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Whenever there is a restricted number of participants in a crowded market, the quality of the product tends to fall as the participants collude with another.
The botched performance of Carillion is a reminder that it’s often the same people on the same management boards of the same companies supposedly competing with another. And it’s the same for certain charities, with the same workforce with different operating brands, simply faking diversity, but in reality offering zilch thought diversity.
Dementia is not of course political, unless you include the ‘chosen ones’ performing very well in the Queen’s Honours List. I really feel it’s time to call out the nonsense of certain ‘dementia friendly’ brands, such as ‘dementia friendly emergency departments’.
I actually have no ideological objection to an enhanced ‘customer experence’ of a patient in an emergency department, but the hijacking of ‘dementia friendly’ a certain way has led to this construct meaning a better customer experience rather than, say, promoting the health of people with dementia and care partners.
There is a ridiculous secondary gain for charities to award scarce resources to fund research into dementia friendly emergency departments so that a few press releases can go out to comfort us all. Forget people with dementia dying while waiting for hours for an ambulance. Ignore people with dementia waiting for hours on a trolley waiting for a hospotial bed, or waiting for hours for transport to go home.
I am basically appalled by how relaxed some principal investigators in research, who are regulated by professional bodies, appear to be in declaring their financial competing interests when publishing academic papers, particularly in areas where these interests affect diagnosis or treatment of dementias.
I am worried how regulated professionals do not appear comfortable about speaking out about unsafe level of resources for dementia care, particularly if they are worried about their research monies being threatened.
The sheer contempt for specialists in dementia seems to predate the hatred of experts which accompanied the Brexit debate. For example, I don’t feel that the culture is healthy enough for us all to have a meaningful debate without causing offence and outrage about the difference between minimal cognitive impairment and dementia, or the heterogeneity within dementia, when I know of at least two people with dementia who will have published books on living with dementia by the end of next year.
The atmosphere really has become quite threatening for some specialists now afraid to voice opinions, with tropes such as ‘people with dementia and care partners are the real experts’. As it happens, I am a full time carer of someone living with dementia too. But it worries me that in the forthcoming APPG consultation on ‘dementia rights’, something I myself wrote a book chapter on in 2015, it will be exactly the same usual suspects, with exactly the same ‘empowerment and engagement’ causing exactly the same stale predictable narrative.
But we do need people to speak out on important issues, on why certain people find it so difficult to obtain an assessment for legal power of attorney following diagnosis, or how people with dementia might interact with the law if it feels that certain decisions need to be made in their ‘best interests’.
We need to discuss whether people have equitable access to medical and legal opinions. Simply airbrushing these discussions due to convenient pseudo-consultations which don’t ask the right questions from certain people, because of dementia friendly cronyism, is not right.
I think the atmosphere of how dementia care and research are evolving is really not right at the moment, and needs urgent attention. It’s when it’s a case of ‘who you know’ rather than ‘what you can contribute’ then you need to worry.
Writing my book ‘Living better with dementia: champions for enhanced dementia friendly communities’ has been a real eye opener for me.
I think it’s terribly easy to carp from the sidelines about the ‘dementia friendly communities’ policy as implemented in England, but England is in fact helping to lead the way with this policy. ‘Dementia friendly communities’ is a policy which has a strong global backing, with links to the World Health Organisation’s “Age friendly cities”.
The WHO “Age Friendly Cities” recognised that there are basic design features of an urban city, wherever in the world, which might make living in it much easier; such as ‘inclusive design’ which is accessible to people.
Dementia is not just about ageing, so it is a challenge to think about what a dementia friendly ‘community’ might be. It’s important for this to be a ‘community’ not just a city, as it is recognised that around the world there are remote or rural areas where people who’ve been diagnosed need to feel welcomed.
When I went up to the Alzheimer’s Europe conference in Glasgow earlier this year, I had the good luck to meet Ann Pascoe in the hôtel where we weree having her fringe events. She has been doing groundbreaking work on rural dementia friendly communities in Scotland. I subsequently met one of team doing great work on dementia friendly rural communities in Wiltshire at the Dementia Action Alliance meeting the other day.
I met Toby Williamson from the Mental Health Foundation too at Glasgow, as well as Grainne McKettrick who first started her work on equality and equity at the Alzheimer’s Society in Scotland. I am delighted that Grainne has allowed me to quote from her speech in my one of my book chapters for the book I am submitting.
That chapter is on reconciling a rights-based approach promoting dignity and autonomy, with other mechanisms to promote ‘choice’, in a more consumerist way, through ‘personal budgets’ or ‘self directed support’.
Grainne remarked in her email to me yesterday how she had been really impressed with how fast the policy stream for this has taken pace in the last few years.
I think this is indeed worth noting for England. In the last fee years, we have seen a number of aspects suddenly converge at once, which have made a really big impact: these include the recognition of the UK government of the UN Convention on rights for disabled citizens (a few years ago), the Equality Act (2010), “dementia friendly communities” and the Prime Minister’s Dementia Challenge.
A welcome move will be there will be some sort of ‘standard setting’ for dementia friendly communities. It is far too easy for some communities to claim that they are ‘dementia friendly communities’, for their own promotion, rather than meeting an accepted reasonable level of requirements.
I think it’s great that people living with dementia can expect now a better level of service in the high street, say from a high street bank. But it’s important that this policy doesn’t raise inappropriate expectations.
But it is also true that this policy should raise expectations on employers dealing with people of a certain age, say in their early 50s, who might be developing a dementia in the younger age group, such as diffuse levy Body disease, vascular dementia or Alzheimer’s disease.
It’s a legal obligation for employers to make ‘reasonable adjustments’ against anyone with a ‘protected characteristic'; and dementia is one such characteristic, coming under the disability umbrella.
So why are there not many test cases for unfair dismissal for people who are sacked ultimately because of developing dementia? I have given this some considerable thought in the last few months since meeting Toby Williamson, and I reckon the answer is predominantly two fold.
Firstly, I don’t think it’s thought to be certain that the problems faced by an employee is due to a dementia at the time of ‘sacking’ with an element of mutual collusion that neither party is hoping for the likelihood of such a diagnosis. There are also intrinsic problems in England in areas of the country for achieving the diagnosis in a prompt manner. Prof Sube Banerjee warned recently how policy should not promote ‘high quantity, low quality’ of dementia diagnoses, on the other hand.
Secondly, I don’t think people are also aware of their legal rights under discrimination law, and, even so, don’t wish to take their employer to court for fear of losing any retirement packages or loss of goodwill, or inherent problems in access to justice. In England, under the current government, the legal aid budget has been slashed due to the Legal Aid and Sentencing and Punishment of Offenders Act (2012).
And another reason is that whilst we may have been promoting dementia friendly communities encouraging companies to cater for their customers living with dementia we haven’t been so keen to push ‘dementia friendliness’, a responsibility (rather obligation) of the employer.
There is, though, encouraging progress being made in other jurisdictions. I think we could no worse than to take a leaf out of the consumer action group of the Alzheimer’s Australia set up in England in pursuing this policy further.