Dementia as a disability needs to encourage sustainable achievable goals

Earlier this year, Jessica Kingsley Publishers published my book ‘Living better with dementia: good practice and innovation for the future’.

As in previous work of mine, I wished to emphasise that the ‘nothing can be done for people with dementia’ philosophy is wrong. In fact, there is currently a legal obligation in England and Wales for any entity subserving a public function to obey the regulations of the Equality Act (2010). At an international level, the significance of viewing dementia through the prism of disability is further emphasised in a joint statement from Alzheimer’s Disease International and Dementia Alliance International published today.

Under this instrument, it states clearly that dementia is a disability. The consequences of this legally is there’s an obligation to make ‘reasonable adjustments’ for people living with dementia, treating any cognitive disability on par with a physical disability. In the same way you would implement wheelchair ramps to allow equal access to your buildings for your employees, you’d also give them the best way for them to do their job – if they needed, say, aids in reading out text on a computer.

Not all rights are enshrined in law, by any means, and there is the unintended consequence that laws which are not enshrined in law are perceived as not worth worrying about. But this is actually far from where we are on disability law. The United Nations in fact observes the International Day of Persons with Disabilities on Dec 3, 2015, and it can be tempting to see this arm of work as somehow totally different from other work such as “age friendly cities”. Rights are an important basis of advocacy, and I was determined to emphasise the rights agenda in my book – here’s an extract to explain.

This year, three themes are highlighted in the agenda: making cities inclusive for all, improving disability data and statistics, and including those with invisible disabilities in society and development. Of course, we don’t just have ‘age friendly cities’ or ‘dementia friendly cities’. You can develop a dementia at any stage, though the risk of developing dementia gets bigger as you get older. Dementia is not just something ‘old people get’. And we should be thinking about making all communities not just cities ‘friendly’, but a better philosophy is to require communities to be accessible and inclusive.

This cartoon conveys the sentiment felt by many of us: “dementia friendly communities” should be good for everyone, and the label jars uncomfortably with the aspiration not to label persons by their label – or specifically medical diagnosis.


These themes echo the specific mention of persons with disabilities in five of the Sustainable Development Goals (SDGs): education; economic growth and employment; creation of inclusive, safe, resilient, and sustainable cities; reduction of inequalities; and data collection related to monitoring the SDGs. I think this is particularly important as dementia does not just affect people in more economically developed countries. All of us in policy need to make better links between the sustainable development goals and the ‘dementia friendly communities’, and to think especially how people living in low and middle income countries (LMIC) may also benefit from current initiatives too. I think the ‘care for today, cure for tomorrow’ oversimplifies the current situation, but through the sustainable development goals we have a means of achieving something sustainable and measurable.

Meeting Tommy Dunne





I met Tommy Dunne, I think, the first time I met Chris Roberts. This was at the Alzheimer’s Show in Manchester.

I met Joyce and Jayne there too.

Whilst the first time I met Tommy he told me how he received his diagnosis of dementia, I think our conversations have since then covered quite a range of topics. There’s absolutely no doubt that Tommy loves Everton; and Liverpool; and golf.

Tommy will explain to you, if the conversation comes up, how he was given the diagnosis with the words: “The good news is that you don’t have bipolar; but the bad news is that you have young onset dementia.”

There’s no reply to that really. I think as more research gets done we’ll uncover that there are many more people beneath the age of 65 who are living with dementia.

I have found all the individuals I’ve ever met with young onset dementia very interesting, in fact, but all very different. Invariably, they tell me how their diagnosis totally turned upside down their social and working lives, including interaction with friends and the employer.

Tommy mentions in this video (above) how his dementia was misdiagnosed as a mood disorder. I have found this quite common in fact, and on deeper inquiry I found this to be quite a consistent strand in the literature too.

This means that people with young onset dementia, including Alzheimer’s disease or vascular disease, get told they are primarily depressed or manic by the medical profession. Not only are they potentially given the wrong management, but they are also denied the actual correct way to progress.

There is no ‘right or wrong’ answer on the correct way to progress, but generally the approach is to value what people can do rather than home in on what people can’t do. This means playing to people’s strengths, not weaknesses.

An ability to live better with dementia is of course the essence of a ‘dementia friendly community’. It will have given Tommy enormous pride, as it will have done for Gina Shaw who is equally lovely, to receive one of the ‘Dementia Friendly Awards’ from the Alzheimer’s Society for the SURF project.

The best way to learn about what it’s like to live with dementia is simply to ask as many people you can about living with dementia. People closest to them, including friends and family, will give you a complementary perspective too. This is not information you can get from any books.

Meeting the person rather than fixating on the disease is not, however, to ignore the health and wellbeing needs of that person. People living with dementia and carers also get ill like everyone else, say with an acute exacerbation of bronchitis or asthma, and are entitled to the best care from the NHS too.

It’s an honour to have met Tommy and Joyce. The work that they both do to promote an understanding of dementia is incredible.

It’s not hyperbolic for me to say that I’m proud I know them.

In ‘dementia friendly communities’, it’s how we relate to one another which really matters

I actually don’t know what ‘a better shopping experience’ is, although I’ve had plenty of awful shopping experiences down Oxford Street in the run up to Christmas. Joking aside, despite the developments in anti-discrimination legislation in England for people with physical disability, there’ve been concerns that there’s still room for improvement.

Anecdotally, people living with dementia tell me that there’s been a huge ‘sea change’ in their shopping experience on the high street. Some of this might be due to the Prime Minister’s Dementia Challenge, or initiatives such as from the Alzheimer’s Society regarding ‘dementia friendly’ banks or businesses.

A major aim of the policy of ‘dementia friendly communities’ was originally to enable independent living, by having transport and housing which was ‘fit for purpose’. With the current problems in social housing nationally, and with cutbacks to certain transport infrastructure projects, it is utterly reasonable to think about how ‘friendly’ policy is, let alone ‘dementia friendly’.

Try listening to George Osborne’s budget this week through the prism of dementia friendly communities. Listen especially to the political rhetoric about ring fencing NHS spend (but probably not in reality at a pace in keeping with increased demand). And listen to the deafening silence about the continued cuts in social care.

One aspect of a community is the relation of members of that community with statutory services or other providers. If one takes a ‘supply side’ approach, you are meant to have better choice if there are more providers. Then you get into the language of the consumer and the market, and we end up going down a certain ally. ‘Dementia friendly businesses’ then exert competitive advantage by ‘adding value’, in other words by being civil to people with dementia.

But of course it should be more than that. People living with dementia in fact have civil rights – some of this comes from the law, some of these rights are moral rights. But whether your religion is the Human Rights Act, the UN Declaration of Human Rights, or the UN Convention on Rights for People with Disabilities, these rights definitely exist. In theory, they can be exerted through bodies such as the Equalities and Human Rights Commission, but the reality is that any law is as good as its implementation – take the national minimum wage for example.

Whilst dementia friendly communities had (and still does) have a thrust in promoting independent living, it’s also been mooted that care homes form a ‘community hub’. A big proponent of this idea is Prof Martin Green, Care England’s CEO. There’s a huge swathe pointing in the direction of why many would like living in a care home to be reconcilable with independent living.

For a start, residents in care homes are still individuals who are entitled to the best standards of NHS care. It’s said moving into a good care home should mean that all you’re doing is ‘changing your address’. There have even been yet further pilots looking at the implementation of personal budgets in care homes – but we’re all too aware of the direction of travel of these pilots. The aim is, somehow, to see ‘care homes’ de-institutionalised, a form of ‘home’ where there’s ‘care’.

At first blush, the term ‘dementia friendly communities’ is awful as it implies a ‘them against us’, with people with dementia identifiable as a single homogeneous mass. But I think the strength of the word ‘community’ comes from if we’re all considered as citizens, with equal participatory rights, bounded in powerful relations to one another.

It matters enormously that we understand culture and diversity. This is NOT so we understand ‘BAME’, ‘LBGT’, ‘low/middle income countries’, ‘young onset dementia’ and ‘prior intellectual disabilities’, in isolation.

Each member of these groups is an unique individual. We cannot homogenous all Asian people, in the same way we can’t homogenise all people above the age of 65, or all males. But these groups matter overall in understanding how the relate to others. This is NOT a case of meticulously charting their similarities and differences, but learning from each other so that we understand our community as a whole.

While I’m on the subject, if you’re a citizen who’s just been given a diagnosis of dementia, vast inequalities do exist in the quality of the diagnosis and ‘post-diagnostic support’ (howeverso defined). It’s crucial we begin to understand these inequalities to improve health and social care as a whole.

As is often the case, the whole is much stronger than its individual components.

Should there be a legal duty ensure people with dementia get help to manage their finances?

A press release on the new Scottish Social Attitudes report about dementia (and caring) was published late yesterday evening.

I found the findings very positive taken as a whole, in relation to the Scottish dementia policy transposing ‘dementia friendly communities’.

However, one of the ‘issues’ that dementia friendly communities as a policy was supposed to address still remains a stubborn problem area.

That is, a very large majority of people (83%) said they ‘agreed’ or ‘agreed strongly’ with the statement that ‘caring for someone with dementia is often very lonely’.

Latest initiatives such as TIDE, “Together in Dementia Everyday”, will be in this context most welcome. Joining up family carers in a support network is a very sensible thing to do, for a whole host of reasons.

Another finding for me was particularly noteworthy, although the findings on stigma continue to be of huge interest to me (especially in the area of employment especially for people with younger onset dementia).

That was, “88% of people thought that the Scottish Government should require banks to have a legal duty to make sure people with dementia get help to manage their finances.”

Any law has to be enforceable, so there are operational questions about how such a civil law would come to effect, taking offences on the civil standard of proof, the ‘balance of probabilities’.

A legal duty for banks to ensure that people with dementia get help to manage their finances assumes that such individuals can be easily identified. The first problem is whether a person with dementia will necessarily know they need help in managing their finances. For example, there will be some people with certain dementias with full capacity who feel they can manage their financial affairs.

On the other hand, there might be certain people with dementia who show a strong risk-taking or impulsive streak, but with full capacity, who are possibly ‘dangerous’ when it comes to managing their finances. It is impossible to offend autonomy for someone with full capacity (otherwise it becomes coercion or at worst assault). There’s currently a strong policy ethos, right I feel, that you can’t ‘wrap people up in cotton wool’ either: you need risk to live better with dementia, as I have long argued.

But, taking an offence into the realms of civil law, would make it easier to find banks culpable, in theory.

This is because the alternative might be a criminal offence, and that would have to be ascertained ‘beyond reasonable doubt’. We already know from the work of the Serious Fraud Office on how difficult it can be to make prosecutions using this level of proof.

The offences under the Fraud Act (2006) which would fall under this realm are not clear cut either: most lawyers feel the actual offences would be fraud by false representation, fraud by failure to disclose or fraud by abuse of position, but we have very little case law on this. We would have to revert to the original Law Commission guidance on the intent of the Fraud Act (2006), and the concomitant parliamentary discussions by the legislature behind the purpose of the Act.

The duty from the bank, however, could be legislated for as an extension of existant civil legislation, such as the Theft Act (1968), or could be a completely new stand alone statutory instrument.

And is the bank the correct defendant anyway? The experience of the Care Act in England has kept personal budgets in the limelight, with interest in safeguarding aspects. If more people take control of their own individual budgets, should the accountability for this budget transfer, from say a bank, to the holder of a personal budget or some appointed proxy?

Such a duty is an example of a ‘rights based approach’, further advancing the notion of people with dementia having enforceable rights. But there is a valid question here as to why this cannot be done under current legislation: in other words, why could a duty not be enforced under the obligation of reasonable adjustments under the Equality Act? It does not matter that banks are clearly doing a public function?

The report on social attitudes is undoubtedly welcome, and further strengthens the need for the ‘8 pillars of community support’ in the Scottish jurisdiction.

A single cure is not the only hope for living better with dementia

Many people living with dementia, having been told to expect the worst sometimes from some professionals, find themselves surprised when they’ve found they’ve met some nice people after diagnosis, and learnt new things.

And guess what?

You do not have to be religious to have hopes. Addressing emotional and physical needs are important for meeting hopes. If we talk about ‘burden’ all the time, we see the price and cost of everything and the value of nothing, to lean on a saying from Oscar Wilde. But, seriously, if you have problems with engaging with the notion of ‘hope’, pretend temporarily it’s “quality improvement”.

Hopes have to be meaningful. A hope for a better life cannot mean somebody inflicting on you ‘bingo’ or activities unless you happen to be interested in those activities in that particular time or place.

Hope might be wanting friends and family to be with you following a diagnosis of probable dementia.

Hope might be being inspired by people you respect. Here are Helga Rohra, Chair of the European Persons with Dementia group for @AlzheimerEurope, and Chris Roberts, Board Member of Dementia Alliance International (and Dementia Friends Champion, for example), who both live with dementia and spoke last week at the ADI international conference.


People’s hopes differ, but finding out what people’s hopes are is important.  To be valued, whether in employment or not, or in a loving relationship, is surely essential.

We recently stayed with Kate Swaffer, Pete and Boris up in Adelaide hills. I commend to you Kate’s recent post on living well with dementia, which concluded as follows:

“Feel free to call yourself or your loved one with dementia a sufferer, privately. It is disrespectful to feel so free to publicly label all of us living with dementia as sufferers. It seems unreasonable to me, that others get upset that some of us feel like we can live well or better, even with dementia. And this does not mean there are not many times where we do suffer, but to always label us all in that way, as if that is the experience of everyone, is unfair and disrespectful. Let those of us wanting to, live with enablement and hope.”

Life is complicated and unpredictable. I’ve long felt that anything can happen at any time.

I have real concerns about clinicians pinning all hope on a “cure”. A cure might bring hope, if properly defined; but we have to be able to say what a cure might look like, for whom. But there is no doubt that a cure perhaps to stop the build up any causative toxic agents in dementia in the brain would be great if appropriately timed, and if safe, and collaboration I feel is a ‘must’ for this hope to have lift off.


Moving the target from the “cure” to give people hope living with dementia, whichever one of the hundred of dementias that is, is not “giving up”. It is a fundamental reshifting of the narrative from the ‘managed decline’ philosophy of ‘prescribed disengagement‘ (as described by Kate Swaffer) to a genuine attempt to meet people’s beliefs, concerns and expectations.

An expectation might be for an employer to be sympathetic that a person who has just received a diagnosis of dementia is not wildly different to how he or she was just a few days ago.

That is, corporates, resources permitting, should be able to embrace ‘thought diversity’, and find a rôle for an employee which is most suited to someone’s cognitive abilities.

This is the fundamental aim of rehabilitation, and using an understanding of disAbilities to give control to people’s lives.

This is what I encountered many times in the Alzheimer’s Disease International conference last week at Perth, Western Australia, in discussions of “agency”. Mick Carmody is a person living with dementia from Queensland, Western Australia, who I have seen first hand to have benefitting hugely from encouragement from the Dementia Alliance International, a group of people living with dementia.


With many people with dementia facing an incomplete recollection of events, sometimes relating to himself or herself, facing the future can of course be demanding.

Fear is a historic theme.


But in the place of fear, some tentative plans can be made.

I spent this morning chatting with Prof Olivier Piquet at NeuRA here in Sydney, Australia.


Olivier happens to be known well to two colleagues of mine, Prof John Hodges and Prof Facundo Manes who wrote Forewords to my first book, “Living well with dementia”. Olivier explained to me a tranche of his research on the cognitive decisions involved in making plans for the future, whether or not demanding an assessment of risk.

I was familiar with this from another context: a failure to anticipate future outcomes from making dodgy decisions, which is what can happen following problems with the anterior part of the frontal lobe, at the very front of your brain. Of course, living life to the full involves some risk, whether or not you live with dementia.

I live in hope of certain changes to be made in world policy: that is a shift from ‘dementia friendly communities’ to ‘dementia inclusive communities’, for reasons I have recently described. The term ‘friendly’, with good intentions, oversteps the boundary concerning “otherness” for me.

But here Alzheimer Australia and the UK Alzheimer’s Society, for example, have made massive inroads I feel.


I personally derive hope from the people around me. I have double vision and am physically disabled, and in recovery from alcoholism, but I do not see myself as a ‘sufferer’.

Alice is ‘Still Alice’, and Richard is ‘Still Richard’.

Richard Taylor: I’m Still Richard from Dementia Mentors on Vimeo.

I have just spent two weeks in the company of the most wonderful people I have ever met, in fact.


England’s future strategy for dementia offers hope if articulated and implemented properly

What follows is a massive disservice as I take a policy wonk approach to outing the problems in our current English policy. You would better served in spending your time listening to Andy Tysoe or Tommy Whitelaw, whose efforts on dementia are truly remarkable. It is truly a sad indictment of our society that the impetus behind the G8 dementia and global initiatives in dementia may have been more to do with public-private handouts to boost an ailing industry, rather than a sincere wish to people currently living with dementia to live better. The “Prime Minister’s Challenge on Dementia“, from the Department of Health, Cabinet Office, and the Prime Minister’s Office, was probably more disappointing for what it didn’t say rather than what it did say.

The central issue for many is what the point of diagnosing a dementia is, “if nothing can be done about it“.

This might explain, in part, the policy stance that prevention of dementia, ‘healthy body healthy mind’, is a worthy cause. And indeed the policy initiative from the Blackfriars Consensus is helpful. In terms of opportunities for ‘wealth creation’, it offers opportunity for open innovations, such as ‘wearable technology‘, to come light and to become marketed. The present NHS sometimes appears to be more fixated about how much of its work can be exported abroad to make a profit than the effects of cuts on patient safety. That social care spending is now on its knees, consequent upon it not being ringfenced, is however a threat to patient safety; and the added legal problem with residential homes in private care is that information about staffing can be withheld from freedom of information requests due to being ‘financial sensitive’. Similarly, recent initiatives on whistleblowing, such as the Francis Review, have concentrated on toxic cultures in the NHS rather than residential homes. The NHS and care sectors are still likely to have patient safety problems, given the trend in the size of the NHS litigation budget. There is an argument for zero hour contracts in the care sector offering ‘flexibility’, but such arguments must be proportionate. For many, however, zero hour contracts offer poor job security. Many caregivers are below the national minimum wage. Carers do not have rights under the present NHS constitution. Currently, the system is kept afloat through the valiant work of a huge army of unpaid family caregivers, who often worry themselves about the lack of support they are given in doing their job. There needs to be a much more coherent framework of the regulation of paid carers, many feel, however, for the minority of caregivers who seem inadequately trained in dementia including risk assessment.

As a person living with dementia needs care needs, there is no doubt that the needs of carers need to be given a priority in a new English dementia strategy. Carers clearly do need support, not least because caring is psychologically, emotionally, financially, and physically draining. A person with dementia at some stage will be involved in a decision as to whether to stay at home, or to move into a nursing home or care home, for example. Unmet medical needs such as incontinence, falls or declining mobility often underlie why some people with dementia go into residential care. The reason many feel that post-diagnostic care and support is inadequate is because it is perceived that the organisation of it is haphazard, with stakeholders not communicating with one another. The silos cannot go on, and it’s not on that there seems to be no-one in overall control of dementia policy, or even directly accountable for it. The lack of communication between residential care in the community and acute hospital trusts helps to explain the logjam of some people with dementia experiencing delayed discharges. It is all very well to talk about ‘parity of esteem‘, but such calls sound hollow with slashes in funding in social and mental health care. And health is so much more than health and social care – it’s all to do with how we are able to lead our lives, including education, housing and transport, for example – and that applies to people with dementia and caregivers too.

Many people with dementia, and friends and families, feel that they have maximal involvement with the medical profession at the beginning and end of their experiences with dementia, with the annual check up serving little function other than to repeat investigations to emphasise what a person with dementia cannot do any longer. This is completely wrong, if you wish to reframe the argument from what a ‘dementia patient costs’ to what ‘value a person with dementia brings’. Add on top of this that the National Health Service is fragmented and geared up to be a ‘repair’ service rather than ‘care’ service. Sure, repair is important, but often repair can be avoided altogether if there is better proactive case management.  It is utterly deplorable that, even when the contributions of Marie Curie and Macmillan specialist nurses are undisputed, that there has been scant attention to the clinical outcomes and financial benefits of a national network of clinical nursing specialists (as described recently in the HSJ). The “Admiral Nurses” scheme would have massive benefit if England were to invest appropriately here. I am extremely grateful to campaigners such as Beth Britton for keeping the flame of reasonableness alive.

There is no doubt that the Alzheimer’s Society have assumed a market dominance, and this is of course good for the sustainability of this sector, but they must be able to campaign effectively on shortcomings of government policy, whichever government that is, to act as a good corporate citizen with license to operate and license to lead. Such a dominance in providers is not in the best interest of persons using the NHS, especially if the voluntary sector is to participate in clinical contracts (e.g. cancer care), so a preferred model of care to offer the post-diagnostic support infrastructure for dementia is likely to be alliance contracting as successfully implemented in other jurisdictions (e.g. New Zealand). English health policy is heading towards collaboration rather than competition, so it is important that service provision in dementia also takes the lead; legislation in England needs to give voluntary sector providers some long term security, such that they can develop the capacity to expand to help the NHS form resilient communities. A person-centred approach would mitigate against lack of continuity of care. Persons living well with dementia have a multiplicity needs, requiring the ‘whole person’ approach, not least reflected in numerous comorbidities. Part of the problem we have had in English dementia policy is the overprescription of antipsychotics (see the Banerjee report 2009), but if we invested in a workforce trained in personhood (using techniques such as life story) and addressed problems in communication, particularly in residential care settings, we could mitigate against such a high need need for antipsychotics inappropriately prescribed for alleged agitation and aggression.

I feel it is crucial now we take the NHS on a radical transformation from a patient-oriented service to a person-oriented one.  Broadening the explanatory perspective on illness to include social and psychological factors has expanded the remit of medicine into the realm of ‘healthy’ bodies. Again, this has been particularly evident in general practice. The promotion of wellbeing must surely be seen as integral to that. Wellbeing in general measures ‘individuals’ subjective perceptions that life as a whole is good’, thus there is a strong link to the fulfilment of needs. A biopsychosocial perspective alone is not enough for a full understanding of the patient’s experience of illness, which depends on his or her particular life story; for example rheumatoid arthritis in the fingers might have a more profound effect on a concert pianist than a long jump expert. Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different. A care and support plan should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person, and it should give parity of esteem to mental and physical health needs. But the ‘no decision about me’ has tended towards vacuous sloganeering – but it is quite telling that the World Dementia Council were so slow to appoint someone living well with dementia, and even then appointed someone who was not democratically elected. While I think the actual appointee is brilliant, it is hard to see how one voice can ‘represent’ the views of millions of people living with dementia worldwide without proper resource allocation.

Part of the reason that many people in the general public believe that ‘nothing can be done about dementia’ is the relentless framing of dementia in the media as ‘dementia sufferers’ or ‘X has lost his battle against dementia’, and news of the latest game-changing “breakthrough”. The raison d”être of ‘Dementia Friends‘ was to combat stigma and prejudice through educating the general public about give basic facts about the dementias, but there has never been any systematic peer-reviewed publication on these basic campaigning facts were chosen, or how effective the organisers of ‘Dementia Friends’ have been in seeing their pledges materialise ‘turning community to action’. I think it is laudable to reframe the discussion of public services, and I do sympathise with the view of David Willetts in ‘Civic Conservativism’ predating Cameron’s antidote to the Big State as the “Big Society” (see for example his noteworthy Hugo Young lecture). But I do draw short shrift at ‘death by information session’, dressed up haphazardly as “training”, in other words making the State impoverished and malnourished of resources.

Tweet source

Training tweet

In my view the workforce does need to be properly training in dementia from those who have been adequately trained (I admire Andy Tysoe as he is properly trained.) For every pound spent on developing a cure for dementia that’s one pound deprived from frontline care. I am very much enthused about the need for visionary basic research in dementia. I myself made a groundbreaking discovery in the diagnosis of the behavioural frontal variant of frontotemporal dementia, which is currently in the Oxford Textbook of Medicine. But we have an English dementia strategy which has benefited from corporate capture, regulatory capture and Big Charity capture. For every pound spent on the NHS on a medication for dementia which does not slow progression and only has a limited time window for the treatment of symptoms (according to NICE), that’s one pound being deprived for a ‘social prescription‘ which could actually improve the quality of life of someone living with dementia (such as an iPod). Social prescribing offers a prompt means of providing an alternative to medication, which is a way to avoid physical disease and mental illness even.

Here we do need above high quality research into living well with dementia which offers comparatively, in my view, the best return on investment; see the brilliant research, for example, from the “Dementia” journal.

We do need to “face the facts”, and dishonest politicians should come clean (with or without the assistance of Big Charity with vested interests in promoting neuroscience); see:

“Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, according to the study.

But please don’t get me wrong! I would be absolutely delighted if the medical profession were able to come up with a safe medication for Alzheimer’s disease which could cross the blood brain barrier (and a comparable treatment for the other 100 or so dementias).

There’s absolutely no doubt in my mind that communities can be “dementia supportive”, a term I prefer possibly to “dementia friendly”. The point here is that communities should be supportive as a matter of legal obligations, i.e. should not be unlawful in not providing reasonable adjustments under the Equality Act (as dementia is a disability), or living in a care home which do not meet basic human rights in dignity. Otherwise, it merely becomes a race to the bottom of shopkeepers wishing to establish their ‘dementia friendly’ credentials to make a fast buck. I am especially attracted to the idea that communities, if supportive of people living with dementia and caregivers, can mitigate against loneliness and isolation which can so easily follow the clinical diagnosis of dementia.

Ardent campaigner, Norman McNamara, living with diffuse lewy Body type dementia, himself warned against thinking ‘job done’ simply with a label, back in 2012:

“It was agreed with the PM (Can’t believe i am writing this) that we WILL NOT just put stickers up all around town/cities  announcing that we are Dementia friendly unless some sort of Dementia Aware training is in place first. Do you remember in the 80s when town called themselves “Nuclear free? AS IF!! It was a fiasco and we don’t want to go down that route!”! So please my friends remember, this is just the beginning , but what a beginning, and please remember this is in memory of all those lost already to this disease and those living with itt now, THE FIGHT GOES ON !!!”

Rights are indeed important in the NHS: it may, in certain circumstances, be more effective to exert ‘choice’ through the NHS Constitution in future for a right over where to die than through a personal budget.

And the actual diagnosis itself merits scrutiny. We should not be in a race to the bottom there, with high volume low quality diagnoses. For every wrong diagnosis, there is a victim of that diagnosis. Clinicians are regulated for this, but Big Charity is not. There has never been any systematic study into the harm done by an incorrect diagnosis, though presumably that would have been addressed in the impact assessment of the QOF ‘incentivising dementia diagnosis’ policy. I think primary care is overstretched, and I have a huge amount of personal admiration for GPs (my late father used to be a GP for about 30 years). But it would be unfair to overload them with making the diagnosis, even though the ‘diagnosis gap’ is well rehearsed elsewhere.

It is truly sad for me, as someone who has given a large part of my life to this, much of it in a voluntary capacity, that visions for dementia in England are more to do with individual egos and commercial aspirations of Big Charity than the actual needs of people living with dementia and caregivers. I do, however, look forward to hearing from people I respect, such as Agnes Houston or Kate Swaffer (who is about to go to Geneva to speak at the WHO/ADI conference on behalf of the Dementia Alliance International).

But otherwise… we really cannot go on like this.

Dementia friendly communities and ‘the Big Society’ – my pledge for #NHSChangeDay

If you trawl back ‘through the archives’, it is quite constructive to chart the origins of ‘the Big Society’. Often seen as the policy turkey which never flew, it was the idea that communities could produce measurable outcomes for the benefit of society through voluntary action.

The “Big Society” has had more policy relaunches than either David Cameron nor the Cabinet Policy would like to remember, but many feel it has never been officially laid to rest.

‘Dementia Friends’ saw a multi-million pound initiative, involving the Alzheimer’s Society, for providing information sessions to members of the public. It is in many ways an illustration of the Big Society; and in this particular case, ‘Dementia Friends’ aims to tackle ignorance and prejudice leading to stigma and discrimination. This is indeed a worthy cause.

I myself am a @DementiaFriends ‘champion’, and very proud of it.

“Dementia Friendly Communities” has been a policy construct which has been very popular amongst the Big Charities globally, including the Alzheimer’s Society and Alzheimer’s Australia. Like neoliberalism, globalism by definition knows no territorial bounds; and nor does this policy apparently.

David Willetts MP, often affectionately called “Two Brains” by both fans and political enemies, is known to be an intellectual power house of the Conservative Party. He is thought to have been the “brains” behind much of the private finance initiative thinking of the early 1980s in a policy document for the Social Market Foundation.

In 1994, he proposed a notion of ‘civic conservatism’. It is picked up here in an interview with Caroline Crampton, now of the New Statesman:

“He considers for a long moment, then says: “What does frustrate me is that, in the long years of opposition, it took a long time for the Conservative Party to get to grips with some of this stuff. I think we have now. If you look at the social action projects that the members of the new intake have done, their commitment to their constituencies, their understanding of the importance of the voluntary sector, we’ve made great progress. In politics, you have to be patient.” All the evidence suggests that Willetts is going to have to continue to be patient; there is no guarantee at this stage that his party will win a majority at the next general election, or that, even if it does, his highly intellectual approach to his brief will have delivered enough substantive change to justify his promotion ahead of others.”

The “dementia friendly communities” policy can be served up in whichever way you wish. You can argue it as a perfect vehicle to give the commercial market a slight ‘nudge’, so that ‘dementia friendly’ providers gain competitive advantage by being ‘dementia friendly’. This would benefit both customers and employers, conceivably. It makes sense of the motherhood and apple pie thinking behind providing ‘Dementia Friends’ sessions for the top FTSE100 countries, inter alia, in the current Dementia 2020 policy document (aka ‘The Prime Minister’s Dementia Vision’).

At the other policy end, it is impossible to argue against inclusivity and accessibility. It is impossible for someone like me who is a card-carrying evangelist for personhood to deny that relationships underlie what it is to be a person. Such relationships, often articulated in the hyper cerebral world of ‘relational ethics’, foster solidarity and justice as suggested here.

It is, however, politically interesting why the Big Society has been such a political turkey which never flew. One of the most toxic arguments against it was that it was in fact a cover for cuts. And, despite the Prime Minister’s hyperbolic claim that he wants the UK to be ‘the best place in the world to have dementia’, social care funding is on its knees. I indeed argued this as the King’s Fund when I was kindly asked to appear in their panel session.

on its knees

The rub is social care has not been ringfenced since 2010. It is quite impossible to consider the health and care systems to be divorced from one another, especially when you consider, for example, that cuts in social funding have been directly responsible for delayed discharges from acute hospital care into the community for NHS patients, including frail elderly people living with dementia. That’s what many of us mean by ‘breaking down silos’, for those of us with experience of acute medicine, albeit a long time ago.

“Dementia Friends”, although meritorious, poses a particular problem for people like me who are prone to conspiracy theories. It is, despite its good intention, an elaborate cover for cuts.

Whilst community action is undoubtedly a worthy policy construct for supporting people with all mental health issues, as indeed WISH some years argued, “Transforming lives – enhancing communities“, together with historic initiatives such as WHO ‘age-friendly cities‘, it is one approach. The other approach is to promote the autonomy, dignity and human rights of people living with dementia themselves.

This approach is firmly footed in equality rights and human rights, and in a way is a form of disability activism.  This is not altogether surprising, as I am physically disabled, and dementia is indeed referred to in the guidance for a qualifying condition regarding discrimination in the Equality Act (2010), legislated for by a previous government.

And you will have noticed one thing about a dystopic dementia friendly community, one in which the State is rolled back. Sure, for a dementia friendly community to work, it is perfectly possible to outsource social determinants of health including housing and transport. But likewise, it can be argued that a neoliberal concept of dementia friendly communities, as may or may not be promoted by Big Charity, does not particularly care about access to high quality specialist nursing (such as Admiral nurses) or access to high street justice (such as legal aid cuts and the recently legislated Legal Aid and Sentencing and Punishment of Offenders Act 2012).

But, looking on the bright side, promotion of individual rights is also very much at the heart of independent living (and de-institutionalisation which has been the scourge of mental health policy in England for many decades).

In particular, I should like to commend to you @DementiaBoy, Andy Tysoe, a dementia nurse specialist at the Countess of Chester Hospital, for his important work today for @NHSChangeDay.

So here’s my official NHS pledge: not to allow dementia friendly communities to be a cover for cuts, while supporting the overriding principles of inclusivity, accessibility, solidarity and justice, and “rolling back the State”, but to promote, simultaneously, legal enforceable rights of people with dementia in equality and human rights as legislated for currently in England.

Building ‘cognitive ramps’ for NHS Change Day

Andy Tysoe, @dementiaboy, is on a remarkably important mission.

“Hi, my name is Andy Tysoe and I’m a dementia nurse, based at the Countess of Chester Hospital and campaign lead for NHS Change Day #dementiaDO. Part of my clinical role is to help people affected by dementia through the challenge of an acute hospital stay and also to deliver dementia awareness sessions to the staff who work there.”

On Wednesday 11 March 2015, local activities in #NHSChangeDay will take place to recognise the positive changes that have resulted due to the actions people have taken.

And Andy includes a powerful pledge.

“We need to build our cognitive ramps next to physical ones to assist people with cognitive (thinking) disabilities into our public services and buildings, and for me, carers are a crucial part of those ramps not just during visiting time either!”

Here’s the rub.

“Parity of esteem” is currently a big deal in the NHS, to put mental health and physical health on an equal footing. As provided by NHS England,

“The Mandate from the Government to NHS England instructs us to put mental health on a par with physical health, and to close the health gap between people with mental health problems and the population as a whole. But this is only our starting point: we need to go further by delivering ‘parity of esteem’ and commissioning services that are truly person centered in a way that addresses some of the profound inequalities of access to high quality care in England.”

The English law has created this parity of esteem in discrimination offences too. This is from my book to be published by Jessica Kingsley Publishers in July 2015.

From my book

In a seminal article by “The Network Secrets of Great Change Agents” by Julie Battilana and Tiziana Casciaro in the Harvard Business Review, the authors set out the properties of people in networks and how they can effect change.

People living with dementia, caregivers, nurses, healthcare assistants, doctors, and assorted members of the community are all “actors” in a network.

Most social networks exhibit “clusterability”: that is, they comprise groups of individuals who are tightly connected to each other. This can be reinforced by powerful hierarchies, such as in the NHS.

The power of Andy Tysoe, I feel, as a “change agent”, comes from his ability to bridge the NHS with the people it purports to care for:

“People who bridged disconnected groups and individuals were more effective at implementing dramatic reforms, while those with cohesive networks were better at instituting minor changes.”

(Battiliana and Casciaro)

Implementation of a radical change within any organisation can be conceptualised as an exercise in “social influence”, defined as the alteration of an attitude or behavior by one actor in response to another actor’s actions.

Network research has converged upon the notion that the degree of “structural closure” in a network, defined as the extent to which an actor’s network contacts are connected to one another, has important implications for generating novel ideas and exercising social influence. People in positions of power and authority can are not the only people who are influential, sometimes.

Cohesive ties unfortunately can be a source of rigidity that hinders the coordination of complex organisational tasks.

I have been particularly impressed by how Andy has taken to Twitter to lead on his change. This plays on one of the fundamental features of networks. Consider, for example, in a phone network, where the primary transaction is making or receiving calls, anyone with a network phone number can call any other person with a network phone number.

There has been growing recognition in the literature too, that “size isn’t everything”. As regards this, one cannot but help to be impressed by Andy’s conduct with people he’s encountered. Network members can, indeed, develop a reputation for honesty, trustworthiness, and dependability.

This helps Andy see about initiatives in the wider community, such as ‘dementia friendly checkouts’.

dementia friendly till

In “The new era of thinking and practice in change and transformation” from NHSIQ, authors Helen Bevan and Steve Fairman propose characteristics of “The Edge”:

“The edge as a virtual place for building relationships and networks; this is about purposefully positioning change agents at the edge of the organisation, enabling them to interface more easily with others, both inside and outside of the organisation, simultaneously. From this perspective, we see change agents as hyperconnectors, building relationships with other change agents and innovators, utilising open innovation principles to make social connections, pulling knowledge into the organisation, making sense of it and sharing it to speed up change.

The edge as a way of being as a change agent; choosing as a leader of change to operate at ‘the edge’, leading through networks and social connection, looking outwards to the wider world of knowledge, relationships and networks as well as inwards, influencing though the processes of organisational life.”

One of Andy’s main missions is to make the navigation of a person with later stages of dementia more easy through the system, with the help of caregivers in the formulation of care plans. This is very much in keeping with the RCN/Carers Trust “Triangle of Care” (2013).

Andy, like me, is supporting “John’s Campaign“: “the right for carers (particularly family) to stay with a person with dementia if they are admitted to hospital – 24/7 if necessary.” (twitter @JohnCampaign)

A lot can go wrong if such a person with dementia is left bewildered in acute hospital, as the totemic video of “Barbara’s Story” shows.

Leading from the edge has parallels in other sectors. For example, Danone introduced “discovery learning” in business education. This “edgy” method was introduced to facilitate this voyage of self-discovery, exposing “to experiences that are surprising or challenging”

By being at “The Edge”, Andy is in an unique position to help with the aims of raising ‘dementia awareness’, on top of the current “Dementia Friends” initiative, in meeting outcomes of tier 1 of the Health Education England initiative.

This change leadership, of course, is all a far cry from Machiavelli; who is reputed to have famously said that it is better for leaders to be feared than to be loved.

In contrast, in summary, I strongly commend to you Andy Tysoe, for #NHSChangeDay 2015 (#DementiaDo) to bring about awareness of dementia, to support “John’s Campaign”, and to stop discrimination against people with dementia.


Bonetto, T. and Irwin, L. (2013), Danone Leading Edge program – a leadership odyssey, EFMD Excellence in Practice Awards 2013: Executive Summary.

Designing residential environments for living better with dementia

Care providers need to move from a negative disabling approach to a more positive enabling mind-set that respecting residents as adults who have rich histories and can live meaningful lives. A ‘dementia friendly’ environment is argued to compensate for disability and should consider both the importance for the person with dementia of his/her experiences within the environment. Such environments aim at building on what people living with dementia, rather what they cannot do, allow them to experience the highest possible quality of life.  A literature on designing facilities for people with dementia, which has accumulated over the last 40 years, or so, provides support for the inclusion of a number of features into care homes that accommodate people with dementia. There is converging evidence that intelligent design of buildings, if regarded as a therapeutic resource, can promote well-being and functioning of people with dementia.

There has been increasing interest, overall, in the use of non-pharmacological interventions to improve dementia symptoms and the wellbeing of residents with dementia and their carers.  Previous studies examining modifications to the built environment have drawn from a number of design principles and frameworks for dementia care homes and suggest that purposeful design of one’s surroundings may play an active role in promoting a sense of well-being and improved functionality. The increased sensitivity of persons with dementia to environmental conditions occurs because the illness can reduce the individual’s ability to understand the implications of sensory experiences in residential care settings. As a result, agitated behaviours, increased confusion, delusions, and other psychiatric disturbances are readily triggered by environmental stimuli.

Inappropriate physical environment of the dining room is one of the most frequent concerns voiced by staff in nursing homes. Dining rooms are often loud and overstimulating places in care homes. In terms of physical environments, designs which provide balanced and controlled stimulation, and features that assist orientation, compensate for disability, and promote involvement in everyday activity are sought. With the aging population, research in home environments has developed a new focus of “environmental geriatrics” which includes professionals with backgrounds in anthropology, architecture, geography, occupational therapy, psychiatry, psychology, and other fields, as well as people living with dementia and caregivers. But dementia is not just about old people.

The focus of long-term care settings for the elderly has gradually changed from curing diseases to improving their quality of life, especially in countries which have been experiencing the aging of the population. In terms of the concept of care, the term “person-centered care” has already generated a lot of attention. Many terms (e.g., resident-centered care, individualised care, consumer-directed care, patient-centered care, self-directed care) share the same basic concepts and definitions. A person-centred approach is considered to emphasise residents’ unique personal preferences and needs in order to guide caregivers, thus enabling the individualisation of care plans and care routines to improve quality of life and compensate for their impairment. Person-centered dementia care requires shift in attitudes, behaviours, and systems replacing the traditional model of care that primarily focuses on the “tasks.” This is a best practice concept guiding efforts to improve residents’ quality of life in long-term care facilities. The care philosophy recognises that individuals have unique values, personal history, and personality.

Kitwood who advocated for the critical importance of personhood stressed the importance of taking a holistic perspective in relating to and caring with the person with dementia. For example, including a person with dementia in conversations at mealtimes would be considered as “positive person work”, as it contributes to recognising that person as a valued person. Dawn Brooker also illustrated Kitwood’s philosophy of person-centered care using a “VIPS” framework—“V” as valuing the individual as a full member of society, “I” as providing individualised approach, “P” as understanding the perspective of the person living with dementia, and “S” as providing a social environment that supports well-being of the person.

The environment needs to be able to support remaining ability rather than operate to diminish it, and to support the development and maintenance of relationships. The design of physical environments within residential aged care facilities (RACFs) can improve or worsen wellbeing in people with dementia irrespective of level of care from nursing staff. In Australia, the Building Quality for Residential Services Certification guides the building quality of RACFs in general, but this legislation does not offer any standards catered specifically to a person-centred dementia unit design. A groundbreaking assessment tool for the ward environment was developed in collaboration with NHS trusts participating in “The King’s Fund’s Enhancing the Healing Environment” (EHE) programme. Since then over 70 care organisations have been involved in field testing the tools. These tools have been informed by research evidence, best practice and over 300 survey responses from those who have used the tools in practice. Each of the sections draws on this evidence to develop a rationale for effecting change in care environments. This rationale also addresses, to some extent, the visuospatial experiences often associated with dementia. Making accommodations for the cognitive problems which people with dementia face is a fundamental aspect of overcoming disAbilities: for example the intelligent use of signage in care homes can make a tremendous difference. It’s also known, further, that intelligent use of colours and textures can enhance the lived experience of people living with dementia in residential care settings.

From the societal perspective care for dementia patients living in the community tends to cost more than care in nursing homes when functional impairment is controlled for. Care provided by family and friends in the community on the one hand saved costs of formal care but on the other hand cause informal care costs, which more than outweigh the savings (König et al., 2014). Innes, Kelly and Dincarslan (2011) have reported on a study to evaluate the reliability and validity of two tools: The Design Audit Tool and the Environmental Audit Tool developed to audit how dementia-friendly internal and external environments (specifically care homes) are for people with dementia. Analysis of the home reports identifies variation and variability in meeting “dementia-friendly principles” as specified by both tools. Areas of variability included wayfinding, the use of colour and contrast, access to outside spaces, individualisation of personal and communal spaces, lighting and opportunities to engage with the environment.

“Household model units” are often created from traditional ward type environments. They, for example, are distinguished by having approximately 16 residents, a functioning kitchen, their own front door entrance and a separation of the bedrooms from the main communal living rooms. There is a philosophy of facilitating “person-centred care”, as opposed to institutional routines, supported by a consistent team of care workers providing much of the unit management and decision making for each household. They encourage domestic style relationships between residents, staff and relatives.

On the other hand, the policy of “aging in place”, meaning the ability of individuals to remain in their home in the community, is a consistent wish and expectation of middle aged and older people. Home adaptations (environmental improvements, or in the disability legislation, reasonable adjustments) and assistive technology provision are an increasingly attractive means of helping older people to maintain their independence and enhancing their quality of life. There has been, frustratingly, little systematic research into the feasibility and cost of pursuing such a policy. The lack of definitive evidence of a link between the quality of the environment and the wellbeing of people with dementia living in that environment is somewhat surprising given the evidence that is available on the beneficial effects of specific environmental interventions. “Housing with care”, such as extra care and continuing care housing, is becoming a preferred alternative amongst commissioners of adult social care to care homes for people with dementia. Contemporary research suggests that many people with dementia can lead good quality lives in extra care housing, at least in the mild to moderate stages.

The availability of gardens or outdoor areas in residential homes may offer a range of benefits for people living well with dementia, including opportunities for active engagement with gardening, walking in an outdoor environment, and sitting in soothing surroundings.

The physical environment is therefore now emerging as an important determinant of psychosocial and health outcomes for older persons with dementia of the Alzheimer type and other dementias. Among demented residents of long-term care facilities, environmental factors have been linked to agitation, intellectual deterioration, orientation, and even sleep patterns. With more people with dementia living in care homes in the UK than ever before, there is growing recognition that the design of such internal and external spaces should meet dementia friendly principles. The availability of gardens or outdoor areas in residential homes may offer a range of benefits for people with dementia, including opportunities for active engagement with gardening, walking in an outdoor environment, and sitting in soothing surroundings.

This field is promisingly now moving fast, giving some meat to the bones of ‘dementia friendly communities’.




Innes A, Kelly F, Dincarslan O. Care home design for people with dementia: What do people with dementia and their family carers value? Aging Ment Health. 2011 Jul 1;15(5):548-56. doi: 10.1080/13607863.2011.556601.

König HH, Leicht H, Brettschneider C, Bachmann C, Bickel H, Fuchs A, Jessen F, Köhler M, Luppa M, Mösch E, Pentzek M, Werle J, Weyerer S, Wiese B, Scherer M, Maier W, Riedel-Heller SG; AgeCoDe Study Group. The costs of dementia from the societal perspective: is care provided in the community really cheaper than nursing home care? J Am Med Dir Assoc. 2014 Feb;15(2):117-26. doi: 10.1016/j.jamda.2013.10.003. Epub 2013 Dec 8.

That blue black gold white dress and dementia friendly communities


Is this dress black and blue or gold and white?

The background colour of daylight varies during the time of day.

That colour axis varies from the pinkish red of dawn, up through the blue-white of noontime, and then back down to reddish twilight.

People who see white and gold may be looking at the dress in a blue-lit room or near a window with a blue sky. It also depends on our own individual sensitivity to the bluish tinting in the photo. The brains of people who see white and gold are interpreting the photo as more shadowy. The brain compensates for the darker blue tinting and interprets the blue part as white and the black part as gold.

So we all do see the dress differently.



This phenomenon is known as “colour constancy”.

Colour constancy is an example of subjective constancy and a feature of the human colour perception system which ensures that the perceived colour of objects remains relatively constant under varying illumination conditions.

A green apple for instance looks green to us at midday, when the main illumination is white sunlight, and also at sunset, when the main illumination is red. We don’t want the colour of objects appearing to change as the day progresses?

The physiological basis for colour constancy is thought to involve specialised neurones in the primary visual cortex that compute local ratios of cone activity.

Colour constancy works only if the incident illumination contains a range of wavelengths.

The different cone cells of the eye register different but overlapping ranges of wavelengths of the light reflected by every object in the scene. From this information, the visual system attempts to determine the approximate composition of the illuminating light. This illumination is then discounted in order to obtain the object’s “true colour” or reflectance: the wavelengths of light the object reflects. This reflectance then largely determines the perceived colour.

These cone cells are the colour-sensitive cells of the retina (comparable to the “film” in a camera). The non-colour sensitive cells are called rods. This is what a cone looks like under a microscope.

cone cells

The same phenomenon underlies the “Mondrian panel” – where the colour of a square depends on the colour of the squares around it. Pieter Cornelis “Piet” Mondriaan (March 7, 1872 – February 1, 1944), was a Dutch painter. He was an important contributor to the De Stijl art movement and group, which was founded by Theo van Doesburg. He evolved a non-representational form which he termed neoplasticism. This consisted of white ground, upon which was painted a grid of vertical and horizontal black lines and the three primary colours.

Mondrian panel

And central processing of colour is not thought to be affected early on in the dementia of the Alzheimer type, as the memory part of the brain (hippocampus) is in a different part of the brain involved in processing colour (the occipital part of the brain). That’s why we do desperately need some evidence-based neuroscience looking at colour in so called “dementia friendly communities”, otherwise the field will be riddled with speculation, anecdote and rumour.

Posterior cortical atrophy (PCA) is different. In “Dementia Friends”, we are told that dementia is not just about losing your memory – indeed in early PCA the common presenting problem can be that of visual perception rather than memory. It’s not uncommon for people with this form of dementia to go round the houses seeing opticians rather the memory clinic/cognitive disorders clinic.

As stated here,

“The symptoms of PCA can vary from one person to the next and can change as the condition progresses. The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information. Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with PCA experience anxiety, possibly because they know something is wrong. In the early stages of PCA, most people do not have markedly reduced memory, but memory can be affected in later stages.”

However, there are specific dementia syndromes which can conceivably affect that part of the brain. Chan, Crutch and Warrington (2001) reported an intriguing 64 year old woman with posterior cortical atrophy. Her presenting symptom was of seeing objects as abnormally coloured after prior exposure to a coloured stimulus. Formal testing disclosed that the patient experienced colour after-images of abnormal latency, duration, and amplitude.

Indeed the description of the methods in the paper makes reference to Mondrian panels.

A general theme is that living better with dementia is the result of an exquisite interaction between the facets of a person (personhood) and the wider environment at large.

It would be low hanging fruit to see if a population of people living well with posterior cortical atrophy see the dress differently to people in the general population. We know we tend to see that dress differently, but are the ratios of the black/blue – gold/white different in people living well with posterior cortical atrophy?