Tom Shakespeare

Nobody would doubt that dementia is debilitating.  This constellation of incurable diseases causes people to lose abilities which require concentration and planning.   Their personality may change.  People may develop depression and confusion.  We are all familiar with this dominant representation of dementia, and frightened out of our wits by it.

Dementia is a disease, but it’s also a social experience.  People with dementia are disabled people, alongside the eight million other disabled people in UK.   I think approaching dementia as a disability could be helpful to everyone.

In the last few decades, we have seen wheelchair users, and blind people and Deaf people and people with learning difficulties and other impairment groups unite to demand a better deal from a government, and more acceptance from society.  Disability is now seen not just as a health condition, but as a matter of equal opportunities and inclusion.  But when it comes to dementia, we are still thinking in terms of disease and tragedy and passivity.

This can be seen in our language.  Words like ‘burden’ or ‘demographic time-bomb’ or ‘suffering’ or ‘victims’ serve to pathologise people with dementia.  It’s as if they have a double difficulty – not just as people who have a nasty disease, but also subject to the fear, ignorance and negativity of the rest of us.   The psychologist Steve Sabat calls this ‘malignant positioning’.

If we were to begin thinking of dementia as a disability rights issue, what would be the implications?    I think we need to consider the ways in which society disables people with dementia.  How do attitudes, environments, and policies make life harder for people with dementia and those who care for them?    The world has become more complex, in ways that must make it difficult for people with dementia to engage with services in the public and private sector.  Technologies like mobile phones and internet banking are increasingly confusing, demanding passwords and interactions that may disable people with cognitive impairments.

How many residential institutions treat people with dementia with respect and dignity? How many people with dementia are victims of neglect, violence and abuse?   We know there are abuses in the UK.   In a world where austerity dominates, it may not seem a priority to some hard-pressed local authorities to ensure that people with dementia enjoy the best standard of care.  Worldwide, there are some appalling human rights violations against people who cannot speak up for themselves, and have nobody to speak for them.  Some people with dementia are simply drugged into submission.  The OECD has concluded that dementia receives ‘the worst quality of care in the developed world’.

We need to reform our language, too.  Even a phrase like ‘dementia friendly’, which sounds positive, could be considered patronizing and inappropriate.  The implication is that the solution is for people without dementia to be kind and considerate and welcoming of people with dementia.  But if part of the problem is socially-imposed barriers and even human rights violations, then the term ‘friendly’ might be judged an inappropriate response which we would not use for other minorities.    Why don’t we talk about rights?   Rather than ‘dementia friendly’ communities, we need ‘dementia enabling communities’.  We don’t just need ‘dementia friends’, we need ‘dementia allies’.

Once we see how social contexts are often oppressive to people with dementia, perhaps we can begin to understand how some of the behaviours of people with the condition might be a reaction both to having a severe degenerative disease, but also to being infantilized and disempowered.   Dementia advocate Kate Swaffer talks about ‘prescribed disengagement’, the way that as soon as someone gets a diagnosis, they are advised to stop work, hand in their driving licence, and prepare for an early death.  Once someone has the disease, like a medieval leper, they may be shunned by friends and colleagues.  Family members struggle to cope, without adequate support.

If we reformed the way we treated people, their environment, perhaps they would maintain functioning for longer. If we promoted joint decision making rather than substitute decision making, we would do better at ascertaining the will and preference of people with dementia.  Advance care planning can mean that even with advanced dementia, the wishes of the individual are being considered.

In law, dementia is already covered by disability discrimination legislation.  At the domestic level that means the Equality Act, and at the international level the equivalent is the Convention on the Rights of Persons with Disabilities.  Both these laws talk about reasonable adaptations that can be made to ensure that people with dementia or other disabilities are included, not excluded.  How can we make public services more enabling for people with dementia, and their families, to reduce anxiety and agitation.  A quarter of people in hospital have dementia: what are we doing to make their experiences easier?

If dementia is a human rights issue, where are the dementia rights activists?  Everyone remembers the writer Terry Pratchett, author of the Disc World Novels, who campaigned for more medical research and more respect for people with Alzheimer’s and other conditions.   But Terry Pratchett was unusual in living for eight years with the disease.  Many people do not have many lucid months between getting the first diagnosis, and losing cognitive powers that permit self-advocacy.     It has generally been thought that people survive for four to five years after diagnosis.

But Pratchett is not a lone voice.   The Scottish Dementia Working Group and the Dementia Engagement and Empowerment Project have demonstrated how those with dementia can effectively unite and advocate.   Dementia Alliance International are a global coalition of people with a dementia diagnosis who have been trying to get the UN, the WHO and others to accept that the Convention on the Rights of Persons with Disabilities applies to them, too.   There is growing evidence that people can live much longer with diagnosis than was previously thought, particularly where they have mild forms of dementia.  Because people are getting their diagnoses earlier, they are living longer with dementia, and their voice is getting stronger.   We need to listen to those voices.    So here I want to acknowledge the input of my colleague Peter Mittler, a retired special education professor diagnosed with dementia, who has contributed to what I am saying today.

There are lots of positive interventions with people with dementia.  It’s not just a matter of drugs and locked wards.  For example, there is a wealth of arts work with people, ranging from reminiscence work and music, to poetry and dancing.  In these ways, the individuality of people with dementia is brought to the fore, and patients can have more genuine and rewarding interactions with family and staff members. Interventions like this are showing how it is possible to live well with dementia.  The more we develop effective responses, the less we will have to fear a condition which will affect one in three of us in our later years.

Disabled people are all different.   Many people with impairments or illnesses do not even identify as disabled.  No doubt some people with dementia won’t like the idea of being labelled disabled.   If you’ve got one stigmatized identity already, you aren’t necessarily going to welcome another.    But it may help to realize that dementia is a disability. It may help us change our attitudes and our policies, when we realize that the 800 thousand people with dementia in UK, and the 50 million worldwide, have human rights which should be respected.   By working together, perhaps everyone’s life can be improved.  In recent years, the Mental Health Foundation and the Joseph Rowntree Foundation have each published reports arguing that the world of dementia has much to learn from what has been achieved by the disability rights movement.

I am not sure it will ever make sense to talk of Dementia Pride. It will never be easy to have dementia – or Motor Neurone disease or Parkinson’s, for that matter.  We cannot create a world in which dementia is an irrelevant difference.  But we can build a world in which it is possible to live better with these conditions.   We are too inclined to write people off, once they have a diagnosis.    When we do that, it is we who have the memory problem, because we have forgotten that people with dementia are human beings, with rights and dignity to the last.