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Reasons to be cheerful
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.
Justine Schneider
Professor of Mental Health & Social CareFaculty of Social Sciences
University of Nottingham
Justine has extensive experience in many aspects of applied health research using a wide range of methodologies and approaches. She has particular expertise in mental health service evaluation, carers, care homes, costs and supported employment. Her current work focuses primarily on dementia and staff development, and she is exploring innovative approaches to knowledge exchange in dementia care.