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Ticking boxes and snazzy campaigns won’t be sufficient to improve ‘dementia rights’



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Cited in a OECD report, it is reported that half of all people with dementia may have experienced verbal, physical or psychological abuse or neglect at some point.

 

We feel strongly that the discussion of ‘dementia rights’ is very serious, and far too important to be left to marketing leaflets.

 

Dementia rights affect many people, such as carers or care home managers, but not least people living with dementia themselves.

 

And yet it sometimes feels as if ‘dementia rights’ have primarily been interpreted according to the needs of the people other than those living themselves with dementia.  And, disturbingly, there is no distinction between ‘consumer rights’ and other rights.

 

A wider of range of people should be involved in the future discussions of rights. There are burning issues to discuss, such as glaring inconsistencies in current law. What about those who have agreed to hospital admission, or at least show no signs of objecting to it, but who may still be deprived of their liberty in various ways – for example residing in a locked ward?

 

We know in theory that every effort should be made to prevent the need to deprive someone of their liberty. It must be used for the minimum time possible. The legislation is supposed to protect vulnerable people. But why the perpetual schism between rhetoric and reality?

 

The English Law Commission’s own recent report“372 Mental capacity and deprivation of liberty” noted that:

 

It is concerning that people often do not feel safe, treated with dignity or that their human rights are respected whilst detained.”

 

Dignity is an essential intrinsic part of human rights law. It is not merely an ‘adjunct’.

 

In response to the war’s atrocities, the UN’s universal declaration of rights in 1948 provided that “all human beings are born free and equal in dignity and rights” under its article 1.

 

But Catherine Dupré comments:

 

Protecting and defining dignity through human rights law is not always a straightforward business, especially because it often raises, in the words of the European court of human rights, a question of civilisation.”

 

It is critical now that we have an inclusive, wide-ranging debate, about how to progress. For example, an independent reviewhas set up for England and Wales, led by Professor Sir Simon Wessely, to look not just at our mental health laws, but also how they interact with services, good practice and the wider care system.

 

We must concede that changing legislation alone will not be enough to improve the lives of people affected by dementia, but, still arguably, a wider range of people with dementia and care partners should still have a seat at the table while this legislation is being changed.

 

In the “competence model”, a patient with dementia might be deemed incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient.

 

But this does not appear consistent with article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD).

 

It seems that CRPD article 12 makes it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired mental decision-making capacity and requires the replacement of all regimes of substitute decision-making by “supported decision-making”.

 

The crucial difference is, therefore, that the “UNCRPD states that everyone with a disability should enjoy legal capacity on an equal basis with others in all aspects of life.”

 

Whatever local focus groups and tick-box “engagement meetings” take place, it is essential we have a thorough discussionof ‘dementia rights’ including specialists in law and dementia care, especially when so much is at stake. This is especially important as there are so many valid voices and actors in the ‘civil society’.

 

As the experience of Dementia Alliance Internationalshows, “nothing about us without all of usneeds to be more than a slogan.

 

@dr_shibley

Dementia friendly communities are more than the customer experience



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For some reason, the terms ‘person experience’, ‘patient experience’ and ‘customer experience’ have become conflated to a rather unhelpful degree.

I would like to be careful how I say this, though, because we do know that bad customer experience does exist for people living with dementia and care partners, and guidance or standards can help.

Corporate marketing can give high street brands a helping hand with adding competitive advantage, by making them more ‘dementia friendly’, and in return these high street brands can give a bit of marketing for the charity in return.

This is, of course, not the time for cynicism. ‘Dementia friendly communities’ have also in a more recent configuration which emphasises a rights-based approach.

I’ve often felt that the rights-based approach gets confused with party A taking party B to court over matter C, but they are much more of a question of a rights consciousness. The PANEL principles were originally proposed to articulate this rights-based approach, and are summarised here.

PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.

I have seen with my own eyes the subtle, and indeed not-so subtle, discrimination of society towards people with dementia. This is disappointing as the Prime Minister Dementia Challenge was fist introduced five years ago.

I might be standing in a room with my mother, known to have a diagnosis of mixed Alzheimer’s and vascular dementia, and a third person can often completely ignore her because of her diagnosis.

For all the millions of ‘Dementia Friends’ which have been created, the question remains whether a genuine cultural shift in attitudes has existed. Various unknowns exist, including how bad things would have been if there had been no public awareness campaign for dementia.

A significant problem which pervades all the work looking at whether there is merit in the dementia friendly communities approach is knowing how much time to give the dementia friendly communities to ‘take effect’.

Participation is something which can be looked at directly. Democratic inclusion is a matter of principle, and it would be interesting to know how many people with dementia, including in care homes, are actively supported to vote. This might involve making reasonable adjustments for participating in the voting process.

Many of these aspects can be looked at also by looking at how many persons with dementia, now patients of the NHS, are able to secure a GP appointment in the festival of ringing up at 8 am when the GP opens. Many barriers might exist, such as being oriented to the time, remembering the GP number, recalling the purpose of the appointment, and so on.

The scale of ambition is also worth looking at. We could look at how many providers are providing NHS information in an accessible manner, but this is venturing into the area of competitive advantage, especially where providers in dementia services exist in a private market.

But what is interesting, with the problems in legal aid and access to justice aggravated from 2012 especially, is how many persons with dementia on receiving a diagnosis are able to secure a lasting power of attorney.

Again, we would expect a significant difference right now between communities which are ‘dementia friendly’ and those which are not.

So, in summary, I feel that the focus on customer experience in high street shops is a bit of a canard, and wider issues of access to health, access to justice,  access to health or participation in the democratic process should have been tangible benefits of ‘dementia friendly communities’ by now.

 

@dr_shibley

Time to call out dementia friendly cronyism



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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.

Are we there yet? The road to the dementia cure is paved with biomarkers.



This was the CORRECT entrance – the Eastern entrance.

If you come to the ExCeL centre in anything other than a black cab, you will be circling the complex for hours before you set foot in an entrance.

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Make no mistake – this particular conference was intensely scientific. But it was nice to sink one’s teeth into the something other than the dividend-producing engagement and empowerment of the dementia industry.

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Being a card-carrying academic, I personally think there is a lot to boast about in terms of the quality of neuroscience being done globally for dementia. Unfortunately, the genuine advances in the socio-economic-legal policy are dwarfed by a vocal minority of people with massive egos, who have a pathological addiction to introducing themselves to members of their inner circle.

But the good guys were there in force – mainly my Specialist Registrars from 2002 who had now become Professors in dementia at Queen Square.

Take Jonathan Schott.

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Or Huw Morris.

(I was especially glad to hear there is now a palliative nurse specialist in the progressive supra nuclear palsy service.)

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Prof Martin Rossor – our boss – in fact tapped me on the shoulder as I was walking along one morning. I thought it was a security guard at first!

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So there are many reasons to be cheerful.

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#AAIC17 for me was total heaven. The enthusiasm of the researchers was authentic and deep, and the camaraderie was inspiring. I still think this was one of the best slides in the whole conference, presented by Prof Philip Scheltens.

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The mild cognitive impairment (MCI) continues to be rather fraudulently in my opinion as a ‘staging post’ to dementia, and there indeed to be some professionals who cannot even tell the difference between MCI and dementia. This is rather worrying.

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The narrative of the ‘conversion’ has been far too overblown – with nearly hyperbolic remarks on its importance in the lifecourse trajectory in the Lancet Commission which emerged at the end of the conference. The Commission curiously contained a reference to mild behavioural impairment – legitimising of course the self-entitled pronouncements of the medical profession of ‘what is normal’ when it comes to behaviour or cognition.

I agree with the Aunt Sally argument that there is some behaviour which is clearly abnormal (though in Cambridge it was hard to tell as there were indeed some people who had won the Nobel Prize more than once).  But one has definitely to be worried about human beings being drugged up to the eyeballs for being a ‘bit apathetic’ or a ‘bit depressed’, on the off chance he or she might develop dementia one day.

I found the Conference quite relaxing, like some package holiday one had been waiting patiently for for months.

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My questions at the poster sessions ranged from ‘Where do you park your car at Addenbrooke’s?’ to ‘How long does it take you to do a lumbar puncture?’ Unfortunately, the young postdoc had no idea how long lumbar punctures took, despite her poster being all about CSF TDP43 markers and diagnosis – but she knew the junior doctor had done them all for her.

This is in a sense how idealised and pie-in-the-sky some of the international research has become – the need to focus on a chemically accurate diagnosis, whatever the symptoms are.

Like everyone else, I was there to flog something – my book in fact – available from all good bookshops, but possibly not from the Big Charity in dementia as yet.
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And this person is a genuine ‘consumer’ of books of mine and Kate Swaffer, who sits on the World Dementia Council and is CEO of ‘Dementia Alliance International’ – the largest stakeholder group of people living with dementia in the world, the partner organisation of Alzheimer’s Disease International.

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It was great to see Kiki from Kenya, who is doing great work on the World Dementia Council – and also a friend of ours.

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Everyone knows that the current state of the amyloid hypothesis is a mess – for example, “the drugs don’t work” and there are people around who have loads of amyloid plaques and better cognition than you or me. But why spoil a good story? The feel good factor, like you get in a Billy Graham convention, is of course what conference goers in dementia lap up.

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It was nice to see the Lewy Body Society – they have ALWAYS supported my work, and included me. And I am interested very much in Lewy body dementia, and I think Prof Ian McKeith is great.

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The members of the Alzheimer’s Research UK team were fun all week – and it was great to see Hilary Evans (and George).

The work being funded by ARUK in neuroscience is of course a complete contrast to the lack of good neuroscience, apart from on cholinesterase inhibitors, which emerged in the Lancet Commission on dementia. The Lancet Commission on dementia seemed to confuse seamlessly whether the authors were discussing Alzheimer’s disease only at one minute, or >100 different types of dementia at another minute. But then again – for some researchers – the Alzheimerisation of dementia was complete long ago.

There was barely any sensible comment on the neurobiology of sleep in dementia, for example, the mechanism by which sensory impairment might lead to Alzheimer’s disease or any other form of dementia, or any meaningful biological mechanism of ‘cognitive reserve’ even though discussed at some length.

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But I really  should’ve been concentrating on the basics – as for half of the week, I entered the ExCeL centre through the wrong entrance.

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This was, however, one of my favourite posters. There is much to be said about how genes, prominent in the development of the human central nervous system, behave in dementia. I know notch-3 because of its rôle in vascular cognitive impairment, specifically CADASIL, but I found Lavinia Alberi Auber’s work as a PI brilliant.

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Lavinia was extremely knowledgeable about notch (and Wnt and wingless) as you’d expect her to be.

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This was another amazing poster by Kirsty McAleese.

Definitely a star in neuroscience for the future.

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The importance of the poster for people interested in how the parietal cortex goes wrong in posterior cortical atrophy cannot be overstated.

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I’m a huge fan of the work of Prof Seb Crutch – so I was immediately drawn to these striking results on the neural substrates of posterior cortical atrophy.

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Kieran presented his brilliant work on the factors affecting the prescription of anti-psychotics.

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The content and tones varied a lot – so one minute it was Kirsty’s poster, and then it was Assoc. Prof. Lee Fay-Low with a sensational talk on dementia policy.

Seeing Prof Henry Brodaty walking around was exciting as seeing Bob Dylan in person.
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It was great to see some familiar friends, and now good friends, like Prof Dawn Brooker.

Dawn promised to help me with the parts of my new book ‘Essentials of dementia’ I’m doing with Prof Rob Howard that Dawn proposed herself – like “The VIPS model”. We ended up having quite a relaxing chin-wag about Namaste care and the issues of ‘process consent’ (but how Prof Jan Dewing’s work had helped a lot.)

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I looked carefully at Barbara’s poster on behalf of some geriatricians who strongly support the bedside ‘clock drawing test’ for dementia.

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With the ‘greater awareness’ of dementia (however-so defined), there is going to be a varying perception of risk.

I’ve always liked Dr Richard Milne since we first met in Newnham College in Cambridge for a mini-conference on dementia.

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And his poster was a crowd puller – as well as really important work if we want to get people interested in slowing the progression of dementia in those people who’ve been newly diagnosed with it.

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One hopes that the urge to publish something ‘big’ on dementia during #AAC17 was not primarily due to the lack of progress on novel neuropsychopharmacological cognitive/behavioural interventions (and a big Phase III trial result) – but of course I would never be so cynical.

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It makes intuitive sense that dementia develops long before the existence of symptoms. In other words, brain changes which lead to dementia are already setting foot in people when they are young.

But the problem with framing it as ‘this can prevent you from getting dementia’ argument is precisely what somebody living with Lewy body dementia once told me – “Shibley, I did none of that, and I still have dementia.” It is far better to frame the approach as risk reduction.

Baroness Thatcher and Harold Wilson were both highly educated Prime Ministers, having gone to a University called Oxford University.

And they both developed dementia.

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There will be people who live ‘virtuous lives’ and who still go onto develop dementia.

How?

Why?

Quite amazingly, there is no mention of “determinants” in the main body of the text – and inequalities is only mentioned once in the text of the Lancet commission. This is simply not acceptable if one is taking seriously a life course analysis.

I was left genuinely wondering whether this Venn diagram from the Lancet Dementia Commission could’ve been easily adapted for frailty – but this thought is an artefact of the Commission consisting of the ‘great and good’ in that particular disease operating in rigid silos.

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For example, there as a huge amount on abuse in the Lancet Commission but nothing on deprivation of liberty safeguards. Academics work too in their own silos, promoting their own research grants too much, meaning that the work can too easily distorted and biased.

There is never any discussion of how the Wishlist for statistical analysis is derived (except the statement “We sought to calculate a combined PAF for known modifiable risk factors for dementia. We decided which risk factors to include by identifying those listed in the UK National Institute of Health and Care Excellence (NICE) and US National Institutes of Health (NIH) guidelines” is bordering on the too whimsical.)

There is never any discussion of the degree of independence of the factors (e.g. diet and diabetes), so consequently the results and discussion appear much more precise than they deserve.

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Prof Rob Howard’s talk was exceptionally useful – given how thorough and methodologically sound it was. But the acoustics were terrible.

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And the lack of sensible discussion in the talk and the paper on the factors affecting ‘social vulnerability’, such as the effects of poverty, poorly organised health and social care systems – genuinely troubled me. One of the questions in the audience alluded to whether the report was too medical – and I wonder about this too.

 

Even though the panel discussion of social vulnerability in the launch was poor in response to my question generally, Prof Alistair Burns correctly referred to the section of the paper which does indeed refer to social vulnerability – that is, of course, depression. (This impacts on social networks, loneliness and inclusion, discussed elsewhere in the paper.)

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There is no mention of “advance decisions” or the “United Nations Convention on Rights of Persons with Disability”, and only a mention of human rights in relation to abuse, which lead to me to conclude that the The Lancet Dementia Commission did not understand at all the legal field of substituted decision-making and the full importance of autonomy.  But having said that the discussion of advance care planning, and the importance of palliative care/end of life, was exemplary in my view.

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If you’re genuinely interested in research, this conference is really for you. I had a thoroughly enjoyable and all too brief chat with Prof Ken Rockwood. Ken’s work is extremely well known to me – and I am particularly looking forward to discussing the work of Ken and of colleagues in Dalhousie University, Nova Scotia, in my book ‘Frailty: from assets and deficits to resilience’ for next year (Prof Ken Rockwood and Prof Adam Gordon are doing the forewords.)

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It was great to meet people I’d never met before – including Dr Joe Kane, a SpR in psychiatry with an interest in Lewy body dementia.

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Some people transcend all whinges I have – because they’re such decent people.

Chris Roberts is the best.

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@dr_shibley

My review of the film “Still Alice”



Still Alice

This evening, I asked someone living with dementia whether he recommended I should watch “Still Alice”. He is yet to see the film.

He emphatically said, “yes”. In fact, he informed me that he would indeed buy the film if he thought it was any good.

“Still Alice” is a 2014 American drama film written and directed by Richard Glatzer and Wash Westmoreland and based on Lisa Genova’s 2007 bestselling novel of the same name. The film stars Julianne Moore in the role of Dr. Alice Howland, a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease.

Alec Baldwin plays her husband John, an ambitious medical researcher. Kristen Stewart, Kate Bosworth, and Hunter Parrish play her children Lydia, Anna, and Tom.

I was not looking forward to watching this film at all, despite its brilliant reviews. In a way, the film is in a ‘no win’ space of having not to over-glamourise dementia, and yet simultaneously not to depict it in overwhelmingly negative terms.

As someone who has been an academic and/or practitioner in this field since 1997, I really think the film is an excellent attempt at this very difficult topic.

No one person’s experience of dementia is the same as somebody else’s; and your perception of that person with dementia will depend on a huge number of factors, not least your own preconceptions and the coping strategies of the person living with dementia. The portrayal of Dr Alice Howland is completely believable though.

Dementia doesn’t just affect old people; although your risk of dementia increases as you become old.

The film is to be praised for emphatically demonstrating that the diagnosis of dementia affects friends and families, and not simply a person in isolation. Whilst the character Dr Alice Howland is initially told the possible diagnosis alone, it is clear that the whole family becomes involved.

There is a sense of the ‘prescribed disengagement’ which Kate Swaffer, living with dementia in Australia, has so graphically described. All too often the diagnosis of dementia is articulated as an ‘end’ rather than a beginning. I inevitably watched the film through the prism of how much it promoted the notion that it is possible to live better with dementia.

The effect on work in this particular story is interesting. I am mindful of other criticisms that portraying her as a linguistics professor is over-egging the topic somewhat, but reality can be larger than life. Prof John Hodges’ team in Australia, as is known publicly, was involved in charting the change in language profile of Iris Murdoch, renowned author and wife of Prof John Bayley who has recently sadly passed away.

In someone presenting with a clinical picture of early Alzheimer’s disease, with that particular distribution of abnormal amyloid protein in the brain (although we are not given precise details), as shown by PET neuroimaging, it might be entirely reasonable to seek out a genetic diagnosis such as a presenilin mutation. I realise that Dr Alice Howland is a fictional character, but the issue of how the issue of certain types of dementia might run in families is a very active one both in the US and here in the UK.

I quite liked the use of internet chat in the film. All around the world, there is interest in the intelligent use of technology to connecting unique individuals with dementia to others, and indeed to their past through the method of ‘life story’.

No film on this topic would be expected to be anywhere near perfect, and some of the issues will be raw for many, such as the choice of care homes and behaviour in them. However, I think that this film is as a good attempt as any to cover some hugely important issues. I also think the acting in the film is simply beautiful.

“Living better” with dementia is desirable, but what does it mean for care?



Dementia graphic

After having thought about it for more than one year, I’ve concluded that the term ‘living well with dementia’ is not the right one. For a start, it implies some objective, sometimes unattainable, standard. Also, I feel that some people are clearly not well with dementia with the dreadful state of post-diagnostic care and support in some parts of the country, or personal symptoms which are difficult to manage (not living well with dementia from a lack of ability to communicate verbally, or intense ‘night terrors’). Each person living with dementia is more than the dementia, and I am mindful of not projecting an over sanitised portrayal of the dementias.

Somebody I truly admire in her work and general campaigning on dementia is Beth Britton. Beth has already made a huge impact in the co-production group at the CQC, and will, I am sure, make a massive impact on the Carers’ Commission. Having founded D4Dementia in May 2012, the blog was a finalist in the Roses Media Awards 2012 and has developed a huge following in the UK and internationally. The blog is genuinely loved and supported by thousands of families, carers, people with dementia, health and social care professionals, policy makers, leaders and anyone looking for a highly informative, personal and authoritative perspective on dementia.

I will publish my book ‘Living better with dementia: looking to the future’ later this year (around June – July 2015) with Jessica Kingsley Publishers. I feel that this book, although adopting both a domestic and international viewpoint, fits in very nicely with Beth’s corpus of impressively high quality work.

 

Chapter 1 provides an introduction to current policy in England, as it currently stands, including a review of the need for a ‘timely diagnosis’ as well as a right to timely post-diagnostic care. This has been a vocal concern of Baroness Sally Greengross, the current Chair of the All Party Parliamentary Group for dementia.

In England, the issue of the ‘timely diagnosis’ is an exquisitely sensitive one.

We’re lucky Beth, Ming Ho and Sal Marciano have contributed to this debate: viz:

Other carers, Beth Britton, Sally Ann Marciano and Ming Ho contributed their experience emphasising that support is essential and that good outcomes for the whole family, in addition to those of the person with dementia, should be taken into consideration.

This chapter also provides an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run very successfully by the Alzheimer’s Society and Public Health England, to raise awareness about five key ‘facts’ about dementia. It was intended that this campaign should help to mitigate against stigma and discrimination that can be experienced by people living with dementia and their caregivers. The ‘proof of the pudding’ will come when the outcome of turning communication into action is assessed objectively.

 

Chapter 2 comprises a preliminary analysis of stigma, citizenship and the notion of ‘living better with dementia’. This chapter explains the urgency of the need to “frame the narrative” properly. This chapter also introduces the “Dementia Alliance International” group, which has fast become a highly influential campaigning force by people living with dementia for people living with dementia.

It is hoped that openness in discussion will help to mitigate against a deeply entrenched stigma by some.

Beth advises, in the Huffington Post, that:

As Margaret Thatcher joins the many people with dementia who have passed before her, and debates rage about her political legacy, I would argue that this is a time to talk as openly about her most recent experiences as it is to reflect on her career. An opportune moment for us all to think about what having dementia means, whether you are a former prime minister, a doctor, a professor, a grocer, a bus conductor or a refuse collector. Dementia brings a whole new meaning to being ‘all in this together’.

 

Chapter 3 looks at the various issues facing the timely diagnosis and post-diagnostic support of people living with dementia from diverse cultural backgrounds, including people from black, Asian and ethnic minority backgrounds, people who are lesbian, bisexual, gay or transsexual, and people with intellectual difficulties. Attention is paid to the various intricate ways in which exact culture can impact not only on the timely diagnosis of dementia but also in the post-diagnostic care.

 

Chapter 4 looks at the issue of how different jurisdictions around the world have formulated their national dementia strategies. Examples discussed of countries and continents are Africa, Australia, China, Europe, India, Japan, New Zealand, Puerto Rico and Scotland. There is remarkable convergence in the efforts of various jurisdictions, and it is here I first introduce the critical importance of collaboration. A major plus here has been the contribution of the Alzheimer’s Disease International in their work on the need for national dementia policies, and how to implement them.

 

Chapter 5 looks at the intense care vs care debate which has now surfaced in young onset dementia. There is a potentially problematic schism between resources being allocated into drugs for today and resources being used to fund adequately contemporary care to promote people living better with dementia. An example is discussed of how the policy of ‘Big Data’ had gathered momentum across a number of jurisdictions, offering personalised medicine as a further potential component of “person-centred care”.

This chapter also considers the impact of the diagnosis of younger onset dementia on the partner of the person with dementia as well. It can never be considered that a diagnosis is given in isolation:

As Beth remarks,

For us, devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed, inevitably making mistakes along the way, but always trying our best to understand what his life was like and what he needed. Through the work I do now, I aim to use that knowledge to improve the lives of all those who are touched by dementia, increasing awareness and education in society as a whole, and transforming the care given to people with dementia and their families.

A candid description in my book was also given about the possible sequelae of the diagnosis of young onset dementia on employment, caregivers, and in social isolation.

 

Chapter 6 focuses on delirium, or the acute confusional state, and dementia. It attempts to explain why delirium and dementia might converge in policy, after all. There are general issues of whether it is possible to inject incentives into the system at critical points. However, in parallel with this, there is an active debate as to why delirium (however so labeled) is not picked up sometimes in hospital, why people who experience an episode of delirium can do quite badly in the long run, and what to do in the special case of a person living with dementia with delirium superimposed on that.

 

Chapter 7 is the largest chapter in this book, and takes as its theme care and support networks. I make no apologies about the length of this chapter, as I have been hugely influenced by the Dementia Action Alliance Carers Call to Action in the last year.

Beth comments that:

Most carers are totally unprepared for what caring will involve and have no idea when their caring role will end. They often ‘fall into’ caring, simply by taking on small responsibilities that escalate, triggering experiences that untrained family carers can find very difficult to cope with.

There is huge interest internationally in the subject of ‘what makes a good care home’, as Beth comments:

For me the gold-standards that every family should be looking for from a care home are person-centred care, compassion, dignity and respect. You want to know that your loved one will be treated as an individual in every possible aspect – not just another box to tick on a care plan. You also want to know that they will have access to anything and everything that constitutes therapeutic dementia care, and not just a range of set ‘activities’ that they have no interest in participating in.

The idea of families and professionals working side by side is a very powerful one.

Beth takes this idea up here:

This shows that when families and professionals work side-by-side it often creates a unique, and holistic, model of care. Relatives can also benefit from the support and knowledge that professionals caring for their loved one can provide in challenging times.

It should never be the case that those who have spent years being educated in their subject feel that their clinical training and evidence based approach carries greater weight, or that families adopt the viewpoint that their emotional ties and personal experience is all that is needed to effectively care for their loved one.

 

In my book, an overview of how patient-centred care is different from person-centred care is given, and how person-centred care differs from relationship-centred care. I feel, personally, that the literature has thus far excessively focused on the ‘dyadic relationship’ between the person with dementia and caregiver, but a need to enlarge this to a professional in a ‘triangle of care’ and extended social networks was further elaborated and emphasised.

Different care settings are described, including care homes, hospitals – including acute hospital care, and intermediate care. This chapter first introduces the critical role of clinical nursing specialists in dementia in providing proactive case management in a person-centred care philosophy.

However, Beth is right, in my opinion, to bring up the notion that “care homes are not police states“; rather care homes could be open to scrutiny whilst being part of an extended community.

Britton has her suspicions about the events that led to this crisis, but she is unable to prove them. Based on that experience, she supports the idea of CCTV in care home rooms on an opt-in basis: “A camera might not have saved his life, but it would have told us what happened. However, I don’t think they should be put everywhere for everyone. We don’t want to turn care homes into a police state.”

 

Chapter 8 considers eating for living well with dementia. This chapter considers enforceable standards in care homes, including protection against malnutrition or undernutrition. The main focus of the chapter is how people with dementia might present with alterations in their eating behaviour, and how the mealtime environment must be a vital consideration for living better with dementia. Eating well with dementia is clearly not all about finger snacks and the such like.

 

Chapter 9 looks at a particular co-morbidity, incontinence. Focusing on the various co-morbidities will be an opportunity of a whole person approach for a person living with dementia, during health as well as illness. The emphasis of this chapter is on conservative approaches for living well with dementia and incontinence. Other issues considered here are the impact of incontinence on personhood per se, and the possible impact on the move towards an institutional home.

Incontinence for a person living well with dementia is not all about pads. We have to, as a society, wish to talk about incontinence for people living with dementia, and I am hoping this chapter is a help.

I feel Beth has been instrumental – in her work – in breaking down societal taboos, for example:

How do you feel about the idea of needing someone to dress you, wash you, help you to the toilet or change your incontinence pads, feed you, give you medication, move you around, and enable you to watch the TV programmes of your choosing or listen to the music that you love?

This is day-to-day life for the many people who receive care. Such dependence can happen at any age, but it becomes more likely as you get older, making the need for care something people fear the most as they approach their mature years.

 

Chapter 10 argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service in the form of “whole person care”. This chapter provided the rationale behind this policy instrument in England. This chapter argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service. Currently too many NHS patients cannot be discharged out of social care in a timely fashion.

We certainly do need to be looking forward to the future now.

As Beth says,

In 15 years’ time we must have a health and social care system that is (finally) fully integrated. The UK should be leading the way in providing aged care, and recognising and fully supporting the role of family carers. More broadly, I want to be living in a society that makes ageing something we embrace and nurture, not something to be sneered at, marginalised and locked away.

 

Chapter 11 considers the importance of the social determinants of health. The framework, I argue, is eminently sensible for organising one’s thoughts about dementia friendly communities. The focus of this chapter is housing. I focused on design of buildings in my previous book ‘Living well with dementia’, but I wished to articulate here the wider context of the importance of housing for a person living well with dementia. Housing for living well with dementia is not just about buildings, and is pivotally enmeshed with the person centred care philosophy of projected English policy.

 

With such a broad brush tool as equality and “dementia friendly communities”, the scope for squashing diversity is enormous. Few topics enter the realms of “one glove does not fit all” to the same degree as the potential use of global positioning systems for dementia. Chapter 12 considers whether ‘wandering’ is the most appropriate term. The main emphasis of this chapter is the legal and ethical considerations in the use of ‘global positioning systems’ in enhancing the quality of life of persons with dementia and their closest ones. A central theme of this chapter is what might be best for the piece of mind of the person in a caring role might not be entirely synchronous as the wishes of the person himself or herself with dementia. To show how extreme the term “wandering” potentially becomes, I am aware of some friends of mine living with dementia who simply wish to go for a pleasant walk, but are frightened of being labeled as “wanderers”.

 

Chapter 13 considers head-on a number of important contemporary issues, with a main emphasis on human rights and “rights based approaches”. While there is no universal right to a budget, the implementation of personal budgets is discussed. This policy strand is indeed very complex. The chapter progresses to consider a number of legal issues which are arising, including genetic discrimination in the US jurisdiction, dementia as a disability under the equality legislation in England, and the importance of rights-based approaches for autonomy and dignity.

Nonetheless, “personalisation” remains a powerful strand in policy across many successive governments.

As Beth notes – in an apolitical way:

The first and most important thing to stress is that everyone is an individual, so what works for one person won’t work for another. True quality of life is only achieved through personalisation, therefore it is vital that everything you help someone with dementia to do, achieve or enjoy is what they have or would choose for themselves.

 

Too often the debate about dementia can be engulfed in a diatribe about ‘cost’ not ‘value’. Persons living better with dementia wish to contribute effectively with the outside world, and the feeling is mutual. Chapter 14 is primarily concerned with art and creativity, which can be incredibly empowering for some people trying to live better with dementia. This chapter takes as its focus on how living with dementia could lead to art and creativity. This chapter also looks at the exciting developments in our understanding of the perception of music in people living with dementia, and why music has the potential to enhance the quality of life for a person living well with dementia through its intrinsic features as a reward.

 

Too often the focus in international policies is on medications.

I believe the interest in ‘reminiscence’ is very well deserved.

Beth describes it thus:

Dad’s room was filled with pictures, cushions depicting farmyard scenes and life-like soft toy animals – everything chosen because it told some part of his story. At the heart of that was dad’s memory box displaying captioned photographs charting dad’s life from his birth to mine, alongside emblems that represented his home county and favourite football team.

All of these reminiscence therapies combined to keep dad’s identity alive, much in the same way that resources like Memory Bank can do for people who are living with dementia today. These aids help to focus on the uniqueness of the individual, and provide focal points for conversation that ensure each person’s story is brought to life.

Chapter 15 looked at the triggering of football sporting memories in people living well with dementia. This chapter considers the cognitive neuroscience of the phenomenon of this triggering, and presents a synthesis of how the phenomenon could be best explained through understanding the role of emotional memory in memory retrieval, how autobiographical memories are represented in the human brain usually, the special relevance of faces or even smells such as “Bovril”. The triggering of football memories may have some neuroscientific commonalities with the triggering of musical memories, and it will be interesting in the future to identify carefully which people living better with dementia benefit from such reminiscence approaches.

 

Chapter 16 looks at the impact of various innovations in English dementia policy, giving as examples including service provision (such as the policy on reducing inappropriate use of antipsychotics or the policy in timely diagnosis) and research. This policy goes through the current evidence for this evidence in particular detail, and considers how culture change may be effected internationally for quality in this policy area. This chapter tries to convey the complexity of the issue, and to explain in a fair way why deep down in this policy plank are traditional concerns to do with ‘continuity of care’ and ‘valid consent’.

 

Chapter 17 looks at how leadership could be promoted by people living with dementia themselves. I first introduce the need for this in Chapter 2. Chapter 17 considers who might lead the change, where and when, and why this change might be necessary to ‘recalibrate’ the current global debate about dementia. This chapter considers how change might be brought about from the edge, how silos might be avoided, the issue of ‘tempered radicals’ in the context of transformative change to wellbeing as an outcome; and finally how ‘Dementia Champions’ are vital for this change to be effected.

 

Finally, I attempt a Conclusion at Chapter 18.

 

 

‘Living better with dementia': a global perspective



My book, to be published in June 2015, is intended as a ground-breaking analysis of the challenges for living w ell with dementia, highlighting innovation and good practice for improving dementia care practice and policy in the future. What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people actually living well with dementia?

Adopting a broad and inclusive approach, I present a thorough critical analysis of existing dementia policy with emphasis on the English jurisdiction (but mindful of the global perspective), and I tackle head on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking.

world

Drawing on a wealth of diverse internally peer-revieweed research, and including voices from all reaches of the globe, I identify current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better w ith dementia in the future.

This is intended to be a unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.

 

Synopsis

 

Chapter 1 provides an introduction to current policy in England, as it currently stands, including a review of the need for a ‘timely diagnosis’ as well as a right to timely post-diagnostic care. This has been a vocal concern of Baroness Sally Greengross, the current Chair of the All Party Parliamentary Group for dementia. This chapter also provides an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run very successfully by the Alzheimer’s Society and Public Health England, to raise awareness about five key ‘facts’ about dementia. Indeed, Prof Martin Prince, Dr Renata Bryce and Dr Cleusa Ferri had previously introduced the critical topic of “The benefits of early diagnosis and intervention” in the World Alzheimer’s Report 2011.

A focus of this chapter is inevitably on prevention and risk factors,  aligning itself well with the aims of the World Dementia Council.

Mitigation against loneliness remains a profound driver behind the policy of dementia friendly communities in global policy.

 

Chapter 2 comprises a preliminary analysis of stigma, citizenship and the notion of ‘living better with dementia’. This chapter explains the urgency of the need to “frame the narrative” properly. This chapter also introduces the “Dementia Alliance International” group, which has fast become a highly influential campaigning force by people living with dementia for people living with dementia.

Critically, it has just been announced people living with dementia will be more involved in the work of the Alzheimer’s Disease International.

The statement from ADI reads thus:

The Board has agreed to start collaborating with Dementia Alliance International (DAI), an independent international group of people living with dementia. This will be done with a Memorandum of Understanding (MOU), with ADI agreeing to support the expansion of DAI to increase representation of people with dementia around the world, including those in lower and middle-income countries.

Overcoming stigma has become a massive issue.

 

Chapter 3 looks at the various issues facing the timely diagnosis and post-diagnostic support of people living with dementia from diverse cultural backgrounds, including people from black, Asian and ethnic minority backgrounds, people who are lesbian, bisexual, gay or transsexual, and people with intellectual difficulties. Attention is paid to the various intricate ways in which exact culture can impact not only on the timely diagnosis of dementia but also in the post-diagnostic care.

Here, for example, the diagnostic algorithm of 10/66 has been particularly influential.

 

 

Chapter 4 looks at the issue of how different jurisdictions around the world have formulated their national dementia strategies. There is remarkable convergence in the efforts of various jurisdictions, and it is here I first introduce the critical importance of collaboration.

A new report, ‘Improving Dementia Care Worldwide’ (PDF), reviews existing national dementia plans from around the world, and puts forward recommendations for governments on what a best practice plan should include and how it should be developed and implemented. The report was commissioned by ADI and Bupa, and written by Prof Anne Margriet Pot and Dr Ionela Petrea from the Netherlands Institute of Mental Health and Addiction (Trimbos-institute).

 

 

Chapter 5 looks at the intense care vs care debate which has now surfaced in young onset dementia. There is a potentially problematic schism between resources being allocated into drugs for today and resources being used to fund adequately contemporary care to promote people living better with dementia. The needs of people with young onset dementia are certainly distinct.

Chapter 6 focuses on delirium, or the acute confusional state, and dementia. It attempts to explain why delirium and dementia might converge in policy, after all.

 

 

Chapter 7 is the largest chapter in this book, and takes as its theme care and support networks. I make no apologies about the length of this chapter, as I have been hugely influenced by the Dementia Action Alliance Carers Call to Action in the last year. The need to help carers is certainly writ large in global policy.

 

 

Chapter 8 considers eating for living well with dementia. main focus of the chapter is how people with dementia might present with alterations in their eating behaviour, and how the mealtime environment must be a vital consideration for living better with dementia. In 2014, the ADI published their report on nutrition and dementia.

 

Chapter 9 looks at a particular co-morbidity, incontinence. Focusing on the various co-morbidities will be an opportunity of a whole person approach for a person living with dementia, during health as well as illness. The transition to a residential/care home, for example, can be profoundly influenced by difficulty in managing unmet needs such as incontinence; so unsurprisingly the efficacy of conservative approaches at home has experienced renewed scrutiny amongst a number of different jurisdictions.

 

Chapter 10 argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service in the form of “whole person care”.

The World Alzheimer Report 2013 went into a foray of the “journey of care”. One of the key recommendations was:-

Health and social care systems should be better integrated so that there are co- ordinated care pathways that meet people’s needs. Case managers (one for up to every 60 people with dementia) are likely to add value when working from the community, across the journey of care, as part of a fully integrated long-term care system for older people.

 

 

Chapter 11 considers the importance of the social determinants of health. The framework, I argue, is eminently sensible for organising one’s thoughts about dementia friendly communities. Housing for living well with dementia is not just about buildings, and is pivotally enmeshed with the person centred care philosophy of projected English policy.

This is a critical part of WHO policy. There is more work to be done here to align this (and WHO “friendly cities”, which has found considerable interest in Alzheimer Europe) with global dementia policy as regionally implemented in local jurisdictions.

 

With such a broad brush tool as equality and “dementia friendly communities”, the scope for squashing diversity is enormous. Few topics enter the realms of “one glove does not fit all” to the same degree as the potential use of global positioning systems for dementia. Chapter 12 considers whether ‘wandering’ is the most appropriate term. The main emphasis of this chapter is the legal and ethical considerations in the use of ‘global positioning systems’ in enhancing the quality of life of persons with dementia and their closest ones.

Chapter 13 considers head-on a number of important contemporary issues, with a main emphasis on human rights and “rights based approaches”. While there is no universal right to a budget, the implementation of personal budgets is discussed. Dementia being defined as an equality totally alters the nature of the narrative of discussion, and that these principles apply across the world is bound to attract interest (such as the UN Convention on the rights of persons with disabilities).

Too often the debate about dementia can be engulfed in a diatribe about ‘cost’ not ‘value’. Persons living better with dementia wish to contribute effectively with the outside world, and the feeling is mutual. Chapter 14 is primarily concerned with art and creativity, which can be incredibly empowering for some people trying to live better with dementia. I feel that arts-based therapies offers much untapped potential for the future.

Too often the focus in international policies is on medications. Chapter 15 looked at the triggering of football sporting memories in people living well with dementia. This chapter considers the cognitive neuroscience behind this.

 

 

Chapter 16 looks at the impact of various innovations in English dementia policy, giving as examples including service provision (such as the policy on reducing inappropriate use of antipsychotics or the policy in timely diagnosis) and research.

This is within the construct of a major worldwide drive to innovations in service provision and research (as for example described here in a report on a workshop on “Enhancing Translational Research and Clinical Development in Alzheimer’s Disease and other Dementia: The Way Forward”, held on 11-12 November 2014, Lausanne, Switzerland.

 

 

Chapter 17 looks at how leadership could be promoted by people living with dementia themselves. I first introduce the need for this in Chapter 2. Chapter 17 considers who might lead the change, where and when, and why this change might be necessary to ‘recalibrate’ the current global debate about dementia.

 

Finally, I attempt a Conclusion at Chapter 18.

 

Living well with the dementia app. Back to the future?



Various inventions were predicted for 2015 in the film “Back to the Future”.

Of course, an invention is not the same as an innovation.

There is a subtle difference between these two words, but the difference is an important one.

An invention is the formulation of new ideas for products or processes, but an innovation is all about the practical application of new inventions into marketable products or services.

According to top HSJ pioneer, Dr Amir Hannan, innovation has a specific definition.

About doing or making something completely new that has never been done before, which leads to a material change in thinking, behaviour or outcomes.

One of the brilliant inventions/innovations was the “hover board”.

hoverboard

Probably a good thing these haven’t been invented for the mass market yet – though some clever bod has come up with a prototype – the baggy jeans and Converse look is just so Nineties.

 

 

The background to the modifiable factors relating to dementia are well rehearsed.

Approximately half of dementia cases might be attributable to known modifiable protective and risk factors (Smith and Yaffe 2014). The protective factors include the factors that determine brain development in early life such as maternal nutrition and health, and nutrition and cognitive development in early years. Education and lifelong learning also protect against dementia as does involvement in social networks. The risk of dementia is raised by substance abuse in adolescents and young people, head injuries and depression. Dementia also shares important risk factors with the major non-communicable diseases (NCDs) including cardiovascular disease, diabetes, cancers. These are the behavioural risk factors of physical inactivity, smoking, alcohol and poor diet, and the linked intermediate risk factors such as high blood pressure, raised cholesterol and obesity.

There has been some difficulty in getting this relatively simple public health message across.

This is illustrated, for example, by the rather resistant belief amongst people that ‘nothing can be done about dementia’. In fact, an enormous amount can be done to promote living well with dementia. And some factors may indeed slow rate of progression or delay onset, in a way we don’t properly understand yet.

Some campaigning initiatives have started to gain momentum, though. This infographic is from the Alzheimer’s Disease International “World Alzheimer Month”.

reduce the risk

And there are developments afoot in the provision of information for patients.

Here’s an example of what Highbury Grange Medical Practice seem to be offering.

The aim is for all patients in England will have access to their GP medical records online by 31st March 2015.  This means you can have secure access to relevant parts (current medications, immunisations and allergies)of your record from devices that can access the internet.

And now Sir Bruce Keogh has got really into ‘wearable technology':

It sounds reasonably convincing.

Prof Sir Bruce Keogh believes that gadgets similar to fitness trackers, which are growing in popularity, and others resembling games consoles will revolutionise the monitoring of patients’ health, especially those with a serious condition.

And…

“Technology is emerging which enables those to be brought together and transmitted through mobile phones or other methods where health professionals can analyse them and act upon any warning signs,” Keogh says.

Wearable technology could easily prove useful for people with heart failure – one of the most common causes of admission to hospital – and thus relieve the strain on overcrowded hospitals.

“I see a time where someone who’s got heart failure because they’ve had a previous heart attack is sitting at home and wearing some unobtrusive sensors, and his phone goes, and it’s a health professional saying: ‘Mr Smith, we’ve been monitoring you and we think you’re starting to go back into heart failure. Someone’s going to be with you in half an hour to give you some diuretics’,” says Keogh.

Technology “enables you to predict things, to act early and to prevent unnecessary admissions, thereby not only taking a load off the NHS but, more importantly, actually keeping somebody safe and feeling good”.

For people living well with dementia, simple apps could be made which could be installed on smartphones.

smartphone apps

For certain persons living with dementia, prone to “wandering” (a term I very strongly dislike), GPS location devices might be of interest; but by no stretch of imagination are these devices relevant to all people living with dementia.

The app might also be able to monitor aspects of cardiovascular health. There is a strong link between cardiovascular health and cerebrovascular health, and indeed the success of tackling cardiovascular risk factors in primary care has caused some interest in the possible falling in England of the prevalence of dementia.

I have often ‘complained’ to other specialists in dementia how little we know about how easily people living with dementia, across different types of dementia, at different extents of ‘severity’, cope with all technology designed to help them live with dementia.

But it is possible that such apps could be designed to be compliant with the Equality Act (2010), offering giant lettering for those people with visual object perception problems, or ‘read aloud’.

There could be a set of questions like ‘Do you have trouble remembering dates?’, ‘Do you have problems remembering phone numbers”, “Do you have problems cooking?”, which could trigger further intervention by a community occupational therapist.

If someone living with dementia notices their legs going stiff, or they have trouble walking, a referral to a community physiotherapist could be triggered.

If someone living with dementia notices the development of a ‘sweet tooth’, a referral to a community dietitian could be triggered.

And so on.

There might be ‘menus’ which are more suitable to caregivers, who are often spouses, or children (particularly daughter and daughter in laws), but including paid carers. There are clearly ethical issues here.

I anticipate such apps will be of interest to people who’ve just been given a diagnosis of dementia, but the usual criticisms will hold (i.e. it’s another ‘to sell’ to someone with a personal budget, it’s “typical privatisation of health and care). But I feel we should be looking into the social prescribing of facility to those who desire them, as an alternative to expensive drugs which can have limited efficacy.

Back to the future..

or back to planet Earth.

 

 

 

 

 

 

Further reading

Smith D. and Yaffe K. (2014) Letter: Dementia (Including Alzheimer’s Disease) can be Prevented: Statement Supported by International Experts. Journal of Alzheimer’s Disease 38: 699–703 DOI 10.3233/JAD-132372

 

 

 

 

Leading Change in Dementia Diagnosis and Support: Actions to Inform Future National Strategy



It is estimated that in 2015 there will be 850,000 people living with dementia.

Having decided at the beginning of last year that I would to any conferences on dementia, I found myself attending the Alzheimer’s Show in London Olympia and Manchester; the Alzheimer’s Association conference in Copenhagen of a book signing, Alzheimer’s Europe conference in Glasgow (which was themed on autonomy and dignity; and human rights), Alzheimer’s BRACE in Bristol on the future, Dementia Action Alliance Annual conference 2015 and the Dementia Action Alliance Carers’ Call to Action 2015. So, in other words, I utterly failed.

I will be a guest on a panel in the plenary discussion for “Leading Change in Dementia Diagnosis and Support: Actions to Inform Future National Strategy” to be held at the King’s Fund on Tuesday 24th February 2015.

Full details of this one-day conference are here.

The hashtag for this event is

#kfdementia

.

Details of our discussion are as follows.

3.40pm Panel discussion: shaping a new national strategyTake this opportunity to put your comments and questions to our expert panel about the key issues that need to be addressed when designing and delivering the next national strategy. George McNamara, Head of Policy and Public Affairs, Alzheimer’s Society in conversation with:

  • James Cross, Area Manager and National Lead for Dementia and Mental Health, Skills for Care
  • Rachel Niblock, Carer’s Call to Action Coordinator, Dementia Action Alliance (invited)
  • Gary Rycroft, Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
  • Beth Britton, Expert by Experience

Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger

  • Dr Shibley Rahman, Academic in Policy of Living Well with Dementia
  • Chris Roberts, Expert by Experience

Chris is in his early 50s and is living with young onset vascular dementia. Chris is a dementia friend champion and writes a regular blog to raise awareness.

The following are very familiar “mutual tweeps” to me, and I wish them all well for their involvement on the day too.

  • Professor Alistair Burns (@ABurns1907), National Clinical Director for Dementia
    NHS England and Professor of Old Age Psychiatry, University of Manchester
  • Jean Tottie (@Jean_Tottie), Chair of the Life Story Network and Former Carer
  • Jeremy Hughes (@JeremyHughesAlz), Chief Executive, Alzheimer’s Society
  • Dr Martin Brunet (@DocMartin68), GP, Programme Director, Guildford GP Training Scheme
  • Rachel Thompson (@raheli01), Admiral Nurses Lead, Dementia UK (invited)
  • George McNamara (@George_McNamara), Head of Policy and Public Affairs, Alzheimer’s Society
  • Richard Humphries (@RichardatKF), Assistant Director of Policy, The King’s Fund
  • Beth Britton (@BethyB1886), Expert by Experience
    Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger
  • Gary Rycroft (@garyrycroft), Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
  • Chris Roberts (@mason4233), Expert by Experience
  • Tony Jameson Allen (@SportsMemNet), Director, Sporting Memories Network, and Winner of the Best National Initiative Award at Alzheimer’s Society National Dementia Friendly Awards 2014

 Last year, I got off my backside and published my first book on dementia. Called “Living well with dementia: the importance of the person and the environment“, the aim of it was not to sell the ideology of ‘person centred care‘. It was instead a well meant introduction to the original work of Prof Tom Kitwood and personhood, which has been pivotal in double declutching away from the Pharma stranglehood on dementia postdiagnost pathways. My point was that a person living with dementia had a past and present which were going to influence his or her future, and an interaction with the environment (such as the outside world or ‘built environment’, assistive technology, design of the home, design of the ward, dementia friendly communities) were major determinants of a positive wellbeing.

The book was broad-ranging, and I felt signified a change in direction of the narrative away from ‘treatments for dementia’. I also tried to cover in a balanced and fair way how the National Screening Committee had arrived at their original decision not to recommend screening for dementia. This decision has now been upheld. As it happens, I agree with the conclusion of the National Screening Committee, but for slightly different reasons. I feel a lot of people focus on the lack of sensitive and specific inexpensive screening tests – and this must be correct. But I also feel that because of the minimal effort to build up an extensive coherent evidence base on the effect of psychosocial interventions on living well with dementia, you are never going to be able to satisfy the last requirement, of improving morbidity (if you cannot improve mortality).

I have previously written about this here.

I essentially don’t want to rain on the parade of wanting to find a cure or effective symptomatic treatments before 2025. But this expectation, I feel, has to be much better, as the track record in developing treatments thus far has been poor. It is now well appreciated that G8 dementia was ultimately contrived as a reaction to Big Pharma on dementia, and it must be acknowledged, I feel, resources allocated into Pharma should not be at the expense of relatively inexpensive methods for promoting living well with dementia for people who are currently living with a diagnosis.

My original contents were therefore as follows:

Foreword by Professor John R Hodges; Foreword by Sally- Ann Marciano;Foreword by Professor Facundo Manes; Acknowledgements; Introduction; What is ‘living well’?; Measuring living well with dementia; Socio-economic arguments for promoting living well with dementia; A public health perspective on living well with dementia, and the debate over screening; The relevance of the person for living well with dementia; Leisure activities and living well with dementia; Maintaining wellbeing in end-of-life care for living well with dementia; Living well with specific types of dementia: a cognitive neurology perspective; General activities that encourage wellbeing Decision-making, capacity and advocacy in living well with dementia; Communication and living well with dementia; Home and ward design to promote living well with dementia; Assistive technology and living well with dementia; Ambient assisted living and the innovation culture; The importance of built environments for living well with dementia; Dementia- friendly communities and living well with dementia; Conclusion; Index.

The essence of my emotions about ‘living well with dementia’ is that living well with dementia is not a slogan to sell a product or service. It is a genuine change in philosophy from the medical model, of diagnosis and treatment, to one which requires a long term care revolution.  As Prof Sube Banerjee said last year at the Dementia Action Alliance annual conference, we don’t need high volume diagnoses which are of low quality; although we all agree that it is unacceptable that people should be languishing for ages waiting for a diagnosis, and diagnostic rates of people who want to be diagnosed appear poor. We need high quality diagnoses. And even Baroness Sally Greengross, the Chair of the All Party Parliamentary Group for dementia, readily admits that the post-diagnostic care and support could and should be much better.

Against quite a lot of resistance from people in the medical profession which at best was complete indifference and lack of recognition of my work, I found many people in the general public who have thanked me for my work. I am completely independent, so I do not draw an income from any of my work apart from minimal royalties for the book. I paid my way to go to all conferences I went to last year. I will again be paying my own way for travel and accommodation to go to the 30th Alzheimer’s Disease International conference in April 2015 in Perth, on “cure, care and the lived experience.

I was specifically asked last year by a panel representing the General Medical Council which people had benefited the most from my book. They expected me to say Doctors, but in all honesty I reported that the book had been extremely positively received by caregivers and people with dementia.

And I was staggered when a colleague of mine sent out this innocuous tweet which was well receive which had 151 ‘favourites’.

tweet

I do passionately want things to change for people with dementia and caregivers, but I don’t think of myself as a player in change. I don’t call myself anything in wanting change to living well with dementia; this is particularly because I really don’t believe in job descriptions or titles. I get fussy about the fact I am a person living well with recovery from alcohol, and physically disabled, but I am not ‘ill’ and as such I don’t see myself as a ‘patient’. I am on the medical register, but I do not feel defined by that (I have spent a few years not on the medical register due to consequences from when I was actually exhibiting symptoms of an illness). I have written numerous papers and two books on dementia, but I do not see my self as an ‘academic’. But I am hugely passionate about English and global policy.

I don’t want post-diagnostic care and support in my jurisdiction to be so haphazard. I totally sign up to the drive towards better inclusivity and accessibility for people with dementia, but I personally wouldn’t call this policy drive in this country or abroad “dementia friendly communities”. I would feel uneasy with a policy called “black friendly communities” or “gay friendly communities”, as these terms encourage division for me. Besides, I know from my personal experience with disability that all manifestations of disability are not necessarily evident to external observers. To take as an example, I see double all the time due to a problem with my brain, after my six week coma due to meningitis in 2007 when I was in a coma. But no-one, from looking at me, would know that. I understand that some people who are disabled, even if they fit the ‘criteria’ of the term, do not wish to call themselves ‘disabled’.

But the point is that there is now extensive legal advice about the relationship between equality and human rights law and mental health (for example chapter 3 in the new code of practice over the Mental Health Act just published). I have in fact been invited to be on a panel to review what I anticipate to be a very influential document looking at how the law is influencing dementia policy from the Mental Health Foundation early this year. Putting this stuff on a legal footing means that it’s a serious requirement for facilities to be more than aspiration in meeting ‘dementia friendliness‘; it then becomes a legal obligation. Under this view, one would provide adequate signage for people known to have spatial navigation difficulties from a dementia, in the same way that you might build a wheelchair ramp for employees who used wheelchairs in your company.

I feel that this narrative is moving my way, and in the direction away from being given your diagnosis and the conclusion ‘nothing can be done’. Kate Swaffer, in Australia, has elegantly articulated this in detail as “prescribed disengagement” (for an excellent article on this, please see here). Kate has also written a paper on stigma in the Dementia Journal, which is particularly interesting as Kate lives with a dementia herself.

It is a general ignorance of dementia that was thought to contribute to stigma and discrimination against dementia. I often ask London cabbies what they know about dementia; these individuals tend to be extremely well informed about many things, but I have found that unless they have a personal ‘connection’ with someone with dementia they can know very little (but are extremely regretful about not knowing more). The “Dementia Friends” in the UK jurisdiction had an aspiration of making one million ‘dementia friends’, a figure arbitrarily plucked out of nowhere, but presumably based on the successful Japanese “befriending” campaigns.

They had a target of one million ‘dementia friends’ by March 2015 originally, but I understand that this initiative will now run for the whole of the year. And, at the time of speaking, they look as if they might just make it, according to their website:

friends

I am a “Dementia Friends Champion”. I did my own Ph.D. in dementia at Cambridge under Prof John Hodges. I was the first person in the world to suggest a cognitive method for diagnosing behavioural variant frontotemporal dementia and explain its rationale. This paper is even cited in the chapter on dementia in the current Oxford Textbook of Medicine. I quite enjoy my sessions. I invariably get asked tougher questions in these sessions, which are well received, than I have ever received in academic conferences.

I have no doubt whatsoever that England will have its second national policy soon for 2015-20. An influential report from Alzheimer’s Disease International looked at the value of national plans in an excellent report last year. I have no involvement with the formation of the new strategy, but the composition of the group has been clearly provided.

Members of the ‘Dementia Advisory Group’ are:

  • Chair Clara Swinson, Department of Health
  • Deputy Chair Lorraine Jackson (Deputy), Department of Health
  • Jeremy Hughes, Alzheimer’s Society
  • Tom Wright, Age UK
  • Helena Herklots, Carers UK
  • Bruce Bovill, Carer
  • Joy Watson and Tony Watson, person living with dementia and carer
  • Graeme Whippy, Lloyds Banking Group (representative from the PM Challenge Dementia Friendly Communities Champion Group)
  • Sarah Pickup, Hertfordshire County Council (representative from the PM Challenge Health and Care Champion Group)
  • Martin Rossor, UCL (representative from the PM Challenge Research Champion Group)
  • Paul Lincoln, UK Health Forum
  • Helen Kay, The Local Government Association
  • David Pearson, The Association of Directors of Adult Social Services
  • Hilda Hayo, Chief Executive of Dementia UK
  • Graham Stokes, Chair of Dementia Action Alliance
  • Dawn Brooker, The University of Worcester
  • Martin Knapp, London School of Economics
  • Tim Parry, Alzheimer’s Research UK
  • Simon Chapman, National Council for Palliative Care
  • Jill Rasmussen, Royal College of General Practitioners Dementia Champions
  • Martin Green, Care England
  • Bridget Warr, UK Home Care Association

The terms of reference are here.

It is stated that the Advisory Group will:

1. Review the evidence on progress on dementia care and support over the last five years to identify where progress has been made, key challenges and gaps and priorities for action. This will include looking at the evidence on risk reduction and how the incidence of dementia could be reduced.

2. Consider what success could look like by 2020 in the following broad areas:

  • Improving the provision and continuity of personalised health and social care for people with dementia and carers – this includes risk reduction, prevention, diagnosis, post-diagnostic support, the role of technology and new models of care.
  • Promoting awareness and understanding.
  • Building social engagement by actions of individuals, communities and businesses.
  • Boosting dementia research capacity and capability, the opportunity for individuals to get involved in research and optimising knowledge transfer and pathways to impact.
  • Improving support for carers including improving their health, wellbeing and experienc
  • Cross-cutting: Supporting the education, training and development of the health and care and wider workforce.
  • Cross-cutting: Global action on dementia
  • Cross-cutting: Ensuring equity of access, provision and experience

This will include looking at what we can learn from international evidence and experience.

I feel that this would form a coherent strategy.

Whilst traditionally, it might be useful to consider campaigning for dementia in terms of ‘cure’, ‘care’ and ‘prevention’, in reality living well with dementia potentially straddles all three areas.

I believe it’s extremely important to have a large body of people with dementia and carers report back on what their needs are. Such committees have had a long history of involving people with dementia and carers which might appear tokenistic. The World Dementia Council has not even appointed a person living with dementia to sit regularly on their Council.

As far as future post-diagnostic care and support is concerned, we clearly can no longer have a situation where, once a diagnosis is made, some people with a diagnosis, friends and family are totally lost in the system, or even at worst lost to follow up. There appears to be little coordination of care, and sometimes there’s more signposting to services than actual services. There seems to be little coordination of information held for practitioner and professional care in primary and secondary care, and between health and social care. We have a ridiculous situation where people with dementia, some of whom can do very badly when they are admitted to hospital partly due to a distressing change in environment, cannot be discharged in a timely manner from hospital due to social care cuts in service provision.

There is a clear drive to person-centred care, and I feel a very good way of discovering personhood is to adopt a ‘life story’ approach. I anticipate that networks for life story and carers will be invaluable during the lifetime of the next parliamentary term 2015-20.

The current Government has continued with the longstanding policy drive towards personalisation promoting ‘choice and control’. However, there are nuances to how policy can be implemented; for example a rights-based advocacy approach might be considered by some preferable to the promotion of personal budgets, which poses issues about the lack of universality of care, scope for co-payments, further marketisation, and complete lack of choice if you run out of money.

The next Government will be bequeathed developments in the handling of NHS data for service care provision, and of course the new Care Act. Some reflections are here on the Care Act:

I feel the the main challenge, in my opinion, in policy is to introduce safely and in a competent way “whole person care“. It’s going to take a lot of bottle to integrate properly health and social care, with all the challenges which endure, including breaking down organisational boundaries, cultural silos, facilitating competent knowledge sharing sand transfer, and a complete cultural change unfreezing from the biomedical model to one which recognises abilities not making feel inadequate because of their disAbilities. I would very much like to see the medical profession put some effort into the annual ‘follow up’. The point of this check up is not to chart with meticulous accuracy has changed in brain scans, psychology, or blood tests, meritorious though these initiatives are. The point about these follow ups is to ensure that there is a synchronised system of post-diagnostic care and support and everything is being done to improve living well with dementia (for example encouraging social networks and mitigating against social isolation). I feel personally the next Government should implement a “year of care” for dementia.

This change can only come from a social movement led by the major stakeholders themselves – people living with dementia and caregivers. A “top down reorganisation” will not work.

And I would prefer leaders in dementia not to be a Prime Minister but in fact to a person living with dementia. I think that way the needs of people currently living well with dementia will be better addressed, not just in service provision but also in research spend. I believe strongly that people newly diagnosed should have access to ‘dementia advisers’ and a properly resourced network of clinical nursing specialists. These nursing specialists are vital in pro-active case management, but the evidence base does need exploring further. The development of the personalised care plan, which can hopefully avert crises to encourage relaxed effective care out of hospital where possible. I have written about dementia specialist nurses, previously, here.

My interests are reflected in my new book ‘Living better with dementia: looking to the future’ due to be published on June 18th, 2015.

The contents are here.

1. Introduction. 2. Framing the narrative for living well with dementia. 3. Thinking globally about living well with dementia. 4. Culture and living well with dementia. 5. Young onset dementia and living well with dementia. 6. Delirium and dementia: are they living well together in policy. 7. Care and support networks for people living with dementia. 8. Introduction to autonomy and living well with dementia. 9. Can living well with dementia with personal budgets work? 10. Incontinence and living well with dementia. 11. Nutrition and living well with dementia. 12. Art and creativity in living well with dementia. 13. Reactivating memories and implications for living well with dementia. 14. Why does housing matter for living well with dementia. 15. Networks, innovation and living well with dementia. 16. Promoting leadership. 17. Seeing the whole person in living well with dementia. 18. Conclusion.

I think this book is more ambitious than the first one. In keeping with my original research interests, I consider why art and music are so important for living well with dementia. I also propose a new theoretical framework, the first in the world to my knowledge, why reactivation of “sporting memories” works. The “Sporting Memories Network” has been a very impressive initiative thus far in promoting wellbeing.

Finally, I wish everybody luck in formulating our new English dementia policy to be implemented within the lifetime of the next Government. It is imperative that the views of the community of people living with dementia and the army of approximately 5.4 million unpaid caregivers are prioritised above the needs of others, I feel, above all.

Can #thoughtdiversity promote employment for persons living well with young onset dementia?



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Thought diversity“, I feel, is fundamentally in tune with what I feel about the ethos of living well with dementia: recognising what people can do, rather than what they can’t do.

This is particularly useful in one particular context. The general topic of thought diversity in the workplace recently has received some deserved attention. There are two important approaches in this context of performance management in the workplace: equality and diversity.

I am certainly not about to suggest what an employer should do; nor what a person who may be about to receive a diagnosis of probable young onset dementia might do. I am just going to think about how thought diversity could be used to produce an effective skills mix for the employer, so that any individuals with young onset dementia can still contribute to the full.

 

Equality legislation

 

Equality tackles an imbalance where some people may be considered treated badly due to the effect that a protected characteristic has (such as age, sexual orientation, or race, for example); diversity is simply accepting that everyone is different. Legally, dementia can be defined as a disability under the guidance of the Equality Act (2010).

It is essential to recognise the functioning of the Equality Act (2010) for dementia. Disability is a “protected characteristic” under that statutory instrument. Prohibited conducts, like indirect or direct discrimination, are unlawful; reasonable adjustments must be made for disability. The Act specifically states that employees are under a duty to take reasonable adjustments to provide aids/ auxiliary services if these could alleviate any disadvantages and costs and not be passed on to the employee.

 

What is this equality?

But in political philosophy, the question has, in sophisticated circles, become “equality of what?”

As Anne Phillips describes in a paper for the London School of Economics:

“Two themes have become part of the common-sense in current thinking about equality.

The first is that defining equality in terms of outcome – equalising where people end up rather than where or how they begin – displays a distressing lack of sophistication.

Such a definition immediately begs the question of what we are seeking to equalise (income? happiness? welfare?), and seems to forget that measures to deliver equality on one of these metrics will deliver inequality on another.

Equalising resources notoriously overlooks the diversity of preferences and tastes: since what people want varies enormously, any strict division of the world’s resources will leave each of us with an excess of what we consider worthless and probably too little of what we really desire.

Yet if we turn instead to equalising people’s sense of well-being, we may end up giving more to the constitutionally dissatisfied than to the easily content. Defining equality in terms of outcome presumes an easy answer to the ‘equality of what?’ conundrum, gliding over complex issues of what equality means.”

The “equality of outcome“, for example, causes a particular controversy, arguably.

“Researchers concluded that equality of outcome was patronising, humiliating and embarrassing to minority groups. It could be socially divisive and evidently fuelled hostility and resentment in areas where prejudice previously did not exist as a serious social problem.”

 

An approach based on equality for young onset dementia

The basic accusation is that attempts for equality end up being rather artificial, but it is true that treating dementia as a disability to promote equality, arguably, must be a more useful starting point that a policy where citizens are merely “friendly” to people living with dementia with cognitive impairments such as problems in memory. Dementia is consideredyoung onset’ when it affects people of working age, usually between 30 and 65 years old.  It is also referred to as ‘early onset’ or ‘working-age’ dementia. And it might appear meritorious for an employer to everything in his or power to keep a person with young onset dementia in a job, by providing ‘reasonable adjustments’ such as adequate signage, diaries or memory aids.

But is this approach based on equality necessarily the right approach?

It’s already conceded there’s a fair distance to go to make enforcement against disability discrimination offences a reality. Making goods and services easier for disabled customers has been a policy rumbling on for some time (see for example this document). Only last month, it was described yet again that access for disabled citizens to high street shops was “shocking”. The legal underpinning of this failure in equality is in contrast to the aspirational nature of ‘dementia friendly communities’ involving high street shops, such as in Fareham. In theory, it is all very well to say that an employee newly diagnosed with young onset dementia should be given reasonable adjustments as dementia is a known disability.

But there are some problems here. Some people with ‘soft symptoms’ may not wish themselves to be labelled with a disability, or a diagnosis, even if this means that they might be able to access certain finances. Also, in the majority, people with cognitive problems, who later go onto receive a diagnosis of young onset dementia formally, leave formal employment long before they receive that formal diagnosis (at which point the reasonable adjustments would have kicked in). We all know of employers who would really not want the bother of having to make reasonable adjustments, either for a person developing a dementia. And we know that all sorts of excuses tend to crop up prior to appointment of some employees in the first place. Somebody applying for a job, who is open about the fact he may be developing an early dementia, is unlikely to receive a sympathetic hearing in shortlisting.

 

But hold on a minute. Is it actually the employers’ fault?

The situation is very serious.

Kate Swaffer describes, through the construct called ‘prescribed disengagement‘ she was the first in the world to articulate, how people who have received a diagnosis of young onset dementia are, rather, actively encouraged effectively to give up by professionals in the health and care sectors. Work engagement, with some focused attention, could conceivably work though the strong determination of employers. For example, Robertson and colleagues (Robertson, Evans, and Horsnell, 2013) recently described an innovative demonstration program called “Side by Side” that was initiated to assess the feasibility of supported workplace engagement for people with younger onset dementia. This is truly laudable. People with young onset dementia, even if they have been demoralised by a cultural phenomenon of ‘prescribed disengagement’, might instead be encouraged to pursue positions in their current place of employment playing on their cognitive strengths. And this is recognised in ‘thought diversity’.

 

Is #thoughtdiversity a better option?

According to Deloitte’s excellent paper on ‘Thought Diversity’, acknowledging different thinking styles or cognitive diversity can beneficial for organisations to ‘hire differently, manage differently, promote differently’. In other words, employees can be matched up to tasks according to their cognitive strengths, and this includes people living in early stage young onset dementia. Such an approach would be more positive, beneficial for the employer and employee, focusing on what a person living well with young onset dementia can do, rather than what he or she can’t do. Such a workforce, it is anticipated according to Deloitte, might show greater resilience, and also be far less prone to ‘group think’.

I feel we do need to think ‘outside the box’, innovatively, to think how we get the best out of people. People who are about to receive a diagnosis of dementia may wish to stay in employment for as long as possible, as that is where friends are made, and of course the source of income comes at a critical time when there might be other commitments such as family, a mortgage or pension. Human resources will in time need better tools for identifying different cognitive styles. There will be in any team people who are more suited to remembering things, people who are good with words, people who are good with planning. Cognitive assessments, whether relatively informal psychometric tests for different cognitive styles or more detailed, might be able to identify what individuals are good at, such that a team might as a whole consist of the ‘right skills’ and might display cognitive diversity. This would, I feel, be an altogether more constructive to approach the issue of employment for people with young onset dementia, based more on diversity than legal equality.

 

 

 

But I do think both employer and employee need to know that these legal equality rights do exist, as they are potentially extremely powerful indeed.

 

Reference

Robertson, J., Evans, D., Horsnell, T. (2013) Side by Side: a workplace engagement program for people with younger onset dementia, Dementia (London), 12(5), 666-74.

 

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