Don’t mourn, but organise!

It’s claimed that the British trade union movement, in response to yet another battering of the left-of-centre political parties at the general election in 2015, produced the clarion call, ‘Don’t mourn, but organise!’ The saying, originally associated with the last words of a singer and activist called Joe Hill it is reported, has become synonymous with a severe defeat.

The diagnosis of dementia, imparted to a person and his or her friends and family, can be perceived as a severe defeat. With a relative lack of pure biomedical offerings for symptomatic treatment or cure, currently, or indeed drugs to halt progression of the disease, persons on receiving a diagnosis can be expected to commence an endure a prolonged period of a type of ‘mourning’. The expectation of packing up your day job or dissolution of friends of family can be overwhelming, if an alternative of reablement through the social model of disability is not even ‘on offer’. It is estimated that there are currently about 47 million people in the world living with dementia.

I often give ‘Dementia Friends‘ sessions to the general public. Such information sessions can lead you to bring into sharp focus your own thinking indeed. I was asked about the ‘diagnosis gap’ recently by a salaried GP from West London: this is the gap between potential diagnoses of dementia in the community, and the actual number of diagnoses given. This shortfall has had a number of reasons associated with it across the years, and English policy has tried to reduce this gap.

Chris Roberts was told his diagnosis of mixed dementia, Alzheimer’s disease and vascular dementia, a few years ago. His dementia is what is called a ‘young onset dementia’, as it presented before the age of 65. However, Chris had a history of emphysema, a disease of the lung which can produce shortness of breath and marked decrease in oxygen saturations. Such low oxygen (hypoxia) can indeed cause memory problems. Chris underwent a series of systematic tests before finally arriving at a diagnosis. That is why you always hear Chris about preparing to wait for a proper and correct diagnosis in a ‘worth the wait’ manner.

Chris is passionate about educating others about dementia. He is in fact the Alzheimer’s Society regional ambassador for Wales, a contact for the Alzheimer’s Research UK, a ‘champion’ for Join Dementia Research, a delegate for Dementia Action Alliance, passionate about supporting Young Dementia UK, a Dementia Friends champion, amongst his main commitments. Such experience has been very recently recognised in his deserved appointment to the committee appointed by NICE (the National Institute for Clinical Excellence).

The basis for the doctor-patient relationship is based on trust and confidence. And yet the statistics surrounding how a diagnosis sometimes not being imparted are staggering. The whole ‘mix’ of reasons is complicated, including a reluctance by some not wanting to be given the diagnosis of dementia, but 37% of people with dementia in the UK do not receive a formal diagnosis, and the length of time you have to wait to receive a diagnosis varies hugely depending on where you live, from two weeks to over six months. For some time now, the Alzheimer’s Society has been doing its ‘Right to Know’ campaign.

In English policy, there have been correct concerns that accompanying the drive for diagnosis should be an equal sustained improvement in post-diagnostic care and support for a person with dementia. This might include a care coordinator, information sharing between care services, multi-disciplinary input as or when required (e.g. from a physiotherapist, speech or language therapist, occupational therapist, clinical psychologist, specialist nurse), enhanced healthcare across a diverse range of care settings (including at home, residential care homes, hospitals and hospices), better advanced care records and planning, better end of life care, and so on. Clinical nursing specialists have in particular a pivotal role in helping with coping strategies for carers, who very often find themselves under strain whilst doing valuable and rewarding work. And an optimal system must include dementia advisors and dementia support workers too.

Chris himself spoke briefly about this topic last year at the Alzheimer’s BRACE conference in Bristol.

Chris produced a brief ‘wish list’, which started with ‘joined up services’.

Here in a recent Care England/ITN debate, Beth Britton, well known campaigner and advocate in dementia care, says, “In my own experience, for my dad, integration simply did not exist.”

The cuts in social care funding over the last few years have been devastating. Such cuts have had an impact on the delivery of NHS care, for example in delayed discharges from hospital, but it is clear that the social care profession need proper resources and time to care in itself.

The Alzheimer’s Society is currently looking at standards in post diagnostic care and support for dementia, and this will be an extremely welcome contribution to the narrative here in England. A substantial contribution has been made previously by the Care Quality Commission in their ‘Cracks in the pathway’ document, which, while celebrating outstanding care, did concede simultaneously that bad care did exist and could not be accepted. Often care faltered at discontinuities in the care system, notably.

Life experiences matter enormously, as through building up a picture of how people have lived beyond their diagnoses of dementia in the community is critical for us all to understand dementia. Wendy Mitchell never fails to amaze me in the sheer commitment she puts into her campaigning, which includes describing her experience of early onset Alzheimer’s disease, including through her blog ‘Which me am I today?‘. Alzheimer’s disease is the most common type of dementia worldwide, typically presenting with significant problems in learning, memory, navigation and/or attention. Wendy is passionate about promoting dementia research particularly. Wendy will indeed be discussing with Gavin Terry in policy from the Alzheimer’s Society the need for an effective post-diagnostic network next week in ‘NHS Expo’.

In the UK, there are some remarkable individuals who stand out also as leaders, living with dementia. I can think of immediately Hilary Doxford, who happens to be the delegate living with dementia for the World Dementia Council. Also, Ken Howard is an Alzheimer’s Society ambassador, and Dr Jennifer Bute (and who recently featured in BBC Radio 4’s “A doctor’s dementia“. I am also mindful of Agnes Houston MBE, living with dementia from Coatbridge, Scotland. Valerie Blumenthal also has been outstanding in sharing her experiences of what it’s like to live with a relatively rare type of dementia; and has just finished what I am sure is another excellent book. And these are just a few names from the UK; there are many more in Europe, and indeed next week’s Alzheimer Europe conference in Ljubljana, Slovenia, will allow time for many social and professional gatherings.

There is no doubt that huge strides have been made in ‘engagement’ and ’empowerment’ of people with dementia. I do not wish to underestimate this. But I do find the word ‘engagement’ as a term a bit limp; for example, I do not as such ‘engage’ as postman when I receive my post from and chat with him daily. You can’t “half believe” in equality or inclusivity, I feel. It has to be more than perceiving people living with dementia as ‘living with an illness’ in the strict medical model, and getting away from the ‘does he take sugar?’ mentality which can inadvertently rear its ugly head. I feel the next obvious advancement is to advance empowerment to a further level, and to have those people who want to, living with dementia, also leading on policy. Chris’ appointment to NICE and Hilary’s appointment to the World Dementia Council, while conceding that a few representatives for the millions with dementia are inadequate, have been the necessary first step in this process, I feel.

There are ways of not mourning but organising, through for example the European Persons with Dementia (chaired by Helga Rohra), or internationally through the Dementia Alliance International (chaired by Kate Swaffer). Therefore, if one truly believes in genuine equality, we should be jumping at the chance of equipping those people with dementia who want to with the leadership skills to promote authentic advocacy. This will meet with some resistance from others, I am sure, but this is essential if we are to go beyond ‘friendliness’ and cut into the icebergs that are stigma and discrimination.




Making sense of dementia around the world – going beyond apples and bananas

]Is there or is there not an ‘epidemic’ of dementia?

Last week’s study published in the Lancet was focused on Western Europe. There, to assess whether dementia occurrence has changed during the past 20–30 years, investigators of five different studies done in western Europe (Sweden [Stockholm and Gothenburg], the Netherlands [Rotterdam], the UK [England], and Spain [Zaragoza]) have compared dementia occurrence using consistent research methods between two timepoints in well-defined geographical areas.

But we have a new update, as of midnight last night.

However, according to the new World Alzheimer Report 2015 (“the Report”) from Alzheimer’s Disease International, the authors estimate that “58% of all people with dementia live in countries currently classified by the World Bank as low or middle income countries”. And these authors argue that “proportionate increases in the number of people living with dementia will be much steeper in low and middle income countries than in high income countries.”

Put simply, the second study has a much bigger spread, including those countries where prevalence is likely to be going up, not ‘stabilising’.

But before I go on, I’d like  to say something important

– that ADI have made it very easy for us to access their data this time around. There’s a special website with the report, implications for various stakeholders, infographics showing key statistics about dementia, and the ADI/BUPA Global Charter “I can live well with dementia“.

There are two big issues with measuring the prevalence of dementia in a particular country.

Firstly, the prevalence of that particular country is likely to be affected by the ‘ethnic mix’, and habits in smoking, exercise, or diet; access to healthcare including blood pressure control; and the such like.

And secondly, how you get to know whether someone’s got dementia at all will inevitably affect your ‘detection of dementia’ statistic. There are various ways of defining whether someone has dementia, and the Report alludes to the new kid block on the measurement block, DSM-5, which looks at some form of abnormal cognitive impairment. The authors of the Alzheimer’s Disease International in their desktop review of all suitable studies have tried to reach a consensus on those that they’ve included. It’s particularly interesting here what the best way of making that diagnosis might be, e.g. neuroimaging, neuropsychology, genetics, CSF; but you get the impression the authors aren’t that picky.

The fact that the authors have excluded all studies with young onset dementia persons only means, potentially, we’re not really getting a good picture of the young dementia prevalence worldwide.

This is particularly shocking if we want to be able to make some policy recommendations about employment and workforce engagement of people below the age of 65 who receive a diagnosis of dementia while at work (and possibly with a young family).

Also, the lack of an informant history in the informant history is clearly going to be a problem when you rely on the diagnosis of the dementia, in terms of behaviour not cognition, coming from an informant history – as for the young onset behavioural variant frontotemporal dementia.

And the 2015 World Alzheimer Report does not really attempt to comment as much as I would have liked on possible differing success rates of diagnosing dementia in different jurisdictions as a result of inadequate culture-fair tests, and whether they load too much on language skills. The 10/66 group have in fact done some excellent work in this area. Another case of apples and bananas?

Different jurisdictions are going to have different abilities of making a diagnosis of dementia. For example, some of the sophisticated tests we see in ‘Still Alice’, such as blood perfusion imaging or genetics, may not be available in low and middle income countries.

But this sort of inequity in healthcare does need addressing if we are to have a coherent description of ‘world dementia’.

The Report continues with the mantra ‘care for today, if not cure for tomorrow’. The Report says remarkably little on the success (or not) of drug interventions for dementia. But, even if this discussion is to be skirted around altogether, there is clearly some sort of relationship between the resource allocation for the ‘magic bullet’ and the amount of money used to fund social care.

It is impossible to believe that the relentless cut in social care funding in England has not impacted on the wellbeing of persons with dementia in England, and that of caregivers; and one would assume similar issues to hold for other jurisdictions. Yet more apples and bananas?

But what I found most intriguing was the exclusion of people in residential care from the Report (p.11: exclusion criteria contain “studies of nursing home or residential care populations”.) This is staggering when you consider the huge numbers of people with dementia in residential care, and in some jurisdictions living in residential care is as in vogue as living at home.

And the relative compositions of these populations will not only be an artifact of cultural variations but also the socio-economic-political policy of particular countries. And related to this is the different populations of the informal caregivers – clearly relevant given the huge take home message of this report that a substantial location of people living in the World are in Asia and in Africa.

So one gets the impression from taking the report as a whole, while the numbers are interesting, it’s like comparing too many apples with too many bananas? Take for example the analysis in whether the ‘costs’ of dementia are going up or down. The numerous caveats on this include not only the increase or decrease  in demand, the sheer scale of costs inflation in macroeconomics, but also intrinsic changes in service provision (such as large scale transformation to integrated care).

Requiring this further will require much precision in analysis – as it happens that more intelligent use of technology might drive costs down as well as up. Too many apples and bananas to cope with, this time?

The key recommendations of the Report, however, are eminently sensible:

  1. We must now involve more countries and regions in the global action on dementia. By 2050, 68% of all people living with dementia will live in low and middle income countries (LMICs), so it’s vital we are able to help them provide services and support.
  2. Risk reduction should be made a public health priority, with a focus on tackling the shared risk factors with other non-communicable diseases (NCDs) like cancer and diabetes
  3. The World Health Organization (WHO) ‘Call for action’ should now be made into a ‘Dementia Action Plan’ with clear targets for the 194 member states. Alzheimer’s Disease International (ADI) will continue to work closely with the WHO to ensure that people living with dementia and their families are put at the centre of all policies in pursuit of better access to services and support.
  4.  More money must be invested in research, with a more balanced distribution into programmes for risk reduction, treatment, care and cure.
  5. The G20 group of nations should now lead politically on this issue, building on the commitments made by the G7. Today, 80% of people living with dementia live in the G20 countries, compared to just 28% in the G7 nations.
  6. National dementia plans should be developed by all countries to help support people living with dementia and their caregivers. These plans should be monitored and renewed on a regular basis.

But this is where I think we need to find one big sledgehammer to crack the apples and bananas nut. We do need something universal – which applies to human beings. And that, of course, comes in the forms of human rights and rights for people with disabilities from the United Nations.

I was pleased to see these specifically mentioned in the section on ‘accessibility’, viz:


These United Nations instruments, I feel, like at the core of providing the legal justification for providing autonomy and dignity, and for providing fundamental standards in reablement and rehabilitation in the social model of disability. Dementia is a form of disability (enshrined in law in England through the regulations for the Equality Act (2010)) for example.

And we do fundamentally need to have much more research not only on quality of care but also quality of life and how generally one might live better with dementia if you’re a person with a diagnosis or a carer. This means a rebalancing of the research economy. I note that ADI have indeed called for this, and I fully support this.


The Report, as an epidemiological contribution, has too many comparisons of apples and bananas and assumptions for me; but it is a superb piece of work. I am disappointed that there is little more than one paragraph as a seeming sop to the issues of young onset dementia, but without any epidemiological data to accompany this sole paragraph maybe that was an achievement. There was no discussion of how dementia friendly communities might exist around the world, particularly in those parts of the world we were told many times are the foci in numbers, Africa and Asia. But taken as a whole as work in progress Alzheimer’s Disease International and the authors of this report must be congratulated on a substantial contribution to the field.

Dementia and ‘the numbers game’

In some ways, reporting on the dementia prevalence statistics – that is, how many people are thought to be living with one of the 130 or so dementias at this time – is like reporting on the official unemployment statistics. An eager audience can quickly observe whether the overall statistics appear to be going up or down, and why.

The usual shrill of ‘every unemployed person is a statistic that represents a personal tragedy’ has its parallel with the diagnosis of dementia. The diagnosis of dementia is a significant life event not only for the person considered after all the investigations and medical history to thought to have a dementia; but also a huge event for those closest to him or her.

Policy by spreadsheet inevitably is an inadequate affair. Public health doctors are continually reminded to treat the person, not the data point. Nonetheless, the recent review of the epidemiological evidence and implications for public health policy from Prof Carol Brayne and many colleagues elsewhere was, I feel, very helpful.

The overall position is this: dementia has numerous causes, and may not be totally preventable for the most part. People disagree on the whole on the contribution of non modifiable risk factors to your chance of being diagnosed with dementia.

Parking this aside, the possibility that low education and low social class might be contributory factors to dementia are potentially interesting. This inevitably produces the ‘what about?’ arguments – in this case, what about the famous and celebrated novelist Iris Murdoch who was very educated and still developed dementia?

That there are features in your environment which not only might be said to be preventative for dementia but also relevant to the quality of life for a person with dementia is important. The co-morbidity of certain medical conditions, such as high blood pressure or high cholesterol, is relevant; so is requesting a lifelong smoker to give up smoking.

Their overall conclusion is ‘the number of people with dementia in some western European countries is stabilising, despite population ageing.’ But I suspect that it will be rather difficult for this simple message to combat the ‘dementia time bomb’ moral panic headlines. Sensational dementia reporting, even if inaccurate or bordering on fraudulent, sells copy.

If the overall numbers of dementia are going down, that might mean it’s harder to raise funds for dementia. But I think this is wholly to do with how charities big and small wish to pitch their ‘retail offer’ to potential supporters – the charity might wish to put all their eggs in the cure basket, or might wish to be actively supporting those people aspiring to live better with dementia.

Focusing on the numbers game might mean hitting the target but missing the point. I suspect a massive danger of focusing on the ‘numbers game’ is that we’re far too uncritical in considering the ‘numbers of what?’  We know that mild cognitive impairment represents a condition, not all people living with it go on to develop dementia; but how we classify the two matters.

Also, I really don’t feel we have nearly enough clarity about the numbers of people living with young onset dementia, in other words dementia before the age of 65. There are far too many swathes of policy which can be overtly ageist in approach, and I don’t want epidemiology to be one of them. We need to know about the impact (and value) of people with younger onset dementia, around the world.

People living with young onset dementia often have employment and financial considerations, young families and other social networks which are thrown into disarray with the diagnosis of dementia. Presenting a message that the overall numbers of dementia appear to be ‘stabilising’ doesn’t do much for them; and may be actively misleading, particularly if it happens to be the case that, even accounting for total population, the numbers of people with young onset dementia appear to be increasing.

On the other hand, the ‘numbers game’ does provide us with a useful metric to think about the effect of public health interventions, but then again this is in the suite of another possible instruments, such as ICHOM or ‘the cognitive footprint’.

This is definitely what might call ‘work in progress’.

Attendance allowance, ICHOM and avoidable admissions for dementia

Almost like a ‘blind spot’ in English dementia policy is the effect of the benefits system on the wellbeing of people trying to live better with dementia and their closest ones who find themselves often being thrust into the rôle of unpaid family caregiver.

It is anticipated that there will be news of ‘ICHOM’ soon. ICHOM is the International Consortium of Health Outcomes, and will provided a much needed ‘better value’ focus on the delivery of healthcare and living better with dementia.

ICHOM bring together working groups, made up of clinicians, methodologists and outcomes experts, registry leaders, persons with conditions and their carers, social workers and allied health professionals – the multi-disciplinary team involved in the entire care cycle.

The language in policy of ‘productivity’ and ‘efficiency’ often are not the most appropriate in weighing up how good dementia care, unless one is considering the throughput of flow of the acute hospital admission possibly.

There have been some inroads into thinking about ‘unplanned hospital admissions’. Here there is a policy sensitivity in not wishing to frame the hospital admission as a ‘failure’.

The King’s Fund in a document called ‘Better value in the NHS’ helpfully identified a number of important factors which could be addressed.

There is evidence that the following interventions can help reduce unplanned admissions in the following selected patient populations: namely, for example, specialist clinics, education and self management, rehabilitation, care home liaison, care coordination, telemedicine and preventive health checks.

It is evident that there are key areas for improvement efforts: such as prevention of falls in the community, reducing admissions for ‘ambulatory care sensitive conditions’ such as COPD, urinary tract infections or pneumonia, tackling problematic polypharmacy, and reducing admissions from care homes.

The aim of ICHOM is to bring together working groups, made up of clinicians, methodologists and outcomes experts, registry leaders, persons with conditions and their carers, social workers and allied health professionals – the multi-disciplinary team involved in the entire care cycle.

This appears consistent with plans for the ICHOM ‘draft wheel’, which embraces a number of important areas potentially: neuro-psychiatric – includes anxiety, depression, behaviour, apathy, psychosis; cognitive – includes memory, orientation, verbal fluency and executive function; social – includes community affairs and relationships; daily living – includes activities of daily living, sleeping and eating; overall quality of life and wellbeing – includes autonomy, finance, enjoyment of activities, pain, dementia knowledge and understanding and life as a whole, communication; carer aspects  – includes quality of life, carer depression; falls; clinical progression including events such as confusion or delirium; and medication.

It would clearly be helpful if ICHOM does not operate in a ‘silo of its own’ in policy circles; and some effort is made to harmonise ICHOM with the social determinants of health (such as education, housing or transport), or dementia friendly communities/age friendly cities.

I am loathed to use the term ‘burden’ in relation to the carers, not because I do not want to airbrush out ill being, but out of respect for the intensely rewarding nature of caring for many. But there is no doubt that there are numerous factors which can cause strain on the carer, such as physical and mental health, or financial affairs, for example.

Some time ago, the Barker Commission from the King’s Fund reported on a ‘new settlement’ for health and social care. The Commission argued for much greater alignment between health and social care.

Critically the Barker Commission identified the Attendance Allowance as being a key benefit in the health and social care system: “It is paid to those who need frequent help or constant supervision, and the eligibility criteria for it have marked similarities to those for social care – ie, the need for support in activities of daily living such as preparing food, eating, washing, dressing, going to the toilet and medicines compliance, and whether someone is a risk to themselves or others.”

In March 2015, some infrequent research was published on the ‘quality’ of primary care and unplanned hospital admissions. This paper by Panagiotis Kasteridis  and colleagues was especially helpful as it threw some helpful light on dementia:

“This research adds to the sparse literature on the relationship between primary and secondary care for dementia patients and in particular on the ‘protective’ effect of higher quality primary care (as measured by the QOF) on emergency hospital admissions. Whilst this association does not necessarily imply the relationship is causal, we have made efforts to ensure the robustness of our methods and undertaken extensive sensitivity analyses to demonstrate our associations are qualitatively consistent. Our study quantifies the relationship using panel data to account for potential confounding effects, and is the first to explore the impact of under-diagnosis on the relationship between quality of primary care and hospital admissions. Another novel finding is that a social benefit, Attendance Allowance, was consistently associated with lower unplanned admissions (typically by around 2%) in practices where a higher proportion older people were living in income deprivation. Efforts to remove barriers to accessing social support could therefore be targeted towards these disadvantaged groups, and policy makers may also wish to investigate the level of benefit needed to prevent admissions. However, further research is needed to verify these findings and to guide policy.”

Whilst the overall tendency has to been to try to construct the narrative in ‘cost neutral’ terms if possible, in other words ideally getting a dementia friendly community without substantial financial investment, it is clear that money injected strategically into parts of the system will have a direct effect on the wellbeing of persons with dementia and carers. The rôle of the benefits system is one such area, and it would be timely of ICHOM to acknowledge their importance somehow.

We, as individuals, do not possess all of the picture

In passing yesterday, Alison Cameron in her “EdgeTalks” presentation mentioned across a few sentences that we, as individuals, do not possess all of the picture.

In the same way it has become very easy to let the words ‘no decision about me without me’ trip off the tongue, without necessarily thinking whether people are walking the walk as well as talking the talk, there has been relatively little said about the meaning of the ‘lived experience’.

How dementia actually shapes one’s life is impossible to understand from the perspective like me not living with dementia. The part of the picture a neuropharmacologist might paint is how dementia is fundamentally a chemical balance, but with the right drugs some of the symptoms ‘might go away’. Or it could be a neurobiologist’s view of alien plaques clogging the brain, which somehow need to be removed.

Like working out you’re handling an elephant, while wearing a blindfold, and only touching its tail or trunk, we only can make deductions as good as the information we’re given. A purely neurochemical or neurobiological won’t be able to give a coherent account of a person with dementia relational links to the outside social, economic, political, legal or technological world.

But I feel the story begins with what happens when a person is given a diagnosis of probable dementia; and ideally that person is not saddled with that news in isolation. Despite all the best will in the world about engaging and empowering people, the media continue to use headlines such as ‘Dementia victims getting younger’ as appeared in the Times only the day before yesterday.

It is intriguing the degree of disruption that a dementia has for people – whether they will notice a defining event in their autobiography when the possibility of dementia became a very serious one. Compare this, for example, to an acute onset of psychosis in first-episode schizophrenia.

One is all too aware that the autobiographical disruption of the diagnosis of dementia is often signposted by the cack-handed way in which the medical profession can impart the diagnosis. Some of the descriptions of the diagnosis disclosure are truly terrifying.

I don’t think it’s possible to be glib about ‘lived experiences’. At first it might seem a bit melodramatic for regular speakers at dementia conferences to give up a place for a person living with dementia, as indeed the Dementia Alliance International suggested recently, but this indeed is to focus one on a number of important issues. But it is also true to say that there are some people without dementia who know a lot about other aspects of dementia too.

I have previously brought up the notion of who owns and controls policy in dementia; often this can usefully discussed in conjunction with who stands to benefit from policy in dementia. If I’m being blunt, I think the only way to reframe the narrative on policy, so some of the 47 million in the world living with dementia can stand to gain, is to allow people with dementia to lead on policy. This is not tokenistic engagement; but true leadership.

Secondly, I don’t think it’s wise to discount the medicine altogether; but only that this colonisation of the narrative by medicine, perhaps accentuating the power of the cure, has to be either resisted or justified in some narrative analysis. We’ve come a long way in the consumer-survivor-ex patient movement, an idea which promotes recovery.

Recovery is an extremely potent weapon in dementia, if you forgive me for yet another military metaphor in discussing dementia. Whatever challenge to the mind one encounters, recovery represents a unique individual reaction to that challenge, which draws positive for what you can do knowing what you can’t do. This is a comforting paradox, but does not rely on ‘cure’.

But above all I think the power of personal narratives is that it allows people with their own personal stories to tell to contribute them to the benefit of the rest of society. I think of these stories being brought into the public arena, so people can offer feedback on them. There might be, for example, common strands in many of the stories, offering real scope for peer-peer support. Or there may be some personal narratives which just seem ‘odd’, which may need to be re-articulated with collective help.

This is to bring the ‘purpose’ of narratives into the domain of Habermas’ theory of communicative action, and lifeworld, but the details I think are unimportant. But what I think IS important is not fixating on the medicine, at the expense of a social model of disability. What I think is crucial is giving people hope, and not consigned to an early social death from a diagnosis of dementia.

Can a National Health and Care Service make parity a reality?

The distinction between ‘medical’ and ‘social care’ is effectively an arbitrary one for many people with dementia, but this distinction has a disproportionate impact. When I give my ‘Dementia Friends’ session once a month, I emphasise that dementia is caused by conditions of the brain. The big ‘hitters’ in dementia are Alzheimer’s disease, frontotemporal dementia, vascular dementia, diffuse lewy Body dementia, posterior cortical atrophy, and many more.

Despite all having their own medical (including biological) footprint, I urge people to see the person not the dementia. As a junior physician many years ago, I would often hear senior consultants in a large prestigious teaching hospital say words along the lines of “Don’t worry about him – he has dementia.”

I essentially feel that Dementia Friends has been a huge advance in educating the general public about dementia – but we were coming from a low baseline. As a society, I feel it’s imperative to ask ourselves why people on receiving a diagnosis of cancer might wish to tell their family, friends or employers, and participate in the latest clinical trials, but unfortunately we appear to lag behind in dementia.

Over the next few years, I look forward to other jurisdictions cogitating about the lessons learnt from the English ‘Dementia Friends’ campaign. But we do need how to educate employers about young onset dementia, or make the system following a diagnosis less of a higgledy-piggledy mess for all concerned.

That cancer is a medical issue and dementia is a social care issue is for me an unacceptable oversimplification. A lot can be done to empower people to live well with cancer, although the piecemeal in curative or absolute remission therapy for various cancers has been remarkable. Despite a lack of a cure yet for the main causes of dementias, a lot can be done to give people with a dementia a fighting chance to live to the full.

We do have a situation where people do have to use up their life savings to contribute for care costs for someone with dementia. There are powerful forces at play which I suspect will see people living better with dementia at home rather than in residential settings, but this is, by no means, that residential care is the failure end of policy.

Nye Bevan famously wrote “In place of fear” which is indeed one of the few books I have ever read from cover from cover. Whosoever you think is best placed to capture ‘the spirit of 45′ is completely up to you. But bringing together health and care under Andy Burnham’s proposed Health and Social Care Service would be a massive step forward. I strongly recommend to you his views here.

The system currently is ‘broken’, as indeed Lucy Frost correctly articulated on at the recent RCN Congress by the seaside. The symbol of accident and emergency departments or medical admission  being ‘clogged up’, with people neither being able to be admitted or to be discharged from hospital. The issue of delayed discharges is important – it is equally important to state that investing in clinical specialist nurses, with special regard to the personal plans of NHS patients and coping strategies of carers, and a flourishing social care workforce are essential. Investing in dementia advisors or dementia support workers is no less important either.

The voluntary sector have a pivotal part to play, and indeed the concern is that in relying on them to increase the capacity of the system overall, we are leaving behind a malnourished State. Social care funds have not been ringfenced since 2010, and indeed have been consistently and progressively diminished. What happens to social care funding in the next comprehensive spending round is going to be critical to watch.

I’d personally like to see social care not to be viewed only through the prism of crisis management, although practitioners in social care undoubtedly have a huge part to play there. With correct investment in workforce training and performance, social care practitioners have an unique opportunity to help people with dementia and closest ones to live as fully as possible. This is sadly not where social care funding from recent years finds itself.

While there is a lot to be down to break down barriers, such as training paths, funding streams, operational processes, differences in strategy, a National Health and Social Care is a necessary first step in making ‘parity a reality’.  Otherwise, parity of esteem, like integration, is yet another slogan theme where there’s been all foreplay and no action.

Operationalising ‘the cognitive footprint’

It is widely accepted that well-being is a multidimensional concept encompassing multiple domains of human functioning (McGillivray, 2007).

Objective and subjective well-being is fundamental to many international economic strategy recommendations and the measurement and monitoring of both is increasingly required for policy development and evaluation.

There has recently been a surge in interest in measuring wellbeing at a national level, a policy plank which has grown to prominence in recent years. There is absolutely no reason why dementia should escape this approach, particularly since the promotion of wellbeing is the statutory aim of the Care Act (2014).

“Dementia 2012″ was the first in a series of annual reports for the Alzheimer’s Society. YouGov completed a poll of the UK adults for Alzheimer’s Society in December 2011. 2,070 individuals were asked about both their own quality of life and their perceptions of how well people are able to live with dementia.

That poll found that 17% of people with dementia responding to the survey said that they are not living well with dementia at all, 55% said they are living quite well with dementia and only 22% said that they are living very well with dementia.

This survey had been distributed to people with dementia via Alzheimer’s Society dementia support workers and dementia advisers in England, Wales and Northern Ireland.

Just shy of the weekend currently in progress, I read a contribution in dementia policy, co-authored by one of my previous bosses, Prof Martin Rossor. The other co-author was Prof Martin Knapp. The short piece is called “Can we model a cognitive footprint of interventions and policies to help to meet the global challenge of dementia?”, and is on the Lancet platform here.

Knapp and Rossor raised the issue of a “cognitive footprint” thus.

“Can we develop a so-called cognitive footprint that, as with a carbon footprint, can be either negative (impair cognition) or positive (enhance cognition)? A cognitive footprint could then be used to assess and model potential cognitive effects of medical and public health interventions through to social and wider public policies. It could be identified across many public policy areas, including health, social care, education, criminal justice, transport, sport, employment, and doubtless others. The importance of this footprint stems from links between cognitive skills and educational attainment, employment status, earnings, performance in instrumental activities of daily living, and (at national level) to income distribution and economic growth.”

There are methodological issues to do with a ‘mass survey’ of people with dementia.

First of all, there’s the ethical issue of consent. As such it’s not a clinical trial, and even then special considerations are being used to involve as many people as possible in research ethically as possible. One would have to confirm that this survey did not require local or national clinical ethical approval; and if not, such approval would have to be sought.

Secondly, one would have to select arbitrarily a size of the sample. A good starting point would be a comparable number to the Dementia 2012-5 samples. Also, there has never been any comment to my knowledge regarding the composition of these samples. For example, would the sample comprise of people with dementias reflecting the natural national prevalences of the different underlying conditions, such as Alzheimer’s disease? Might it be helpful to do a separate survey for people living with dementia under the age of 65 (so called ‘young onset dementia’)?

Thirdly, how would one do the survey?

It makes sense, for example, to do the survey electronically; but this raises questions how confident people living with dementia feel in participating in electronic surveys? Such surveys would be expected not to offend the Equality Act (2010). I know from my own personal experience that I blog sometimes with the option of the audience selecting a large size of print (this is for people living with a posterior cortical atrophy type of dementia, where reading difficulties can be noteworthy.)

And how to measure the wellbeing metrics?

I feel a useful starting point would be to use the methodology of the Office for National Statistics in measuring wellbeing currently. One example of their recent outputs is here.

There are other valid approaches. For example, this paper charts the development of the UK validation of a general measure of subjective well-being: the modified BBC subjective well-being scale (BBC-SWB) (“BBC paper”).

The ONS describe a whole plethora of measures and helpfully provide supportive literature. Particularly relevant here are the ONS’ attempts at measuring ‘social capital’, which could prove to be helpful to the measurement of ‘cognitive capital’ of Rossor and Knapp.  Also, the ONS provide a basis for ‘international comparisons’. Clearly, for us to make comparisons with other jurisdictions, one would need to run the same methodology abroad, say, with supportive charities (such as Alzheimer’s Australia or the Alzheimer’s Association), maybe under the auspices of the Alzheimer’s Disease International.

Table 1 of the BBC paper presents a series of questions for investigation, but they could be easily adapted to ask about the domains of the Rossor and Knapp paper.

“Are you happy with access to criminal justice?”

“Are you happy with opportunities to do sports?”

The document “Measuring  Subjective Well-being” from Lucy Tinkler and Stephen Hicks at the Office for National Statistics (2011) helpfully summarises the theoretical underpinnings of this type of work.

Three broad approaches have been identified when measuring subjective well-being; ‘evaluative’, ‘experience’, and ‘eudemonic’.  That’s why it would be important to include some ‘core questions’, viz:

  • overall, how satisfied are you with your life nowadays? (experience)
  • overall, how happy did you feel yesterday? (positive affect)
  • overall, how anxious did you feel yesterday? (negative affect)
  • overall, to what extent do you feel the things you do in your life are worthwhile? (eudaemonic)

The ONS approach to measuring subjective well-being “is a balanced approach, taking into account the different ways that subjective well-being can be measured.”

Previous wellbeing research has thrown up some interesting anomalies.

For example, there’s the notion of the ‘happy peasants’, that very poor people can be extremely contented; or put another way, the relationship between income or GDP and quality of life or wellbeing is poor. Likewise, it has been shown that wellbeing does not necessarily correlate with ‘severity’ of dementia, howeverso defined or measured.

I fully expect future research to throw up some anomalies. We might find that countries with the highest incomes do not necessarily show the highest subjective ratings of wellbeing.

This brings up a final methodological consideration. How good are people living with dementia at rating their own wellbeing? This is a relatively under explored area of research, although there is a growing area of research in dementia into degree of insight into cognitive symptoms and lack of insight (anosognosia).

But Rossor and Knapp should be given credit for opening up an extremely area of research, which will be important both nationally and internationally.


Recommended reading

McGillivray M: Human well-being: issues, concepts and measures. In Human well-being: concept and measurement. Edited by McGillivray M. Basingstoke: Palgrave Macmillan; 2007:1–23.