In our LiveTalk series, Being Patient spoke with retired physician Jennifer Bute about the early symptoms of Alzheimer’s that she began experiencing in the 2000s, the joys of living in a dementia-inclusive community, and her guidance for how to help people living with dementia feel seen, accepted and valued.
In many ways, Jennifer Bute sees her diagnosis of early-onset Alzheimer’s as an unexpected gift. After all, it has opened up opportunities for the retired physician to develop strategies to live well with the disease, approaches that can help others journey through dementia, too. Amid all the adversities that dementia brings, Bute has learned that there can be hope and moments of joy for both people living with dementia and those accompanying them.
In her book Dementia from the Inside, Bute writes about Kintsukuroi, a Japanese art of mending broken pottery with gold or silver, which in a way serves as a reminder of “how we can all pour love and care and acceptance into the lives of those around us, making them more beautiful. No matter how cracked or broken their lives, we can show they are of immense value.”
Being Patient spoke with Bute about her experience living with Alzheimer’s after being diagnosed more than a decade ago, her efforts to educate people about dementia, and what it means to enable those with dementia to live a full life.
Being Patient: Can you share with us your experience living in a dementia-inclusive retirement village?
Jennifer Bute: I’ve been living in this village for 10 years now and it’s wonderful. It’s a gated community. It has about 200 people living here. 80 are in the advanced dementia unit, 30 [are] in the nursing home and the rest are in independent living with 24-hour backup support when we need it.
For me, this is absolutely perfect, because in England, many dementia care homes and residential places take all your independence away. I believe that that disables us rather than [enables] us. I think it helps people to become more dependent and to progress more rapidly.
“Living amongst these people with dementia for
so many years — 24 hours a day, seven days a week — I find out
what works and what doesn’t work and learn from
their stories, because everyone with dementia is different.”
Here, I have my own flat with a lounge, dining room, kitchen, bedroom. We also have a restaurant together with other things and I can go to the restaurant for my meals or I can have them delivered to my flat. We have 24-hour porters, 24-hour carers. We have administrative staff … For me, it’s wonderful. We have grounds, which I don’t have to look after, and if the roof leaks, it’s not my problem.
Being Patient: How did you feel when you and your late husband moved to this retirement village?
Jennifer Bute: I thought it was too soon, but I understood that my husband loved me dearly. He couldn’t cope with a wife who once was very competent to one that was no longer competent. We had a large house and garden, which was open to everybody. We had people staying with us who needed help and care and support. We [had] always been like that in our married life. We [had] always shared what we had.
I would come home and go into the lounge and think, ‘Who are all these people in here?’ It was very embarrassing for my husband when the hostess didn’t know who her guests were or forgot to cook for them when evening came. It was a disaster, not because I didn’t care or he didn’t care, but I couldn’t remember and he wasn’t able to give me the cues and the reminders to help me.
So I didn’t want to come here, but I’m so very glad I did. He made the right decision because he died soon after we arrived and I could not have coped without him.
Being Patient: Can you tell us about the early symptoms of Alzheimer’s that you experienced beginning in the 2000s and how you felt at the time?
Jennifer Bute: I had no idea to start with that I had dementia. My father had dementia and I had patients with it. I never thought that I would get it. It started with getting lost. I still remember the time when I drove to the surgery where I’d worked for 25 years, I couldn’t find my way. I had no idea where it was. I phoned up the surgery and I said, ‘I can’t find my way,’ and they just laughed at me.
Then, when I couldn’t get home and I phoned up my husband and said, ‘Do I go left or go right?’ he told me not to be so stupid. I mean, he loved me dearly. So I thought, ‘This is just something small that’s happened to me, I’ll buy a satnav.’ So I did. Then the next thing, I was having all these olfactory hallucinations, which was a bit of a nuisance getting the drains checked and goodness knows what else. Then, [I was] not recognizing people.
Being Patient: What was the last straw that made you realize that something was really wrong?
Jennifer Bute: Because I was the senior partner, I was chairing a meeting. I didn’t know who any of [the people there] were. So I turned to the person on my left and said, ‘How lovely to see you all. Now we need to introduce each other because I don’t know who any of you are.’ The person on my left said, ‘Of course you do. We’ve known each other for 25 years. We’ve worked together.’ So I went on to the next person and said the same to them. I couldn’t make an excuse. They all knew who I was and I didn’t know who a single one [of them] was.
Being Patient: But getting a diagnosis was a long, difficult and emotional process when you were still a doctor.
Jennifer Bute: That was the problem: I was a well-known, well-respected doctor in the town where I lived. When I went to the hospital to see the neurologist with my husband, before we even sat down, the neurologist said to me, ‘I gather you’re concerned you’ve got dementia. I can tell you you haven’t.’ He didn’t do any scans or tests. Nothing. He just told me before I sat down that there was nothing the matter with me, which I felt was humiliating.
[Another doctor] persuaded me to go and see a different neurologist. So I went to a different neurologist. The neurologist did do a scan and asked questions and so on. Then he said to me, ‘Jennifer, I’m not prepared to give you a diagnosis because you’re too good a doctor for us to lose. We need people like you.’ Well that wasn’t any help either, was it? I wasn’t happy about that.
So I asked to be referred to a [neuropsychologist], who spent two days doing tests and so on and said, ‘You need to see someone who specializes in early-onset dementia.’ So I did. I went to see a third neurologist who then, of course, told me.
Being Patient: How did you feel when this neurologist diagnosed you with early-onset Alzheimer’s in 2009 when you were 63 years old?
Jennifer Bute: I was pleased that at long last someone believed me that I was having all these problems, because before that, I felt that everyone thought I was just making it up.
Being Patient: Because you were involved in medical education as a doctor, you also began writing educational leaflets about dementia. Did you feel that there was very little information for patients and their families about dementia?
Jennifer Bute: Yes. I found there was nothing, absolutely nothing out there at all. It was quite a long time [ago], which [was] why I wrote my leaflets. I became so passionate about helping other people, because so many people with dementia are just given a diagnosis and left almost to rot or to just wait. But that’s so silly, because … we can do something to slow down the progression … nobody seemed to believe it, apart from the few drugs that were around.
Want to learn more about clinical trials
for Alzheimer’s and dementia?
Check out the Lilly Trial Guide.
But there are other things we can do. That’s what I set my mind and heart to find out, which is why I have the privilege of living in this village. Living amongst these people with dementia for so many years — 24 hours a day, seven days a week — I find out what works and what doesn’t work and learn from their stories, because everyone with dementia is different.
Being Patient: Right. That’s why you talk about the importance of S.L.E.D.G.E for slowing the progression of dementia: S for social engagement, L for laughter, E for enjoyment and exercise, D for daily activities and G for cognitive stimulation. Then, there is music as well that’s important for a person’s wellbeing. Jennifer, let’s switch gears now to talk about your Christian faith. I’m wondering how your church community at the time reacted to your diagnosis?
Jennifer Bute: The vicar and his wife were brilliant. They came around to see me and my husband and were very supportive.
But one of the teams I was involved with was pastoral care. I went to one of their meetings and I heard them talking about some other people in the congregation who had dementia and I can remember two things that were said.
One was, there’s no point visiting them because they won’t remember whether you visited them or not. The other response was how disgraceful it was that so and so’s family didn’t bother to do X, Y, Z for the person, which I knew wasn’t true. But I also knew that the person with dementia had obviously forgotten. I thought, ‘Well this is just dreadful. These people are going to have that attitude if I’m going to be in this church and have dementia and progress.’
I asked the vicar in charge who had been so supportive of me if I could give a talk to the pastoral team and the church leadership, because having been involved in education and [lectures], I thought I could still do that. So I did give them a talk. It was so well-received [that] I was asked if I could give it again and [have it recorded]. That’s how my website, [Glorious Opportunity], actually started.
Being Patient: On your point about people thinking that it’s not worth visiting a person living with dementia, what do you think is a better way to approach a visit with someone who has the illness?
Jennifer Bute: Feelings remain when facts are forgotten. Even if they don’t know who the visitor was or when [the visitor] came, [the visitor] can bring joy to the person, even if the person doesn’t remember it was them (the visitor).
So of course it’s worth visiting someone with dementia, no matter how advanced their dementia is. When I hear people say, ‘It was so good. Someone saw me yesterday,’ I think, ‘Good, it’s worth it.’ They remember the feelings that you communicate.
Being Patient: It can often be difficult for people living with dementia and their families to open up to members of the church about their diagnosis. Why is that?
Jennifer Bute: I think it is because people are frightened of it. I decided the only way was to be quite open about it and to use it as an opportunity to help and educate and to lower the stigma because there was so much stigma. It’s certainly less now than it was.
“Feelings remain when
facts are forgotten.”
Somebody would just walk away if I told them. I would chase them and I’d say, ‘I’m not infectious, you know? What’s the problem? Why don’t you feel comfortable talking to me? Can I help in any way?’ Then I would give them one of my leaflets, which were very useful for educating them.
Being Patient: It’s common for people with dementia to stop going to church. Is it often a challenge for them to attend an hour-long service?
Jennifer Bute: Yes, it can be on many levels. When I moved to this village and went to a church and I couldn’t cope with something, I started to cry, which is what I do when I can’t cope because we resort to childhood patterns. That’s what I did as a child. I didn’t kick and scream and throw things and shout like some people with dementia do. I just curl up in a ball and cry, and go and hide.
I was told [by the church] that I was an embarrassment and I ought to leave. I wasn’t welcomed. I said, ‘Well, I don’t think that’s how Jesus would have responded. It’s because I have dementia. Let me give you a leaflet to explain. All it means is it’s a cry for help, and what causes these meltdowns in church for me is when something unexpected happens. If you can warn me in advance that something unexpected is going to happen, then I won’t need to perform in this embarrassing way for you.’ It’s a matter of learning and teaching the church how to cope with these people.
You go to church and they say, ‘We can’t have people with dementia because they interrupt or they get up and walk around.’ Well, does it matter? Many churches let children run around, don’t they? They don’t seem to mind. An older person with dementia gets up and walks around, then comes and sits down: Why should we mind about that? I think children get more respect and understanding than sometimes older people do.
But sometimes, churches go the other way and they become so patronizing. I remember one church I went to, they said, ‘We hear you’ve got dementia. Come and sit in the front with the children and then you can go out with the children while we have the sermon.’
I said, ‘No I’m not going to do that.’
That is appalling isn’t it? I didn’t get crossed with them, I said, ‘Let me explain what churches can do positively to make people with dementia feel welcome.’ If a church isn’t welcoming for dementia, it’s not a matter of turning them off, it’s a matter of explaining to them, giving them the strategies to cope.
Being Patient: What have you learned about dementia that you didn’t know before your diagnosis and when you were still practicing as a physician?
Jennifer Bute: A tremendous amount. I wasn’t proactive. I didn’t understand about the enabling [part of care].
[It was the same as to] when my father had dementia. I visited him often to help care for him. He wouldn’t know who I was and he would think I was my mother. Well that was fine. I could understand and cope with that. But then I would try and use logic on him.
“To keep on board, you have to enter their reality
and often they will then return to yours.
Make them feel that they are important
and valued and accepted.”
He was a very intelligent man and I tried to explain things. Well that was a complete waste of time. I was very patient. I never got cross with him, but it was completely the wrong way to deal with it. It was not purposeful. What I should have done would have been to either change the subject or divert … Instead of trying to use logic that that person couldn’t come or died or whatever, say, ‘Well, tell me about them. Tell me stories about them.’ I didn’t know that then.
Being Patient: It’s important to step into the reality of a person with dementia, isn’t it?
Jennifer Bute: I know a lot of people think if [those with dementia] are living in a different reality, it’s permanent.
People with dementia do remember some things. I was called to help with one lady who was being a bit disruptive. So I took her to the lounge and she thought I was her aunt.
I said, ‘Nice to see you again. Come along and tell me what you’ve been up to.’
She said, ‘So lovely to see you living here in New Zealand. We’re waiting for my brother to arrive, aren’t we?’
Well I knew her brother was dead. I didn’t say that. I said, ‘What do you remember best about your brother?’
I didn’t say he was coming. I don’t believe it’s right to ever tell lies. She told me stories about him. On this occasion — it was a bit of a crisis and the staff were very busy dealing with the consequences of what had happened — after about 20 minutes, she said to me, ‘My brother’s dead. isn’t he?’
I said, ‘Yes.’
She said, ‘Did you know?’
I said, ‘Yes.’
[She said], ‘Why didn’t you tell me?’
I said, ‘Because I enjoyed listening to your stories about him.’
But if I had told her then that he was dead, she would have been very cross with me, wouldn’t she? To keep on board, you have to enter their reality and often they will then return to yours. Make them feel that they are important and valued and accepted.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org