Keywords

People living with dementia do not experience their diagnosis in isolation, and there is a ripple effect on family and friends. This chapter reflects on some of the challenges that people who take on a carer role can face.

People say we suffer from dementia. I don’t think that we suffer from dementia, but I do think carers may suffer. In the latter stages, I won’t be aware of my suffering, whereas my wife will suffer in worrying about what will happen. (Martin)

When we think about care, it is not just personal care. It is vital for people to understand our psychological needs, our financial needs, our culture, and faith, and how these different aspects influence each other. (MAQ)

Collectively, the co-authors have shared their experiences of both receiving support and providing support. We want to acknowledge that the term ‘carer’ is contentious [1]. Much of the time, it is used as a door opener, similar to how dementia cards and sunflower lanyards are used when needed (as seen in Chap. 2).

The term carer is a term that some people use, but I don’t like it. You are looking after someone you love and that’s not care, that’s love. It’s a different thing. (David)

The term carer fits better with paid professionals. They are needed when someone either does not have other help or their loved ones are not trained or supported enough to meet the care needs. I see our loved ones as helpers. We work together as partners. That’s unconditional because there are other reasons for a partner to support you, not just because of the condition but because of the bond and the relationship. (MAQ)

I am resentful of the term carer because it means nothing to me. I am not a paid carer. I have a full-time job, which is more than 40 hours, sometimes 60 hours, as well as having mum and my kids. I don’t get any benefits. The term does not consider the obligation to a loved one to make sure they are okay. I know that I am a good advocate on my mum’s behalf, and when I took her in, I knew what to expect. I was most surprised by other people’s attitudes to what they think I should and shouldn’t do. I did not anticipate that my mum would be staying with us so long. COVID-19 made a huge difference. When she moved in, we didn’t know how long the lockdown would extend to. We hadn’t anticipated how difficult things were, but so much was hidden from us when my mum and dad were living in their flat. (Alyson)

I think the turning point is when you acknowledge that you are a carer. It’s very difficult to do. There are so many people who do not recognise or know when they become a carer. It is such an important realisation and allows you to open up to support options. It was important to acknowledge when we hit the crisis point. (Myra)

It’s so hard for carers to fully realise that their loved one is dying of this awful disease. It is a terminal illness and that is not acknowledged enough. It is a terrible thing to acknowledge, but it is also so important that we do. You try to go on as normal, whatever normal might be for them at that time. You are also trying to do all the jobs that would usually take multiple people to do, but you just have to get on with it. (Winnie)

Working with Paid Carers

I don’t have any experience with paid carers. There’s a massive difference for me between paid and unpaid carers. Paid care depends on who they are, what they understand about the person, and where you are based. For some, it is just a job, the caring part is very different. Unpaid carers offer unconditional support. My family, my children are all very involved with me, although I am fortunate at this time to not need much support. (Fred)

There is infighting between whose responsibility it is to provide certain types of care. Everybody in the middle is trying to say that they need help or support, but they are lost between all the political infighting. (Alyson)

In my wife’s case, she had no idea that she was ill. It was really strange, especially when we got to the stage of carers coming in to help her. Even with the best intentions, the care they could offer fell short of the mark. You could not guarantee when they would arrive or who they would be. There was so much inconsistency, and people often did not turn up. She never complained, but she got upset with strangers coming in. I think the people who try to provide the care are trying to do the best they can but are hindered by lack of resources and time. I was trying to do everything. I had to because I couldn’t keep up with the stress of coordinating outside carers. I never thought of myself as a carer; I was just looking after my wife. I continued to do it until it was absolutely impossible to do so, and then I had to put it into the hands of so-called professionals. Some are good. Some are bad. You need to get to know the individual. You cannot possibly care for a person if you don’t understand their needs. (David)

In a typical week, we were very lucky to have regular carers coming in. The teams have more or less been the same. We have managed to have good experiences with council and private care. (Stuart)

We have carers who come in four times a day, but they keep looking for validation that my mum remembers them. She doesn’t remember them; it could be four different carers in one day. They need to understand more about dementia so that they are not looking for validation. I don’t know if they have very firm beliefs about dementia. I don’t know how to change people’s perspectives. Hopefully, our shared experiences will help with this. (Alyson)

It is very clear that there are major inconsistencies in paid care. In some ways, the increased hybrid approach (in person and via online video conferencing) has highlighted the postcode lottery more than ever [2]. Instead of having solely local support, we are learning more about the different scenarios people face.

I was thinking about my mum’s experience. She had regular people come in to support her, they were very busy but there was consistency in who she saw time and time again. In my job as a social worker, there were always the pressures of who you were seeing and the many time constraints you were under. There’s nothing ideal about the situation. We need to think of ways to help people learn about each other while juggling time constraints. Sometimes the little things can make all the difference. (Sue)

There is also a challenge around how to help people learn more about dementia and the needs someone might have [3].

The carers come to the door, and they do not always have knowledge of dementia. They have to find their feet. In between seeing my wife, they are seeing half a dozen other people, all with different things wrong. It can be very hard for them; they are not paid well and they do not have consistency. (Stuart)

When a unpaid carer comes to see you, you may be the fourth or fifth person who they have seen. That person is trying to get to know people, but they may not be able to give 100% each time. We can’t get away from that. Travelling from one place to another puts strain on a person. All these things add up, and we may not know what makes a bad day for a carer coming in. (MAQ)

Our experience showed me that traditional therapeutic interventions to support living well with dementia do not work well for a person with semantic dementia. You need to do a continuous risk assessment to ensure a safe environment in the home and outside if necessary. As the disease progresses, the level of understanding diminishes, and the level of risk is much greater. The home environment must be assessed for situations such as the risks of being home alone, the risks from not recognising door callers, and especially risks in the kitchen where a bar of soap could be confused with food due to recognition and loss of conceptual knowledge. (Myra)

When people have had difficult experiences, this can put others off facing a similar situation, whether that is attending hospitals or accepting care.

It’s so important that we know who our carers are, as well as them knowing us and our needs. I spoke to a woman recently who had a replacement carer sent to her home. The organisation ignored her care package, where it was agreed that only female carers would come to offer support. When a male carer was sent, she was told after that you either see him or nobody. She would have preferred not to have a visit at all. He came in and made her a cup of tea with no milk or anything. Her difficult experience could have been avoided if they had checked her care plan or checked with her first. (Fred)

If there is a real desire for people to remain at home, then the people who facilitate that need to do better and need to actually provide support at home. There needs to be a will to make sure it works. I have struggled at times, and I know the system. I never anticipated how difficult it would be. I said to my son and daughter, ‘it was never this hard to support your Granddad. What’s the difference? Is it because I’m older? Maybe my work’s slightly more intense or Grannie’s living slightly longer? What is it that is so different about this time?’ And I suppose it is a combination of all those things. (Alyson)

Care workers also need support to take on other people’s needs. In other care professions such as social work, supervision and self-care are an important part of working in the field. If people working in care do not get the help to support themselves, they will burn out. Even if they are fantastic and love their care role. (Sue)

Being Recognised as Experts by Experience

Our co-authors have a clear desire to work well with others to facilitate the care of people living with dementia. However, to do so, it is important that carers feel that their expertise is being recognised and valued. Unfortunately, this is not always the case.

Living with any degenerative, long-term illness makes you an expert in the management of symptoms and recognising signs of deterioration and decline. However, you need professional input for that additional knowledge and support, therefore making you ‘partners in care’. Professionals need to understand that your support and knowledge of the person you care for is equally important for a good outcome. I took my husband for a routine dental appointment requiring root extraction. The usual department was closed, and we had to attend day theatre. I explained why I needed to be present at the procedure, which was carried out in a place he was not familiar with. I was denied based on infection control procedures, but I know about infection control, and I was just going to stand at his head and not touch anything. They tried to get me to leave, but I had to say no, I’m not leaving. They did not recognise that allowing me to stay would have helped. The experience for all concerned was traumatic, especially for my husband, who was denied his right to an interpreter. He could not follow instructions because of semantic dementia. I was not recognised as a ‘partner in his care’, which also traumatised me; on reflection, I should have stopped the intervention and procedure, knowing the risk. It impacted me greatly, knowing I had let Archie down. It never happened again as I used my rights as his carer to get the right care and interventions for him. (Myra)

When mum came here, the idea was just to get over that initial period of the COVID-19 lockdown and get her back home. However, she had things like fluid on her lungs, and there was one night I lay beside her bed, thinking that it was going to be her last night. I could not get the doctor’s surgery to take any interest in coming to do the assessment. I could not get anybody to respond to the situation. She was struggling to breathe. I phoned NHS 24, and it was just sheer luck that the doctor who came out had been to see my dad at my old house, and she remembered him and the dog. She said your mum needs to go into hospital today. It was just such a relief that someone was listening. Somebody is responding to what I have told them. If she hadn’t gone to the hospital that night, she would not have lasted. (Alyson)

Sharing Home Space

When considering the involvement of paid carers, it is important to remember that they are going into peoples’ homes, a deeply personal space that may be shared with others. It has been difficult to find research that explores this change in privacy for all household members, although there is research that considers paid carers as ‘guests’ in the homes of people with care needs [4].

An issue for us has been that carers do not always announce themselves when they come in. My mum lives with me and my family. They forget that. It changes our privacy, the privacy of my children, my nieces, and nephews. I could be having friends around. Even just a ‘hello, there is somebody here’ would be an improvement, rather than finding them in the bedroom and my mum gone. When the carers first started coming to support my mum a couple of years ago, they were excellent, absolutely brilliant, but the way they were treated by management made them leave. We were left with carers who weren’t worried about bad practice, but who could put up with the behaviour of bad managers. I know that most people try their best, but without the right training they cut corners. My mum is lucky, she’s got me, but there are a lot of people who won’t have someone looking out for them or able to chase up inconsistent carers. In some ways, it has strengthened the relationship with my mum. When she moved in, I made the decision to wipe the slate clean of any past recriminations and avoid situations that cause conflicts. We haven’t done too badly over the last two years. There have been a couple of flashpoints, but we managed to get over them. (Alyson)

I ended up employing my own support. I had gone through an agency, but it was so inconsistent, and they kept sending the wrong people. I also determined that carers were getting less money than the administration costs. I got self-directed support, and I went with the option of employing some mature ladies who were just brilliant. They helped keep the home feeling like a home, whereas having strangers in and out truly changes that feeling. It is very important to build positive relationships with doctors, consultants, and support organisations. It becomes key to how you work together. (Myra)

Examples of Best Practice in Care

It is only natural that our co-authors have formed a bond over sharing their difficult experiences [5]. We also felt that it was important to share the positive experiences people have had in regard to care.

I have done activities that involve providing personal information, but it’s a piece of paper, a tick box exercise. However, there was one lady who supported my wife who was absolutely wonderful and got to know her so well. It was fantastic help because she truly cared. She truly took the time to get to know her. It wasn’t just 14 minutes at a time. (David)

If you meet one person with dementia, you meet one person with dementia. If you treat everybody the same, you’re not going to get anywhere. I believe that knowing the person and building rapport is vital. We need care to be compassionate and empathetic. (MAQ)

At first all my thoughts were occupied by the instances of bad practice we had experienced. I had to work very hard to separate the wood from the trees, so to speak. However, on reflection, there was good professional practice at times, also. One person who truly stands out in this respect was the nurse who had Wullie as one of her charges in the care home. She recognised that although he had health and memory problems, he still had a wealth of lived experience to offer, and she told us how she would ask, and take, his very sound advice on family matters. Another outstanding professional was the maxillofacial surgeon who looked after him when his skin cancer needed to be operated on. By this time, Wullie’s dementia was becoming more advanced, and the surgeon gave him a depth of respect and a feeling of dignity that was missing in so many other parts of his life as his dementia worsened. (Winnie)

I was giving a talk with this chap one day, and he was telling me a story about how he had given a talk at a care home and sat to have tea and biscuits with the residents. He noticed this one man would not have a drink or have a biscuit. So, he just sat and chatted to him and said, ‘would you like a drink of tea or a biscuit?’ The resident said, ‘no’. So, he asked him, ‘whys that?’ The resident replied, ‘because I have not got any money to pay for it!’ So, they gave him a wallet with some coins in it, and he started eating again. It makes perfect sense when you think about it, all through your life, you have a purse or a wallet with you, and then you just suddenly have those things taken from you. (Chris)

I’m part of a carer support group. We are all just trying to support each other. We have good facilitators who let us get on with it. We all have our experiences to share. We know what it is like, and we have people who have experienced different ‘stages’ of dementia. We have a good laugh, it’s not all doom and gloom. It is truly quite funny some of the things that have happened and some of the things we share. (Winnie)

Planning Ahead

Early diagnosis of dementia is often encouraged to allow people to plan for their future. However, we know that people hold different coping styles and that it is often difficult for people to look to the future, instead preferring a day-at-a-time approach [6]. Unfortunately, this can mean that people can hit a crisis point in support needs before putting plans in place [7].

As a family, we had to decide how best to manage. My mum and dad were both diagnosed with dementia within six months of each other, which arose out of crisis. We were oblivious to what was going on in their house until that crisis point. We had some future proofing by getting powers of attorney in place, and we spoke with their GPs and made sure everything was sorted. I’m so glad that we did. When my dad passed away, I did not feel comfortable leaving my mum on her own. She lived in a complex of flats for people who could do with certain support in place. That was no longer going to be enough to sustain her, and I managed to get her to agree to come and stay with me and my family, as I was the only family member who had room. There was a tangible relief for her that things were easier. (Alyson)

I got to thinking, ‘if anything happens to me, what’s going to happen to Archie?’ My husband’s semantic dementia had progressed to the point that he couldn’t be on his own or do anything for himself. I was living his life for him, in many ways, making decisions and thinking about everything. It was a real reality check. I was sitting having a coffee and I just looked at him and thought, ‘if anything happens to me, what will happen to him?’ Semantic dementia was so badly understood. It was such a turning point when I realised that I was living with a very sick person. I hadn’t realised he was sick. Maybe I was in a bit of a crisis, but until that morning when it suddenly hit me, I hadn’t really recognised what was happening. I went straight to the phone to arrange a social work assessment. I needed to make our circumstances more future proof. I also needed to recognise the impact it was all having on me and that the trauma of the situation was not getting better. (Myra)

If anyone says I will suffer, I say no, my wife Ethel will. She’s very pragmatic, she’s an accountant. The first thing we did after I got my diagnosis was get the power of attorney signed. They’re not in place, but they’re signed waiting to go when needed. It is very important to do because most people leave it too late. Being very practical, I also went to the doctor and said I want to discuss ‘end of life’. He dedicated half an hour to discuss it with me, I could not believe it. We were able to discuss ‘end of life’. So, if I’m in the latter stages, there is a DNR (Do Not Resuscitate). There is also information available that draws attention to how any unmet needs I might face could be mislabelled as challenging behaviours. They must not use chemical restraint as I would be trying to tell them something. Ethel would be right to sue them. I have learned that from my work obviously. (Martin)

Jenny and Her Mum’s Story

Jenny is involved with Partners in Research as part of her doctoral research. Jenny’s mum recently passed away, and we felt we could support her by providing space to share her mum’s story within our book. Jenny deliberately chose not to explicitly name her mum to respect her mum’s feelings around disclosing her diagnosis.

My mum had two big fears: cancer (her own mum died of cancer when she was 16) and dementia. She always said if she got dementia, she would rather die. I want to share some snapshots of the ups and downs of our dementia journey over the last five years.

Like many my mum had signs of dementia many years before a diagnosis. The early signs were growing anxiety and a refusal or rejection of support, which is often called ‘oppositional behaviour’. It has made me realise how challenging these early years can be when there is no understanding that your loved one is going through changes in the brain that make navigating small and big realities of life desperately confusing. I imagine that’s how mum often felt. She refused to go to bed, began to repeatedly go to the toilet, and ate extra portions of ice cream, insisting she had not had any. She received responses like, ‘You’ve just been to the toilet’ or ‘you’ve had two portions of ice cream’. Imagine how confused she must have felt, having no recollection of this and of course would say ‘no, I haven’t’. She sometimes got angry as she tried to defend her version of reality and tried to maintain a sense of self and dignity. We learned this as time went on, but it took blunders on our part and research, with no help from health professionals.

The 2022 World Alzheimer Report (available here) revealed that 37% of people in high-income countries receive no post-diagnostic support. Our family fell into that percentage. About a year after my mum’s diagnosis, I actively searched for some support for my dad and I got sent a booklet in the post. That was it. We had to become dementia experts ourselves. I already had a background in an empathic communication process that focuses on the needs behind actions and how this can help us step into another’s shoes, which helped me greatly. If I could not understand one of my mum’s behaviours, I would know that she was doing her best to express herself and meet her needs. If she was going to the toilet repeatedly, which at times became exhausting (for both of us), I would remind myself that perhaps this was her way to feel safe. Going out created anxiety, or perhaps she simply had a urinary infection! If I managed not to object, and instead remain calm and loving, eventually, we would find a way to continue with our day.

The worst times we had were extended hospital stays; this is where my mum’s anxiety and paranoia reached all-time highs—understandably. For a person with dementia, like my mum, it is terrifying to be left in a hospital room by yourself. Imagine if you don’t know how or why you came to be there. You are bed-bound and want to go to the toilet, but you don’t know how to use a buzzer. Eventually, someone comes by and puts you on a bedpan, leaving the room saying briskly ‘buzz me when you’re finished’. You don’t know how to use a buzzer. Someone comes back half an hour later, you are in pain from the position you have been in, they say ‘why didn’t you buzz?’. You couldn’t go to the toilet—you were too anxious; you still need the toilet. They come to give you a pill and by now you think they are trying to poison you and you say ‘no’, slamming your mouth shut, they say, ‘don’t be silly you have to take your medicine’ and try to roughly coax it into your mouth. You choke. For these and many other reasons we did our best to not leave mum in the hospital alone. My sister and I took it in turns, giving up work for months at a time, filling slots in the day when we couldn’t be there with a paid carer. There was the odd nurse that had dementia awareness, but overall, this was shockingly absent. We taped ‘press for help’ to the red buzzer. We put pictures up in her room, a whiteboard in front of her that said where she was, why she was there, and when we would be there next and that we loved her. She nearly died twice. I feel she may have if we hadn’t been there beside her coaxing her on, offering her miniature sips of water and protein drinks we bought ourselves. Fortunately, she did survive and went on to have another three full years of life. However, she was now wheelchair-bound, and along with her other needs, it was no longer feasible for her to remain at home.

Our first care home experience was a disaster with very poor care. I couldn’t bear seeing her being treated in such a way. She needed a hoist at that time, two carers would hoist her into the air talking over her in their native language—not hers—and place her on a commode in the middle of the room, continue talking over her while she is expected to go to the toilet. They told me I could leave the room, but I could see mum was terrified. We had been through the intimacies of toilet cleaning together before, so I said I’d prefer to stay. I did what I could to reduce her anxiety level: hold her hand, explain slowly why she was there, tell her I love her. There are many similar stories. It was not my mum who was at fault; it was the environment and systems she was in that were not able to support her; to the contrary, they increased her anxiety.

We found a better home; she had a lovely bedroom with double doors onto a patio. The sun streamed in from a long view towards Arthur’s seat. She loved the view. My sister created an amazing array of colourful potted flowers on her patio that she maintained even throughout the pandemic. By then I would say my sister and I were becoming ‘dementia experts’ at least where my mum was concerned. We were strong advocates for her. The first day in her new home she relapsed, spinning into paranoia and confusion. The new surroundings created extreme anxiety. The carer that day had dementia awareness and I was so grateful for her response to this exchange:

Mum (in extreme agitation)::

‘I have to get ready to get the plane otherwise I’ll be late to give the talk to teachers.’

Carer::

‘Okay, so you want to get ready, let’s see what we can do.’

Mum immediately relaxed, as here was someone not denying her version of events. Gently we were able to help orientate her to the new surroundings.

Mum settled in and recovered some mobility, and we began to have a wealth of enjoyable times together. Dementia was opening a door to other ways of being and relating together. She became more expressively loving, and it was a joy to exchange affection and reciprocal words of ‘I love you’ at any moment. In this period, and until she died, she became my ‘singing buddy’. To be clear, we are not great singers and had never sung together as a family. Dementia can lessen some inhibitions, and mum became game for singing and dancing with me in a way she would not have previously.

We created a song file, with her memorable music, that became our music. She loved the picture of a howling cartoon dog I put on the front, and we joked about our world tour. Favourites were ‘Cockles and Mussels’ and ‘A Long Way to Tipperary’. We sang together every day even during the pandemic by phone or video. My sister, a genius at practical solutions, arranged the installation of a wall-mounted ‘my home helper’ tablet in her room that allowed us to video directly into her room without the need for button pressing on her end. This was a godsend, as although sometimes she could answer the phone, she could not always find it, or it would be out of charge. We were one of the lucky ones during the pandemic, as we didn’t have to rely on a couple of Skype sessions a week to speak to our loved ones. In the mornings my sister would video in on her morning dog walk, and in the evening, I would sing with her. We could spend hours a day on screen with mum if we wanted. It wasn’t all easy though, there were many tough evenings of us having to phone the care home to get her help with one thing or another.

My mum didn’t want to acknowledge she had dementia, but although it remained unnamed, she had moments of clarity. I remember one when she was striving to explain her experience and said, ‘I feel I’m speaking about somebody outwith me’. My heart ached as I could tell she felt that loss of sense of self. We did whatever we could to connect her with that self, through reminiscing, singing, talking about her career and early life, reflecting back her words and giving her time, and telling her how she had contributed to our lives.

There were many silver linings in our ‘dementia journey’—and while I appreciate this is not the case for lots of people—I’m sharing ours in case it gives hope. We were lucky I know. If the right care/communication was there, mum had a reasonable quality of life in those last few years. Her appreciation of nature—flowers, birds, trees, animals—deepened. We would sit by the nearby canal with picnic lunches, loving the peacefulness of the water and petting every dog that passed. She gifted me the present moment, the pleasure of marvelling at the beauty of a flower, and then we could marvel at it again a few minutes later. It was a joy to enter that aspect of her world. Another delight was her poetic use of words; she often found more alive ways to describe the world around her. Clouds were ‘skiffing across the blue’ or ‘bottle black and white things were out again’ (the magpies in the garden) or perhaps it was a ‘smug of a day’. I would join in, and we would come up with more made-up words, not caring if we were right or wrong, celebrating our inventions. I enjoyed this creativity in relating, thinking on my feet, asking myself ‘what will I say next to create connection and help her feel safe and loved?’ I’m not saying I always managed, but I kept that intention there. Of course, there were tired days where it was hard to maintain, and she always knew if I was tired or upset; she had a heightened sense of feeling. There was no hiding, and at times, it took effort to be present and authentic. As much as it was challenging, I appreciated that quality. I also didn’t mind on those days when she wasn’t sure who I was. I would lightly drop into the conversation ‘I’m Jenny, your youngest’ repeating it a short time later if appropriate. I knew she loved me. If I was loving, she was loving back, it was often as simple as that.

Reflecting on this experience, it strikes me that when my mum felt safe, acknowledged, and loved, she was mostly content. The question I ask is how can we create this for everyone living with dementia? Education and knowledge seem fundamental to support understanding and empathy. This seems the obvious place to begin.

Jenny

Useful Resources:

  • Bielak-Smith, P. (2020). Dementia together: How to communicate to connect. Puddle Dancer Press.

  • Feil, N. (1992). Validation therapy with late-onset dementia populations. In G. M. M. Jones. & B. M. L. Miesen. (2014). Care-giving in dementia: Research and applications. Routledge.

  • Rosenberg, M. B. (2015). Nonviolent communication: A language of life. Puddle Dancer Press.

Fred’s Story

I was properly diagnosed with Alzheimer’s disease about three years ago. Prior to that, it was the family that noticed there was a massive change in my short-term memory and in my spatial awareness. I was just really forgetting short-term things like remembering appointments, etc. Family and friends will tell me something like what’s happening during the day, and I sometimes need them to repeat things a couple of times. Then, the spatial awareness thing, I keep sort of missing things, nothing dangerous yet, but just wee things like knocking over a glass of water.

When I was referred to a doctor, he just dismissed things. So, we then saw a different doctor and he did the usual diagnostic test and all that. We talked about it, and he thought, yes there is something there. He referred me to the neurology department, and they gave me the proper diagnosis with the MRI scan, blood tests, genetic tests, and a whole lot of lumbar punctures. They came in and said, ‘right, this is early onset dementia, under the Alzheimer’s banner’. That was the first time I knew that dementia isn’t just one thing.

I started going to different lectures at a local University. I went with my friend, who’s not got dementia, but he’s interested in research. We went to quite a few of these talks and learned a lot about dementia, which coincided with me finishing reading the book, ‘My name is Doddie’. It’s the autobiography of Doddie Weir, who had motor neurone disease. His philosophy was ‘if you can’t beat them, you join them’. I thought that’s very good advice. I started looking into different areas that do a lot of research. I went straight to my old University and discovered that it has a fantastic dementia centre. The researchers there said that they had a few things I could get involved in, and that’s really how I first joined co-production or co-research. The rest is history. I met so many people and that lasted the best part of two years. I got involved in Partners in Research and writing this book.

I’ve been doing all sorts of bits and pieces including literature reviews, co-produced research, and applying for some funding for a new project. I’m backing out quite a bit now because it is just too much, but hopefully if the funding comes through, I will be doing less of the other activities. I was also invited to the Deepness Board, and I continued to do some work with them to do with dementia. Recently, we wrote and launched a course about money management, ‘You are not alone: Living well with your money’.

I am a part of About Dementia. I first join their subgroups about two years ago. I was invited to join the groups on human rights, technology, and befriending and peer support. There’s been all sorts of involvement with About Dementia. A year ago, I was asked to join their grant assessment panels as a person with lived experience. When one retires, people say you are not to do anything; but that is the worst thing to do. You want to be keeping fit, healthy, and work your brain, meet friends, meet people socially, not just sit in front of the TV or read books. So, the idea of my involvement really is just to keep the brain working. The physical thing is not great, I had this big operation [knee replacement]. It has taken a long time to get there.

I retired from full-time teaching about 12 years ago. But after that I did a bit of part-time teaching for about five years because I’m not in charge of the department, so I’m only there to teach my subject and I really enjoyed that. I was contacted by a university to write an online higher biology course for SQA. The course is still live on their website.

I just feel that all my life I’ve liked to find answers, whether it’s biology, dementia, or football, I like answers. I love my research, and when I was asked if I would like to join Partners in Research, I thought yes, that’s right up my street. A lot of people say, ‘Well you’ve not got a PhD or anything like that. Why do you want to do all that research?’, and I say that research is not so that I could get more qualifications, I couldn’t care less, I’ve got first degree and I’m happy with that. My research is for my own experience. That’s why people look to me and other dementia activists. They look to life experience. You know, we don’t need qualifications. We don’t need a whole load of degrees to say that. In a way, it’s quite nice because it means that I’m sort of independent in what I’m doing. I’ve got the autonomy of doing what I’m doing, which is good. It’s not that they don’t care, but they just want to let me get on with it. The people I’ve been able to work with are like my research octopus legs.

I wish that some of the professionals, like the doctors, were willing to talk about research more. I wish there were more doctors who have the same attitudes as Partners in Research and About Dementia and would talk more about it. But I think it’s the lack of funding and a doctor is not just dealing with dementia. They could also be dealing with heart diseases, common cold, and all sorts of things. So, I don’t think we’ve got the resources and we are underfunded in terms of mental health and cognitive impairment in Britain. So, the short-term solution is not going to be a quick fix, and I think it’s going to get worse before it gets better. It’s not going to get better immediately. I mean, we’re blaming the aftermath of COVID-19, but it is everything, isn’t it? It is just everything.

There is a kind of naivety with my younger family members, where they don’t see something wrong with my dementia, it’s lovely. I wish the rest of the world was like that. I wish the rest of the world dealing with diseases like dementia would see it that way. A person living with dementia is still the same person. It’s like how just because somebody’s got cancer, or some people have got a lung disease, just because he’s got dementia, he is still the same person. I wish a lot of people would remove the stigma of different diseases.

The bottom line is that I’m going to get worse. It’s a case of the time scale. Everything’s all done. But with all the involvement in the world, I just don’t think about it too much. If you’ve got something that worries you and you start doing something different, then it takes your mind off it. Everyone has the same attitude. Take your mind off what’s in front of you, do something different, and you can always go back to it. That would be my case anyway, so I don’t think about it all the time. I go to things like football. I do all the research work. I meet up with families and friends and all that and that takes your mind off things. I’m hoping that it will help but I wouldn’t say it definitely is an improvement or slowing things down. It’s a case of when it happens, it happens.

Fred

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David and Anne’s Story

When we embark on life’s journey, everything seems to be positive and exciting; thankfully, no one mentions the pitfalls that we may encounter or the dangers, such as dementia, that could set upon us in later life. This is probably a good thing; we have to make the best of our life and not spend it worrying or fretting about what might happen. In saying that, should we be ignorant or unaware of the early signs or symptoms of dementia or neurological condition? Could it be treated, or even in the future eradicated if we are more aware of these early signs or possible genetic connections? It’s ironic that you devote your working life to improving your situation and planning for this thing called retirement! Only for something unexpected to come along and slap you down. It happened to me, my brother, my sister. It’s as if we are cursed as a family, life’s a lottery really.

Anne was finally diagnosed with frontotemporal dementia (FTD) in August 2018. This was almost two years after our GP said there was nothing wrong, despite my observations and fears. When Anne was diagnosed, we were handed an information pack and told a health visitor would see Anne each month to monitor her and advise us on how to locate various council and government assistance, which as it turned out is very scarce or in some areas not available. In March 2020, Anne was admitted to full-time care, the very day of the COVID-19 lockdown. I was unable to see her for three months. Video calls did not work, and she deteriorated rapidly due to social isolation (See Fig. 4.1). Within just a couple of weeks, she could no longer walk, talk, or feed herself and had developed amyotrophic lateral sclerosis (ALS), the most common form of motor neurone disease (MND). After more than six months, restrictions were eased, and her general demeanour improved, but the progression of FTD and ALS was irreversible. I cannot speak for Anne, but I know she suffered greatly during this time, as did I, going through every stage of grief imaginable, even having suicidal thoughts.

No one could answer my question, ‘why did this happen?’ Coupled with my lack of knowledge and understanding of the illness, I embarked upon 15 months of research into the potential causes of her illness. I discovered a multitude of possible causes. A great deal more than clinicians had made me aware of when asked. My research started with Anne and all the incidents, whether medical or social, that she experienced; this included a great deal of stress with the tragic loss of close family members, constant high blood pressure, genealogical and gynaecological conditions, and lifestyle and environmental issues. I also looked into my brother and sister, both of whom succumbed to dementia. My brother died from vascular dementia, and my sister, coincidentally, followed the same pattern of incident in her life as Anne, also has FTD. Anne’s immediate family was also scrutinised, and her maternal grandfather had Parkinson’s disease (which can have clinical overlaps with FTD). Her father had issues with delusions, and her mother had behavioural problems, similar to Anne, but both died from cancer before any other diagnosis was available.

My own father was showing very clear signs of Alzheimer’s disease, although again his death certificate registered cancer. In the past, many cases of dementia were never actually diagnosed, probably for a variety of reasons, such as misattributing ‘old age’ as the probable cause. Hindsight is a wonderful thing, but we have narrowed Anne’s dementia down to what I believe was a combination of many factors. I likened it to a cocktail of ingredients, and the more that were added, the worse her condition eventually became. We, as a family, are now convinced we can see the signposts that were placed in front of us. We consider the start of this terrible journey as far back as 1981 when a great deal of stress entered Anne’s life, not helped by the fact that I was working overseas in what was then Burma, a place where she couldn’t be with me. There were various other stress-related family issues, medical conditions, lifestyle factors, and the tragic death of her younger sister to undiagnosed pancreatic cancer in Australia in 2006, just 40 days after Anne had visited. The build-up of stress over many years, culminating in this loss, was the trigger or the cocktail strength now exceeding what was safe.

One morning in 2010, Anne suffered great pain and had to be rushed to A&E. She had a contorted ovary and a non-malignant tumour, which resulted in a full hysterectomy eight years before her FTD diagnosis. Another addition to the cocktail of events. As I write this Anne is now receiving palliative care and is unable to swallow any food or liquid, and her prognosis is not good. We are nearing the end of a journey, we were completely unaware of that we believe started when the seeds were sown more than 30 years ago and only officially diagnosed four years ago!

Following the loss of Anne, my younger son came to look through her things to see what he wanted to keep, both of us ending up in tears. I had already made two trips to the charity shop, with a third one planned. He said, ‘have you looked in the two drawers in my old room?’ I hadn’t and lo and behold at least 100 tops of various kinds were discovered! Not being a medical professional, I cannot even guess why she took to buying so much, even things that didn’t fit her. I must assume it was partly her illness and partly depression, which I worry I hold some responsibility for, with all my work travel.

My reason for co-producing this book and joining Partners in Research is that I don’t want anyone to go through the agonies and grief that we have experienced. We should be more aware of the warning signs and reasons for debilitating, neurological conditions. We must not believe that the only symptom is a memory problem. Academics and scientists are doing their bit, but there is more to be done by all of us to raise awareness of research and dementia, and the importance of lifestyle, genetics, and other medical conditions. Hopefully, together we can understand the reason for dementia and find a treatment and cure for all.

Over a hundred years ago, Alzheimer’s was discovered, and we still have no cure; COVID-19 had vaccines available within months. There is a message here and a need to prioritise how we research and find a cure for what could be the world’s worst epidemic since the Black Death! (Fig. 4.1)

Fig. 4.1
Two photos. In photo A, Anne is seated on a chair with a shocked expression and her forefinger pointing to the right. In photo B, she is seated on the chair and holds the Jersey.

Photos of Anne shared by David. The photo on the left was during the latter stages of lockdown. The one of the right was 6 months later when Anne’s demeanour had improved, showing social isolation caused great distress

Full size image

Anne 30/08/1948–20/08/2022 a lovely individual, not a bad bone in her body, which has finally given up the battle, after 55 wonderful years together and with lots to ponder; thanks for the memory kid!

David