My journey into disability rights was a happy accident and while over time and through the development of friendships my professional and personal commitment and involvement have blurred, as a non disabled person I have always sought to maintain a degree of distance, offering advice, sharing information and ideas, challenging thinking, but always – I hope – in support of, never on behalf of those with lived experience.
Recently that has begun to change, not through my own direct experience, but because in 2014 my dad was diagnosed with Alzheimer’s.
I have learnt since that such an early diagnosis is unusual – for many the condition isn’t identified until it has made significant progress. In my dad there were subtle but noticeable signs that something was changing, but even the medical professionals didn’t at first think it was Alzheimer’s, describing it instead as mild cognitive impairment. Following a battery of cognitive tests they changed their minds, yet in the immediate months afterwards there was little real sign of change and there was little if any proactive support shown or signposted by the NHS, with the exception of being prescribed medication to ameliorate the effects of the condition. In effect he was discharged upon being diagnosed and everything since has been down to us.
We didn’t much talk about it after his diagnosis, until my dad saw an advert in the Daily Telegraph for a drug trial in 2016. I recognise that for many people, including my dad, curing or halting the progress of the condition would be their ultimate preference and to achieve that, randomised controlled trials are vital. But everything about this was truly, unspeakably appalling: from the advertisement implying that a cure was already available, to turning up at the address given to find the company had moved offices, to the staff addressing all of their conversation to me and my mum while ignoring my dad, to the initial consultation overrunning and then being told the company was unable to do the tests that day and could we come back (my mum and dad had travelled from Manchester to London). Here was a company exploiting desperation and treating the very people it needs to help it get to the pot of gold at the end of the rainbow as dispensable and invisible. A trial in which there is a 1 in 3 chance people will receive a placebo, a 1 in 3 chance they’ll receive a low dose and a 1 in 3 chance they’ll receive a drug that doesn’t actually work is still being advertised as offering a cure to Alzheimer’s, and that, frankly, stinks. We walked away, but still nagging in my mind today is that it might have worked. Bastards.
What also stinks is the sheer amount of money going into such medical research in contrast with the complete absence of investment in support, as evidenced again this week with the delay in the social care green paper, and in building social inclusion. Four years on and the effects of Alzheimer’s on my dad are now apparent, following exactly the path loss of semantic memory predicts: previously intuitive tasks, like making a cup of tea, are no longer intuitive. Driving has become too risky. Money matters are all but impossible. Words are hard to come by. Slowly, gradually, my mum is becoming what bureaucrats – but not many of the people involved – like to call a ‘carer.’ If they require formal ‘social care’ at some stage, they will have to foot the bill, despite relatively modest savings and assets. I am no longer just an observer, commentator or would be influencer of policy in this area: it now has very direct implications for me and my family.
Hence if people have wondered why I have become so passionate about the way social care is framed and discussed, it is not because I have discovered some new ‘fad’ or simply to make a more persuasive case to the public at large. Rather it is because I am seeing up close both how care and support is unavailable to people at the very point it could help extend their independence and wellbeing, placing strain on families, while at the same time social care is seen by those who may need support as a threat – as something to be resisted. Public discourse frames social care as a ‘cost’ and the ageing society as a burden. It is positioned as a way to spare the NHS the costs of caring, not as having a valuable end in and of itself. Social care is associated with having to leave home and with losing our home and hence our security, our relationships and our sense of who we are and were we belong. Accepting it into our lives is seen as emblematic of losing our independence, not of extending or regaining it. As someone put it, social care is seen as a ‘broken system for broken people’ and well, who wants to go there? The need to reframe the debate about social care is not just about winning support from those as yet unaffected, but equally about shifting perceptions among those that are, those that provide support and those that commission it.
But this isn’t of course just about social care. The All Party Parliamentary Group on Dementia has recently launched an inquiry into disability and dementia, building on previous work by the Mental Health Foundation and others such as Peter Mittler and DEEP, including submissions to the UN Committee on the Rights of Persons with Disabilities in 2017. It is asking how people with dementia can benefit from law and policy that has evolved out of the struggle for equal rights among disabled people. I’m meeting with Alzheimer’s Society – who are supporting the inquiry – next month to share my thoughts.
As I have said before, I would be wary of the ‘exceptionalism’ that I think has sometimes surrounded this debate. Only 42% of people classed as disabled under the Equality Act 2010 self-identify as such. Most people with rights under the Equality Act or the UNCRPD do not, nor are they expected as a matter of course, to recognise themselves or to be recognised as a disabled person, save when seeking to enforce their rights or access dedicated financial and practical support. In this sense, people with dementia have more in common with the majority of disabled people than with the (albeit substantial) minority that do self-identify as a disabled person. That then is a communications challenge for government and others such as the Equality and Human Rights Commission, to ensure that they are reaching the right people with information, services and support.
This fact also opens us out to seeing the strong relevance and learning that can be drawn from what others have done and that others can gain from initiatives related to people with dementia. For example, Time to Change is a major campaign which strives to end mental health stigma and has enjoyed significant government and philanthropic investment. Many of the specific challenges it has sought to address are common to those faced by people with dementia, with stigma acting as a barrier to individuals and immediate families seeking support, telling relatives and friends and so on. Again, language is crucial, and research into how to talk about dementia productively – for example avoiding the language of ‘battling dementia’ that has surrounded news of Barbara Windsor having Alzheimer’s – is needed urgently. Equally vital is emphasising the capabilities and contributions of people with dementia and tackling head on the ‘prescribed disengagement’ that Kate Swaffer has talked so powerfully about. Last but not least, dementia needs to be framed as a social inclusion issue, not as one engaging only medicine or care, as now.
Within the fields of mental health, learning disability and autism, there remains a strong focus on the right to self-determination, to supported decision-making and self advocacy, often enmeshed with the struggle to live independently and to be included in the community. Bringing these ideas together with ‘dementia friendly communities’ could be hugely powerful.
Discrimination on grounds of disability, including failure to make reasonable adjustments, is hugely under explored when it comes to people with dementia, yet could provide a powerful lever in leveraging accessible services, transport and in ensuring that people are not rendered ‘invisible’ as my dad was by so called dementia specialists in the medical profession.
New technologies have a huge role to play, including Artificial Intelligence and robotics, while people with dementia should play a central role in debating the ethical dimensions of each in the context of their being developed and deployed to support people.
There’s much more to say, and I will in time, reflecting on my dad’s experience, those of my mum and how it affects me and my own family, as it surely will.
There’s nothing I or anyone else can do to halt the progress of my dad’s condition right now, and I can’t pretend that it’s not upsetting or that I wouldn’t prefer to reverse things. But I refuse to allow despair to win over hope and I’m going to do all that I can to ensure his and my mum’s wellbeing and to use the platform, networks and relationships, knowledge and ideas I have to do whatever I can to try to change the world at large.
Together we can do this.