‘How Does Your Dementia Affect You?’

Abstract

This chapter is designed to draw attention to the types of dementia and how the different diagnoses can influence the brain and the body. The chapter offers some background information about the brain and myths surrounding dementia before taking the different types in turn. We have included some common features of the conditions alongside lived experience. Finally, the chapter explores experiences of diagnosis and questions how we might improve this process.

Co-authors: Rosalie Ashworth, Sue Fyvel, Alyson Hill, Chris Maddocks, Masood Qureshi, David Ross, Stuart Hay, Martin Robertson, Willy Gilder, Winnie Henry, Myra Lamont, Agnes Houston, and Fred S. Wilson

Email:

Neuroprogressive and Dementia Network, NHS Tayside, Dundee, UK

Emma Law

Email:

Neuroprogressive and Dementia Network, NHS Tayside, Dundee, UK

Understanding the Brain

Our book aims to draw attention to the lived experience of people with dementia and part of that involves learning more about the brain and how the brain interacts with the rest of the body.

The brain is arguably the most important organ in the body; however, it is also one of the hardest organs to learn about. Much of our earliest understandings about how the brain works come from seeing how brain damage impacts a person. A well-known example of this is that of Phineas Gage, who survived an accident where a metal pole went through his frontal lobe. The changes to Phineas’ personality helped us learn what the frontal lobe is responsible for [1].

The brain is made up of two hemispheres that control opposite sides of the body, that is, the right side of the brain controls the left side of the body. The two sides of the brain communicate through a structure called the corpus callosum, a large bundle of nerve fibres that connect both sides of the brain. As with the Phineas Gage example, we have learned a lot about the corpus callosum from people who have had their corpus callosum severed, so that the two sides no longer communicate.

Myths About the Brain

There are many myths about the brain that are part of popular culture, including ‘the left side of the brain is logical’ and ‘the right side is creative’, and ‘we only use 10% of our brain’. These myths can make it harder for people to trust the accuracy of more up-to-date information about the brain.

It is a popular belief that the two sides of the brain are responsible for different tasks, for example, the left side of the brain is responsible for logical thinking, and the right side of the brain is responsible for creativity. However, we know that the brain is complex, and few tasks are localised to just one area of the brain. Neuroimaging has added to the scientific evidence to show global rather than one-sided properties of the brain network [2].

The myth that we only use a small proportion of a brain has been used in films and advertising, spurred by the idea that we have space in our brain to ‘activate’ [3]. However, we can see from brain imaging that activity spans across the brain, with billions of neurons (nerve cells) working together. It is important to challenge such myths; examples such as ‘we only use 10% of our brains’ could impede better scientific literacy [4].

Areas of the Brain

The brain is made up of approximately 100 billion nerve cells that work together to send information [5]. The surface of the brain is covered in bumps and grooves (as seen in Fig. 3.1), which increase the surface area of the cerebral cortex, the largest part of the brain or the top layer. Greater surface area results in an increase in cognitive function.

Fig. 3.1

Anatomy of the brain

The cerebral cortex is separated into several areas that are responsible for different functions. Understanding how these areas of the brain work can help with understanding why damage to these areas can result in changes in both the mind and body.

• The frontal lobe is involved in our personality, decision-making, and problem-solving.

• The temporal lobe helps us understand speech and language.

• The hippocampus is a brain structure that sits deeply within the temporal lobe and plays a major role in memory, including the movement of memory from short-term to long-term storage.

• The parietal lobe processes sensory information.

• The occipital lobe focuses more on visual information.

The wide range of functions that are performed by the brain shows just how complex it is as an organ, as well as how much it impacts the rest of the body (as we have illustrated in Fig. 3.2). It is vital that when we think about people living with dementia, we consider the whole person and how the brain and body are at the centre of a huge number of facets.

Fig. 3.2

Holistic view of the person

Myths About Dementia

Research has shown that public knowledge of dementia is generally low [6, 7], which, as with brain myths, can result in people believing false information. Falsehoods such as ‘dementia only affects older adults’, ‘there is nothing you can do to change your risk of dementia’, and ‘Alzheimer’s disease and dementia are the same thing’.

Myth 1: ‘Dementia Only Affects Older Adults’

As we age, our memory can worsen, which is a normal age-related decline caused in part by changes in hormones and a reduction in cells that protect and repair. Approximately 40% of people aged 65 years and over are likely to experience age-related memory loss. However, of these, only 1% are likely to go on to get dementia each year.

Are you at a higher risk of getting dementia as you age?

Yes. It is the largest risk factor.

This means that people aged 65 years old and above are more likely to develop dementia than people aged under 65 years old. Approximately 2 in every 100 people aged between 65 and 69 years old will develop dementia. This risk roughly doubles every five years. Therefore, by 90 years old, approximately 33 people in every 100 may develop dementia [8].

Although age is the largest risk factor for dementia, it is still worth remembering that if approximately 2 in every 100 people over 65 years old get dementia, it also means 98 people out of the 100 do not.

Despite the risk associated with age, we also know that younger adults can also develop dementia. Approximately 1 in every 20 people who are given a diagnosis of dementia will be diagnosed with young-onset dementia (under 65 years old).

There are several age-related challenges people can face. People under the age of 65 can take longer to get a diagnosis due to misattributing symptoms to a different condition, such as depression, or assuming symptoms cannot be dementia for this age group [9, 10]. We can see this in Willy and MAQ’s stories. Research has shown that it can take an average of a year longer to get a diagnosis of young-onset dementia [11, 12].

As dementia is assumed to be an older adult condition, younger adults can have to fight to be recognised as having dementia, which can impact job status, access to benefits, family dynamics, and responsibilities [13]. Equally, older adults can face a double stigma as an older adult in an ageist society and having a stigmatised condition such as dementia [14].

I don’t think my parents would have accepted my diagnosis. They’re dead now, but I don’t think they would have accepted it. My dad was very intelligent right up to the very end. He started learning how to use the PC in his 70s and he was well into spreadsheets and databases until his late 80s. He was highly intelligent, and my mum was too. So, I don’t know whether they would accept that someone could have dementia at an earlier stage. I think that they were old fashioned is what I’m trying to say. (Martin)

Despite differences between people with early- and late-onset dementia, research has also shown that there are shared experiences in terms of preferred coping strategies and how they look to the future [15].

Myth 2: ‘There Is Nothing You Can Do to Change Your Risk of Dementia’

Everyone has a chance of developing dementia. However, some people are at higher risk than others. Some risk factors are unavoidable, for example, ageing is the biggest risk factor, and genetics can play a greater role in some rarer dementias [16]. Other risk factors are called modifiable, for example, stopping smoking, reducing alcohol intake, and increasing physical activity.

In general, factors that support a healthy heart and body will support a healthy brain. For example, managing blood pressure and cholesterol, exercising regularly, drinking responsibly, and staying engaged socially. Research suggests that we need to improve public education about brain-health behaviour changes that can be made to lower the risk of dementia, with current efforts less effective for people with low education [17]. In addition to being more receptive to brain health campaigns, people with higher education are thought to have an element of cognitive protection known as ‘cognitive reserve’ [18, 19]. The theory suggests that if a person has multiple routes to access a piece of information within their brain, it results in more pathways to cope with change or damage. This is not to say that people with high education will not develop dementia but that they may be able to compensate for changes for longer.

Recent debates have suggested that up to 35% of cases of dementia could be prevented or delayed based on the modifiable risk factors described above, among others [20]. However, it is important to note that evidence remains limited. It can be incredibly difficult to single out particular risk factors in a more definitive way because of the complexity of individual, social, and environmental factors [21]. We also need to be mindful of the fact that most dementia is sporadic (no family history or obvious risk factors), and when we look to raise awareness of the different types of dementia and the modifiable risks, individuals do not feel responsible or to blame for developing dementia [22].

The Alzheimer’s Society [23] has produced a resource to help people understand their risk of dementia. Available here: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/dementia_reducing_your_risk.pdf

Myth 3: ‘Alzheimer’s Disease and Dementia Are the Same Thing’

Dementia is an ‘umbrella term’ that covers over 200 different types, including Alzheimer’s disease [24]. A survey of public knowledge of dementia found 58% of people believing that Alzheimer’s disease and dementia were synonymous terms [25]. It is perhaps unsurprising given that the most recognised UK charities for dementia—Alzheimer’s Research UK and Alzheimer’s Society—refer only to Alzheimer’s disease in their name despite aiming to represent all types [26]. The same can be seen in USA [27].

Alzheimer’s disease is the most prominent form of dementia, so everybody recognises, and to an extent understands, the word or knows that it can be something about memory. What people don’t know, and I did not know, are all the other types of dementia. I’ve heard of related illness like Motor Neurone Disease, Parkinson’s and Huntington’s, but I think we need to be more aware of the many other forms of dementia. There is a large educational need for the public to be aware. (David)

I have real problems describing my illness. It MIGHT be PCA, but that hasn’t been formally diagnosed. I tend to say ‘atypical Alzheimer’s’ but am aware that Alzheimer’s disease has all kinds of assumptions that don’t apply to me. Sometimes I just say ‘I have a brain disease’. (Willy)

I can speak well, and my memory is not so much of an issue, but I find things like sensory issues and balance difficult. I struggle now using the phone, especially when people talk too quickly. Robin Williams also had Lewy body dementia, and he thought he was going mad. I keep thinking, if only he had a diagnosis he may still be here today. (Chris)

For me, dementia is a neuroprogressive condition that affects different parts of the brain and I relate it to a cancer type thing that is either a slow growing tumour that affects one particular part of your brain, or it can be tangled throughout your brain. If you know what part of the brain is affected, you can then deal with the condition because you know what kind of thing you need to focus on. (Myra)

Our book aimed to represent people with different types of dementia. Within the group of co-authors for this book, we have experience with Alzheimer’s disease, vascular dementia, posterior cortical atrophy (PCA), frontotemporal dementia (FTD), semantic dementia, and Lewy body dementia. The following sections will take each in turn, with further information within people’s individual stories.

Alzheimer’s Disease

Alzheimer’s disease is the most common type of dementia for early- and late-onset, accounting for approximately 70% of dementia. Alzheimer’s disease is characterised by a build-up of proteins known as beta-amyloid, which form ‘plaques’, and tau-protein, which cause ‘tangles’. These proteins stop messages going between cells, which causes the cell to die. Neuroimaging looks for things like brain shrinkage from this cell death [28]. There is no specific gene that directly causes Alzheimer’s disease; however, there are variations in a gene called apolipoprotein E (APOE) that can increase or potentially decrease the risk of late-onset Alzheimer’s disease. Similarly, there are three gene mutations associated with early-onset Alzheimer’s disease. Despite these genetic markers, we still have a lot to learn about the genetics of Alzheimer’s disease [29].

Key clinical features of Alzheimer’s disease:

• Tends to begin in the hippocampus, which makes it harder to learn or retain new information. Emotional content is more likely to be preserved by the amygdala.

• Gradual, slow decline in cognition across months to years.

• Changes in language skills, including word finding, reading, and writing.

• Complex tasks can become more difficult, particularly problem-solving skills.

• Changes in spatial awareness and orientation to time and space.

Lived Experience

Fred shares some of his lived experience of Alzheimer’s disease below. More information can also be found in the stories of Willy, Agnes, and Stuart.

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. I was forgetting short-term things like what day it was, or if my wife told me something, like what would be happening during the day, I needed her to repeat it a couple of times. I think that was the first symptom. Then, the spatial awareness thing, I keep sort of missing things, nothing dangerous but just wee things like knocking over a glass of water. I never used to do that because my profession was scientific experiments, and I’m usually very careful. So that was the first thing. It was my wife who first noticed it, and of course my children as well.

So, I was referred to my own doctor and they just dismissed it as just one of these things that happens as you get older. They weren’t very interested, you know? My wife then pushed to see 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 on to the clinic at the neurology department and I was given the proper diagnosis with the MRI scan, blood tests, genetic tests, and a whole lot of lumbar punctures. They came back saying right, this is early onset of dementia, under the Alzheimer’s banner. That was the first time I knew that dementia is not just one thing.(Fred)

Vascular Dementia

Vascular dementia is the second most common type of dementia. For every 100 people who have dementia, 20 will have vascular dementia. Essentially, vascular dementia occurs when there is a lack of blood and nutrients to the brain, which can cause cells to die. This can be caused by a stroke or a series of small strokes or small vessel disease usually caused by high blood pressure. There are many individual differences in the presentation of vascular dementia because of the varying distribution of ‘vascular involvement’ or ‘scattered impairment’ [30, 31]. We also know that there can be overlapping symptoms with Alzheimer’s disease, which can lead to a diagnosis of ‘mixed dementia’ [32].

Key clinical features of vascular dementia:

• Significant decline in cognition that interferes with independence in everyday activities.

• Evidence that the change is associated a cerebrovascular event, that is, a stroke

• Can have speech and language difficulties such as aphasia.

Lived Experience

Emma shares some of her care experience with vascular dementia.

‘If you’ve met one person with dementia, then you’ve met one person with dementia.’ As I heard one of the Partners in Research, Agnes Houston, talk about dementia, her quote felt particularly true of vascular dementia. The symptoms can be very different depending on which part of the brain is affected.

Most commonly, memory is affected by other symptoms, such as slower thinking, confusion, changes in speech, and communication difficulties. Slowed thinking can show itself with difficulties in organising thoughts and planning, sometimes resulting in the person having problems with everyday tasks such as making a meal, choosing what to dress in, or doing the usual household chores.

Sometimes the personality can change, which can be very upsetting for loved ones. There may be changes in mood, and someone may experience depression for the first time in their life or become emotional at events they would not normally have been affected by. Any of the senses, such as sight, hearing, smell, or taste, may change depending on the brain area affected. Carers and friends have noted a person’s aversion to certain smells or experiencing ‘phantom smells’ or developing a sweet tooth. Sometimes people experience difficulties in walking and lose spatial awareness—seemingly becoming unbalanced and more prone to falling.

There’s a great publication on the Alzheimer’s Research UK website which is an easy to read guide on vascular dementia (available here)

I have nursed people with vascular dementia and have seen all of the possible symptoms in some form or other. I can also share my personal experiences with my stepfather, who had a diagnosis of vascular dementia when he was in his 80s. We first noticed that his memory was beginning to fail, and my mother noted that sometimes he would be very disorientated and confused. Following these spells, he would have a day or so of being extremely sleepy. Often his memory would deteriorate further following these spells. He lost interest in reading books and would look at the newspapers but was not aware of what was happening in the world.

He loved to watch opera and continued to get great pleasure from watching and listening to opera and classical music. His tastes changed, and he later preferred sweet foods. He remained essentially the gentlemen he had always been and fortunately did not undergo some of the personality changes that I used to hear about from relatives of people in the ward where I was a nurse. There were stories of the husband who never spoke in anger until the disease took hold or the wife who swore using words that their family didn’t even know they knew. Very troubling for everyone involved. My stepfather remained a gentle and kind person to the day he died despite his advanced vascular dementia.

Emma

Posterior Cortical Atrophy

There are many inconsistencies in the terminology and diagnosis of posterior cortical atrophy (PCA). Many of the changes seen could also be attributed to Alzheimer’s disease, which has led to difficulty in isolating PCA-specific features [33]. The age of onset tends to be younger in people with PCA than in those with typical Alzheimer’s disease. There remains a lack of consistent cognitive and neuroimaging evidence to help distinguish subtypes of PCA [34].

Key clinical features:

• Progressive decline in visual processing and posterior cognitive functions.

• Visuospatial impairments—find it difficult to interpret what you see due to brain struggling to make sense of things, not eyesight errors.

• Difficulties with working memory, which is used to hold information in mind as part of carrying out cognitive tasks.

• The ability to form new memories tends to be relatively preserved compared to that in Alzheimer’s disease.

Lived Experience

Martin shares some of his experiences of living with posterior cortical atrophy.

My dementia is sensory based, and I can get sensory overload. I cannot see the captions on a TV, and in the autumn with the low light filtering through the hedges (we live rurally), it blows my mind as I can’t watch TV more than approximately 30 minutes as I am using my eyes and ears. My brain could not cope with the sudden change from daylight to darkness; however, we have put in daylight lights and put them on early so I can adjust, hopefully that will help. I would love to go to the cinema to watch the new Bond film, but I would be catatonic within minutes. I have gone catatonic several times, I say catatonic, I mean my brain just shuts down and the only voice I hear is my wife’s. All I need to do is get to a quiet dark room for an hour to let my brain reset. Luckily, I have had my wife Ethel with me each time.

One time I visited Peterhead prison for an audio-visual experience. They give you headphones to have on and you go around the cells. I never even thought about it, but it was too much for me and by the end I was staggering like a drunk. Someone actually said, ‘he should not be here, he’s drunk!’, so Ethel stormed over like she does and said, ‘He’s not drunk. He’s got dementia!’ and the poor woman felt very sorry for me. She got a wheelchair and pushed me to the car, which I thought was quite nice. However, the problem is when I’m not with Ethel.

I carry a card that says what to do if I go catatonic. It says please try and take me to a quiet room, but I know that might not happen and I might end up in A&E (Accident and Emergency Department). If I did, I’d get worse because it’s noisy and bright. … So that’s what I’m terrified of, because I’d end up in a dementia ward and it would be noisy and bright. There is a flag on my electronic notes at the GP telling them that I have got PCA. I really don’t know if it’s linked up to the hospital though.

I have lost my hearing; it goes somehow when I’m reading something. When I’m looking at something it’s like my like ears automatically shut down. The brain is highly intelligent in that sense, it’s trying to narrow the focus. I close my eyes now, but I didn’t realise I wasn’t hearing until I was reading something. As well as the sensory changes, my emotions have got a lot more intense and sometimes hard to control. It wasn’t a problem before dementia, but I have learned what my trigger points are, and I try to avoid them. It has a big impact on Ethel, but not really on the rest of the family.

My cognitive functions are fine, as is my memory. I truly believe that posterior cortical atrophy is the usual ‘later stages’—I also get very easily tired and could sleep the day away. I want to let professionals know what it is really like in the later stages, for example, bright colours and lights are terrible and noise is confusing.

(Martin)

Frontotemporal Dementia

Frontotemporal dementia (FTD) is the second most likely cause of young-onset dementia, with most cases (60–80%) believed to be sporadic, that is, not linked to a genetic cause [35]. There are three main subtypes of FTD: behavioural variant (bv-FTD), semantic dementia, and progressive non-fluent aphasia. Semantic dementia is explained in more detail in the next section. The remainder of this section will look at behavioural and language types. Unlike Alzheimer’s disease, there are no clinical biomarkers for FTD, which means diagnosis relies on clinical assessment [36]. It is made harder by the overlap between FTD and other neurodegenerative diseases, such as motor neurone disease, [37] and is often mistaken as a primary psychiatric disorder [35].

Key clinical features of the behavioural variant:

• Gradual and progressive changes in behaviour.

• Difficulty understanding the social demands of a situation.

• Lack of inhibition, for example, impulsive or inappropriate behaviour.

• Can be repetitive or compulsive behaviour.

• Lack of insight (awareness) of changes.

• Significant impairment to activities of daily living.

Key clinical features of the language variant:

• Gradual and progressive changes in language.

• Relatively preserved memory.

• Difficulty expressing language can lead to less language use and mutism.

• Significant impairment to activities of daily living.

Lived Experience

David shares his experience of supporting his wife, Anne. Experiences of FTD can also be seen in MAQ’s story.

Like most people I had never heard of FTD, which exists in approximately 5% of dementia cases. Most people know of Alzheimer’s disease, but not what the many other forms of these neurological conditions truly mean or how they affect us. Loss of memory usually springs to mind! However, this is a fallacy, although a part of the condition, it is neither the only symptom nor the first sign of these degenerative conditions. Eventually Anne and I were having arguments where memory became a factor, then speech was affected, and only after diagnosis did eating problems arise and violent behaviour sometime known as ‘sundowning’ occur, again another term I was unaware of (more information on sundowning available here).

Sadly, all my findings are retrospective in their discovery. I am not an academic or a clinician, but I am sure that Anne’s dementia was incubating for many years. The signs were there, and we didn’t understand or know why her behaviour was gradually changing. The very first sign that we missed was apathy, followed by hoarding over a long period of time.

The toiletries in Fig. 3.3 are the tip of the iceberg of Anne’s hoarding. Discovering these toiletries really affected me, I felt so guilty that I didn’t know about them or the reasons for all this hoarding. I know that hoarding is an early sign of FTD, but the extent of it overwhelmed me. In addition to many toiletries, shoes, trousers, coats, etc., we now must have close to 500 tops, shirts, and woollens. No one could possibly wear all these things, yet Anne, for the most part, kept them hidden from me.

Fig. 3.3

Example of hoarding activities

Following Anne’s death, my sons and I went through the range of hoarding. We did a tally of the volume of clothes collected, totalling over 1000 items, including 757 tops/jumpers, 70 pairs of trousers, and 84 pairs of shoes. Importantly, many of these items had never been worn, but the collection continued to grow.

David

Semantic Dementia

Semantic dementia is classified within a group of frontal- and temporal-lobe syndromes that presents with deterioration of the temporal lobe. Semantic dementia can be the cause of early-onset dementia. There are overlaps between semantic dementia and other neuroprogressive conditions [38, 39]. Semantic dementia causes a breakdown of conceptual knowledge, which means that people are more likely to have effortless fluent speech that appears vague or empty in meaning [40].

Key clinical features of semantic dementia:

• Loss of the semantic component of language, for example, general knowledge and features of concepts.

• Reduced ability to generate exemplars from semantic categories, for example, animals or transport.

• Likely to struggle in memory test tasks that look at things like how many different animals can you name?

Lived Experience

Myra shares her experiences with her husband Archie’s symptoms of semantic dementia.

Semantic dementia is very rare, and life expectancy is 7–10 years. In our experience, it was seven years, three years following the second diagnosis, which was worse than the initial diagnosis of Alzheimer’s disease. We had no idea of the syndrome, nor had the professionals we were in contact with, other than the neurologist who gave us the diagnosis. Once a professional meets someone with semantic dementia, they would very quickly diagnose another, as it is a very defined syndrome.

The most recognisable feature of this syndrome is aphasia: progressive word-finding difficulty that affects the understanding of words and their meaning. There is an initial loss of words with a rapid decline in forming sentences and deficits in visual and auditory non-verbal tasks.

Recognition and comprehension aphasia causes difficulty in the expression of thoughts, the ability to recognise faces, difficulties in object naming, and subsequent conversations. Often errors in speech, substituting words to describe an item, for example, ‘item–paper’, ‘animal–creature’, ‘object–thing’.

Eventually losing language skills. Family and carers get to understand key words in a limited vocabulary.

From personal experience, numeracy was preserved, evident with number games such as sudoku, solitaire card games, and dominoes.

A person living with semantic dementia needs one-to-one support as they lose the meaning of everything and life around them. Orientation and short-term memory are preserved, and individuals can live a fairly normal life, particularly if they have routines in place. However, they are living with continuous risk, as there is no comprehension and understanding of the world around them, and they struggle to express feelings.

People living with semantic dementia can be unable to tolerate noise or new experiences. They are unable to understand road signs or any written instruction. They take people at face value and have difficulty recognising faces, leading to vulnerability. They can also find crowds threatening. Despite all these difficulties, a person can live well with good care in familiar surroundings and with encouragement to continue with low-risk activities.

There is preservation of social conduct and activities of daily living. Behaviour issues can arise as the disease progresses depending on the environmental situation. Loss of inhibition, not recognising faces, images, and places, again due to lack of comprehension, and loss of conceptual knowledge.

Capacity is difficult to establish due to a lack of comprehension. Early in the syndrome, reading and writing is difficult, spelling words phonetically. As the disease progresses, the level of risk is much greater. The home environment must be assessed, especially in the kitchen, where a bar of soap could be confused with food due to recognition and loss of conceptual knowledge. Risk of being home alone, includes not recognising door callers for example.

Diet can change with a preference for sweet foods, and choices cannot be made because the person cannot read menus or understand what food is being eaten. It is important for the carer to prepare a plate of well-balanced food and manage the diet and serving of food.

On a positive note, disorientation and sleep disturbance in our case were preserved; however, they can change as the disease progresses, sleeping more and physical weakness developing.

Myra

Lewy Body Dementia

Lewy body dementia encompasses ‘dementia with Lewy bodies and Parkinson’s disease dementia’. Medication can be a challenge. You may find that the medication that addresses one symptom can worsen a different symptom [41]. More research is needed that looks at the views of people affected by Lewy body dementia as well as pharmacological treatments. There is much variation between people with Lewy body dementia, and it is often misdiagnosed as a result [42,43,, 43, 44].

Key clinical features of Lewy body dementia include:

• Fluctuating attention and alertness.

• Repeated visual hallucinations.

• Sleep disturbances.

• Possible biomarkers in relation to dopamine (a chemical messenger between nerve cells).

• Interference with things such as activities of daily living.

Lived Experience

Chris describes her experiences living with Lewy body dementia and Parkinson’s disease.

Everyone thinks that dementia is all about memory, but they forget about all the sensory issues. I’m having more difficulty walking now, and balance issues. My mobility scooter gives me my independence. Today, I had a long walk in the hospital to get to where I needed to go, and I felt like I was walking through sludge, every step was a real effort. I never used to be like that before, but now must take it into account. How far can I walk? or if I walk somewhere, will I be able to walk back again?

I was never an anxious person, but anxiety and depression became a big issue, and I was never like that. It goes with Lewy body dementia. There were times when I used to feel really scared, but I couldn’t think of what I was scared of. There was just this, I’m scared and anxious feeling, but I don’t know why.

The one symptom that I don’t really get that’s typical with Lewy body dementia is hallucinations. I do not get hallucinations, but sometimes I might think there is somebody next to me, and I’ll talk to them, and then I realise that there is nobody there. It’s quite fleeting. So, it comes and goes quite quickly. Or, if I’m tired, I will talk to someone, and there is no one there, but some people get really bad hallucinations. I sometimes get a smell-based hallucination where I can smell wood burning. I always check with somebody and say can you smell wood burning? If they can, then there is actually burning, and if they can’t I know it’s not. I did not realise that it was linked to my dementia. Luckily, I love the smell of burning wood, but some people get smells of things like sewers. I also cannot multitask anymore, and I used to be good at multitasking.

It is interesting that Parkinson’s disease comes into physical health, whereas dementia comes under social care. It is so wrong, because at the end of the day dementia is a disease in the brain, and it should come into health care, not social care. It’s little things like, I see my Parkinson’s nurse every three months or every six months, and if I get any sort of symptoms, I can ring them up and talk about things. I also got referred to an exercise class in the hospital for Parkinson’s and a hydrotherapy class because exercise helps. These are all things that I have because I have Parkinson’s disease. You don’t have this for dementia.

I think back to Robin Williams, he had Lewy body dementia; it was not diagnosed until after he had killed himself. I sometimes think, if only he had his diagnosis, he may have still been alive today. The Lewy Body Society are clear that it is so important to get the correct diagnosis, especially as there are certain medications that you should not be given if you have Lewy body dementia.

Noise levels are also a big thing with me; I struggle with things like public transport, the underground, and things like that. It’s just a lot of noise. People don’t realise that a noise in the background on a zoom call can be very distracting; for example, if people are not muted my attention is drawn straight to the noises and not to what’s being said. I can no longer read a book because by the time I get to the second chapter I forget what’s in the first chapter. I’m watching films and things like that, and Heather goes mad because I’ll stop and ask questions. Therefore, I do not even ask the question now because she says I’m watching the film. If it’s an easy feel-good film, I can watch it and go along with it, but anything that has got a plot, forget it.

I also think my emotions are more heightened. They are more on the edge of where they were. I also notice if somebody talks too quickly. For example, my sister and I are so different, and my sister talks a hundred miles an hour. I was with her one day, and she was talking about this that and the other, and when I asked a question, she said, ‘Chris, that was two conversations ago!’. I had to say, ‘Well my mind is still concentrating on the first thing that you were talking about, so I have not even heard items two and three’. People do not think like that. I also always say, don’t ask multiple questions in in one sentence, for example, Do you want to drink? Tea or Coffee? How do you take your coffee? Do you take milk and sugar? If it is all in one, I probably wouldn’t be able to answer.

One of my coping mechanisms is I play games on my phone, because when I’m looking down and playing the game, I’m not aware of all these people stood around me. I used to love playing a farm game on Facebook, but they stopped doing that game. I’ve got a couple I do now, a drawing game and some puzzles. I quite like things where you do things like sow seeds in a virtual farm and plough it. I also try to do ones that are mind stimulating.

People do not realise dementia totally changes your way of life. I loved cooking, but sometimes the process of cooking throws me a little bit. I can only cook from an actual recipe book now. It affects your whole life, and when you’re not sleeping well, you do not function well in the daytime. So, I’m having lots of naps in the day now, especially early evening. Most evenings Heather’s gone to bed by the time I wake up. Sometimes I’ll wake up at three o’clock in the morning on the sofa and then go up to bed. I know that is not good for me but it’s how I get by.

Chris

Diagnosis Experience

We know from the difference between the number of people with suspected dementia and the number of people with a diagnosis of dementia that there are several barriers to diagnosis. Some of which are noted in Chaps. 1 and 2. In the following section, we reflect on different diagnostic experiences of our co-authors.

In my experience, it is difficult to determine a diagnosis in the early stages of dementia because you will look for other reasons for someone’s situation. Infection or whatever could be going on, which makes it very hard to diagnose. This may be more the case for people who are under 65 years old, as doctors are less likely to think of dementia. My mum never accepted that she had dementia. She would acknowledge that her memory is not so good anymore, but in hindsight, there was a lot of behavioural stuff that we did not attribute to her dementia at the time. We just thought there was an exaggeration of her usual behaviours, and everything was fine. (Alyson)

It took me two years to convince the GP that something was wrong with my wife. I lived with her, so I saw it every day. I saw it every minute of the day. I was not aware of dementia, or all the various forms of dementia. When Anne was diagnosed, I was handed an information pack that made for terrible, frightening reading. 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, as if we are cursed as a family, life’s a lottery truly. (David)

One of the things to think about is whether you are diagnosed with dementia because you had symptoms or for other reasons. I didn’t have any symptoms; it was a real shock when I was diagnosed after a post-heart surgery MRI. I had to research everything myself. There was nothing out there to help me, to guide me. I was diagnosed and sent home to wait for death. That’s it. I feel like I’m now trying to do everything yesterday. I do not want to lose my identity. I do not want to lose the stance that I have in the community, the position that I hold, and the respect that I have. By sharing my experiences, I hope to make sure other people do not experience the same. (MAQ)

Everyone you speak to has a very different experience of diagnosis. Professionals do not give you the information you need to live with the diagnosis of a terminal condition requiring palliative care and therapeutic interventions to live well with your diagnosis. Our experience was no different; we were left with no hope, not knowing what was ahead. Despite my own past professional career as a nurse, I had little knowledge of dementia. I had no idea of the prognosis until I shared my fears with the mental health nurse who assured us that we would get a few good years of normal life. She was right; we did have many good years living with the diagnosis. However, if that had been explained at our diagnostic visit, I believe I would have coped better with the diagnosis. The benefits of having a diagnosis are many, including self-directed support, reduction in council tax, blue badge scheme, attendance allowance, and carer support plans. In addition, and importantly, anticipatory care planning involving the person diagnosed with dementia at a stage when important decisions can be made. Our experiences show that this only happens when the caregiver reaches a crisis point. (Myra)

I have had some mostly negative experiences with medical health professionals. Sometimes, once they know that you have dementia, they talk to your partner and do not talk to you. They make assumptions about you rather than ask you, and I have been in situations where I’m having a consultation and the doctor is talking to my partner and not talking to me. I now say, excuse me, but you’re talking about me, and I can understand everything you’re saying so please talk to me. Heather will say the same thing too now. (Chris)

Research suggests a split preference for how much information people would like to receive at diagnosis [45] and supports the tailoring of information to an individual’s coping style [46]. Recent research at the University of Edinburgh explored the experience of diagnosis during the COVID-19 pandemic. They found that it was important to allocate sufficient time to people when giving a diagnosis, giving space to tailor information needs. Further, healthcare professionals should show patience and compassion and prioritise helping people focus on doing the things that they love for as long as the can [47]. Post-diagnostic support that includes social participation, physical and mental health support, and opportunities to have a voice are all positive ways to support people with a diagnosis [48]. Partners in Research is one way we hope people living with dementia have opportunities to be heard. Co-authors have described writing this book and other Partners in Research opportunities as a social prescription to cope with dementia.

Martin’s Story

My first job was to polish smarties, we used to put Vaseline on them to make the polish. When I shared this with one of the co-production projects that I am a member of, we decided to make ‘The Smarties’ our group name. After the Smarties factory and a few other jobs, I became a benefits fraud officer.

When I was in my late 20s/early 30s, after my marriage broke down, I became an environmental activist. Somewhere there are photos of me chained to a bulldozer. But that was at the weekends, and in the week, I was the fraud officer, so I don’t think nowadays you’d get away with it. Both sides knew about the other, but the activists didn’t talk about benefits in front of me. The other benefits people got a great laugh about it, ‘what did you do last weekend Martin?!’

I don’t know if it’s because I went to a posh school or just my opinion, but I was always told to look at both sides of an argument. I had a breakdown over my role as a benefits officer, it was just not me. So, from there I went into the shop floor in care on minimum wage. My first job was an independent-living key worker with a young person. It was one of the best times of my life because I took him to the Canary Islands, Euro Disney, we went to see Robbie Williams, Meatloaf, etc. He was non-verbal, and nobody had really bothered to think about what he wanted, but it just came naturally to me. The first time we went to a concert, and he saw the marquee, he was not sure what it was. But the next time we went, he kind of danced with joy because he knew what was coming. There was a problem in that often I was not back by the end of my shift, but I just acknowledged that I did quite a lot of unpaid hours because it was worth it for his smiles to be honest and knowing that he was enjoying himself.

I then went to work in a council day centre, which was a day centre for learning disabilities and older adults. Before I started, I had a quick look at a few of the gent’s case histories, and all I did was sit around and chat with them and laugh. I remember the manager came in and said Martin, you’re supposed to be doing art. I said, OK, then and we just carried on laughing. After a while I got moved over on rotation back into a different service. That was on the Monday, but by the Thursday the gentlemen were in the office saying ‘if Martin isn’t back with us by Monday, we’re not coming in’. So, I was put back to the day centre. I was basically doing ‘life stories’ without realising it to be honest. For instance, I took them in a minibus to farms because they used to be farmers, so we went to where they worked or whatever to take photos. I realised from you guys [researchers] that I was essentially doing life stories.

I don’t think my daughter Fiona realises just how much of a rock she has been to me throughout the years. For 10 years I used to drive between York and Glenrothes to see her each month. She’s now got two lovely kids, who are 17 and 12 years old. We talk about once a week on Messenger. She is a carer who goes around people’s houses, so she deals with supporting people daily and has seen that end stage.

I knew my driving was usually very good, but I started to become very cautious, and I started to forget a few things at work. I was approximately 55 when this started. For some reason I was getting one-sided headaches or cluster headaches, and I was getting treated for that. One evening in 2016, I went back for an appointment, and they did the Montreal Test (MOCA). I still scored well (26 out of 30) which would be considered normal, but the infinity symbols were on either side of the page, instead of linked. So, the guy turned around and said ‘you have got dementia and you cannot drive anymore’ basically. I asked if that meant I couldn’t work anymore, and he said, you’ve got to see your GP. Luckily my wife was with me, we walked out to the waiting room but there was no one there to talk to, no leaflets to hand, we basically got sent home and that was it. However, by the time I got back to the car, I was jumping up and down in the seat because I saw it as, I could do what I wanted, when I wanted, if I wanted, rather than clock watch. I was telling Ethel, ‘Oh I’m happy’. At the time I was told it was frontotemporal. It was an older doctor who I doubt had heard of PCA to be honest, but it is pretty rare to be fair.

So, we got our affairs in order and moved back to Scotland because that is where we’re from. However, we did not realise what a steep change moving would be. We went and registered with a GP who said, ‘I’ll send you over to the consultant’. I was then sent a letter where the letterhead said ‘old age psychiatry’. When we saw that title on his letterhead, we had to laugh, as even now, I am of working age. I thought, ‘that’s not me at all’, but I went along, and the guy did a few tests. He said, ‘Well, you haven’t got frontotemporal dementia, so I’ll send you to the neurologist’, and I was given a Community Psychiatric Nurse (CPN). When the CPN first visited, she said that she was probably going to learn more from me than me from her. In this sense, I felt lucky, as she wanted to continue her visits six-weekly throughout my dementia journey, not stop after a year. She was a very nice person, so we benefited from her visits. The visits stopped once I had a neurologist, but I still receive excellent service.

The neurologist performed all the tests, and I was obviously fed up by this time. He said he wanted to do a lumbar puncture and I initially ‘stomped my feet’ because in England I was given six lumbar punctures in half an hour because I have scoliosis. Luckily, once I let them do the lumbar puncture, I didn’t feel a thing. We were given a form that said if we heard back within three days, then I have Creutzfeldt–Jakob disease (CJD). I didn’t, so that was okay, but what I did have was raised Tau levels. All my MRI scans were clear at the time, so although my symptoms were obvious, they were not shown on the scans. But the raised Tau confirmed it for the neurologist. He diagnosed PCA (posterior cortical atrophy) at that point, and he wanted to keep a hold of me because it’s very rare, and he wanted to see how I progressed. Pre-COVID-19, we went to the local NHS conference. He gave a speech with a lot of medical language. I then talked a bit about how dementia affects me, and then my wife Ethel talked about being a carer. She received a standing ovation. I did not. I still do not let her off with it!

I’m now on SIGN, which delivers the national treatment guidelines.

I’m gonna stop taking on work because I’m also on a working group that meets every fortnight looking at excellence in nursing care. The first meeting was all slightly too bureaucratic, so I told them that dignity or human rights are not an optional extra. I got worried because I was then asked to join a call about the meeting. It turned out that they were giving me a mentor and she’s going to speak to me after each meeting to see how I feel, and I check if I have got anything else to say. After the meeting, there was a huge e-mail conversation about ‘that public-facing representative who dared to speak up and was very good about the human rights, and they all admired him for it’.

I’m not a member of any national organisation because I don’t really want to be stuck in a silo. I want to talk to other people. I’m not that academic, or I wasn’t, but I get on well with all of you researchers. Then, COVID-19 happened, and I was sent for an MRI scan in the hospital car park. I went for more neuropsychological testing, which took three hours, and it turned out that I still had an IQ of 120. The woman was saying, ‘what’s going on here cause your physical symptoms are obviously all further down the line than your brain?’ We never really discussed it, but I went back to the neurologist, and he told me all this. It turns out that all the research and work I do is keeping the brain active. In that sense, research has been very good for me. He said he cannot ask why other people with my physical symptoms do something or how they feel. But he knows he can ask me. So basically, he is gonna see me every six months. I think for the duration.

My brother is an Oxbridge (Oxford and Cambridge University) Don and I get away with the fact I told him he was not human. Until he retired, I could not hold a conversation with him. I’m trying to teach him the benefits of co-research, but his subject does not lend itself well to co-production. However, he can see what it is doing for me, so he likes it for that reason if nothing else.

When I first started doing research, my wife Ethel would tell me I was doing too much, and I was getting tired. Then, I learned the signs of overdoing it, and she can see the benefit it has had. The Alzheimer’s Society had an IT session in the area, so we went along. It was a ‘foggy’ day for me, and there was a VR headset there. I was offered it and the whole room just stood back in amazement because the minute I put it on my body straightened and it was obvious that the fog had lifted. It really had lifted. When it came off, I was not quite buzzing, but I was certainly ‘with it’ rather than foggy, and that lasted a good few days.

I decided if it helps me, it should help others, so I did a sponsored simulated bike ride to London and back on an exercise bike to buy the local group a virtual reality (VR) headset. Nobody seems to understand why it is so effective, not even the neurologist understands it. But it works. I was given a VR headset that I could use on foggier days. To start with, I got hooked on it. Now I’m not so bad. From what I know, a lot of people with dementia who use headsets do things such as 3D paintings in the air. But that’s just nonsense to me. I use it to do things like visit where I went on holiday and things like that. So, no one truly understands how it is working, but it is. Apparently, they have tried it with other types of dementia, but it doesn’t seem to have the same impact. I think it is to do with PCA.

It sounds terrible, but I think COVID-19 was a lifesaver to me. Everyone suddenly realised MS Teams and Zoom existed. It was Agnes who told me that if I got registered visually impaired, then I could get a free rail pass. We received an appointment at the hospital with the consultant. It only took a few seconds to do it. I was then sent down the corridor to the Sensory Services. The consultant said, ‘Oh, I’ve got a strange one here, I’ve got a Terry Pratchett for you!’ Terry Pratchett had PCA too and called it an ‘embuggerance’, which is a great description. I sometimes wear a fedora (as can be seen in Fig. 3.4). The Sensory Service was a great example of the gold standard because I went into the room with this volunteer, and we had two hours discussing things like bins and all the other obstacles you might have when you’re blind. It would be ideal if this service was available for other people who are diagnosed.

We love dogs and I have a wee Dandy Dinmont called Judy. She is kind and lovely, and she knows when to come and be with me. We looked at having a dementia dog, but I didn’t like that it was the carer who is responsible for the dog. I thought I would think outside the box and see about a guide dog. I went through all the tests, and it was very strange because a woman had a guide dog harness on her arm, and I had to lead her around the streets. They agreed I was capable of it, and I was passed. Earlier this year I went down for a fortnight of training. I was teamed up with Dollar the guide dog, and we worked very well together. The staff themselves were very—and I don’t like the term but—dementia friendly. They made sure there was always a nice quiet, dark room for me to use. They made changes, so I got two half hours instead of one hour, etc. Adjusting the training came naturally to them, which I thought was good. They filmed Dollar and I working together so that they could show how people living with dementia could work with guide dogs.

After the two weeks, Dollar came home with me but within a couple of days Ethel’s lungs were blocked up. Dollar was a golden retriever, and they shed like nobody’s business. Therefore, unfortunately, Dollar had to go back. I’m now waiting for, ideally, a Labradoodle or maybe a Labrador. I would still have to go back and have two weeks training as that’s kind of the bonding part. It’s truly amazing how intelligent they are (Fig. 3.4).

Fig. 3.4

Martin wearing his ‘Terry Pratchett’ fedora

Getting the diagnosis allowed me to just do what I truly wanted to do, which is obviously research, and some work with the government, which goes back to my activism days, I think. I feel confident and able to fight against researchers who are being tokenistic. If that happens, I will send them an e-mail, but I will also send them a copy of The Smarties guidebook as a way of saying this is how it should be done. If it stays tokenistic, I will say to them, I’m sorry, I do not want to take part anymore. The diagnosis has also built my confidence in speaking to academics, I think. The diagnosis told me in no uncertain terms that time is limited. I think that is why I have dived so deep and hard into research to get as much done as I can. I’d like to think I have done something good.

Martin

Myra and Archie’s Story

We were looking forward to a long busy retirement, travelling, spending time with family. We wanted to spend more time in our island homes, which we had both left at an early age for the mainland, for further education and careers. It’s also where we met and married. Archie was an academic in physics and maths with a successful career in research and teaching. I had a long and varied career in nursing.

We were both proud parents and grandparents.

The day we received a diagnosis of Alzheimer’s disease will live with me forever. In that moment, our lives changed, and time stood still as I gazed at the amount of literature presented to me, stating ‘you will get a lot of information in these booklets’. All I could see were pictures of grey-haired old people holding hands. I thought, ‘is this what we have become?’ It was traumatising, worse than the diagnosis I knew was coming. These images stayed with me for such a long time, as a young person I could not relate to them, and I could not see Archie in that way either. I aged 10 years, just staring at these images.

My first campaign was to get changes to information leaflets and make them more appropriate, diverse, and inclusive. I tried very hard to get that message across by joining online groups and organisations who published dementia patient information. I was listened to, and it made a little bit of difference, but not enough, there is more work to be done.

We need to have information that is relevant to the type of dementia you are diagnosed with, and the contact details of professionals who can help. No one needs a handful of literature straight after receiving a life-changing diagnosis. Your emotions are all over the place. You need simple, accurate, relevant information that is disease-specific and gives you information on treatments, clinical or palliative, and ways to cope with a long-term condition.

Archie retired early, I could never understand why, but he knew something was wrong and he kept stating he had ‘something wrong with his head’. I saw changes, but thought he was becoming depressed at the thought of retiring. He made frequent visits to his GP, who always reassured him following memory testing that his memory was ok. For the duration of the illness, short-term memory was preserved, but long-term memory was declining.

I retired to be with him, thinking he was depressed, but I soon began to recognise difficulties that could be due to an underlying medical cause. I was not sure what. It was when he had a memory test in my presence, I realised he could not answer any of the questions, as he could not understand what was being asked. He felt extremely inadequate with very low self-esteem following memory testing. I felt it served no purpose in identifying Archies’ condition and with no treatment, why subject him to memory testing? So, we agreed that it would stop.

I wasn’t convinced it was Alzheimer’s disease I thought he had a brain tumour. As his carer, I felt clinicians never took heed of me or my observations. Archie was later diagnosed with semantic dementia after four years of my research and search for answers. The second diagnosis of semantic dementia was so much worse than the first diagnosis of Alzheimer’s. We were living with a much more progressive dementia. Archie accepted it, but I soon realised that he was not fully comprehending what it meant.

We made the best of our lives, but we had to make big adjustments. We planned for our future together while we could and travelled as much as possible. There was always a story, but we managed with support from family. I did feel the stigma. We lost good friends, who found it too hard not being able to communicate with Archie as they had in the past. But we made new friends who gave us such support. Archie struggled so much to communicate and understand the world around him. He couldn’t have lived his life so well without me or our family.

We were offered help by Alzheimer Scotland, but Archie could not participate in group activity or socialising with peers. He was so much better in a one-to-one situation, and I can understand why. Communication was an ongoing struggle. The support helped me as I got actively involved during my time while caring, researching, and joining peer groups. I eventually joined the National Dementia Carers Action Network, which opened many doors for me to get my voice heard. I was passionate about getting change and raising awareness of early-onset rare dementia. I do believe my voice was heard, it was certainly loud enough, and we got some change. Other factors helped, especially as dementia became a priority for the Scottish government, leading to dementia strategies. I had an active role as a carer in many of the strategy groups.

It was my greatest desire that I would stay healthy and able to care for Archie at home, as going into care was not an option. I put structures in place in case anything happened to me. I did all I could, but when it came to negotiating anticipatory care plans and the benefits we were entitled to with health and social care, it was a different matter. I reached a crisis point due to overwhelming tiredness and the need for more clinical interventions towards the end of Archie’s illness. We received a reactive response from health and social care; it was like a tsunami of professionals and equipment coming through the door. It was fraught with difficulty for me, I was finally being listened to, but it all added to my stress. It could have been avoided if the right community structures were in place in a more planned way, rather than a reactive crisis response.

Again, the carer’s voice was not heard, I was never a partner in care! Yet, I cared for Archie throughout his illness of seven years with very little health and social care input or support. I also recognise I could only have done this because of my professional nursing knowledge, community experience, good health, and family support. In addition, Archie had no other medical conditions other than semantic dementia, which we managed together as we understood his illness through our own research.

Having lived with dementia as well as being an unpaid carer has given me insights into an illness that is manageable with the right support, targeted therapeutic interventions, and good holistic care, but the interventions must come early in the disease.

A timely accurate diagnosis is so important to achieve good outcomes. I am now using my experiences, knowledge, and passion for change to help others.

Myra

Agnes’ Story

Agnes is a bit of a celebrity in dementia activism and was awarded an MBE in 2015 for her services to dementia. Agnes was diagnosed with Alzheimer’s disease at 57 years old. She has worked tirelessly for many years to help others learn more about the lived experience of dementia.

I went for a second diagnosis because people don’t think I look like I have dementia, and if you’re told that enough you doubt it.

She has since done a lot of work focused on sensory issues that people living with dementia can face and the importance of seeing more than just memory.

Over the past year, Agnes has faced a series of difficult circumstances within her personal life. Her son-in-law passed away due to motor neurone disease. This was sadly followed by the passing of her husband. Agnes had been caring for her husband who had dementia, while coping with her own diagnosis. Shortly before his passing, he was moved to hospice care due to the progression of cancer.

To reduce the amount of work Agnes was being asked to do, I [Rosie] offered to write some of Agnes’ story for the book to go alongside the various extracts Agnes has provided within the other chapters. I hope that in doing so, I can do justice to some of the many reasons people love working with Agnes.

Agnes has always been very generous with her time and sharing her story of living with dementia, as well as noting the additional challenges faced by being a carer. She shared how the different visibility of her husband’s dementia resulted in him being at more risk.

My husband is totally vulnerable but doesn’t look like he’s got anything wrong with him, which makes him at high risk. Things like losing his way, he would be lost for hours because he wouldn’t think to ask someone for help.

I have worked with Agnes on several projects, including Dementia Enquirers, Ecredibles, and Partners in Research, which are discussed in more detail in Chap. 5. Agnes became Chair of the Scottish Dementia Working Group (SDWG) in 2010, a group of people with lived experience looking to draw attention to the lived experience of people with dementia and challenge assumptions that people have about the condition. As part of their research agenda, the SDWG asked researchers who wished to work with them to provide accessible summaries about their work. Researchers also needed to clearly show how they would adhere to the group’s core principles and what the benefits of involvement would be for people with lived experience.

As part of self-directed support, Agnes is aided by a personal assistant who makes it possible for Agnes to attend a variety of meetings and events internationally. Her personal assistant takes responsibility for a range of organisational tasks, which leaves Agnes with more capacity to be involved. Importantly, it shows that people’s ability to get involved is not black and white but often dependent on what other conflicting demands they have going on at the same time.

One of the many reasons Agnes is so vital to Partners in Research is due to her background in nursing, as well her experience over the last 15 years of the dementia landscape. Agnes is always keen to know how researchers and organisations will move forward, instead of ‘reinventing the wheel’. Her background also means that Agnes can reflect on why things may be the way they are,

I don’t think professionals are deliberately trying to make things difficult. I think it is maybe a learned response. A nurse on the ward trying to take that extra time with a person living with dementia may also have superiors telling them off for wasting time. When I worked on the wards, I used to get sent on a task but then stop to help someone. When I got to my destination, I would be told off. I had one job and one job only; it wasn’t a reflection on the patient, but I was being told it wasn’t my responsibility. I disagree, I think everybody in the hospital is my responsibility as a human being, but you have that knocked out of you. It becomes a learned response that you should only focus on the task you’ve been given. There is also not enough support to staff taking on that additional emotional load.

One of Agnes’ frustrations to share with those in a position to change practice is that unlike many other conditions, dementia is not given the multidisciplinary approach that other disease areas are. Most of the time, it is focused only on older adult psychiatry. However, over the course of her dementia, Agnes would have benefitted from a more connected approach to the care that she needed.

Why in the dementia world do you not have a team of doctors? It would mean you see different specialties as and when you need them.

Agnes’ experiences of ‘brain blindness’ and ‘brain deafness’ are important lessons in the atypical aspects of Alzheimer’s disease. They refer to vision and hearing changes that cannot be fixed by hearing aids or glasses, as it is to do with how the brain interprets sound and images, as opposed to issues with the eyes or ears.

Among the co-authors there has been a lot of discussion about which professionals should be involved in the care of people living with dementia. There is a consensus that neurology would be helpful; however, Agnes adds that this may not be the fix people expect,

I’ve heard a lot of people who’ve been referred to neurologists and they’ve had a very negative experience, so I think it less about their role and more about who the person is and how they treat you.

Agnes reminds us that people with dementia are just ‘ordinary people living ordinary lives’, and as such, their experiences with dementia need to be considered in the context of other comorbidities, family circumstances, financial support, etc.

Below are links to some of the resources that Agnes has created for people with lived experience.

Finally, thank you to Agnes for trusting me to share her story.

Useful Resources:

• Houston, A. (2015). Dementia & sensory challenges: Dementia can be more than memory. Life changes trust. https://www.lifechangestrust.org.uk/sites/default/files/Leaflet.pdf

• Houston, A. (n.d.). Sensory changes and dementia- sense of taste and smell. Life changes trust. https://www.lifechangestrust.org.uk/sites/default/files/publication/files/Sensory-Changes-and-Dementia-Booklet-Final.pdf

• Houston, A. (2016). Think dementia, think sensory. Winston Churchill Memorial Trust. https://www.ed.ac.uk/sites/default/files/atoms/files/houston_a_report_2016_final.pdf