Keywords

The question of what dementia looks like cannot be answered in a single sentence. The word itself is an umbrella term for several different ‘neuroprogressive conditions’ with more details on the different types of dementia in Chap. 3.

People always say, ‘Well, you don’t look like you’ve got dementia’, or ‘You function really well, we wouldn’t know’. I then have to say, ‘you don’t spend a long time with me for one, and you don’t know how much effort goes into me going to a meeting or being on a zoom call’. I think that’s where lived experience comes in, in the way you explain things. Somebody once said to me, ‘it’s like you have a glitch on your computer, and it’s not running smoothly, at full speed’. That’s a bit like the brain of a person living with dementia. I think we get tired because it takes so much more effort for us to do things than people who don’t have dementia. I think once you start explaining these things to people, It’s like a light bulb moment. People say, ‘Oh, that makes sense now’. (Chris)

I was doubting myself at the beginning. I had the diagnosis, but I was doubting it myself. I don’t look like I have dementia. Do I really have it? Will doctors really think so? People in society don’t think that I have it. My wife thought I had it, even before I was diagnosed, but other family members didn’t believe I had it. (Martin)

It’s a bit like if you think you have cancer and you’re going along to see somebody and they say, ‘well what are you doing here?’ There’s this tinge of, ‘you’re not being quite honest, maybe you’re faking’. I suppose it is also partly that my symptoms are atypical, I don’t have the memory problems that everyone focuses on. I went to the extent of getting copies of my MRI scan on disc so that if the worst comes to worst, I can show people and they can see for themselves. (Willy)

When people are told that they ‘don’t look like they have dementia’, it undermines their experiences and can lead to symptoms being trivialised as ‘normal silly things’ impacting the person and their wellbeing.

I felt so let down by my family when they kept saying that ‘you don’t look like you have dementia’. I would say some of the things that I was finding difficult, and they would reply with examples such as ‘Well I go upstairs and forget what I’m going up for!’ I felt like I was going mad, and in some ways the diagnosis or explanation of symptoms was a relief. I still had to fight constantly to show I had dementia. I’ve said, well what does somebody with dementia look like?! I’ve had to fight, but how long do I have to keep on fighting for? (Chris)

I was attending a dementia café a couple of weeks ago, and suddenly one of the carers of somebody I know says to me, ‘Why are you here Fred? Do you live with dementia?’ I said, ‘Yeah, I do. I was diagnosed with Alzheimer’s disease three years ago.’ They said, ‘Well you look as if you are actually one of the organisers’. If somebody just met me then they might say well actually you don’t look like somebody with dementia, but they need to spend time talking to me. (Fred)

It isn’t just that you don’t look like you’ve got dementia. I’ve had comments like, you don’t dress like you’ve got dementia. So, I don’t know what we are supposed to look like or supposed to dress like. (MAQ)

We have found that people hold a very narrow view of what dementia looks like, and because of this, people who do not align with this view are challenged and undermined.

My son-in-law who lives ~200 yards away took a good couple of years after my diagnosis to accept I had dementia. He goes offshore three weeks at a time, so he didn’t see me all the time, and when people come around you put a face on. My wife said, ‘stop doing that, be yourself. If you’re tired, go and lay down.’ I think after that, once they realised how much I was having to leave them to lie down or leave the conversation, they had to realise it was real. However, when most people meet me, their first impression is that they don’t think I have it to be honest. (Martin)

It can also mean that people who may fit more with the stereotypical image, such as being withdrawn or less able to communicate, may be further excluded if the assumption is that there’s ‘no point’. The experiences that people have had exemplify just how damaging being challenged or questioned about a diagnosis can be. Particularly, as it is very normal for people living with dementia [1] and carers [2] to be in denial about such a diagnosis or not trust the results of the test.

My dad was slightly more compliant with the diagnosis of dementia, but it truly bothered my mum, and she insisted on being retested. She scored better the second time, which led to a real distrust of the system. It also does not help that when she shows certain symptoms, such as struggling to find the bathroom, carers will ask why she is behaving that way. Therefore, we are constantly having to validate her experiences because they do not know what to expect. (Alyson)

There is a psychiatrist on social media who has challenged a few individuals living with dementia for being able to present and speak well. In some cases, it has led to them thinking, ‘Well maybe I don’t have dementia, after all this person is a trained medical professional who works in this field’. As a result, they sought out a second diagnosis, only to receive the diagnosis again. (Chris)

I disputed my diagnosis at first, knowing only one thing about dementia, memory loss. I didn’t have memory problems so it’s not dementia, you know? Prior to the diagnosis, I was treated for anxiety and depression. I was afraid they had misdiagnosed me. So, all these factors were taken into consideration. I just didn’t know what to do. After a couple of years, I asked for a second opinion. It took approximately four years for them to actually do the scan again. It is also not just the public that holds an incorrect image of dementia. It can also be professionals. I feel that they don’t truly talk to you, they hear you, but they don’t listen to you, and I think that’s a big problem. Memory can be an issue, but it is not the only issue. There’s a perception that people living with dementia cannot truly communicate and don’t express their feelings. They forget that yes, there are times where it is harder to express them, but we do experience them. Everyone only knows the worst-case scenario. (MAQ)

I think looking for a second diagnosis is not purely a dementia problem. It is human nature to look for a ‘problem fixer’. Any serious health problem has most people looking for a cure, a way out of this mess they are in, dementia is no different. The ‘perhaps?’ questions creep in before final acceptance. For example, perhaps ‘they’ (meaning the professionals) got it wrong. ‘Let’s consult someone else’ applies just as much to any life-changing diagnosis as it does to dementia. I know that when one of my daughters was diagnosed with a terminal brain tumour, I spent hours researching all the latest research about her condition. If someone had said there was a cure, I would have given everything I had to get it. The point I am trying to make is looking for a second diagnosis is no different for people diagnosed with dementia, as it is for other life-changing illnesses. In that respect, ‘we are awe Jock Tamson’s bairns’ as the saying goes. (Winnie)

Diagnosing dementia is not perfect, and there will be times where people are diagnosed with dementia and that diagnosis is overturned (known as false-positive) or are told they do not have dementia when in fact they do (known as false-negative). Such circumstances are very difficult for the person who received the diagnosis as well as the clinician [3]. Therefore, such a scenario should not be trivialised or assumed to be a common occurrence. There is also an increased range in diagnostic measures, including testing for biomarkers, brain imaging, and neuropsychological assessments. Misdiagnosis is rare [4]. Therefore, it is more important to recognise that if someone does ‘not look like they have dementia’ is more likely to be due to an incorrect image of what dementia looks like than due to misdiagnosis.

What Does Dementia at the Different Stages Look Like?

As a group, we reflected on what we thought people expected to see when they met someone living with dementia. In doing so, we consider stigma about dementia from the perspective of those with lived experience [5].

Stigma can be thought of in terms of public- and self-stigma and forms the umbrella for stereotypes, prejudice, and discrimination [6]. Social psychology suggests that stereotypes are a way for the brain to process information [7]. However, this results in oversimplification and overgeneralisation. For example, assume that all footballers are male. Prejudice is a result of treating these stereotypes as fact, for example, believing that females cannot be footballers. Discrimination is where you act on this prejudice, for example, not allowing females to play football. Research has identified that stigma can have damaging effects on people affected by dementia, including making it harder to seek help [8], lowering self-esteem, and increasing social isolation [9]. Our co-authors share some of the stereotypes people have about the stages of dementia.

My wife and I both thought dementia was all end-stage until my diagnosis to be honest. I had worked with middle- to end-stages previously. I think seeing that has made it easier. For two reasons: I can relate to the staff, and I know you have both good and bad stuff; and I know that in the latter stages my body will be there, but I always say I’m not gonna suffer. It’s tougher for the carer because they would see their loved one’s declining and not being themselves. (Martin)

There is so much ignorance and lack of understanding around dementia and that’s why it’s good that we’re doing things like this to raise awareness. I think people automatically go to the ‘end stage’, and they don’t think that there’s a beginning and middle. It wasn’t long ago that people would be put into mental asylums. People thought they were ‘crazy’. I can remember how my grandmother used to say, ‘Mrs So & So up the road, she’s gone doolalley’. But clearly now when you think about it, it was dementia. We are where we were with cancer many years ago; it’s all about raising awareness and explaining to people. (Chris)

Even the word itself matters, as people expect someone to act ‘demented*’ (*Cambridge Dictionary: unable to think or act clearly because you are extremely worried, angry, or excited by something). You expect to see someone acting aggressively. I think people are frightened that this ‘aggressive part’ will come out. People also expect to see someone sat in a corner, not communicating and dribbling. (Chris and Winnie)

I think people expect to see a person who is very forgetful, confused, and doesn’t know who they are or what situation they are in. It’s a very stereotypical picture. When I was first told I have Alzheimer’s disease, I think I found it very hard to believe because it did not fit with my own stereotype of the illness. Nobody actually took the time to explain to me that it might not be as you expected. (Willy)

If someone does not fit that image, they are assumed to not have dementia.

Wullie would tell people he had dementia; he wasn’t ashamed of it and did not think it should be hidden away. But people would still say to me ‘he doesn’t look like he has dementia’. Our neighbour whispered to me ‘well I don’t think so, I was talking to him over the wall there and he’s as sharp as a tack’. (Winnie)

We know that dementia does not look like one thing, and everyone living with dementia may present differently. There is also a question about the visibility of the symptoms and how people manage them.

I lived with my wife for many, many years, she had dementia, and I didn’t know. So how would I know what you are supposed to look like if you have dementia? There’s just no way. There are so many different types of dementia and so many different symptoms that it’s impossible to ask that sort of question. I don’t think there are any signs apart from the ones that eventually come out after many years. (David)

I would say that people diagnosed in the later stages present with more complex issues and changes in appearance due to dementia. The people who come forward for research involvement are likely to be more able-bodied and more able to raise awareness of dementia. We often do not say enough about the trajectory of the condition and what people face as the condition progresses. When people say ‘you don’t look like you have dementia’ they really seem to be saying ‘you don’t look like you have advanced dementia’ as that’s the only image people picture. (Myra)

As a group, we have spoken about how knowledge of dementia (or lack of knowledge) is not just about public understanding but also what people close to you and what medical professionals know about the different types and presentation. Additionally, having lived experience of dementia does not take away from the fact that you are still a member of the public and you will be shaped by what information is out there.

Eileen’s got Alzheimer’s disease and it’s been gradual over ten years. I’ve been with her the whole time. Most people don’t know what’s wrong with her at any stage. But I’m the public as well, I’d be the same, I wouldn’t know what to look for. We’ve been to coffee mornings and things, but Eileen’s in a wheelchair now, she can’t speak, and there’s nobody like Eileen or people like me who are in the same boat. (Stuart)

It is important that as we write this and share our experiences, we stay mindful of the fact that there will be people living with dementia who are unable to participate in some activities, whether it be book writing, coffee mornings, etc. We wish to raise awareness of the different signs and symptoms of dementia, while advocating for more work on ways to engage others meaningfully.

My experience with my wife was that she so quickly succumbed to this horrible illness, where she now sits in the chair, can’t walk, talk, do anything. So, if you walk into the care home, you can see that she has dementia. But there are other people around who have had dementia for 10 years, and they look okay. We did not recognise the early signs, and within two years, she had succumbed to this terrible situation. My wife never admitted she had dementia, she denied it, and to her it did not exist. So how do you describe that when it’s so varied? (David)

Fighting for Financial Aid

One of the challenges our co-authors have faced due to others not recognising dementia or believing diagnoses is that it can interfere with the types of support people have access to. Lack of access to financial services can particularly impact people with young-onset dementia who’ve had to end work because of their dementia diagnosis [10, 11]. At a time of distress, adjusting to a very loaded diagnosis, Chris, MAQ, and Martin (among others) have had to deal with the added stress of fighting for their condition to be recognised as life limiting and progressive.

When I lost my job and tried claiming benefits, I was refused. Employment Support Allowance (ESA) said you must score fifteen points on the interview to be eligible, and even with the dementia diagnosis I scored zero points. This was very upsetting, and I had to go to a tribunal before a judge and a doctor. I went from scoring zero points to scoring thirty points, which meant I was entitled to the benefits. But how many people living with dementia can go through that process? I feel strongly that when you get a dementia diagnosis you should automatically get the benefits you are entitled to. I know of people who do not get any benefits and cannot even live. Sadly, there are a number of people not getting any benefits following diagnosis who have then committed suicide. Those things are not mentioned. They’re not spoken about. You are meant to carry on as normal, but if you lose your job as well, you feel you have lost everything. We do not talk about it enough. It also doesn’t help that dementia is an invisible disability a lot of the time, whereas if you broke a leg, for example, people know you have got an injury. (Chris)

I wasn’t fully diagnosed until 2019. Due to my previous history of being a fraud officer, I was really quite paranoid at times, and it was difficult not having the label for my type of dementia. I knew what they were capable of if you like. My assessment for benefits was terrible. Within five minutes, I was out of it, and my wife was answering the questions. I do not blame the woman doing the assessment because the rules state that you must ask all the questions. But it was obvious within five minutes that I was going to get the full ranking. I was literally on the sofa for two weeks afterwards and not able to do much. I am now in framing the Scottish Adult Disability Payment. (Martin)

They took my driving licence away after my diagnosis and that sort of brought it home to me that I must have a problem, otherwise they would not have done that, although I challenged it and they gave me the licence back. The Department for Work and Pensions (DWP) then came into the equation. I fought and fought and fought, and I still think they owe me. I’m still not on the right benefit and I was diagnosed in 2010. I went on Employment Support Allowance, and they wanted me to do this training somewhere, and of course, being a worker, I wanted a job. So, I did this course and on the second day, the lecturer says ‘you know more about this than I do, you do not need this’. So, they then said, ‘Okay we will pay you this benefit’, but it was peanuts. Two years later, I was contacted by DEEP and their local advocates for people with dementia. I went to see them and found out about the Disability Living Allowance (now Personal Independence Payment). I applied and I was refused, but I appealed and went to the tribunal and won. So, I got the full rate for a few years, but then my father-in-law passed away. I told DWP that I would be going abroad to be with my wife and they said I needed to return within eight weeks to continue my benefits. So, I planned to stay for eight weeks to support my wife and balance the cost of going, but while there my wife needed surgery. It had a three-month recovery time. She then needed another surgery. I couldn’t leave. When I came back, the DWP said that I had been out of the UK too long, and now had to stay for 104 consecutive weeks before I could reapply for benefits. I couldn’t go and see my wife for two years, and she couldn’t visit me because of the income threshold for a visa. After 104 weeks, I reapplied, and I got refused again. The appeal was due when COVID-19 hit, and everything came to a halt with courts and tribunals. I waited for two years without any income. I was up to my eyeballs in debt. They finally phoned me up almost a year after reapplying and said they were prepared to pay the basic but not advanced rate, with no mobility payment. I felt like I had to accept this, even though things were much harder now than when I first qualified for the advanced rates for both daily living and mobility. I just reached a point where I couldn’t take the stress of fighting it. If I didn’t have dementia, I don’t think I could have lasted with all that stress. (MAQ)

If you would like to know more about your financial rights as someone living with or support someone with dementia, Dementia UK [12] and the Alzheimer’s Society [13] host a range of information.

Raising Awareness Through a ‘dementia card’

We are unable to simply look at someone and know whether they are living with dementia. It can be both a visible and invisible disability, depending on anything from time of day to individual capacity to compensate. Although of note, dementia has not always been viewed as a disability. It is only in more recent years that researchers have looked at how dementia and disability align [14], which further adds to the struggle people have had in accessing financial aid for disability support.

People living with dementia may find themselves in situations where symptoms of the condition make it harder to carry out an activity and additional patience and understanding are needed. In an ideal world, we hope that individual support needs will be considered as needed. However, we know that this is not always the case, and as a result, there are different ways people have tried to communicate that they have dementia.

I have often thought it would be nice to have an Alzheimer’s badge to show people there are some things wrong with Eileen. When you speak to people, they’re always quite glad to know what it is. It would also increase the visibility of dementia within the community, as people often assume she would be in a care home. (Stuart)

I also thought a badge would be a good idea, although I did not want to label my husband. I would say he has a condition called dementia, he needs slightly more time and patience. For example, at airport security, he was asked to remove his belt and shoes, he wasn’t understanding the instruction or able to understand why he had to remove items of clothing at an airport. Alzheimer Scotland developed a little card [available here], and it was discreet. I kept in my wallet after that airport incident. Everywhere we went and before any words were spoken, I put the card in front of the person we were communicating with. It was quite incredible how much I used that card. I didn’t want my husband to constantly hear me state, ‘He has dementia’. What I liked about the card was no one knew which of us had dementia as I was the person using it. It was so helpful for everyone concerned. (Myra)

I’ve used the card when I was in the bank and there was a big, long queue of people behind me and I did not want to say out loud, ‘I’ve got dementia’, you know? So, I just showed the card and straight away they took me off to a separate office which was beneficial because you don’t want to have to keep saying, ‘Excuse me, I’ve got dementia’. I’ve also used the ‘hidden disabilities’ sunflower lanyard which I use when I am travelling. (Chris)

I have a colleague who has found that the card is very supportive. He would show it to people, and he found it very helpful. Of course, it is not always helpful, in the same way that having a pull alarm in a sheltered accommodation setting is only useful if you know to pull it when you are in need. (Sue)

The ability to disclose a diagnosis discreetly in different contexts can be beneficial. It does not mean that people want to use the card all the time, or even that they particularly like the card, but that it provides the option for disclosure and potentially access to support.

I will only use the sunflower lanyard [available here] when I am travelling on a bus or a train, specifically so that staff know to help a bit. Then, it comes straight off as it marks you out as different. I can see how the card could be useful, but I’m loud and proud about my dementia. Using the term dementia, cards, lanyards, etc., are a gateway for doors to be opened. (Martin)

I think some of these cards and lanyards have lost their potency as there as so many different signs and symbols being used, whether it’s a wristband for cancer, a sunflower lanyard, a butterfly sticker, etc. It is important that we have choice and that there are options, but it can be very difficult for a card or a lanyard to help people recognise your needs. It is helpful if people are keeping an eye out for reasons someone may need additional support, whatever the cause may be. (Agnes)

Does It Help if People Know?

The ‘dementia card’ and the ‘sunflower lanyard’ work on the principle that by disclosing a dementia diagnosis, people may be better equipped to offer support. However, we also know that this relies on people having accurate knowledge about dementia. It is perhaps unsurprising to know that this is not always the case, despite various efforts to raise awareness of dementia (including Share the Orange campaign [15], Prime Ministers Challenge [16], and Understand Together [17]).

The public fears dementia. Some people have been very surprised when they find out my diagnosis and say they didn’t expect ‘somebody like me’ to have dementia. I think there’s a worry that if you get too close to someone with dementia you might catch it. I feel like I have to get my ‘script’ ready—‘you know I’ve got this, but it isn’t quite what you think it might be’. (Willy)

A lot of people think that when they see me at my worst, I’m drunk. I’ve lost a whole load of friends. Although the positive side is that I have also made a lot of new friends. (Martin)

My brother and sister know my diagnosis, but they refused to talk about it and were not willing to change their behaviour to support me, even with things such as talking slower on the telephone. They suggested I move away to where my partner was living. I felt very shocked and let down. I’ve lost friends too, but I’m still me. Sometimes I want to stand up on the rooftops and say, ‘I’m still me, I’m the same person today as I was the day before my diagnosis’. (Chris)

A shift in how people treat you can also happen in contexts such as doctors’ visits, where you would hope people would be the most informed and therefore least stigmatising.

I find that if I go to a hospital appointment or something and I’m with my partner or somebody else, they automatically talk to them and don’t talk to me. I have to say to them, ‘Excuse me, you’re talking about me, so please talk to me’. See the person and not the dementia. (Chris)

Our co-authors regularly shared how much they value peer support and how writing this book has created its own form of peer-to-peer support. It is worth remembering that when friends living with dementia are treated badly in appointments, visits, etc., their experience will be shared and may prevent others from seeking help or sharing their diagnosis in the same context.

My friend who is living with dementia needed surgery on her arm, and the surgeon initially said that they wouldn’t do the surgery because she had dementia and did not need the use of her arm. She did eventually have the surgery, but that is how even professionals see us. It’s frightening. As dementia develops, it can increase the risk of falls and injuries. But some of my friends with dementia won’t go to A&E for fear they will suddenly be made an inpatient. (Chris)

It is worth reiterating that this is not to say that people only have negative experiences with healthcare professionals. There are excellent examples of people being treated with compassion, dignity, and respect. In sharing the experiences where this has not been the case, we hope that we can see more positive experiences in the future.

When I went back to the GP and told them I had posterior cortical atrophy (PCA) she said ‘Oh, I have never heard of it’. I thought it was brave of her to say that. The next time I went back, she said, ‘Oh I have looked it up!’ and they had a staff meeting to discuss PCA and what I need to make my visits easier, for example, I don’t like bright lights, so they make sure the lights are dimmer when I go in. It’s good and I’m quite surprised. (Martin)

Educating People About Dementia

The previous section questions how helpful it is to know a person has dementia. We note that this is often dependent on the accuracy of their dementia knowledge. Dementia strategies regularly refer to the need to raise awareness about the condition on the premise that awareness will lead to understanding, which in turn will reduce stigma.

The co-authors of this book are passionate about improving people’s understanding of the condition, with a lot of dementia activism on their part stemming from a desire to change people’s understandings of dementia.

There is fear about dementia through a lack of understanding and stigma associated with the illness, possibly due to how people were treated in the past and so often the stigma is associated with mental health services, where dementia predominantly sits. (Myra)

My favourite TV detective is Colombo. He always says, ‘All I do is look and listen, listen and look’. I think that if this was practiced by the professionals, they would see the uniqueness of people living with dementia. As we are all unique, we need to be treated differently, not the same test for everybody. (MAQ)

The uniqueness of experiences is linked to the distinction between equity and equality. The approach aims for overall equality between people with different types of dementia, but to achieve this, different resources and support may be needed.

It is all a matter of how you educate people. We always think about memory, but how do we get people to see it is so much more than memory? (Winnie)

It is important to observe people and notice. If you don’t know what you’re looking for then you’re going to miss a lot of signs and symptoms. I see dementia as a cocktail shaker of factors that build up into more complex or mixed dementia. (David)

As a group, we have also reflected on how education and support for people living with dementia can be different from other disease areas.

As a nurse, it didn’t matter what department you’d be in, you know that everybody has different challenges. Everybody can have the same problem on paper, but it’s challenging them in different ways because of comorbidities. As a nurse, you see the whole person and how they are being affected. Why is it so different for dementia? When a nurse looks at cancer and all its variants and challenges, they can deal with it. Why is dementia so unusual or so spectacular? I’ve stopped expecting a good experience. I just go with the flow now. (Agnes)

When you walk into a GP surgery, a hospital, or a library, there is nothing about dementia. There are 101 things about lung cancer, heart and lung diseases, sex education, and so on. There should be space for people to learn about dementia. You know? Even just a poster, like an umbrella with the major types underneath it. Dementia can happen to anyone, and the public needs to be made aware of how it is something that they should know and learn about. (Fred)

There is some recognition and education regarding dementia care and support through the work of dementia-friendly communities and other voluntary sector organisations. In addition, dementia care has been a priority for the Scottish government since the first dementia strategy of 2010 until 2020, and continues to be included as part of the 2021/2022. Moving on to a dementia COVID-19 recovery plan. There are education programmes through the NES and SSC Dementia Champions programme and university dementia courses that involve people with dementia participating in courses, but is it enough? Is it far reaching? Is it the right content? The more people with dementia and unpaid carers become involved in education, the better the programmes will be and the better the experience will be for students. Instead of programmes talking about behaviour, the focus should be on communication, health and well-being, diet, exercise and observations. (Myra)

We recognise that dementia awareness is very important, and, ideally, integrating things such as dementia into school’s curriculum would hopefully result in reduced stigma and fear surrounding the condition. As a former teacher, Fred is passionate about integrating dementia awareness in schools:

Young people will encounter someone with dementia, either through family, friends, neighbours, people in their community, or through the media. Teaching young people about dementia will hopefully remove any fear of the illness or stigma in relation to a person who has dementia. Learning about dementia provides an opportunity to explore intergenerational relationships, build respect and equality for older adults, and help children explore their capacity for compassion and resilience. (Mike)

Research has highlighted the need to provide credible and relatable images of dementia to the public [18], which would hopefully reduce the number of times people experience being told that they ‘don’t look like they have dementia’. Recent research supports the discussion of our co-authors, drawing attention to the issue of stigma [19] and demonstrating that improving education, as well as contact with people living with dementia, could have a positive effect on stigma reduction [20, 21].

MAQ’s Story

I have got three children who live with me. My daughter lives with me and my two other boys, and the other two are married and have a place of their own. When I had my heart surgery, my mum was alive as well, and she also lived with us. She was very active. She looked after me more than I looked after her. It is the motherly thing and that is what they do. What really hammered me was the fact that I was recovering from the surgery I had in 2009, and in 2010, I was diagnosed with frontotemporal dementia based on a post-surgical brain scan. It took me over 12 months to tell the family about the second diagnosis, simply because they were already looking after me. I was recovering from my heart condition, and I did not want to put this on them as well because they have got their own lives, they’ve got work, etc.

So, sharing the diagnosis took quite some time, and it was stressful. I did not tell anybody. I stayed away from my friends, and they automatically assumed that it was because of my surgery. I do not drive, and I do not go anywhere, but I used to talk to people on the phone. There were some people who visited me. I did not stop that, but I did not go out. The thing is that when I was told that I had a heart condition and they were going to operate, I was not scared. You can see people who have had similar surgery and they’re living a good life; you know that there is something that they can do about it.

When I was told about dementia. I had limited knowledge. I did know that is it not curable and that there is only one end. I was petrified. That was one of the reasons why I did not tell my family. I thought that if they knew as much as I did, it would hit hard. They only had me, they had already lost their mother, so there was only me looking after them.

I speak and write in 14 different languages and dialects, but there is not always a word for dementia. It’s confused with mental health, and in some cultures, even associated with possession by an evil spirit or punishment for bad deeds. So that is one reason some people may not be able to relate to this illness. You’ve got culture, customs, faith, all these things that make it difficult. I’m struggling trying to get that across to my community. There is also not enough training on the emotional side of dementia and how to express everything you are trying to hold in to stop others from suffering. I cannot stress the details of dementia too much because I do not want to say that it is an incurable condition. We do not want anyone to suffer.

I truly suffered from dementia. I suffered squared because I thought I could not tell anybody about it because it was embarrassing to talk about it. From the experiences that I have had talking to people about dementia, I think there is also a family stigma. The children and their families and their sisters, etc., they are all around and they keep saying ‘do not forget us in your will’ and ‘do this’ and ‘leave this and that to me’ etc., and then I do not see them for months and months. That is another added stress.

By the time I told my family about my dementia, I knew quite a bit about it. Therefore, when I did tell them, I ‘cushioned the blow’ as it were. I did it in a manner that they could understand, and I also told them not to think it means that there is no life. I said that I’m not going to be a burden on you, and I do not expect you to be around me all the time. That time might come, but it is going to be a long, long time. Deep down inside of me, I was thinking I hope I do not see that.

DEEP were the backbone to my recovery. I was deeply down, and DEEP pulled me up with such a high level of support from people also living with the condition. I often think that the first person you are referred to should be a psychologist. I know psychiatrists are also medically trained, but we need verbal support; a safe space to share. When you hear psychiatrist, you automatically think you’re seen as ‘loopy’,

Family look after you, they will feed you, they will wash and iron your clothes, they will do loads of things for you, but that is very different to doing activities with you. The DEEP community enabled me to travel. I went to different universities and made speeches here, there, and everywhere. It got me out because there was somebody holding my hand. I had any physical support that I needed, and there were people around me who were living with the condition, so we could connect better. I have always said that people with dementia connect better with people with dementia, more so than even the professionals because there is a trust factor. We do not trust a lot of professionals because they have let us down.

I think if I had not been diagnosed when I was, through the routine scan as opposed to from having symptoms, I do not think I would have asked for help. Knowing what I know about dementia and knowing how I behaved for the last 10 years, I don’t think it would ever come to a point where I would have recognised a problem. The biggest damage that’s happened to me is the thought of having this condition, not the condition itself. It is the psychological and emotional side that’s been tarnished, things like my concentration and confidence. My senses have magnified. I listen more, I hear more, I see more. I try harder to concentrate because I know the condition is making that harder.

I have got this thing in my mind that is a progressive condition. It can only get worse. It doesn’t get better, and I don’t know when it’s going to get worse. I don’t know how much time I have to be able to do what I’m doing now. Therefore, I want to do things yesterday.

I think it is a journey that, in my case, I think is unique. Obviously, we’re all individuals, but I have got sort of added struggle coming from my ethnic background as well. I was not able to speak the language when I came to this country, and when I came here, racism was at its peak. I went through all that. I think things will get keep getting better, school kids now don’t see colour, whereas when I was at school they did. I educated myself here and ended up a professional in the community, in good standing, both in the Asian community and wider community. It has been difficult, but fruitful, and enjoyable.

I would like to be the change I want to see in the world.

MAQ

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Winnie and Wullie’s Story

My name is Winnie. I have a BA in Psychology and Philosophy. I had many roles throughout my working life, but perhaps my most satisfying one was working in the field of addiction. My career was cut short in my early 50s by a life-changing Illness, and although I did some part-time voluntary counselling for various organisations, I still managed to fit in a great deal of travel with my husband Wullie, who, by this time, had retired from the Fire Service. We had a marvellous life and enjoyed each other’s company, as well as the company of our family (Fig. 2.1).

Fig. 2.1
A photograph of Winnie and Wullie standing close to each other, with Wullie leaning her head on Winnie's shoulder.

Winnie and Wullie

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The story of Wullie’s dementia journey starts here.

On 10th September 2012, when Wullie was 72 years old, we flew to the beautiful island of Malta. On that day, a thief robbed us both, robbed us of the future we had planned for ourselves. That thief’s name was Dementia.

What happened was as follows: my husband suddenly lost his memory. The next 24 hours were a complete nightmare. I suddenly was faced with this man child, who looked like Wullie, responded to questions asked of him just as Wullie would, but as I later put it, the lights were on but nobody was in. His actions were bizarre. For instance, he went for a shower and could not remember how to turn it off, so it flooded the whole room. We were in a hotel we had stayed in several times, and the staff had even allocated us our favourite room, so he was not unfamiliar with the working of said shower. He looked and acted strange, and although his memory returned 24 hours later, he was still quite confused. This was diagnosed as ‘transient global amnesia’. A rare form of memory loss. Further investigation found seven dead spots on his brain. From then on, Wullie would tell you that he felt as though he had a fog in his brain. But he was still very savvy and would explain, in detail, what dementia was to anyone who asked about it. His words were, ‘This condition should not be hidden. If I had a broken leg, people would see and sympathise. In my case, I have a broken brain. Let’s do as much as we can to make people understand that I, and others like me, are not stupid.’

On thinking back, I now realise that some of the signs of his illness were present at least 10 years before he was actually diagnosed. One of those signs was as follows: Wullie was always a great raconteur. He kept our family, as well as all the nephews and nieces, enraptured for hours with his stories, and like all great storytellers, truth and fiction were sometimes interchangeable. Now, approximately 10 years before he was officially diagnosed with mild vascular dementia, I started to notice a subtle change in the content of his stories. He became the hero. He twisted the stories slightly, so he was almost like ‘the caped crusader’. By the time he was diagnosed, this phenomenon had a name. This is called confabulation. Honest lying, it is sometimes called. He truly could not tell truth from fiction and whatever story; even from a daily newspaper he was recounting, he was part of the story, at least in his mind. On reflection, there were other signs, but I put them down to advancing age. One of these signs was that he incessantly watched the same TV programmes but did not remember that he had watched the same content very recently.

All that changed in November 2019, when Wullie took a stem cell stroke. This is a type of stroke involving the stem cell area of the brain. Overnight, his cognitive ability was halved. Even then, he still knew and spoke to all his visitors, but physically he needed 24-hour nursing, so, very reluctantly, it was decided that a nursing home was where he could be best looked after once the rehabilitation from his stroke was complete.

He still retained the larger-than-life character he always had. The strength of his character was such that in the rehabilitation unit of our local hospital, not only did he get back on his feet and walk but he made what the nursing staff later named ‘The Great Escape’. He was in a locked ward and had poor balance, but twice he managed to get out. The first time he only went a few yards then fell over. However, Wullie had tasted freedom and that only made him more determined. He secreted away a dinner knife and used it to remove the screws from his window. Luckily, the staff spotted the damaged window before he could make his escape. Another time, I came into his room to find a pillow laid across the windowsill and the bold boy trying to slide out of the space between the open window and the sill. The worst time and a great source of worry to us all saw him walk out of an emergency exit from the ward and into adjacent woods. As you can imagine, there was a great hue and cry. The police, local people, family, and even off-duty staff joined in the search. He was eventually found after he tripped and fell into a small gully. Luckily, he suffered no real damage from his escapade.

Wullie suffered badly from ‘Sundowning Syndrome’, and this worsened to the extent that he had to be confined in a locked ward for his own safety. ‘Sundowning Syndrome’ causes the person with it to become agitated and disoriented as the day progresses. By this time, the world was in lockdown because of COVID-19. Wullie could not understand why he had no visitors and could not even get out into the garden of the nursing home. I tried facetiming [video calling] him, but he could not understand the technology. I phoned the nursing home every day and spoke to him. He would ask me to come and see him and tell me it was like being in prison. I would have a wry smile at that, ‘some prison at nearly one thousand pounds a week’, I would think to myself. He was safe and looked after, and that was the most important thing to me, although I missed him terribly.

Wullie suffered another cerebral incident in December 2020 and passed away with the family at his side. He knew all his family until his death, and he never lost his cheeky chappie attitude to life. The staff in his nursing home adored him and said they would never forget him.

Winnie

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Willy’s Story

I was admitted to a psychiatric hospital in England with depression following an incident in my personal life that had left me profoundly low and suicidal. The consultant psychiatrist decided, for reasons that still baffle me, that I had a personality disorder.

I went through every known anti-depressant, but even when I knew the depression itself had lifted, I was switched off and apathetic—and one day realised that my empathy towards family members seemed to have left me. I began to be convinced that something else was going on—that some kind of organic change was happening. I put this to the psychiatrists, who commissioned psychological tests: I scored 97 out of 100. The consultant told me that this ruled out any possible dementia. I was unconvinced.

After discharge I moved to Scotland, but with no explanation for my apathy that made sense to me—but when I came to the attention of a new old-age psychiatrist his reaction was ‘Your symptoms are interesting, we could at least run some tests’. Therefore, a series of brain scans began.

A CT scan showed a degree of atrophy (cell loss). This was followed by a SPECT scan that showed blue blobs where there should have been yellow, suggesting that there were issues with imperfect blood flow within my brain. Finally, an MRI scan pinpointed damage to my parietal lobes, and a lumbar puncture confirmed this as being caused by Alzheimer’s disease.

However, my form of the disease is atypical in that my hippocampus remains intact: I don’t have issues with my episodic memory, that is, memory that focuses on events and experiences. Tests show that my verbal working memory is slightly compromised (I struggle with strings of letters or numbers), but my visual memory is flourishing.

The major issues I face are to do with my eyesight, in that I see things that aren’t truly there—specifically a ‘blob’ in my left field of vision, and reflective surfaces covered in hair. I also have strange issues perceiving black: such that I have struggled to use the black zip on a suitcase as it somehow vanished. Everything now has orange tags!

I note too that my once faultless navigation has gone wonky: orientating myself on a map is hard, as I don’t have a good sense of direction. The other area of difficulty is balance, which means I find riding a bicycle much harder work than it once was.

My passion in life has always been painting and drawing, but my interest in this seemed to disappear with the advent of my brain disease. It seems that the right parietal lobe plays a vital role in controlling drawing. I was aware of the therapeutic power of music, so I devised my own therapy programme: a couple of weeks of listening to The Beatles and The Stones turned up loud. Happily, this ‘rewired’ my brain enough for my drawing to return.

The other major hurdle I have faced is over driving. The DVLA took my licence away when I was diagnosed, and I appealed against this, as it seemed unfair to me that they could do this without evidence. After a legal battle lasting more than a year, I win the right to have my driving ability assessed, and I am now back on the road.

Willy

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