” But if they don't and they walk through it, i think: “Ooh! What fun!” So you know, we have to laugh about it as well.

The main thing is to remember that the real person is still there and to bother to find them. That's really important. People say: “they are not there anymore”. But they are! They just need to be found. When people ask me what I want in the future, I say I want to be somewhere where someone will be willing and bothered to find me. The real person is still there.

Many people know that people who are dying (not due to dementia) have a period of lucidity, even getting suddenly better. They are able to go out and visit someone, which means they will probably die very soon. And people with dementia, just before they die, suddenly remember everything. They know who everybody is, even though they have not been recognizing them before. To me it says, it was there all the time, wasn’t it? If they remembered just before they died, well, it was hidden before that. I use the analogy of visiting someone in the house, and the front door got locked, and you can’t open it. If you visit someone who lived in the house for which the door was locked, and the key was lost, you wouldn't give up and go home. You would shout through the window, even climb through the window if necessary; or go around the back door, wouldn't you? You wouldn’t give up. But most people give up with dementia; they don’t realize that there are other ways to find the person.

The other day, this resident here [at the dementia village] always gets up, walks out all the time. She always says she needs to be doing something. It's quite easy, if you enter their reality, which is very important, and affirm them in their reality, you can often bring them back to yours. So she said, I am just going. So I would say, but where are you going? “Oh, I am going to get the horses in, because the snow isn't good for them.”
Well, the sun is shining outside. So I say: “You are right. You don't want your horses left out in the snow, certainly not. I am so glad you are so concerned about the horses. But as it happens, if you look out the window, you see the sun is shining just at the moment. Why don’t we just sit down and have a cup of tea, then you can deal with it later?” So you don’t tell them they are silly. You accept them where they are, and say: “Okay, that is how it is for you.” At the end, after the cup of tea, she has forgotten all about the horses. And she [no longer] wanted to walk off. You can't argue with them. You affirm them in their reality.
People accept that if you had a stroke, most people can get better from the stroke. In the old days they couldn't, but now they can. So why do people think if there is damage to the brain, they can’t improve as well? People are very restricted in their views about these things. They need to understand that we can improve, that we are real people.

The problem with the world is that places are not dementia friendly or dementia inclusive. I remember speaking at several conferences where they said: “We are very proud that we are dementia inclusive!” And I say: “Well, I don't think you are!” When I went to use the facilities, for example, it was a disaster. There was nothing to explain how to get the water out of a tap: how was I supposed to know which was soap and which was hand cream? I didn't know the difference[due to dementia]. And how was I to dry my hands? How does that machine work? You just need pictures [to explain the steps]. They said, well, there was a big notice explaining it all. I said, well, I couldn't read that. You need to have a simple diagram. Or just a picture to show it. Society doesn't need to educate [us] with words, they need to facilitate [us] with pictures.
In shops, sometimes it's very difficult to find your way out. How do you know where the exit is? I don't know. I can't remember. And someone says:  “Well, just over there”. That is no help to me at all. People need to understand that people with dementia need to be shown, not told.

One group I went to, I had found my cooking was just awful. It came up in the group; and one lady said, I love to make cakes, but my husband doesn't let me. He doesnt think it is safe. And I said, if he watched you, would that be alright? So I said to her husband, your wife would like to make us a cake next week, would that be possible? And he said, I suppose so. She brought a wonderful sponge cake next week and we were so grateful and she was so proud of herself. It is just lovely, isn't it, when people are enabled rather than disabled. We can often do things with help. We don't have to have everything done for us, but we often do need help.

To get in touch with Jennifer, visit her website: https://www.gloriousopportunity.org/

To learn about her book “Dementia From The Inside: A Doctor’s Personal Journey of Hope” visit this link: https://www.gloriousopportunity.org/resources.php