prevention

English dementia policy may be weighted too much towards prevention, diagnosis and future cure

Shibley Rahman 0 Comments

cake slice

In the words of Ian Dury and the Blockheads, there are indeed “reasons to be cheerful” about the English dementia strategy. We need a strategy, but we need to think about the imperative for “the cure” while appearing to neglect finer details of care. Furthermore, the actual quality, as well as quantity, of diagnosis merits scrutiny.

The need for a strategy

Our English dementia strategy has some key prongs from the clinical perspective – prevention, diagnosis, care, support, palliative care/end of life approaches and cure. How these components are balanced has practical implications for funding and resource allocation. Underpinning this is the need for high quality research, in both cure and care, qualitative and quantitative, non-molecular and molecular, and so on.

England currently does not have an up-to-date dementia strategy. The last ‘five year plan’ expired in 2014, and was supposed to be renewed. Baroness Sally Greengross, the previous chair of the All Party Parliamentary Group on dementia, made clear many times that the intention would be to recapitulate what had worked (or not) in the document from 2009 before progressing. This work, if indeed done, has never been published to the best of my constructive knowledge.

There are regional differences in national strategies, although the benefits of national plans have been described at great length elsewhere (an initiative spearheaded by the charity Alzheimer’s Disease International). Many feel that the first and only English strategy to be published by the Department of Health so far, entitled “Living well with dementia”, is very heavily weighted towards diagnosis and combating stigma through initiatives such as ‘dementia friendly communities’. This is in comparison, say, with the Australian jurisdiction which emphasises, it is said, primary care.

Karen Dening last year mentioned in the Dementia Congress in Telford that cooking dementia policy was ‘like cooking a cake’. Karen who is Director of Admiral Nursing for the leading charity Dementia UK, explained that making a cake required an understanding of the fine balance of ingredients. Too much of one ingredient (or too little) could, in theory, “spoil the cake”.

The importance of the cure but at what cost?

Indeed, the meme “care for today, cure for tomorrow” does merit scrutiny. Take ‘the cure bit’ for a start. In the same way that medicine might provide a cure for a type of cancer, such as an aggressive haematological condition, it might provide a cure for a type of dementia. In other words, in reality, the ultimate “cure for dementia” is likely to arrive in an incremental, piecemeal, gradual fashion for different types of dementia. And the unexpected might happen – for example, immunomodulators might find a ‘new market’ disruptively in the “fight against dementia”.

As such, you don’t ‘cure a headache’ with radical neurosurgery consequent upon sophisticated neuroimaging. You are likely to treat the symptom with a paracetamol. And the same logic goes for asthma and bronchodilators.

In the history of drug development for dementia, the debris of “repeated and costly failures” is a formidable one. But then again it is argued that no omelette was ever made without cracking eggs. It is said, for example, that between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease.

In the phase before the theoretical obliteration of dementia in some future year, it is likely that care will also be required for tomorrow as well. This is because in someone who is being tried on an orphan drug for dementia a management strategy is likely to include also cognitive techniques, such as cognitive stimulation therapy, currently being examined for the NICE guidance on dementia to be published soon.

Nonetheless, any cures for dementia are to be welcomed not least because they offer hope. The worry, of course, is that there is a “zero sum gain”, in that if people are reaching for their pockets to fund research charities they are less inclined to fund social care for people living with dementia for today.

We have to talk about care

Even with talk of “precepts” from the Budget of last year, social care, not having been ringfenced since 2010, is still on its knees. Public health, which is supposed to deliver the risk mitigation strategy, for dementia has also been an unwise cost saving.

Social care is not essentially about bailing out the NHS in its ‘funding deficit’. It is as a profession concerned about enabling and protecting its client group. I feel few areas are as important as dementia for this.

Dementia, unlike cancer, has no specified “care pathways”. There are more than a hundred causes of dementia, depending on how you count them, and indeed every person with dementia is a unique individual. Integrated person-centred care pathways, and advance care planning especially in light of substantial comorbidities (involving of course carers), would do much to mitigate against the confusion and uncertainty which often accompanies the subsequent trek of a person with dementia through the maze of services.

The minimisation of the rôle of clinical specialist nurses, unlike cancer, is a deeply embarrassing one. The repercussions on the weaknesses in pursuant policy, including continuity of care in different care settings and delivery of palliative and end-of-life approaches, are glaringly obvious to clinicians currently working in dementia care today.

Prevention and seeking the diagnosis

The ‘healthy body, healthy mind’ campaign makes sense in a view that the prevalence of dementia in England  has been said to be falling. There are of course exceptions to every rule. We are all aware of people who’ve completed a healthy treadmill stress test for angina, without problem, only to fall dead in the car park.  Being educated, described as reducing your risk of dementia, did not stop Dame Iris Murdoch or Baroness Margaret Thatcher developing dementia. But progression also means preventing dementia progressing at a fast rate – in the future, maybe wearables and other technology might help in real time.

How a person or their closest ones seek a medical diagnosis for dementia was not straightforward, even before NHS England introduced its disastrous, and ultimately temporary, initiative to provide financial incentive for the diagnosis of dementia. A lot depends on the coping strategies of the people seeking diagnosis, as well as whether the benefit of a diagnosis is more beneficial than any ensuing stigma.

Many people report being “terrified” of then going to memory clinic, and a long wait is akin to ‘justice delayed is justice denied’. But an accurate diagnosis of dementia is important ultimately. General practitioners, already facing a bureaucratic and demand tsunami, may not have adequate resources or training necessarily to feel comfortable, although there is no reason why general practitioners cannot be also the ‘specialists’ making the diagnosis.

But likewise, people with unexplained symptoms, languishing without a diagnosis, is not on. People do deserve to know what medical diagnoses might apply to them. Physicians and other professionals would prefer people living with dementia not to be propelled into a crisis or move to residential setting involuntarily.

Furthermore, there is a school of thought that a correct diagnosis of dementia sums up the notion ‘knowledge is power’. Armed with the information, you can make reasonable adjustments just as for any physical disability, for example memory or visual aids, better signage around your accommodation. It gives you better bargaining power as an upholder of disability rights, as well as gives you specific opportunity to plan for the future, for example power of attorney or will, (on legal loss of capacity or ultimately death.)

Whilst there is a huge emphasis on diagnosis in current English dementia policy, there is consensus that the quality of how the actual diagnosis is closed could be improved in very many cases even now (see an excellent review here).

Conclusion

With so many vested interests involved, the cooking of this particular cake is bound to be complicated. But hopefully with time issues will become much clearer. This is ultimately for the benefit of persons with dementia and their closest ones.

[The author, Dr Shibley Rahman, of this blogpost (@dr_shibley) is an academic physician specialising in dementia. BBC Radio 4 will air a programme in the ‘File on 4′ series entitled “Has a drive to increase the diagnosis and find a cure been effective?’ at 20.00 on 23rd February 2016, presented by Deb Cohen (producer, Paul Grant). Details of this episode of File on 4 are on the BBC website here.]

The health checks for future risk of dementia themselves may not be in good health

Shibley Rahman 0 Comments

Earlier this year, the influential Alzheimer’s Disease International charity published its World Dementia Report 2014.

Dementia and Risk Reduction: An analysis of protective and modifiable factors critically examines the evidence for the existence of modifiable risk factors for dementia.

It focused on sets of potential modifiable risk factors in four key domains: developmental, psychological and psychosocial, lifestyle and cardiovascular conditions. The report makes recommendations to drive public health campaigns and disease prevention strategies.

Indeed, in that report the authors stated, “There is no evidence strong enough at this  time to claim that lifestyle changes will prevent  dementia on an individual basis.”

The report is littered all the way through it with qualifications on how, whilst a current focus on modifiable risk factors is justified by their potential to be targeted for prevention, “non-modifiable risk factors (eminently age, gender and genetic factors) are also very important.”

The full name of the Alzheimer’s Disease International, as its CEO Marc Wortmann (@marcwort) is keen to point out, is  “Alzheimer’s Disease and Associated Disorders”.

This is clearly relevant as there are about a hundred different types of dementia, of which the dementia of the Alzheimer type happens to be the most prevalent. The media – and certain members of the medical profession – regularly like to conflate all dementias with Alzheimer’s disease, a phenomenon known as “Alzheimerisation”.

But it is hoped that accurate communication of risk of the dementias may play an important rôle in prevention, and in combatting stigma and discrimination. The big unresolved question is, of course, is how this emphasis exactly will help nearly a million currently living in the UK with dementia.

It is not thought that the prevalence of dementia in England is static. It is thought that it is falling.

As argued in a paper in the Lancet(Neurology), from the Medical Research Council Cognitive Function and Ageing Collaboration at the  MRC Biostatistics Unit, Cambridge Institute of Public Health, Cambridge University, “This study provides compelling evidence of a reduction in the prevalence of dementia in the older population over two decades.” (1)

Indeed, the authors of that study indeed signpost what could be driving that reduction in their introduction.

“By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality, and increased early life education, which is associated with reduced risk of dementia.”

Prevention of dementia is likely to be big business.

In discussing recent data,  Geeert Jan Biessels from the Department of Neurology, Utrecht, Netherlands mooted how identification of ‘at risk’ individuals could take place (2):

“Apart from timing of interventions, a question is whether prevention programmes should be population wide or target specific high-risk subgroups, as is now common in the prevention of cardiovascular disease. To target individuals at increased risk of Alzheimer’s disease, these individuals would need to be identified at a very early stage, well before the disease process commences.”

The NHS Health Check was launched in 2009 to assess and treat patients aged 40 to 74 for their risk of developing heart problems, diabetes, high blood pressure and kidney disease.

heart

In July 2014, Prof Clare Gerada was reported as voicing serious concerns.

Gerada “backed the calls to end the routine checks, claiming they ‘devalued medicine’ and led to patients being needlessly worried as family doctors waste time on people who are not sick.”

‘You always find something that you can’t explain and then you do more tests,’ she said. ‘We’re constantly having to explain to patients that actually there’s nothing wrong.’

The Blackfriars Consensus Statement calls for new national focus to reduce risk of developing dementia.

Action to tackle smoking, drinking, sedentary behaviour and poor diet could reduce the risk of dementia in later life alongside other conditions such as heart disease, stroke and many cancers, according to the UK Health Forum and Public Health England in a joint consensus statement published on 20 May 2014.

The Blackfriars Consensus Statement argued that the scientific evidence on dementia risk reduction is evolving rapidly and is now sufficient to justify action to incorporate dementia risk reduction into health policies and to raise wider awareness about which factors can reduce the risk of developing dementia.

The Statement makes reference to a “precautionary principle”, which “requires that, even for those risk factors for which the evidence is less robust, we should recommend actions that could reasonably be presumed to reduce the risk of some types of dementia at least …”

This precautionary principle maximally allows for mission creep, of course, as rent seekers wish to establish new financial markets under the guise of prevention of medical disease.

According to one newspaper report today, “Middle-aged people will be screened by GPs for their risk of dementia and told how their “brain age” compares to their biological age, under new plans to “scare” people into adopting healthier lifestyles. It means a man of 40 could be told that he has the brain of a 60-year-old, and a significantly greater chance of diseases like Alzheimer’s, based on his weight, exercise habits, cholesterol levels and alcohol intake.”

The origins for this policy can be found in the computation of the ‘lifetime risk score’ for cardiovascular disease. Back in July 2013, there was a furore about the possibility of an army of patients being put on statin drugs to lower their risk from certain forms of cholesterol as a result of ‘JB3 guidance’. ‘Bad’ forms of cholesterol can cause heart attacks or stroke. The precise history of how the ‘Joint British Groups’ arrived at this is complicated, however.

Risk-calculator

But an influential article in the Heart journal from Joep Perk, Ian Graham, Guy De Backer from Sweden, Ireland and Belgium was pretty damning about this (3).

“Their ambition is to provide health workers, especially general practitioners, with answers to three key questions: Why should I start advising CVD risk reduction? When should I start? And what should I do?”

“However relevant these questions are, it should be noted that the proposed model has to our knowledge not been tested on a large scale. This remains the major shortcoming of all three sets of guidelines: in comparison with new drugs or technical equipment where extensive documentation is needed for approval, the methods for risk assessment or calculators remain remarkably poorly tested.”

“On the one hand wide application in clinical practice is advocated, while on the other hand little is yet known about feasibility, acceptance rate in a busy general practice, the understanding of the patient, or even the effect on individual behaviour. This is clearly an important challenge for future studies.”

So even if dementia is amenable to modifiable risk factors, how much of it exactly is amenable?

Sam Norton, Fiona E Matthews, Deborah E Barnes, Kristine Yaff and Carol Brayne in the Lancet Neurology earlier this year argued, on the basis of their data, “After accounting for non-independence between risk factors, around a third of Alzheimer’s diseases cases worldwide might be attributable to potentially modifiable risk factors. Alzheimer’s disease incidence might be reduced through improved access to education and use of effective methods targeted at reducing the prevalence of vascular risk factors (eg, physical inactivity, smoking, midlife hypertension, midlife obesity, and diabetes) and depression.” (4)

But even this estimate there might be inaccurate. To give them credit, the authors themselves conceded, “A strength of the single risk factor approach is that it highlights the potential for individual risk factors, but a major limitation is that the estimated combined population-attributable risk makes the untenable assumption of independence of the risk factors.”

I don’t blame Dr Charles Alessi for wanting to ‘make a difference’. Prevention is a core strand of dementia policy globally.

As Alessi himself writes, “I am excited by the opportunity we have to make a difference to people’s lives and I am determined that we will seize the moment and really capture the emerging evidence that dementia is not an inevitable part of ageing and in some cases can be prevented or its progression delayed. My role as lead for the prevention of dementia is to make this a reality for all of us.”

But the reputation of and trust in the medical profession are both vital.

It is essential that any policy of ‘risk calculators’ in England is rolled out by members of the medical profession with the utmost integrity and probity, especially since the plan is to pay GPs for every diagnosis of dementia made.

 

References 

(1) Matthews FE, Arthur A, Barnes LE, Bond J, Jagger C, Robinson L, Brayne C; Medical Research Council Cognitive Function and Ageing Collaboration. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet. 2013 Oct 26;382(9902):1405-12. doi: 10.1016/S0140-6736(13)61570-6. Epub 2013 Jul 17.

(2) Biessels GJ. Capitalising on modifiable risk factors for Alzheimer’s disease. Lancet Neurol. 2014 Aug;13(8):752-3. doi: 10.1016/S1474-4422(14)70154-1.

(3)  Perk J, Graham I, De Backer G. Prevention of cardiovascular disease: new guidelines, new tools, but challenges remain. Heart. 2014 May;100(9):675-7. doi: 10.1136/heartjnl-2014-305650. Epub 2014 Mar 25.

(4)Norton S, Matthews FE, Barnes DE, Yaffe K, Brayne C. Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data.Lancet Neurol. 2014 Aug;13(8):788-94. doi: 10.1016/S1474-4422(14)70136-X.

 

 

 

The references for chapter 1 of my book on prevention/risk factors in dementia

Shibley Rahman 0 Comments

These are the references to Chapter 1 “Introduction”, mainly an overview of English dementia policy, prevention and risk factors, for my new book, “Living better with dementia: championing change for the future” (to be published early 2014).

 

Websites

“Call to action: the use of antipsychotics for people with dementia” http://www.institute.nhs.uk/qipp/calls_to_action/Dementia_and_antipsychotic_drugs.html

 

A letter to the Prime Minister charting progress on the Prime Minister’s Dementia Challenge (dated 7th May 2014). https://s3-eu-west-1.amazonaws.com/media.dh.gov.uk/network/353/files/2014/05/10092-2902335-TSO-Dementia-Letter-to-PM-ACCESSIBLE.pdf

 

All Party Parliamentary Group (APPG) on dementia. (2012) Unlocking the diagnosis: the key to improving the lives of people with dementia http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1457 (dated June)

 

Dementia 2013: The hidden voice of lonelineness http://www.alzheimers.org.uk/dementia2013

 

Dementia Roadmap. http://dementiaroadmap.info

 

Department of Health (2012) Prime Minister’s Dementia Challenge: delivering major improvements in dementia care and research by 2015 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

 

Making a Difference in Dementia: Nursing Vision and Strategy https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/147956/Making_a_Difference_in_Dementia_Nursing_Vision_and_Strategy.pdf

 

Memory Services National Accreditation Programme (Royal College of Psychiatrists) http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/qualityandaccreditation/memoryservices/memoryservicesaccreditation.aspx

 

NHS Confederation website/NHS Voices blog. (2014) A people-centred response to the 2015 Challenge is vital for the future of health and care, says Jeremy Taylor, http://www.nhsconfed.org/blog/2014/06/a-people-centred-response-to-the-2015-challenge-is-vital-for-the-future-of-health-and-care

PM Challenge on dementia (Alzheimer’s Research UK) http://www.alzheimersresearchuk.org/news-detail/10688/PM-Challenge-on-Dementia-a-year-of-progress-and-new-promise-for-research/ (dated 15 May 2013)

 

Public Health England and UK Health Prevention First (2014). The Blackfriars Consensus on promoting brain health: reducing risks for dementia in the population http://nhfshare.heartforum.org.uk/RMAssets/Reports/Blackfriars%20consensus%20%20_V18.pdf (“Blackfriars Consensus Statement”)

 

Rahman, S. (2014) “It’s time we talked about ‘dementia friendly communities’” Living well with dementia blog, http://livingwelldementia.org/2014/03/25/its-time-we-talked-about-dementia-friendly-communities/ (25th March 2014).

 

Report on the prescribing of anti-psychotic drugs to people with dementia (author: Professor Banerjee) http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303 (November 2009)

 

WHO (2013) [ed. Wilkinson, R., Marmot, M.] Social determinants of health: the solid facts. http://www.euro.who.int/__data/assets/pdf_file/0005/98438/e81384.pdf

 

 

 

Other references

 

Ahlskog, J.E., Geda, Y.E., Graff-Radford, N.R., Petersen, R.C. (2011) Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging, Mayo Clin Proc, 86(9), pp. 876–84.

 

Albert, M.S., DeKosky, S.T., Dickson, D., Dubois, B., Feldman, H.H., Fox, N.C,., Gamst, A., Holtzman, D.M., Jagust, W.J., Petersen, R.C., Snyder, P.J., Carrillo, M.C., Thies, B., Phelps, C.H. (2011) The diagnosis of mild cognitive impairment due toAlzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease, Alzheimers Dement, 7, pp. 270–9.

 

Alzheimer’s Association Expert Advisory Workgroup on NAPA (2012) Workgroup on NAPA’s scientific agenda for a national initiative on Alzheimer’s disease, Alzheimer Dement, 8, pp. 357–361.

 

Bambra, C., Gibson, M., Sowden, A., Wright, K., Whitehead, M., Petticrew, M. (2010) Tackling the wider social determinants of health and health inequalities: evidence from systematic reviews, J Epidemiol Community Health, Apr, 64(4), pp. 284-91.

 

Barberger-Gateau, P., Raffaitin, C., Letenneur, L., Berr, C., Tzourio, C., Dartigues, J.F., Alpérovitch, A. (2007) Dietary patterns and risk of dementia: the Three-City cohort study. Neurology, Nov 13, 69(20), pp. 1921-30.

 

Bennett, D.A., Schneider, J.A., Tang, Y., Arnold, S.E., Wilson, R.S. (2006) The effect of social networks on the relation between Alzheimer’s disease pathology and level of cognitive function in old people: a longitudinal cohort study, Lancet Neurol, 5(5), pp. 406–12.

 

Beydoun, M.A., Beydoun, H.A., Wang, Y. (2008) Obesity and central obesity as risk factors for incident dementia and its subtypes: a systematic review and meta-analysis, Obes Rev, 9, pp. 204–218.

 

Biessels GJ. Capitalising on modifiable risk factors for Alzheimer’s disease. Lancet Neurol, Aug, 13(8), pp. 752-3.

 

Black, S.E., Patterson, C. Feightner, J. (2001) Preventing dementia, Canadian Journal of Neurology Science, 28 (Suppl 1), pp. S56–66.

 

Blackburn, D.J., Krishnan, K., Fox, L., Ballard, C., Burns, A., Ford, G.A., Mant, J., Passmore, P., Pocock, S., Reckless, J., Sprigg, N., Stewart, R., Wardlaw, J., Bath, P.M. (2013) Prevention of Decline in Cognition after Stroke Trial (PODCAST): a study protocol for a factorial randomised controlled trial of intensive versus guideline lowering of blood pressure and lipids, Trials, Nov 22, 14: 401.

 

Bond, J. (1992) The medicalization of dementia, Journal of Aging Studies, 6, 397–403.

 

Bowling, A. (2007) Aspirations for old age in the 21st century, what is successful aging? The International Journal of Aging and Human Development, 64, 263–297.

 

Boyle, P.A., Buchman, A.S., Wilson, R.S., Yu, L., Schneider, J.A., Bennett, D.A. (2012) Effect of purpose in life on the relation between Alzheimer disease pathologic changes on cognitive function in advanced age, Arch Gen Psychiatry, 69(5), pp. 499– 505.

 

Brodaty, H., Howarth, G., Mant, A., Kurle, S. (1994) General practice and dementia, A national survey of Australian GPs, Medical Journal of Australia, 160, 10–14.

 

Brooker, D., La Fontaine, J., Bray, J., Evans, S. (for the University of Worcester Association of Dementia Studies) (2013), Timely diagnosis of dementia: ALCOVE WP5 Task 1 and 2.

 

Brunet M. (2014) Targets for dementia diagnoses will lead to over-diagnosis, BMJ, 348:g2224.

 

Brunnström, H., Gustafson, L., Passant, U., Englund, E. (2009) Prevalence of dementia subtypes: a 30-year retrospective survey of neuropathological reports, Arch Gerontol Geriatr, Jul Aug, 49(1), pp. 146-9.

 

Buchman, A.S., Wilson, R.S., Bienias, J.L., Shah, R.C., Evans, D.A., Bennett, D.A. (2005) Change in body mass index and risk of incident Alzheimer disease, Neurology, 65, pp. 892–897.

 

Burns, A., Robert, P. (2009) The National Dementia strategy in England, BMJ, Mar 10, 338:b931.

 

Chang, M., Jonsson, P.V., Snaedal, J., Bjornsson, S., Saczynski, J.S., Aspelund, T., Eiriksdottir, G., Jonsdottir, M.K., Lopez, O.L., Harris, T.B., Gudnason, V., Launer, L.J. (2010) The effect of midlife physical activity on cognitive function among older adults: AGES—Reykjavik study, J Gerontol A Biol Sci Med Sci, 65(12), pp. 1369–74.

 

Cooper, C. (2013) G8 Dementia Summit: PM pledges to double funding for research by 2025, 11 December 2013, The Independent newspaper, http://www.independent.co.uk/life-style/health-and-families/health-news/g8-dementia-summit-pm-pledges-to-double-funding-for-research-by-2025-8996377.html

 

Crampton, J., Dean, J., Eley, R. (2012) Joseph Rowntree Foundation: Creating a dementia friendly York, http://www.jrf.org.uk/sites/files/jrf/dementia-communities-york-full.pdf.

 

Cunningham, E.L., Passmore, A.P. (2013) Drug development in dementia, Maturitas, 76(3), pp. 260-6.

 

Daviglus, M.L., Bell, C.C., Berrettini, W., Bowen, P.E., Connolly, E.S. Jr, Cox, N.J., Dunbar-Jacob, J.M., Granieri, E.C., Hunt, G., McGarry, K., Patel, D., Potosky, A.L., Sanders-Bush, E., Silberberg, D., Trevisan, M. (2010) National institutes of health state-of-the-science conference statement: preventing Alzheimer disease and cognitive decline, Annals of Internal Medicine, August 3, 153(3), pp. 176–81.

 

De Lepeliere, J., Wind, A., Iliffe, S., Moniz-Cook, E., Wilcock, J., Gonzalez, V., Derksen, E., Gianelli, M., Vernooij-Dassen, M. the Interdem Group. (2008). The primary care diagnosis of dementia in Europe: An analysis using multi-disciplinary, multi-national expert groups, Aging & Mental Health, 12(5), 568–576.

 

Desmond, D.W., Tatemichi, T.K., Paik, M., Stern, Y. (1993) Risk factors for cerebrovascular disease as correlates of cognitive function in a stroke free cohort, Archives of Neurology, 50, pp. 162–166.

 

Devi, G., Ottman, R., Tang, M., Marder, K., Stern, Y., Tycko, B., Mayeux, R. (1999) Influence of APOE genotype on familial aggregation of AD in an urban population, Neurology, 53: 789.

 

Devore, E.E., Grodstein, F., van Rooij, F.J., Hofman, A., Stampfer, M.J., Witteman, J.C., Breteler M.M. (2010) Dietary antioxidants and long-term risk of dementia, Arch Neurol, Jul, 67(7), pp. 819-25.

 

Downs, M., Turner, S., Iliffe, S., Bryans, M., Wilcock, J., Keady, J. (2003) Improving the response of primary care practitioners to people with dementia and their families: A randomised controlled trial of educational interventions. Final Report to the UK Alzheimer’s Society, Bradford: UK Alzheimer’s Society.

 

EClipSE Collaborative Members, Brayne, C., Ince, P.G., Keage, H.A., McKeith, I.G., Matthews, F.E., Polvikoski, T., Sulkava, R. (2010) Education, the brain and dementia: neuroprotection or compensation? Brain, Aug, 133(Pt 8), pp. 2210-6.

 

Gao, S., Hendrie, H. C., Hall, K. S, Hui, S. (1998) The relationships between age, sex, and the incidence of dementia and Alzheimer disease: a meta-analysis, Archives of General Psychiatry, 55, 809–815.

 

Gauthier, S., Leuzy, A., Racine, E., Rosa-Neto, P. (2013) Diagnosis and management of Alzheimer’s disease: past, present and future ethical issues, Prog Neurobiol, Nov. 110:102-13.

 

Gustafson, D.R., Backman, K., Waern, M., Ostling, S., Guo, X., Zandi, P., Mielke, M.M., Bengtsson, C., Skoog, I. (2009) Adiposity indicators and dementia over 32 years in Sweden. Neurology, 73, pp. 1559–1566.

 

Haase, H., Rink, L. (2009) Functional significance of zinc-related signaling pathways in immune cells, Annu Rev Nutr, 29, pp. 133–152.

 

Håkansson, K., Rovio, S., Helkala, E.L., Vilska, A.R., Winblad, B., Soininen, H., Nissinen, A., Mohammed, A.H., Kivipelto, M., .Soininen H., Nissinen, A., Mohammed, A.H., Kivipelto, M. Association between mid-life marital status and cognitive function in later life: population based cohort study, BMJ, 339:b2462.

 

Hansen, E.C., Hughes, C., Routley, G., Robinson, A.L. (2008) General practitioners’ experiences and understandings of diagnosing dementia: factors impacting on early diagnosis, Soc Sci Med, Dec, 67(11), pp. 1776-83.

 

Harvey, R.J., Rossor, M.N., Skelton-Robinson, M. (1998) Young onset dementia: epidemiology, clinical symptoms, family burden, support and outcome, London: Dementia Research Group.

 

Hofman, A., Ott, A., Breteler, M.M., Bots, M.L., Slooter, A.J., van Harskamp, F, van Duijn, C.N., Van Broeckhoven, C., Grobbee, D.E. (1997) Atherosclerosis, apolipoprotein E, and prevalence of dementia and Alzheimer’s disease in the Rotterdam Study, Lancet, 349, pp. 151–154

 

Holland, W. (2012) Competition or collaboration? A comparison of health services in the UK, Clinical Medicine, 10(5), pp. 431–3

 

Imtiaz, B., Tolppanen, A.M., Kivipelto, M., Soininen. H. (2014) Future directions in Alzheimer’s disease from risk factors to prevention, Biochem Pharmacol, Apr 15, 88(4), pp. 661-70.

 

Innes, A., Manthorpe, J. (2013) Developing theoretical understandings of dementia and their application to dementia care policy in the UK, Dementia (London), Nov, 12(6), pp. 682-96.

 

Ionicioiu, I., David, D., Szamosközi, S. (2014) A quantitative meta-analysis of the effectiveness of psychosocial interventions in dementia, Procedia – Social and Behavioral Sciences, 27, pp. 591 – 594.

 

Jenkins, C.R., Thien, F.C.K., Wheatley, J.R., Reddel, H.K. (2005) Traditional and patient-centred outcomes with three classes of asthma medication, European Respiratory Journal, 26(1), pp. 36-44.

 

Jiang, T., Yu, J.T., Tian, Y., Tan, L. (2013) Epidemiology and etiology of Alzheimer’s disease: from genetic to non-genetic factors, Curr Alzheimer Res, Oct, 10(8), pp. 852-67.

 

Johansson, L., Guo, X., Waern, M., Ostling, S., Gustafson, D., Bengtsson, C., Skoog, I. (2010) Midlife psychological stress and risk of dementia: a 35-year longitudinal population study. Brain, Aug, 133(Pt 8), pp. 2217-24.

 

Jorm, A.F., Jolley, D. (1998) The incidence of dementia: a meta-analysis, Neurology, 51, 728–33.

 

Kehne, J.H. (2007) The CRF1 receptor, a novel target for the treatment of depression, anxiety, and stress-related disorders, CNS Neurol Disord Drug Targets, 6, pp. 163–182.

 

Khachaturian, A.S., Meranus, D.H., Kukull, W.A., Khachaturian, Z.S. (2013) Big data, aging, and dementia: pathways for international harmonization on data sharing, Alzheimers Dement, 9 (5 Suppl), pp. S61-2.

 

Khachaturian, Z.S., Petersen, R.C., Snyder, P.J., Khachaturian, A.S., Aisen, P., de Leon, M., Greenberg, B.D., Kukull, W., Maruff, P., Sperling, R.A., Stern, Y., Touchon, J., Vellas, B., Andrieu, S., Weiner, M.W., Carrillo, M.C., Bain, LJ. (2011) Developing a global strategy to prevent Alzheimer’s disease: Leon Thal Symposium 2010, Alzheimers Dement, Mar, 7(2), pp. 127-32.

 

Kim, J.W., Lee, D.Y., Lee, B.C., Jung, M.H., Kim, H., Choi, Y.S., Choi, I.G. (2012) Alcohol and cognition in the elderly: a review, Psychiatry Investig, Mar, 9(1), pp. 8-16.

 

Kivipelto, M., Ngandu, T., Fratiglioni, L., Viitanen, M., Kareholt, I., Winblad, B., Helkala, E.L., Tuomilehto, J., Soininen, H., Nissinen, A. (2006) Obesity and vascular risk factors at midlife and the risk of dementia and Alzheimer disease, Arch Neurol, 62, pp. 1556–1560.

Kmietowicz, Z. (2012) Cameron launches challenge to end “national crisis” of poor dementia care, BMJ, 344, e2347.

 

Kmietowicz, Z. (2014) Recorded diagnosis of dementia in England increases by 62% since 2006, BMJ, 349, g4911.

 

Koch, T., Iliffe, S. (2011) Implementing the National Dementia Strategy in England: Evaluating innovative practices using a case study methodology, Dementia, 10(4) 487–498.

 

Kopelman, P.G., (2000) Obesity as a medical problem, Nature, 404, pp. 635–643.

 

Lautenschlager, N.T., Cupples, L.A., Rao, V.S., Auerbach, S.A., Becker, R., Burke, J., Chui, H., Duara, R., Foley, E.J., Glatt, S.L., Green, R.C., Jones, R., Karlinsky, H., Kukull, W.A., Kurz, A., Larson, E.B., Martelli, K., Sadovnick, A.D., Volicer, L., Waring, S.C., Growdon, J.H., Farrer, L.A. (1996) Risk of dementia among relatives of Alzheimer’s disease patients in the MIRAGE study: What is in store for the oldest old? Neurology, 46, pp. 641–50.

 

Leonard BE. (2006) HPA and immune axes in stress: involvement of the serotonergic system. Neuroimmunomodulation, 13, pp. 268–76.

 

Lieb, W., Beiser, A.S., Vasan, R.S., Tan, Z.S., Au, R., Harris, T.B., Roubenoff, R., Auerbach, S., De- Carli, C., Wolf, P.A., Seshadri, S. (2009) Association of plasma leptin levels with incident Alzheimer disease and MRI measures of brain aging, JAMA, 302, pp. 2565–2572.

 

Ligthart, S.A., Moll van Charante, E.P., van Gool, W.A., Richard, E. (2010) Treatment of cardio-vascular risk factors to prevent cognitive decline and dementia: a systematic revie, Vascular Health & Risk Management, (6), pp. 775–85.

 

Lincoln, P., Fenton, K., Alessi, C., Prince, M., Brayne, C., Wortmann, M., Patel, K., Deanfield, J., Mwatsama, M. (2014) The Blackfriars Consensus on brain health and dementia, Lancet, May 24, 383(9931), pp. 1805-6.

 

Lindsay, J., Hebert, R.Rockwood, K. (1997) The Canadian Study of Health and Aging – Risk Factors for Vascular Dementia, Stroke, 28, 526–530.

 

Lupton, D. (1999) Risk. London: Routledge.

 

Lyman, K. A. (1989) Bringing the social back in: a critique of the bio-medicalisation of dementia, Gerontologist, 29, pp. 597–604.

 

Masi, C.M., Chen, H.Y., Hawkley, L.C., Cacioppo, J.T. (2011) A meta-analysis of interventions to reduce loneliness, Pers Soc Psychol Rev, Aug, pp. 15(3):219-66.

 

McCullagh, C.D., Craig, D., Mollroy, S.P., Passmore, A.P. (2001) Risk factors for dementia, Advances in Psychiatric Treatment, 7, pp. 24-31.

 

McKhann, G.M, Knopman, D.S., Chertkow, H., Hyman, B.T., Jack, C.R. Jr, Kawas, C.H., Klunk, W.E., Koroshetz, W.J., Manly, J.J., Mayeux, R., Mohs, R.C., Morris, J.C., Rossor, M.N., Scheltens, P., Carrillo, M.C., Thies, B., Weintraub, S., Phelps, C.H. (2011) The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease, Alzheimers Dement, 7, pp. 263–9.

 

Milne, A. (2010) Dementia screening and early diagnosis: The case for and against, Health, Risk & Society, 12(1), pp. 65–76.

 

Mizutani, K., Nishimura, K., Ichihara, A., Ishigooka, J. (2014) Dissociative disorder due to Graves’ hyperthyroidism: a case report, Gen Hosp Psychiatry, Mar 19. pii: S0163 8343(14)00073-5.

 

Monastero, R., Mangialasche, F., Camarda, C., Ercolani, S., Camarda, R. (2009) A systematic review of neuropsychiatric symptoms in mild cognitive impairment, J Alzheimers Dis, 18(1), pp. 11–30.

 

Moroney, J.T., Tang, M.X., Berglund, L., Small, S., Merchant, C., Bell, K., Stern, Y., Mayeux, R. (1999) Low density lipoprotein cholesterol and the risk of dementia with stroke, Journal of the American Medical Association, 282, pp. 254–260.

 

Morris, J.C. (2005) Early-stage and preclinical Alzheimer disease, Alzheimer Dis Assoc Disord, 19, pp. 163–5.

 

Morris, M.C., Evans, D.A., Bienias, J.L., Tangney, C.C., Bennett, D.A, Aggarwal, N., Schneider, J., Wilson, R.S. (2003) Dietary fats and the risk of incident Alzheimer disease, Arch Neurol, 60(2), pp. 194-200. [Erratum in: Arch Neurol. 2003 Aug;60(8):1072.]

 

National Audit Office (2007) Improving services and support for people with dementia, London: The Stationary Office.

 

Ngandu, T., Helkala, E.L., Soininen, H., Winblad, B., Tuomilehto, J., Nissinen, A., Kivipelto, M. (2007) Alcohol drinking and cognitive functions: findings from the Cardiovascular Risk Factors Aging and Dementia (CAIDE) Study, Dement Geriatr Cogn Disord, 23(3), pp. 140-9.

 

Ngandu, T., von Strauss, E., Helkala, E.L., Winblad, B., Nissinen, A., Tuomilehto, J., Soininen, H., Kivipelto, M. (2007) Education and dementia: what lies behind the association? Neurology, Oct 2, 69(14), pp. 1442-50.

 

Norton, S., Matthews, F.E., Barnes, D.E., Yaffe, K., Brayne, C. (2014) Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data, Lancet Neurol, Aug, 13(8), pp. 788-94.

 

Panza, F., Frisardi, V., Seripa, D., Logroscino, G., Santamato, A., Imbimbo, B.P., Scafato, E., Pilotto, A., Solfrizzi, V. (2012) Alcohol consumption in mild cognitive impairment and dementia: harmful or neuroprotective? Int J Geriatr Psychiatry, Dec, 27(12):1218-38.

 

Peters, R. (2012) Blood pressure, smoking and alcohol use, association with vascular dementia. Exp Gerontol, Nov, 47(11), pp. 865-72.

 

Piazza-Gardner, A.K., Gaffud, T.J., Barry, A.E. (2013) The impact of alcohol on Alzheimer’s disease: a systematic review, Aging Ment Health, 17(2), pp. 133–46.

 

Prasad, A.S. (2009) Impact of the discovery of human zinc deficiency on health, J Am Coll Nutr, 28, pp. 257–265.

 

Prasad, A.S. (2003) Zinc deficiency, BMJ, 326, pp. 409–410.

 

Ratnavalli E, Brayne C, Dawson K, et al. (2002) The prevalence of frontotemporal dementia. Neurology, 58:1615–21.

 

Redman, R.W., Lynn, M.R. (2004) Advancing patient-centred care through knowledge development, Canadian Journal of Nursing Research, 36(3), pp. 116-129.

 

Rissman, R.A., Staup, M.A., Lee, A.R., Justice, N.J., Rice, K.C., Vale, W., Sawchenko, P.E. Corticotropin releasing factor receptor-dependent effects of repeated stress on tau phosphorylation, solubility, and aggregation, Proc Natl Acad Sci USA, Apr 17, pp. 109(16):6277-82.

 

Ritchie, C.W., Ritchie, K. (2012) The PREVENT study: a prospective cohort study to identify mid-life biomarkers of late-onset Alzheimer’s disease, BMJ Open, Nov 19, pp. 2(6).

 

Rusanen, M., Rovio, S., Ngandu, T., Nissinen, A., Tuomilehto, J., Soininen, H., Kivipelto, M. (2010) Midlife smoking, apolipoprotein E and risk of dementia and Alzheimer’s disease: a population-based cardiovascular risk factors, aging and dementia study. Dement Geriatr Cogn Disord, 30(3), pp. 277-84.

 

Saleem, A., Sophia, R. (2014) Voltage-gated potassium channel antibody-associated limbic encephalitis, Age Ageing, Jul, 43(4), pp. 583-5.

 

Sapolsky, R.M. (1996) Why stress is bad for your brain, Science, 273, pp. 749–50.

 

Scarmeas, N., Stern, Y., Tang, M.X., Mayeux, R., Luchsinger, J.A. (2006) Mediterranean diet and risk for Alzheimer’s disease, Ann Neurol, Jun, 59(6), pp. 912-21.

 

Schliebs, R., Arendt, T. (2011) The cholinergic system in aging and neuronal degeneration, Behav Brain Res, Aug 10, 221(2), pp. 555-63.

 

Skoog, I., Kalaria, R.N., Breteler, M.M. (1999) Vascular factors and Alzheimer disease, Alzheimer Dis Assoc Disord, 13(suppl 3), pp. S106–S114

 

ofi, F., Valecchi, D., Bacci D., Abbate, R., Gensini, G.F., Casini, A., Macchi, C. (2011) Physical activity and risk of cognitive decline: a meta-analysis of prospective studies, J Intern Med, 269(1), pp. 107–17.

 

Sperling, R.A., Rentz, D.M., Johnson, K.A., Karlawish, J., Donohue, M., Salmon, D.P., Aisen, P. (2014) The A4 study: stopping AD before symptoms begin? Sci Transl Med, Mar 19, 6(228), pp. 228fs13.

 

Stern, Y., Gurland, B., Tatemichi, T.K., Tang, M.X., Wilder, D., Mayeux, R. (1994) Influence of education and occupation on the incidence of Alzheimer’s disease, JAMA, 271(13), pp. 1004–10.

 

Szewczyk, B. (2013) Zinc homeostasis and neurodegenerative disorders. Front Aging Neurosci, Jul 19, 5:33.

 

Tischler V, D’Silva K, Cheetham A, Goring M, Calton T. Involving patients in research: the challenge of patient-centredness, Int J Soc Psychiatry, 2010 Nov, 56(6), pp. 623-33

 

Tyas, S.L., White, L.R., Petrovitch, H., Webster Ross, G., Foley, D.J., Heimovitz, H.K., Launer, L.J. (2003) Mid-life smoking and late-life dementia: the Honolulu-Asia aging study, Neurobiol Aging, 24(4), pp. 589–96.

 

van der Linde, R.M., Stephan, B.C., Matthews, F.E., Brayne, C., Savva, G.M. (2013) Medical Research Council Cognitive Function and Ageing Study. The presence of behavioural and psychological symptoms and progression to dementia in the cognitively impaired older population, Int J Geriatr Psychiatry, Jul;28(7):700-9.

 

van Duijn, C.M., Hendriks, L., Cruts, M., Hardy, J.A., Hofman, A. (1991) Amyloid precursor protein gene mutation in early-onset Alzheimer’s disease, Lancet, 337(8747): 978.

 

Vellas, B., Gillette-Guyonnet, S., Andrieu, S. (2008) Memory health clinics-a first step to prevention, Alzheimers Dement, Jan, 4(1 Suppl 1):S144-9.

 

van El, C.G., Cornel, M.C., Borry, P., Hastings, R.J., Fellmann, F., Hodgson, S.V., Howard, H.C., Cambon-Thomsen, A., Knoppers, B.M., Meijers-Heijboer, H., Scheffer, H., Tranebjaerg, L., Dondorp, W., de Wert, GM, ESHG Public and Professional Policy Committee. (2013) Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics, Eur J Hum Genet, Jun;21(6):580-4.

 

Verity, C.M., Nicoll, A., Will, R.G., Devereux, G., Stellitano, L. (2000) Variant Creutzfeldt-Jakob disease in UK children: a national surveillance study, Lancet, Oct 7, 356(9237), pp. 1224-7.

 

Victor, M., Adams, R.D., Collins, G.H. (1971) The Wernicke–Korsakoff syndrome. F.A. Davis.

 

Vileland, T. (2002) Managing chronic disease: evidence-based medicine or patient-centred medicine? Health Care Analysis, 10(3), pp. 289-98.

 

Wang, H.X., Gustafson, D.R., Kivipelto, M., Pedersen, N.L., Skoog, I., Windblad, B., Fratiglioni, L. (2012) Education halves the risk of dementia due to apolipoprotein ε4 allele: a collaborative study from the Swedish brain power initiative, Neurobiol Aging, 33(5). 1007.e1-7.

Warren, M.W., Hynan, L.S., Weiner, M.F. (2012) Lipids and adipokines as risk factors for Alzheimer’s disease, J Alzheimers Dis, 29, pp. 151–157.

 

WHO (Revised February 2012) Variant Creutzfeldt-Jakob disease: factsheet no 180, available at http://www.who.int/mediacentre/factsheets/fs180/en/ [accessed 12 June 2014].

 

Wilson, R.S., Scherr, P.A., Schneider, J.A., Tang, Y., Bennett, D.A. (2007) Relation of cognitive activity to risk of developing Alzheimer disease, Neurology, 69(20), pp. 1911–20.

 

Wise J. (2014) £90m package to improve dementia care is announced in England, BMJ, 348, g1879.

 

Zecca, L., Youdim, M.B., Riederer, P., Connor, J.R., Crichton, R.R. (2004) Iron, brain ageing and neurodegenerative disorders, Nat Rev Neurosci, 5, pp. 863–873.

 

 

 

Source of the graphic in the top left corner of this page is here.

‘Reasons to be cheerful’ part 4. Prof Sube Banerjee’s inaugural lecture in Brighton on living well with dementia.

Shibley Rahman 2 Comments

For me the talk was like a badly needed holiday. I joked with Kay there, a colleague of Lisa, that it felt like a (happy) wedding reception.

Unknown to me, the title of Prof Banerjee’s talk is an allusion to this famous track from 1979 (when I was five). It’s “Reasons to be cheerful (part 3)” by Ian Drury and the Blockheads.

The Inaugural Lecture – Professor Sube Banerjee (“Professor of Dementia”), ‘Dementia: Reasons to be cheerful’ was held on 26 February, 2014, 6:30 pm – 8:30 pm, at Chowen Lecture Theatre, Brighton and Sussex Medical School, Sussex Campus. BN1 9PX. Details are here on the BSMS website.

I found Prof Banerjee to be a very engaging, ‘natural’ speaker.

I arrived with hours to spare, like how the late Baroness Thatcher was alleged to have done in turning up for funerals.

Apprehensive

Brighton are very lucky to have him.

But his lecture was stellar – very humble, yet given with huge gravitas. Banerjee is one of the best lecturers of any academic rank in dementia I have ever seen in person.

Opening slide

Banerjee started off with a suitable ‘icebreaker’ joke – but the audience wasn’t at all nervous, as they all immediately warmed to him very much.

SUBE2 GENERAL

He is ‘quite a catch’. He is able to explain the complicated issues about English dementia policy in a way that is both accurate and engaging. Also, I have every confidence in his ability to attract further research funding for his various teaching and clinical initiatives in dementia for the future.

Most of all, I was particularly pleased as the narrative which he gave of English dementia policy, with regards to wellbeing, was not only accurate, but also achievable yet ambitious.

1979 was of course a big year.

SUBE1 1979

Prof Banerjee felt there were in fact many ‘reasons to be cheerful’, since Ian Drury’s remarkable track of 1979 (above), apparently issued on 20 July of that year.

Banerjee argued that the 1970s which had only given fruit to 209 papers, but things had improved ever since then.

It was the year of course Margaret Thatcher came to power on behalf of the Conservative Party.

1979 DEMENTIA

In contrast, there have already been thousands of papers in the 2000s so far.

Banerjee also argued that “what we know is more likely to be true” which is possibly also true. However, I immediately reminisced of the famous paper in Science in 1982, “The cholinergic hypothesis of geriatric memory dysfunction”. This paper, many feel, lay the groundwork for the development of cholinesterase inhibitors such as donepezil (“Aricept”, fewer than twenty years later.

It is definitely true that ‘we are better at delineating the different forms of dementia’.

I prefer to talk of the value of people with dementia, but Banerjee presented the usual patter about the economic costs of dementia. Such stats almost invariably make it onto formal grant applications to do with dementia, to set the scene of this particular societal challenge.

SUBE3 COSTS

I am of course a strong believer in this as my own PhD was in a new way to diagnose the behavioural variant of frontotemporal dementia. In this dementia, affecting mainly people in their 50s at onset, the behavioural and personality change noticed by friends and carers is quite marked. This is in contrast to a relative lack of memory of problems.

Not all dementias present with memory problems, and not all memory problems have a dementia as a root cause. I do happen to believe that this is still a major faultline in English dementia policy, which has repercussions of course for campaigns about ‘dementia awareness’.

A major drive in the national campaigns for England is targeted at destigmating persons with dementia, so that they are not subject to discrimination or prejudice.

The dementia friendship programmes have been particularly successful, and Banerjee correctly explained the global nature of the history of this initiative drive (from its “befriending” routes in Japan). Banerjee also gave an excellent example to do with language of dementia friendship in the elderly, which I had completely missed.

SUBE7 Japan friendships

Raising awareness of memory problems in dementia is though phenomenally important, as Alzheimer’s disease is currently thought to be the most prevalent form of dementia worldwide.

The prevalence of dementia may even have been falling in England in the last few decades to the success prevention of cardiovascular disease in primary care.

The interesting epidemiological question is whether this should have happened anyway. Anyway, it is certainly good news for the vascular dementias potentially.

That dementia is more than simply a global public health matter is self-evident.

I’m extremely happy Banerjee made reference to a document WHO/Alzheimers Disease International have given me permission to quote in my own book.

SUBE9 ADI

Banerjee presented a slide on the phenomenally successful public awareness campaign about memory.

SUBE12 Alz Soc campaign

Nonetheless, Banerjee did speak later passionately about the development of the Croydon memory services model for improving quality of life for persons with mild to moderate dementia.

In developing his narrative about ‘living well with dementia’, Banerjee acknowledged at the outset that the person is what matters at dementia. He specifically said it’s about what a person can do rather than what he cannot do, which is in keeping to my entire philosophy about living well with dementia.

And how do we know if what we’re doing is of any help? Banerjee has been instrumental in producing, with his research teams, acceptable and validated methods for measuring quality of life in dementia.

The DEMQOL work has been extremely helpful here, and I’m happy Banerjee made a point of signposting this interesting area of ongoing practice-oriented research work.

Banerjee of course did refer to “the usual suspects” – i.e. things you would have expected him to have spoken about, such as the National Dementia Strategy (2009) which he was instrumental in designing at the time: this strategy was called “Living well with dementia”.

SUBE4 National dementia strategy

“I’m showing you this slide BECAUSE I want YOU to realise it IS complicated”, mused Banerjee at the objectives of the current English dementia policy.

SUBE8 Dementia national strategy objectives

I asked Banerjee what he felt the appropriate ‘ingredients’ of the new strategy for dementia might be – how he would reconcile the balance between ‘cure’ and ‘care’ – “and of course, the answer is both”, he said to me wryly.

Banerjee acknowledged, which I was massively pleased about, the current ‘barriers to care’ in this jurisdiction (including the known issues about the “timely diagnosis of dementia”.

Clearly the provision at the acute end of dementia care is going to have to come under greater scrutiny.

SUBE11 Barriers to care

I increasingly have felt distinctly underwhelmed by the “medical model”, and in particular the repercussions of this medicalisation of dementia as to how grassroots supporters attempt to raise monies for dementia.

That certain antidepressants can have a lack of effect in dementia – Banerjee’s work – worries me.

That antipsychotics can have a dangerous and destructive effect for persons with dementia – also Banerjee’s work – also clearly worries me.

I am of course very proud that Prof Alistair Burns is currently reading my book focused on the interaction between the person and the environment in dementia.

Alistair Burns Shibley Rahman email

And of course I’m ecstatic that Lisa Rodrigues and Prof Sube Banerjee signed my book : a real honour for me.

book photo

I signed Lisa’s book which was most likely not as exciting for her! X

There was a great atmosphere afterwards: the little chocolate brownies were outstanding!

Being an antisocial bastard, I didn’t mingle.

Mingle

BUT I had a brilliant chat with Lucy Jane Marsters (@lucyjmarsters) who gave me a little bag of ‘Dementia is my business’ badges, very thoughtfully.

SUBE 13 Badges

We both spoke about Charmaine Hardy. Charmaine was missed (and was at home, devoted to G.)

I’ve always felt that Charmaine is a top member of our community.

This apparently is a ‘Delphinium’.

Delphinium

A reason not to be cheerful was leaving Brighton, for many personal reasons for me.

Upset to be leaving

Not even the Shard was a ‘reason to be cheerful’, particularly.

The Shard

But when I came back, I found out that ‘Living well with dementia’ is to be a core part of the new English dementia policy.

I have, of course, just published a whole book about it.

The photograph of the poppy was of course taken by Charmaine Hardy: I have such great feedback on that one poppy in particular!

Book cover

And what does the future hold?

Over to Prof Banerjee…

Is prevention of dementia merely a pipe dream?

Shibley Rahman 0 Comments

Amazon_Octocopter_484429b

Predicting the future on the basis of your past is of course the ultimate goal of the shopping industry.

It also seems to be the goal of healthcare, as consumer behaviour and patient care appear to converge in ever-marketised healthcare.

When you ‘sign up’ for a health subscription somewhere, one day, it’s possible you’ll be offered “packages” most suitable for you. Consider them like targetted adverts on Facebook. Of course, with disease registries compiled on your behalf by public health through data sharing, tomorrow’s world is getting ever closer.

So how much of dementia is in your ‘control’, if you haven’t yet developed it?

Is prevention of dementia a pipe dream?  There are, after all, many factors which we’re born with which can have a huge influence. These are known as generic factors.

Amazon, the world’s largest online retailer, is already testing unmanned drones to deliver goods to customers. The drones, called Octocopters, could deliver packages weighing up to 2.3kg to customers within 30 minutes of them placing the order. Amazon has filed a patent that will allow it to ship a package to you before you even know you’ve bought it.

To give you another example, I know someone who was being given sponsored ads for hotels in Bilboa after Facebook had picked up her location by GPS.

Now back to the past.

Back to Black in fact.

The Black report was a 1980 document published by the Department of Health and Social Security (now the Department of Health) in the United Kingdom, which was the report of the expert committee into health inequality chaired by Sir Douglas Black. It was demonstrated that although overall health had improved since the introduction of the welfare state, there were widespread health inequalities.

Full Text of the Black Report, supplied by the Socialist Health Association website.

Surprisingly enough, it’s not all doom and gloom.

Modulating the environment might have some sort of impact on prevention of dementia, even if we don’t yet know how big or small this impact is.

The study of exceptionally long-living individuals can inform us about the determinants of successful aging. There have been few population-based studies of centenarians and near-centenarians internationally. But a recent study involving individuals 95 years and older were recruited from seven electoral districts in Sydney provided evidence that dementia is not “inevitable” at this age and independent living is common.

Low socioeconomic status in early life is well known to affect growth and development, including that of the brain; and it has also been shown to affect the risks of other chronic diseases.

Over a decade ago, a real attempt was made to relate early socioeconomic status to later dementia. We found results consistent with the hypothesis that a healthier socioeconomic environment in childhood and adolescence leads to more “brain reserve” (the brain’s ability to cope with increasing age- and disease-related changes while still functioning) and less risk of late-life dementia, including Alzheimer’s disease, later on.

Results from two major cohort studies, led by the University of Cambridge and supported by the Medical Research Council, have reveal that the number of people with dementia in the UK is substantially lower than expected because overall prevalence in the 65 and over age group has dropped.

Three geographical areas in Newcastle, Nottingham and Cambridgeshire from the initial MRC Cognitive Function and Ageing Study (CFAS) examined levels of dementia in the population. The latest figures from the follow up study, CFAS II, show that there is variation in the proportion of people with dementia across differing areas of deprivation,  suggesting that health inequalities during life may influence a person’s likelihood of developing dementia.

The prevalence of dementia in the general population might be subject to change.

Factors that might increase prevalence include: rising prevalence of risk factors, such as physical inactivity, obesity, and diabetes; increasing numbers of individuals living beyond 80 years with a shift in distribution of age at death; persistent inequalities in health across the lifecourse; and increased survival after stroke and with heart disease.

By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality, and increased early life education, which is associated with reduced risk of dementia.

The study was led by Professor Carol Brayne from the Cambridge Institute of Public Health at Cambridge University. She opined that whether or not these gains for the current older population will be borne out in later generations might depend on whether further improvements in primary prevention and effective health care for conditions which increase dementia risk can be achieved, including addressing inequalities.

In fact, it has been recently appreciated that cardio-metabolic risk factors have been associated with poor physical and mental health.

An association of low education with an increased risk of dementia including Alzheimer’s Disease, the most common cause of dementia globally, has been reported in numerous cross-sectional and longitudinal studies. Education and socioeconomic status are highly correlated, it turns out.

The reserve hypothesis has been proposed to interpret this association such that education could enhance neural and cognitive reserve that may provide compensatory mechanisms to cope with degenerative pathological changes in the brain, and therefore delay onset of the dementia syndrome.

The complexity of people’s occupations also positively influences cognitive vitality, and this relationship becomes increasingly marked with age.

Further evidence from studies suggests that a poor social network or social disengagement is associated with cognitive decline and dementia.

The risk for dementia including Alzheimer’s Disease was also increased in older people with increasing social isolation and less frequent and unsatisfactory contacts with relatives and friends. Rich social networks and high social engagement imply better social support, leading to better access to resources and material goods.

Previous studies have also shown that social determinants not directly involved in the disease process may be implicated in the timing of dementia diagnosis. Possibly the living situation is related to the severity of dementia at diagnosis. If so, primary care providers should have a low threshold for case-finding in older adults who live with family or friends?

Regular physical exercise was reported to be associated with a delay in onset of dementia including Alzheimer’s Disease among cognitively healthy elderly.

In the Kungsholmen Project, the component of physical activity presenting in various leisure activities, rather than sports and any specific physical exercise, was related to a decreased dementia risk. It is generally thought that physical activity is important not only in promoting general and vascular health, but also in promoting some form of brain rewiring.

Various types of mentally demanding activities have been examined in relation to dementia in general, including knitting, gardening, dancing, playing board games and musical instruments, reading, social and cultural activities, and watching specific television programs, which often showed a protective effect.

So it really might not all the doom and gloom, and certainly we are much further forward than we were 33 years ago with the publication of “The Black Report”.

For the record, this Report doesn’t even mention dementia.

Prof Alistair Burns in New Scientist writing “Dementia: A silver lining but no room for complacency” summarised elegantly the situation as follows, on 10 January 2014:

“While it is true that there is no cure, the findings suggest that prevention is at least possible. This must surely explain any reduction in prevalence, so what might be behind it? Improved cardiovascular health, better diet and higher educational achievement are all plausible explanations. This opens up the possibility that people who are able to take control of their lives can reduce their individual risk of dementia.”

So, to answer the actual question.

There is a realistic possibility that we might be able to identify certain people who are most at risk of developing a dementia, and modifying the known risk factors constitutes ‘low hanging fruit’ for policy. If you park aside the corporate capture potential of making new markets through development of health promotion packages, this is indeed an example, shock horror, of where data sharing across the whole population might be helpful and direct the health of the nation in future.