Category Archives: Dementia friendly communities

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Were ‘dementia friendly communities’ the correct approach after all?

apps

Some time ago, the Alzheimer’s Society embarked on a programme of making a million (then two million etc.) “Dementia Friends”. These “Dementia Friends” were community ambassadors, not specialists in dementia, who went out to explain in standardised 45-minute chunks what dementia is.

To gauge how successful it has been has turned out to be rather difficult. To the best of my constructive knowledge, despite this investment costing millions, there has never been a peer-reviewed publication on the outcomes of that programme which consumed significant public money. The simple fact is, if this had been a project run by a social enterprise, it would have been subject to the most detailed of examination on value-based returns on investment.

I have no ideological beef with the Alzheimer’s Society. Far from it, I think in the last few years they have been uniquely successful in raising the brand awareness and brand identity of themselves and dementia. When the Health and Social Care Act (2012) was torpedoed by parliament, placing an emphasis on competitive tendering (despite much protesting otherwise), this was a useful competitive advantage for a lot of dementia policy.

There are well rehearsed arguments of where “dementia friendly communities” have been criticised, not just for the United Kingdom but in Japan. For example, it has been mooted whether the programme was primarily for the benefit for actual people living with dementia (here defined as people who’ve been diagnosed with dementia, not merely living with someone with dementia), or a carer. Or neither – it might have been primarily for the benefit of a high street shop or bank. Anyway, at the time, the ideology of behavioural insights and Nudge was beginning to gain momentum.

Indeed, Dementia Alliance International and Alzheimer’s Disease International, and indeed I, had some success in changing the vocabulary aware from ‘friendliness’, which for some denoted a rather patronising twang of ‘does he take sugar?’, to one of inclusivity and accessibility.

Where the Dementia Alliance International then had undoubted success, with the work of Kate Swaffer and Peter Mittler predominantly, was having ‘first mover advantage’ in realising the relevance of the United Nations Convention of Rights for People with Disabilities to the lives of people with dementia. I then discussed the importance of this to the World Health Organization’s policy of sustainable development goals, long before others “joined in”.

But I’m tempted now to heat and eat a strong dollop of humble pie. On the one hand, I have argued, quite vociferously, that promoting health must be a component of promoting wellbeing, and it was hard to sustain positive outcomes in dementia friendly communities against a backdrop of austerity or cuts, or a NHS and social care system perceived by many to be struggling to meet demand due to inadequate funding.

But actually, as put forward by the Alzheimer’s Society themselves, the experience of someone living with dementia, and his or her immediate friends or family, does not stop in a GP’s surgery or an acute admission. There is a wider community, where housing and transport could be ‘dementia friendly’.

Apart from a separate argument of whether it is appropriate to address persons in identity by one of their principal diagnoses (a conflict with person-centred approaches), it is evident to me that there is a strong argument for addressing the health assets of all people.

Indeed, as Chris Roberts, a leading campaigner in the UK said, and I hope that I’m not misquoting him, what is likely to be ‘dementia friendly’ is likely to be friendly for everyone. Should there be also  “frailty friends” or “cancer friends” for balance?

Taking a medical model of dementia even characterised by complexity and comorbidity, Chris’ approach is practical. Also, a move towards dealing with health assets would be a direct way of addressing health inequalities or the social determinants of health.

It also attempts to address the question of ‘what makes you healthy?’ as opposed to ‘what makes you ill?’  I feel that you can only measure value but asking people to identify what outcomes matter to them (ask ‘what matters to you?’ rather than ‘what’s the matter with you?’)

I remember first criticising ‘dementia friendly communities’ saying that it should be ‘dementia friendly networks’ (or similar), reflecting a potential online connectivity of all persons. But I am inclined to do a volte face on this too, in that it might not be possible to address all inclusion needs for people living alone with dementia from an app on a smartphone. As it happens, these are exactly the sorts of people who are genuinely ‘seldom heard’ at all – not just in conferences, but seldom heard from the NHS and social care radar until crisis point is sadly reached.

I think it’s now likely a more pro-active approach with advance care planning is needed to promote health assets for older people living with dementia and/or frailty. This is not simply a question of bean-counting, for the avoidance of admissions. This is not simply a question of reducing mortality or reducing morbidity, or being more cost effective. This, I feel, is good common sense?

 

@dr_shibley

 

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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.

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The issues that Manchester poses for 'dementia friendly communities'

Manchester tram

 

I spent a lot of time physically in Manchester last year, for one reason or another. As a ‘Northern power house’, it happens to be only two hours away from London Euston on the train.

Manchester has forced to me to think – in dementia policy – whether independent living is consistent with communities, and whether Manchester could help us here with the dementia friendly communities policy work stream in general. Independent living can be promoted through upholding of human rights (hence the reference to right based advocacy and the UN).

When news of the ‘People’s Republic of Manchester’ was breaking last year, I remember the criticism that came with it from the NHS policy stream. That is, locally devolved powers might undermine the national nature of the health service. At worst, the devolved Manchester was also devolving blame for cuts to a local level.

It’s possibly no coincidence that Phillip Blond has been involved with both the DevoManc agenda and the Big Society. In terms of the ‘Big Society’, one of Blond’s fundamental arguments can be interpreted as that ‘the left’ did not actually deliver on its communitarian politics.

One of the central premises of the Big Society is that individualism is best served with an empowerment of people’s relationships with another. The effect of a monopolistic relationship with the State, or as more’s the case outsourced private providers, is that such relationships do not gain power.

Coincidentally, it happens that one of the biggest criticisms of ‘dementia friendly communities’ is that it is in some way or other a ‘cover for cuts’. The problem was that, temporally, the Big Society surfaced at approximately the same time as the austerity-led agenda following the global financial crash.

Whilst latterly there has been talk of care homes forming ‘community hubs’ as part of dementia friendly communities, it appears likely that a central thrust of dementia friendly communities, policy-wise, was to promote ‘independent living’. This ‘independent living’ rose to prominence from the disability movement.

With the Prime Minister Dementia Challenge, there has been muttering on the spotlight received by dementia (even given the devastating cuts in social care), compared to disability (including the demise of the Independent Living Fund).

Dementia is not a natural part of aging: that is why it has become important to separate the WHO ‘age friendly cities’ policy stream from dementia friendly communities, even though they show many commonalities (and to separate ‘independent living’ from ‘successful aging’).

But it is nonetheless clear that there is some sort of relationship between the ‘health of the nation’ and resources the State has to play with.

I am physically disabled, which is why I particularly appreciated the in-city tram service within the city of Manchester, which made it very easy for me to move around the city of Manchester.

For the wellbeing of people living with dementia, there has been a growing realisation that integrated services go substantially more than merely health and social care (important though they are); they necessarily involve, for example, housing and transport. It is symbolic than the policy streams of ‘social determinants of health’ and ‘friendly cities’ or ‘friendly communities’ have maintained their silos both at national and international level.

But, with growing realisation of international instruments such as the United Nations Convention on the Rights of People with Disabilities, rights-based advocacy is reaching another level. The use of the word ‘community’, especially given the devolved nature of politics recently, puts in sharp focus at what level ‘friendliness’ (however so defined) operates.

Glenn Rees, current Chair of Alzheimer’s Disease International, has often commented on the ‘dementia friendly societies’ policy stream of Alzheimer’s Australia and the contribution of Ita Buttrose. Manchester throws up the question of ‘why stop at community?’ It might be that it is actually necessary to devolve national functions to a local level if only to empower individuals and us collectively.

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"A community where we're nice to everyone? It might catch on."

The word ‘friendly’ in the term “dementia friendly communities” defies definition. At the very worst, it has a twang of “does he take sugar?” about it.

The reasonable question which most of us have thought about is why focus on people with dementia? This from a commissioner’s perspective is a worthy one – why not “depression friendly communities” or “first episode psychosis friendly communities”?

It is indeed curious how much friendliness can be compatible with division.

Take for example the historic segregation in Cape Town, South Africa. It is argued that racial segregation was facilitated by spatial urban planning which imposed natural boundaries such that the centre could be a ‘white only’ zone.

The whole history of how segregation was achieved this way is described succinctly in an article.

spatial planning

It’s possible, though I do not know the precise findings, that people who are of the same colour tend to live together. This has of course been the subject of many previous discussions, often heated, about whether we truly live in a ‘multicultural society’.

Even beyond this traditional segregation, even in a society which allegedly has accepted differences, as say defined by the protected characteristics under equality legislation, it is possible for tacit division still to persist.

For example, a blogpost recently boasted of destinations which were particularly friendly to the ‘young black professional‘.

Where am I heading with this? I am simply saying that cultural divisions can exist even if protection is enforced within the law. I have referred to this as ‘moral rights’ because for legal rights to exist they need to be part of the law (either common law or in statute) first. Racial discrimination was abhorrent, many feel, before formally legislated upon.

This has all come to the fore with the issue of ‘rights based approaches’; that everyone has legal human rights, which protect dignity, and right to a private life, and protect from discrimination.

The problem with any law is that the law is only as effective as how well it is drafted, or how it is enforced. For example, the lack of efficacy of the national minimum wage has in large part been to lack of effective enforcement, it has been argued.

I feel ‘standards’ for dementia friendly communities are helpful, such as those from the Alzheimer’s Society, otherwise the term itself is open to abuse.

But it is important to be clear about what a dementia friendly community is definitely. Lack of inclusion of an obvious issue in this quasi-legal framework could render it seemingly unimportant.

For example, some ‘gay friendly cities‘ have been defined thus: “Publications like “The Advocate” base their annual rankings on criteria like the number of LGBT elected officials and protective policies and legislation, as well as the community’s level of participation in gay friendly sports, competitions, and social groups. ”

And indeed it is currently a “right”, under the UN Convention for Rights of People with Disabilities, for people with disabilities (however defined) to have proper democratic representation.

For example, article 29 defines a right to be included in political and public life, including an encouragement for “participation in public affairs”.

Should not a World Dementia Council have included from the start a person living with dementia who was democratically nominated onto that panel? Surely that comes under dementia friendly communities?

The alternative is that we do treat everyone equally, with kindness.

“A community where we’re nice to everyone? It might catch on.”

 

 

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"Alive inside: the story of music and memory". A film screening in Brighton on March 20th.

I always tell anyone I can meet, “Anything can happen to anyone at any time”.  I believe in persons not patients; I believe in looking at what people can do rather than what people cannot do; I believe repair is important, but so is care.

2 Shibley

Don’t let anyone fool you into thinking that the human brain is anything other than complex. There’s about 1 000 000 000 000 000 different nerve cells, some of which are connected w’ith other, but some aren’t.

“Alive inside: the  story of music and memory” is a film which charts a one-man mission of Dan Cohen to bring music to residents of residential nursing homes.

I am honoured to have been invited yesterday to introduce this film at St George’s Church, Brighton, to an audience of about 100-120 members of the community.

3 Before

I am truly grateful to Lucy Frost, a clinical nursing specialist in Brighton, and Rachel Mortimer, from “Engage and Create”, a social enterprise which promotes wellbeing in an evidence-based way.

1 Lucy Frost

Music is a remarkable cultural phenomenon. Whatever side of your political fence, it’s true that the whole is more than the sum of the individual parts.

Music, as correctly observed by Prof Oliver Sacks, is in an unique position to involve numerous distributed neuronal networks involved in auditory perception, emotions, and attention. But what is also special about music is that it can raise powerful personal emotions, including ‘chills’ down your spine, and can compel you into voluntary movement and coordination.

Furthermore, it can bring back powerful personal memories from your autobiography. It is not uncommon for someone to tell you that they can vividly recollect the first time they heard a particular song.

Henry in his 90s, in a nursing home in a slumped posture in a chair, becomes ‘awakened’ when he hears music. But the remarkable thing is that this phenomenon is replicable.

I don’t feel ‘awakening’ is a hyperbolic word to use in this context.

I remember when I would put a horizontal cane in front of a person with Wilson’s disease, a rare copper metabolism problem; and who was ‘stuck’ in movement, like someone with Parkinson’s disease. The year was 1998, and the city was Warsaw as I was doing a study on cognition for my Ph.D.

This is reminiscent of the ‘Awakenings’ captured later in the famous film to do with the magical effect of a dopamine chemical medication on people with Parkinson’s disease symptoms, as following the outbreak of encephalitis lethargica.

Medical breakthroughs always come from the weirdest of places.

I think unlocking movement through a physical obstacle is akin to unlocking thinking through music.

In other words, I think the human brain responds well to external triggers when it cannot generate the computer program itself. I think the human brain has a form of human metronome which enables this response to physical obstacles and music in different contexts.

The late (and great) Prof Sir Richard Doll, after a lecture at Cambridge, said to me how he’d been told that, “serendipity is like looking for a needle in a haystack, and finding the farmer’s daughter.”

Numerous previous research studies have showed that your wellbeing is improved if you improve the wellbeing of others. Also, the effect of the musical ‘intervention’ is quite longlasting, in improving someone’s quality of life, or enhancing temporarily memory.

In this target-driven culture, where all outcomes have to be identified in meticulous detail, it is quite remarkable that music used this way has very few risks (e.g. it does not cause physical disease, it is not intensely costly if you have an inexpensive mp3 player which has relevant playlists.)

I managed to do a bit of ‘product placement’ for my own iPod Nano, even.

4 photo with iPod

And the potential benefits are enormous. Historically, it has been far too easy for certain professionals to abuse their power to prescribe antipsychotic medications as a ‘chemical cosh’ to “turn off” residents with dementia in homes.

The whole project forces us to justify whether the money put into prescribing medications which often very have modest effects on cognition and wellbeing, and have no proven effect on disease progression, is justified.

If Pharma did not have such a policy strangehold through corporate and regulatory capture, social prescribing, where doctors could prescribe a mp3 player, would be the norm not the exception. “Nesta”, the innovation hothouse, found in their report that most people want it but most people aren’t offered it.

As Kate Swaffer, Co-Chair of the ‘Dementia Alliance International’, a peak body representing people with dementia, emphasised last week addressing dignatories in Geneva for the World Health Organization, we need more effort to be put into research into living well with dementia.

“It is possible to live well with dementia” is in a way the first amendment of the Alzheimer’s Disease International. Bringing music back into some people’s lives might be a good start.

I was much more open about where I thought our English dementia policy has gone wrong, in a small pub in Brighton round the corner from the venue. Elated by my Diet Pepsi, I explained how we could be in a better place – but that’s for another day.

5 after

 

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Spirituality and sexuality for living better with dementia in residential settings

Sexuality and spirituality are important topics for people living with dementia in residential settings. This article is not about diversity in diagnosis and service provision, which I cover elsewhere. And there are many aspects of these topics, but this short piece only “scratches the surface”.

I should like to consider sexuality first.

Many professionals working in residential settings report experiencing difficulties, distress and confusion regarding sexual display between patients transferred to such places. Similar uneasiness is also expressed by family members and residents themselves. Sexual behaviours and desires of adults do not cease upon nursing home admission. For example, Hubbard, Tester, and Downs (2003) reported that institutional care residents’ often engage in intimate touch, kissing, sexual talk, flirting, and teasing. There is now a general consensus that sexuality is an intrinsic part of human personal identity. Indeed human sexuality is influenced by multiple factors including culture, ethnicity, religion, education, family and peer group, personal experience and the legal system. Our current law is clear: sexual activity with someone unable to consent is a sexual offence.

For most people living in Western societies, the right to be able to make decisions about one’s life is taken for granted. These decisions include whether or not to engage in sexual behaviour whenever and with whomever one chooses, providing of course it is mutually consensual and within the boundaries of the law. In particular, older people living on their own or with a partner generally continue to enjoy these rights and freedoms, even if they are in the early stages of dementia.

Sexuality is a broad multi-dimensional construct which encompasses relationships, romance, intimacy (ranging from simple touching and hugging, to sexually explicit contact), gender, grooming, dress and styling. However, when an older person moves into a residential aged care facility (RACF), circumstances often change.Ill-health and mobility can affect on the desire and capacity for physical intimacy, but a number of diverse factors in RACF can constrain the ability of persons to express their sexuality and sexual needs, including institutional policies, privacy, and attitudes of the staff. The existent literature strongly indicates that aged care facilities do not tend to be environments that are conducive to, or supportive of, the freedom of sexual expression.

Being able to express our sexuality is known to be important to health, well-being, quality of life and furthermore, human rights. The desire or need to express one’s sexuality does not tend to ‘extinguish’ with age; the general consensus of the studies of older people and sexuality is that there is no known age limit to sexual activity. There might conceivably be a trend of diminishing sexual behaviour with age. For many older people including those living in RACF, sexuality continues to be important. Sex between elderly people has, rather, traditionally been sometimes perceived either not to exist, or to be a topic of humour, or to be morally unseemly. Certainly, therefore, it cannot be assumed that older adults are not sexually active. It further appears that sexual and other intimate contact is healthy amongst older people. The literature overall appears to correlate sexual activity in this population with an enhanced feeling of self-worth, longer life expectancies, better cognitive functioning, and enhanced independence. The absence of such relationships, by comparison, she correlates to loneliness, depression, and even possibly a higher usage of medical and care services. Specifically, all health care team members, including occupational therapists, need to be more sensitive to the sexual desires and needs of older adults.

Abnormal sexual behaviour in the long term care setting includes unwanted sexual advances such as climbing into bed with other residents in a nursing home or actual attempts of intercourse and aberrant sexual behaviour such as sexual aggression. “Inappropriate sexual behaviour” (ISB) has been identified as a significant corollary of the dementias. An extensive review of ISB revealed a multitude of definitions, including ‘sexual advances’, ‘hypersexuality’, and ‘inappropriate commentary’. Its precise aetiology has not been defined; rather, various neurobiological, psychological and environmental explanations have been offered. A difference in function of the prefrontal cortex part of the brain has been implicated, but so has a number of psycho-social factors. However, the legitimate and recognised need for nursing home residents, even those with advanced dementia, to sexually express themselves may make preventing and managing sexual aggression in nursing homes more challenging. It will be a good idea to develop “on-the-job training programmes” for sexual education of residents with dementia in institutions. Regular seminars on sexual care for the residents with dementia might be beneficial for managing sexual issues among residents and to decrease caregivers’ burden.

Spirituality is another interesting area.

It is important to distinguish between spirituality and religion. All people are spiritual regardless of their religious beliefs, although spirituality may be expressed through religious practices and/or a belief in God or a higher being. Religion involves specific practices and beliefs that may be associated with an organised group. Spirituality is a person’s search for or expression of his or her connection to a greater and meaningful context. Being spiritual is part of being human because it forms the root of one’s identity and gives life meaning. The impact of spirituality as a component of psychological wellbeing is becoming more recognised by both health professionals and national organisations. Spirituality is a natural part of human existence and can mean different things to different people. Clinicians are increasingly attempting to provide whole person care, which includes providing spiritual care particularly when administering care at the end of life. “Holistic nursing” addresses the physical, mental, social and spiritual needs in people’s lives. Spirituality may contain dimensions of spiritual well-being (e.g. peace), spiritual cognitive behavioural context (spiritual beliefs, spiritual activities and spiritual relationships) and spiritual coping. Spiritual caregiving may contribute to wellbeing at the end of life, as shown in palliative populations of mostly cancer patients.

In the United States, the United Kingdom, and the Netherlands, about 25% of all deaths occur in the nursing home. In dementia and at the end of life, spiritual caregiving poses particular challenges. For example, it may be difficult to predict the end of life, and to communicate verbally due to cognitive impairment, perhaps with superimposed acute illness. Spiritual caregiving in dementia may be a neglected area, with little research available. For example, in a UK hospital, religious beliefs of dementia patients are less frequently documented than in patients without dementia. Further, recent reviews indicate that there is some evidence of beneficial effects, also in dementia, of spiritual interventions and spirituality and religiousness on, for example, coping, wellbeing, and behaviour. In studies on spiritual care in long term care settings, spiritual support and care are associated with better overall care at the end of life for long term care residents, and that the best target for interventions to improve this type of care is the interaction between residents and facility staff.

Reference

Hubbard, G., Tester, S., & Downs, M. G. (2003). Meaningful social interactions between older people in institutional care settings. Ageing and Society, 23, 99-114.

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That blue black gold white dress and dementia friendly communities

changing

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.

 

Dress

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?

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A prism of view of 'dementia' which is binary does not do anyone any favours

People like to make mental shortcuts.

Known as ‘heuristics’, they are convenient tools to save time and energy. For example, when you’re buying a new tablet, you might be really biased towards one which can show photographs in very high resolution.

The word “dementia” itself is a shortcut for people to summarise the fundamental way in which a particular type might share particular characteristics.

This is like an ‘asthmatic’ who gets very short of breath around certain types of tree pollen.

The word “dementia” would not be a problem, if it were not a label, and implied certain negative connotations, made by popular through the media. We all know what these connotations might be: like “time bomb”, “horrific”, “horrible”, “robbing you of your mind”.

But even if you don’t conflate such emotive terms, it’s all too easy to implant as “them” against “us” view. “What’s it like to live with dementia?” However well meant, it sounds patronising.

Well you tell me – “What’s it like to live in Luton?”  Living well in Luton might depend on whereabouts in Luton you are, what type of residence in, what your expectation of living in Luton was like. You get the gist.

Increasing the diagnosis rates of dementia implies you confidently can diagnose dementia. But this is not certain – to make a diagnosis of dementia reliably you might have to follow somebody with time to see if there is any decline. As such it might be convenient to “blame” the doctor, such as a GP for “missing it”, but people’s presentation of conditions change all the time.

It not only places faith in our medics, but it places faith in our diagnostic criteria.

For dementia, this faith is misplaced.

Firstly, this endless mixing up of dementia with memory problems. You can be profoundly depressed, with no dementia, with substantial memory problems.

Do you wish an army of ageing people with memory problems to get worried they have missed out on a diagnosis of dementia, given that Jeremy Hunt reminds us nationally we are missing our targets?

It is Hunt who is both missing the target and missing the point.

Quite a lot of dementia is difficult to diagnosis. Somebody may have a specific but identifiable language problem for years, with no problems in memory. This might be a dementia called primary progressive non fluent aphasia, for example.

Somebody with logopenic aphasia dementia might have OK memory but have real problems with memory.

And what if you transplant on your definition of dementia that it has to cause a meaningful impairment (presumably to exclude people with minor cognitive problems).

People who demand a functional impairment for a dementia and encourage people to live well with dementia, such as through memory aids, perception aids, planning aids, and so on, are in a sense having their cake and eating it.

Say you can get in and out of a bath without any problem? Is this something you should wish to emphasise to a disability tribunal whose award might ultimately affect your award for mobility around London using the bus?

Whether we’ve moved on or not will be guided by how frequently I hear the words, “What it’s like to live with dementia?’, as if a person living with dementia is an oddity.

People with younger onset dementia tend to find it hard to grips with the stigma of the world around them knowing they have a dementia at an early age.

But they also tend to be worried that an employer might sack him or her, rather than making reasonable adjustments for this cognitive form of disability. This is in fact what you would DEMAND in employment and equality law.

Dementia friendly communities lets scrupulous employers off the hook too easily, and if anything gives them an opportunity to distinguish themselves in the market for being ‘dementia friendly’. Never mind that that employer would have no qualms in sacking you in your 50s if you developed dementia, saying it was some necessary reconfiguration mumbo jumbo?

Talk is cheap. Embrace my reality.  It is not a nice one, but gives a clue as to where we need to go from here.

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Persons living well with dementia are not 'curiosities'. So let's move on from this.

Quite to my surprise, I found that the ‘Pushme-pullyu’ from “Doctor Dolittle” has its own description in Wikipedia:

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A ‘Pushme-pullyu’ was therefore a ‘creature of curiosity’.

A common introduction to a session introducing dementia might be to ask the question, ‘How many of you know a person with dementia?’ About half of the room will put their hands up at this point.

If you change the question to, ‘How many of you know of a person with dementia?’, it is said that the other half of the room will put their hands up.

It must be, by the law of averages, be very likely that you will know of someone with dementia at the very least, as it is though that – conservative estimate klaxon – there are about 800,000 people living with dementia in the UK.

The “dementia friendly communities” plank is an important part of the dementia strategy “tripos”. In fact, it is one of the yardsticks by which the current dementia strategy in England is being judged.

This is, of course, “low hanging fruit”, as the number of dementia friendly communities will have certainly gone up from a figure tending towards zero.

It is impossible to argue AGAINST inclusivity and accessibility, especially since living with dementia has moved in policy terms from a biomedical model to a social one of disability. Therefore, making reasonable adjustments for people living with dementia is utterly commendable, and can be particularly challenging if certain disabilities are ‘invisible’.

But the term itself is problematic: “dementia friendly communities” DOES imply division – that people living with dementia, “the dementia”, are different to us.

There is still a stubborn feeling of stigma and discrimination, by some, towards people who have received a diagnosis of dementia. And part of the solution to that will be addressing bizarre pre-conceptions of what people living with dementia might be like.

But even within any one of the various ‘disease categories’, an individual’s lived experience of dementia will be different. That is the paradox of extrapolating too much from any one person’s experience of living with dementia.

I feel, though, we are still in “dangerous territory”.

I witness all the time people with dementia featuring in events to do with dementia in a tokenistic fashion.

While the organisers and participants of the G7 ‘legacy event’ will vigorously deny that this was a feature of their event, the answer by Dennis Gillings, “World dementia envoy”, whose particular expertise in living well with dementia is quite uncertain, to Helga Rohra, herself living with dementia, did raise eyebrows amongst the cognoscenti of this field.

At the other extreme, it would be nonsense to have no plenary speakers living with dementia in sensitive panel debates on topics to do with dementia. And yet this is exactly what happened in a recent high-profile event on ‘sexuality and dementia’.

But the idea that you’re “smashing preconceptions” about people living with dementia might at first sight seem perfectly laudable, and people should not be in denial, or showing ‘wilful blindness’, of their dodgy preconceptions of what dementia might be. The sinister side of the shock doctrine lying as a bedfellow with commissioning for dementia is that it’s well known private markets thrive on fear.

And why the need for hyperbolic language? It’s a bit like my pushme-pullyu example: the use of ‘shock doctrine’ to make a point. Why are people ‘shocked’ that brain scans might reveal significant atrophy of the cerebral cortex, and yet people can still function and be good fun to be with?

However, the whole approach must be articulated with extreme caution, as an unintended consequence of this approach might be to exacerbate division rather than to encourage inclusivity. And nobody wants this.

“Inclusivity” is a difficult concept. I sometimes balk at the idea of ‘involving people with dementia in assessing our research grants’, in the same way I perhaps ‘involve’ my postman when I take receipt of my mail every morning.

But with the greater high profile of the dementias, we all need to show greater levels of responsibility before we descend into a chaos of slogans.

 

 

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Loneliness in dementia is an important societal problem, but why is the proposed solution so exclusive?

“The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted, uncared for and deserted by everybody” Mother Theresa

I cannot recommend highly enough this account of loneliness in the context of primary care by Dr Jonathon Tomlinson in his powerful blog ‘A better NHS’.

In this, loneliness is a separable issue from whether a corporate can secure advantage by being ‘dementia friendly’: it is an important social construct.

Earlier year in a prominent medical journal, it was reported that feeling lonely rather than being alone is associated with an increased risk of clinical dementia in later life and can be considered a major risk factor that, independently of vascular disease, depression and other confounding factors, deserves clinical attention.

Social care for dementia in the real world, in England, is now on its knees. The reality, as a result of deliberate budget cuts from the current admnistration, is quite gruesome.

The campaign against stigmatising stereotypes of people with dementia is a worldwide one.

And yet Norman Lamb frontloaded a standard shill for the Alzheimer’s Society ‘dementia friendly communities’ programme with an elaborate fictional description recently with an elaborate description of a bed-wetting confused person. Such negative propaganda severely runs the risk of further evaporating goodwill for the Alzheimer’s Society.

Lamb comments, “But dementia can be a cruel condition, both for those who have it and for the people who love and care for them.”

It is hard to know precisely what this ‘shock doctrine’ is supposed to achieve, other than to inject a feeling of fear and moral panic for readers of the Guardian. But the article is an extremely manipulative one. It identifies a really important social issue, but makes no room for discussion for anything other than a discussion of the Alzheimer’s Society and their ‘dementia friendly communities’ programme.

The phrase, “So we need an assault on the twin epidemics of dementia and loneliness”, needs to have a big health warning on it. The number of cases of England for dementia has been falling in the last two decades, according to carefully executed research from Cambridge.

Lamb comments, “One million [dementia friends] are expected to be recruited by 2015.” But who’s doing the expecting? What are the penalties for not reaching this particular target?

“More than 50 cities, towns and villages are already taking local action to become dementia friendly.” But Torbay has been dementia friendly for years, but not on the list of Government-approved dementia friendly communities as it has not participated in the scheme run by the Alzheimer’s Society.

If you’ve been on a ‘Dementia Friends’ course, you can’t tweak it a bit and call it your ‘Dementia Friends’ course (apart from anything else as it is protected by a trademark on the UK register.)

There’s the bind. This exclusivity exists because one more ‘dementia friend’ somewhere is one fewer ‘Dementia Friend’ on the official scheme.

This can’t be called anything else but exclusivity.

So Norman Lamb has used a discussion about isolation in dementia to encourage exclusive behaviour. This makes us a laughing stock in our English dementia policy in the eyes of the rest of the world potentially.

Lamb refers to this scheme thus: “All of this should be just the start, the beginning of a massive social movement.”

But how organic is this ‘massive social movement’? The answer is not at all.

It is known that the £2.4 million programme is funded by the Social Fund and the Department of Health. And an eye-watering amount of money has been spent by Public Health England on this marketing campaign just gone as reported here, also to promote “Dementia Friends”.

Clearly not everyone is benefiting from local commissioning decisions to promote dementia. And these decisions have had a catastrophic effect on social interactions for some people with dementia, under the lifetime of this parliament.

For Norman Lamb to pop up and complain about loneliness in dementia having promoted this policy actively in England would it be like a Tory MP complaining his local law centre had suddenly shut down.

Earlier this year, a popular day care centre for people with dementia was reported as closing down. Staff at Mundy House day care, in Church Road, Basildon, were left devestated. Larchwood, the firm which runs the centre and adjoining residential home, claims the day care facility is not making any money.

Meanwhile, last year, a council was considering plans to close up to seven centres providing specialist care for older people suffering from dementia. East Sussex County Council’s cabinet were reported as set to discuss proposals which could see the closure of a number of centres providing day services for older people in Lewes, Bexhill, Hailsham, Crowborough and Hastings.

And, simultaneously at the other end of the country, a residential care home and day centre for elderly and vulnerable adults look certain to close in a shake-up. Plymouth City Council said Lakeside in Ernesettle and St George’s in Stonehouse were to be shut. The council said it was under financial pressures and numbers using the buildings were dwindling. It admitted that some staff would lose their jobs.

But ‘dementia friendly communities’, regulated by a strict standards protocol, or a badge of ‘Dementia Friends’, encourage exclusivity. Lamb in his article makes no attempt to widen the discussion to other possible means of inclusion.

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Here’s a valid approach, for example, involving the social media, from Lee on the popular “Dementia Challengers” platform:

“If you care for a relative with dementia life can seem very isolating. Carers sometimes live in a bubble, the roundabout of caring, sorting out finances, juggling family responsibilities and struggling with the challenge of keeping their relative safe, comfortable and happy. There may be issues such as family members not doing their part, or the carer may also have paid employment, young children or grandchildren to care for, or their own health issues. Many of the carers who contact me express their frustrations at feeling alone and unsupported.”

“Social media can be a great way to find other carers, and there’s a wonderful community on Twitter who support each other, share tips and good practice and lighten the day with comments, photos and light-hearted banter. If you are not already connected to the dementia challengers, I’d recommend you spend some time finding out how to use social media so that you can connect with this group of people. It’s easy to dip in and out of conversations when you have the time, or to use that five minute breather between other responsibilities to catch your breath and talk to someone in the same or a similar situation. Here are some tips about how you can use Twitter and Facebook to engage with other carers.”

And – providing supportive evidence for Lee’s argument – is a tweet by someone with familiarity with a rarer type of dementia, known as “posterior cortical atrophy”.

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And, if loneliness is so valued by Norman Lamb and colleagues, shouldn’t funding be flooding in for initiatives such as the Healthy Living Club in Stockwell? The group meets for four hours each week for a programme of activities as a focus for the local community, to promote the mental and physical wellbeing of those people well with dementia. Each meeting is run as a social event, which people attend to meet each other, have a good time and share experiences. The Club is run with a team of volunteers and some sessional contributors, led by a paid co-ordinator. It is seen as a blue-print for future dementia care in the community.

Finally – we do know that David Cameron has genuine problems with the ‘C’ word – that is, “caregivers”. He recently managed to get through an entire answer in Prime Minister’s Questions, on zero-hours contracts, in the care industry without mentioning specifically ‘carers’ or ‘caregivers’.  But if they are invisible as the army of millions without whom dementia care in England would implode, would be a big surprise if their loneliness too was completely ignored?

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