There is no way of knowing within a reasonable margin of error whether a person without symptoms will develop dementia of any kind. Yet I think if there were a reliable diagnostic tool I would want to know my risk, simply so that I could adjust my planning for my latter years. Until then I err on the side of caution and assume that I probably do already have some of the pathology and it is fairly likely that this will become a significant problem before I die. The inescapable reality is that the longer we live the more likely we are to develop dementia. Recently I went online to find out how much long the actuaries think I will live. One website said 98, the other 106. For those of us who are predicted to live to be over 90, the probability of having dementia is one in three. In addition to investing heavily in dentistry, saving for hip replacements and considering botox, it makes sense to prepare for dementia in old age.
But even if I do not develop dementia, chances are that someone close to me – a parent, grandparent, in law, spouse or sibling, will experience the disorder. Because people are living longer, the numbers diagnosed with dementia are growing. For every patient there is a network, large or small, of family and friends who are also affected by the diagnosis. Their reactions will be crucial to the way a person confronts dementia, and collectively, creating an environment of acceptance and inclusion for people with dementia is in all our interests. As a social scientist I am fascinated by the way that dementia is changing society. It is forcing us to reappraise old age, and to reconsider what we want for ourselves. On reflection I think that there are some reasons to be cheerful about dementia. These come down to four things: fascinating science, thriving technology, amazing art and a deeper understanding of what makes us human.
First, there are many unresolved questions about all aspects of dementia, and that makes it an exciting field for scientific enterprise. Causes are not all understood and potential cures are a distant hope. It’s no co-incidence that new scientific findings concerning dementia are frequently in the headlines. The scientific ferment about dementia is intense. Neuroimaging and sophisticated microscopes are enabling us to map the building blocks of our nervous system, while genomics is unravelling the programming in our cells that drives development and ageing.
Then there is technology, which has every incentive to find innovations that will make life easier for people with dementia and their carers. Pervasive computing or the Internet of Things means that we can adapt everyday objects to the particular needs of their user, so that we need not rely entirely on memory. Of course not all technological innovation is driven by dementia but its growing prevalence – and also the motivation that it generates to help the people affected - have compelled us to look critically at our environment, and to explore how this can be made more ‘dementia-friendly’. In terms of technology and environmental improvements, what is good for people with dementia is good for people.
Thirdly, dementia is a source of great art, both art about dementia and art created by people with dementia. One particular artist is held up as an example of living well with dementia – the style of painter William Utermohlen was transformed by dementia. His series of self-portraits illustrates how it affected his faculties over time, and teaches the viewer more about dementia than any textbook. Many works of literature, poems and films have been inspired or at least informed by the profound questions raised by dementia about identity, loss and the meaning of life. Art forms which bypass the use of language, such as music and dance, speak directly to our emotions and have the power to transport us to another place and time irrespective of cognitive impairment. Visual art and sculpture can make us curious and involve us in relating to the world in new and unexpected ways.
We are all equals in the process of engaging with art, whether or not we have dementia. The arts can also be a satisfying communal activity – again, one that does not rely on conventional language capability. The work of art becomes a focus for carer and cared-for to share, a reference-point and a means to build bridges. As I prepare for my old age, to insure against problems arising from memory loss, my plan is to seek out art centres – preferably with nice cafes. There I will find a stimulating environment in which to utilise all the physical capacity and skills that I manage to retain, while learning new forms of self-expression through the arts.
Finally, in addition to the wonderful science, the innovative technology and the great art that dementia inspires, I think that it also teaches us more about the essence of being human. When we spend time with people with dementia, we are led to the conclusion that cognition, intellect or even conversation are not necessary to give a person value. The fourth reason to be cheerful about dementia is that engaging with dementia teaches us to become better at relating to other human beings and encourages us to create a more compassionate society.
This summer I had a wonderful opportunity to undergo a short placement at the Centre for Dementia at the Institute of Mental Health at The University of Nottingham. During this placement, I was tasked with a small research project to develop an information sheet for a seminar on the ‘Aspects of Online Life for People with Dementia’. This aimed to assess how people with dementia are aided online, as well as looking for solutions to the problems that their condition might create, e.g. increased susceptibility to fraud.
In a modern society, many aspects of everyday life such as shopping and banking are accessed through the internet, however it can be argued that the design of some websites in activities such as booking a train ticket, might not suit the needs of some people with dementia. During the course of my research it quickly became clear that this topic is consistently approached from the perspective of improving interface design or by using assistive technology as opposed to improving accessibility for people with dementia. Various articles suggest that elderly people use technology and are consistently becoming more active on the internet, however, I personally believe there is still a general stigma associating elderly people/people with dementia with technological incompetence. If this is true, this might suggest that companies are less likely to consider their needs when developing new products or constructing websites.
I was not surprised by the lack of literature on dementia-friendly online life as this idea is not publicly discussed; most of online life has only really become prominent in the last few decades. Perhaps many can identify with me because truthfully the idea of online life that is catered specifically to the needs of people with dementia and/or elderly people had never occurred to me to be a social issue.
Growing up in a generation in which major improvements in technology and online accessibility occur daily and are integrated into society, I feel it is easy to – incorrectly – associate technology with youthfulness. Consequently, this topic might seem like a foreign concept. Unfortunately, this does not then allow opportunities for people with dementia to be involved in this common aspect of society, and hence, this may promote feelings of isolation.
As such, I write this for those who rely upon family and carers for their health and for people with dementia who fear for their safety, to remind people that dementia is a condition associated with cognitive deterioration. Therefore, improving online life would not only increase accessibility to various facilities, but might also promote a better quality of life by decreasing feelings of social isolation for people with dementia who are unable to physically visit friends and relatives. This would be a great step in promoting independence and, as a result, both people with dementia and carers alike might then benefit from this.
I urge you to look beyond the literature; the lack of relevant research might suggest that this concept seems less important compared to improvements in healthcare. However, one thing is clear: we need to integrate elderly people/people with dementia into this ever-evolving world of technology. It is my hope that as dementia research progresses, technological ignorance and isolation in this regard will become a thing of the past.
Apathy is a curious thing. It has various definitions, most of which have two components – one to do with lack of interest, concern, enthusiasm, and the other to do with lack of emotion.
Is it a mental state, that is, is it something that we feel inside? Yes, I think we all describe ourselves as feeling apathetic at times. But isn’t it also a behaviour? We can see people with blank expressions on their faces, not reacting to the environment, clearly not concerned to be doing anything much. Shrugging the shoulders is one way of showing we don’t give a monkey’s about it really. Then there are social forms of apathy, e.g. if voters don’t show up on polling day, that’s political apathy.
Apathy is associated with several mental disorders. The obvious association is with depression, where the person may certainly feel apathetic and unmotivated to do anything. They may also look apathetic and indifferent. Sometimes the feeling of apathy is greater than the sense of low mood or sadness. Apathy is also a common feature in schizophrenia especially when the condition has been present for some years. It often goes with a lack of emotion and a tendency to become withdrawn and lacking in spontaneity.
You might ask what sort of disorder apathy is. Is it a mood problem? Is it a motor problem (i.e. is the core of it about decreased movement)? Or maybe it is a disorder of the will? Which raises the question as to what is meant by the will anyway. Modern neuroscience largely sidesteps this nasty question by talking about executive functioning, which is seen as a function of the frontal lobes of the brain and the underlying neural circuits.
Apathy can also be a feature of dementia. Indeed, it is one of the so-called Behavioural and Psychological Symptoms of Dementia (BPSD) and it is one of the items of the Neuropsychiatric Inventory (NPI), which is the main instrument used worldwide to measure BPSD. In the NPI, it is defined as diminished motivation not attributable to decreased level of consciousness, cognitive impairment, or emotional distress. So the NPI appears to see it as a disorder of the will.
What does apathy look like in dementia? Often folk just stop doing what they used to do, be it growing vegetables, painting pictures or going out to the pub. This can be perplexing to those around them – there is no obvious reason why they’ve stopped, they just don’t do it any more. If cajoled, they may start again, but only for a while and then they grind to a halt. If things get worse, they may simply sit in a chair all day, doing and saying nothing. You might think that, compared to be agitated and restless, this would be relatively easy to deal with but not so. It drives carers nuts. ‘He could do jigsaws/play the piano/read a book, but he just won’t!’ Often the carers blame themselves for this state arising, and certainly they can get very frustrated. So the nature of apathy needs to be explained to prevent this cycle of frustration and recrimination.
However, apathy is interesting for research too. Some of the work that Rianne van der Linde, a PhD student, has been doing has shown how apathy is an important symptom and also a strange entity. Some of our findings are yet to be published, but it’s already been shown by other researchers that it isn’t the same thing as depression and it seems to be related with worse cognitive impairment. You can measure it using the Lille Apathy Rating Scale, which has 33 items with 9 headings. These reduce to 4 factors: intellectual curiosity, emotion, action initiation, and self-awareness. Maybe apathy is a marker for global decline, for physical illness, or for something else. Any thoughts out there? Wake up, Apathy merits more attention!
Many years ago, before we had any idea of what our own fate might be, we were slightly acquainted with a man and his wife, a very quiet couple, who regularly attended the same church as us. We began to see a gradual, then marked, changed in the wife's look and demeanour, and it dawned on me one day that I had not seen themat all for quite a while, I made enquiries, and learned that she, J, was in the throes of Alzheimers, and could not/would not ever sit down, but just walked in endless circles round the house. It was not safe for her to be left alone, so husband, F, never left the house, except when his son was able to get up from south of the country. A neighbour was doing errands for him, but he was a prisoner in his own home.
We found out where they lived, knocked on the door, and asked F if he would like us to sit withJ one Sunday, so that he could get to the service.
F just broke down and sobbed. This set us off, so the three of us stood in a puddle of tears on his doorstep, all unable to speak, but F's nods conveyed that our offer was accepted!
As we got to know F,we learned that he, now old and tired, and J (MBE!), now frail and lost, were people of great intellect. We also learned that F had enjoyed playing bowls at his local club, and so asked him if he would like us to sit for a couple of hours a week so that he could have a game.
More tears, more nods!
J died a merciful and peaceful death, and F died shortly afterwards. (Broken heart? Will we ever know?) At his funeral, I learned from an out of area relative, who had phoned him every week, that F told him constantly that it was only looking forward to these outings which “kept him going”.
Such a small effort on our part, yet seemingly it made such a difference to him.
Could you make a difference to anyone you know? Why not try it? (With us if you like!)
Developing dementia is dreaded more than any other medical condition, at least by people of middle age and upwards. It’s often said in conversation that we would rather be dead than live like that. This week the media has featured the story of Robin Williams, who was developing dementia with Lewy bodies and killed himself the week before he was due to be admitted for further medical investigations. This is sobering stuff. Given that one in three of us is likely to develop dementia before we die, perhaps there is going to be an epidemic of suicide?
In fact, most people with dementia do not kill themselves but die of natural causes, most of them well into old age. We do know that there is an increased risk of suicide or self harm around the time of diagnosis. Although the commonest early symptom of dementia is memory loss, there are other changes, including in mood and perceptions, and before the person receives a diagnosis these can be worrying or even frightening as the person and their family may not understand what is happening.
The commonest cause of dementia is Alzheimer’s disease and it tends to present with memory problems and difficulty with language, for example finding the right words for things. Other forms of dementia affect the brain differently and may cause other problems. Dementia with Lewy bodies (often known as DLB) is an example. DLB is a bit like having a mixture of Alzheimer’s disease and Parkinson’s disease, so as well as memory problems there are also difficulties with movement, gait and balance. As well as this, DLB has other distinct features of its own. It has a tendency to fluctuate so that at times a person can be quite confused and then shortly afterwards lucid. People often experience visual hallucinations, for example seeing other people in the room, but they also have other problems perceiving where objects are in space. If you combine all of these features, they can be quite bewildering – especially if you don’t have a diagnosis. In which case, you are just likely to think that you are going stir crazy. Perhaps this is how it felt for Robin Williams.
However, dementia is not alone among medical conditions in having no cure, so simply to counsel despair is not good enough. What can we do to help?
First of all, we need to reduce stigma around dementia and encourage everyone to talk about it. Second, we need to encourage people to seek help if they are worried. People who are hiding their symptoms are at far more risk than those who seek help. Then we need to make a proper diagnosis, doing whatever tests and investigations are needed to make this as clear as possible. We then have to give people a good explanation as to why they are having the experiences that they do (e.g. you have difficulty in finding words not because you are stupid but because this part of your brain is not working properly). They need time to absorb the information and to ask questions, as do their families.
Beyond this, we need to discuss how dementia is more like a disability than an illness – like, say, arthritis, it doesn’t get worse from day to day but only very slowly. Most of the time, a person with dementia feels well and feels like their normal self. They can enjoy things, and look forward to pleasurable events, even if they may need reminding. They can be transfixed by emotional or artistic experiences. They can still contribute to their role as a parent or grandparent and as a source of family history. We need to hang on to all of this and celebrate it. Difficult though it often is, we need to walk alongside people on the road of dementia, holding hands when needed and learning from their experiences as well as offering our support. By this approach we can prevent many people from feeling lonely, isolated and desperate with their condition.
In the summer of 2013 Nottingham University’s Lakeside Theatre staged a new play, Inside Out of Mind*, written and directed by Tanya Myers.
There are at least 3 stories to tell here. One is the story in the play itself but there’s also the story of how the play came about and another story about how the play was put on. Then are there are the individual stories of people who came to see it and how it affected them, and finally there is a story not yet told about what happens next and how the play can be taken elsewhere for new people to see it.
‘The play’s the thing...’ It’s about dementia. Specifically, it is about a group of people with dementia on a hospital ward, the Ward With No Name, and the staff, mainly healthcare assistants, who look after them. In keeping with the confused world of people with dementia, the action is semi-realistic and there is often an other-worldly quality to the music and the staging. The actors switch between staff and patient roles, which I think reminds us of how we may all pass through this scene ourselves in the future. The only character who does not is a former scientist called Gabriel Proust. He speaks at the beginning but thereafter is mute. He shambles around collecting keys, biscuits, pillows, pairs of scissors and the like. Eventually he absconds but only to return with a bunch of roses for the sweet young girl who is working on the ward as a researcher as well as a nursing aide. And that’s about it as far as plot goes. But the play is more about states of mind and the reactions of the staff to those they care for. These are authentic – not all good, often quite stressed, and with different ways of coping, of which a spiritual approach seems as effective as any.
What’s unique though is how the play came about. It arose from research on a dementia ward in Nottingham. The research, led by Professor Justine Schneider, was looking at the work of healthcare assistants in this setting and how they deal with the challenges of caring for people with severe dementia and unpredictable behaviour. Some of our experts will be able to comment further on this work. However, an important aspect was a series of interviews and observations with staff, relatives and patients about life on the ward. This material was transcribed and it is from this huge pile of paper that Tanya assembled the script for the play. In other words, nothing in the play wasn’t said by somebody in real life.
The third story is that the researchers (my colleague Prof Justine Schneider led this) arranged for the local health employers to send all of their health care support workers to daytime performances of the play followed by workshops to discuss what they had just seen. This was an enterprise of military proportions, about 200 staff each day, with a marquee and enough chicken Caesar salad to feed a Roman legion. Many of the staff attending weren’t sure what they had let themselves in for but in general the responses were very positive. It was clear that most of them had had no training in relating to people with dementia and many were extremely moved emotionally too.
It’s not just what you know about dementia, it’s also where your heart is that matters. Drama gets behind the facts and provides other ways of looking at this human predicament that we call dementia.
*For more information about Inside Out of Mind, including clips from the production, please visit the following webpage: http://www.insideoutofmind.co.uk
