Many people find it hard to think of their dementia as a disability, and are understandably reluctant to take on another ‘label’ (the label dementia itself is not much-loved!). But the fact is that dementia is counted as a disability by the Equality Act 2010 and by UNCRPD, as it causes “long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.” Using this legal definition to claim rights can be very effective – as has been shown by another group, people with mental health difficulties (who don’t consider themselves as disabled either!) The word ‘disability’ should not therefore be seen as a stigmatising label imposed upon individuals. It is just a means to an end, a tool.
Framing dementia as a disability also highlights the extent to which people with this condition are discriminated against. In our experience this is very common, and often arguably even more common than for those with other conditions or disabilities. They tell us that they have not been given a diagnosis because the clinician doesn’t think they should know, or thinks there is nothing s/he can help with. Or that they have been given their diagnosis, but in such a negative way that they feel they have been told they should simply go home and prepare to die. They tell us that they have not been given any post-diagnostic support or told about entitlements, peer support and other services. Or that they have found that information is often not in a format accessible to them e.g. too complex or only online.
People with dementia tell us they have not been offered rehabilitation, counselling or help to adapt to their condition. That they have been pressured into leaving work when diagnosed with dementia, without an assessment – yet been denied exemption from the ‘Work Capability Assessment’ process. They tell us that (if they do get services at all), these have been means-tested because these are defined as social not health care – even though they have a physical brain disease. They tell us that they have been assumed to be lacking capacity to make small or big decisions, without the necessary assessment. That they have been denied recognition of their mobility problems, sensory issues and other comorbidities. That they have been expected to function in environments which are overwhelming and oppressive for them because of their dementia.
And there is more! They tell us that they have been denied benefits because the implications of their cognitive issues are ignored. That they have been refused mortgages or insurances. That they have been medicated or restrained, rather than being given skilled support for their distress responses. That their nutritional, hydrational, health and pain needs have been ignored because they cannot communicate them easily. That they have been denied a Blue Badge for parking, because dementia alone is not seen as a disability (though hooray, it looks like this is changing!). That they have been denied a stair lift or a personal assistant because of their dementia. And that they have been forced to move into a care home against their wishes and through lack of any other option (especially when they have been admitted to hospital for other reasons). On top of all this, they have been routinely described as burdens, victims, sufferers and a challenge to our society.
Yes, there are of course pockets of good and even exceptional practice. But these accounts above are clear examples of discrimination – both direct and indirect – and treatment that contravenes their human rights.
Sadly, people with dementia often feel powerless against such discrimination, reluctant to frame their issues in terms of rights, even if they know them, and unable to insist on getting what they are entitled to by law. This is starting to change with the growth of the DEEP[ii] network across the UK and with wider global initiatives such as Dementia Alliance International. But there is a long way to go.
So what do people need in order to live well with this particular disability, dementia? They need an approach based on recognition of their human rights, not one defined by funding constraints and/or an over-sensitivity to perceived risk. They need an approach based on the ‘social model’ not the ‘medical model’. They need to be listened to – to have their expertise recognised. They need to be enabled, supported to contribute. And they need to be included not excluded.
Innovations in Dementia will be running a workshop at our FREE Unforgettable Event on 20th September. Get your tickets here.