Thinking differently about dementia

Robin Williams’ widow revealed last week that the actor was developing a type of dementia before he died. Much of the media coverage has focussed on the despair which often surrounds the disease. Tom Dening, Professor of Dementia Research, spoke to us about thinking differently about dementia.

Developing dementia is dreaded more than any other medical condition, at least by people of middle age and upwards. People often say that they would rather be dead than live like that. Last week the media featured the story of Robin Williams, who was developing dementia with Lewy bodies and took his own life the week before he was due to be admitted for further medical investigations. Given that one in three of us is likely to develop dementia before we die, this is sobering stuff.

In fact, most people with dementia 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.

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.

If you’ve been affected by the issues in this blog and would like to speak to someone, call Samaritans on 116 123 (UK).