Students of existential philosophy will be familiar with Jean-Paul Sartre’s pronouncement that “existence precedes essence”: you can’t reduce the infinitely complex, unique qualities of an individual (a human existence) to some crude stereotype, like the “white van man” of our popular journalism. Yet this is how we often think of people living with – or, as it is too often put, “suffering from” – dementia. Like a white-label product, the individual becomes the generic victim of the latest taboo disease: dementia seems to have taken over from cancer as the common, but uncommonly feared, medical spectre haunting our lives.
In that there is no cure for dementia, and that the underlying diseases are progressive, our fear is understandable. But it is possible to live well with dementia, and that possibility is massively increased if those of us – an estimated 22 million, over one third of the UK population – who have some connection with a person with the condition do not succumb to the temptation to shrug our shoulders and say “what can you do?” Is it worth visiting a friend or relative who doesn’t seem to know who you are, can’t say anything, or might even seem hostile?
While memory loss is very common in most forms of dementia, how and when it affects an individual is far from uniform. Recent events may be beyond recall almost immediately (my own mother’s memory for this type of information is down to about five seconds) but more distant facts and faces may remain (she can sometimes name people in photographs from 70 years ago). More importantly, our “emotional memory” often seems to persist long after mere facts have faded: your apparently futile attempts to connect with a loved one may linger in his or her memory as the feeling of a smile or hug – and if it doesn’t last, so what? Many of us aspire to “living in the moment”, judging by the popularity of mindfulness courses, and perhaps that is a goal within the reach of many people living with dementia who are less preoccupied with the past or the future.
It is not just the 35% of the population who know someone living with dementia who can improve lives. Staff in shops, museums, transport services; employers whose employees may be carers, or may themselves be experiencing the early stages of dementia; passers-by in the street: in short, all of us can help to make our communities more dementia-friendly. What will this mean to the experience of people living with dementia? The National Dementia Action Alliance was formed in 2010, launching the National Dementia Declaration – statements of seven outcomes people with dementia and their family carers said they wanted:
- I have personal choice and control or influence over decisions about me
- I know that services are designed around me and my needs
- I have support that helps me live my life
- I have the knowledge and know-how to get what I need
- I live in an enabling and supportive environment where I feel valued and understood
- I have a sense of belonging and of being a valued part of family, community and civic life
- I know there is research going on which delivers a better life for me now and hope for the future
Most Knowledge Quarter members are based in the London Borough of Camden and have the opportunity to join the Camden Dementia Action Alliance (several already have) which is dedicated to transforming the lives of people with dementia, and their carers, for the better. The Alliance is funded by the London Borough of Camden and is free to join. Members commit to three actions, which can be anything from running dementia-friendly museum or library tours, to giving employees the chance to become Dementia Friends by attending a 45 minute information session, to – in one case – inventing a new Chinese term for people with dementia, replacing the existing, harsh words: an initiative with potentially global significance in tackling the stigma and misunderstanding that still surrounds dementia in some communities.
In these and many other ways we are celebrating the ultimate in diversity and inclusion – individual existence.
Mark Goodwin is Coordinator of the Camden Dementia Action Alliance. For more information about membership and activities contact firstname.lastname@example.org.
Photos of people living with dementia: Alzheimer’s Society