Dementia is not a natural part of ageing

“Dementia Friends” is an initiative run by Public Health England, and delivered by the Alzheimer’s Society. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.

When you see someone who is old, say above 65, they do not necessarily have dementia.

Dementia, caused by a disease of the brain, can affect any of the functions of the brain – such as movement, visual perception, memory or attention.

It’s felt that almost 40 percent of people over the age of 65 experience some form of memory loss.

When there is no underlying medical condition causing this memory loss, it is known as “age-associated memory impairment,” which is considered a part of the normal aging process.

But brain diseases like Alzheimer’s disease and other dementias are completely different.

Alzheimer’s disease is the most common cause of dementia worldwide.

The risk of getting dementia increases with age, but it is important to remember that the majority of older people do not get dementia. It is not a normal part of ageing.

Old age does not cause dementia but is a factor in developing the condition. The probability of an individual developing dementia increases with age, but not everyone will develop dementia in old age.

Dementia can happen to anybody, but it is more common after the age of 65 years.

Indeed, “young onset dementia” (YOD) plays out at a much younger age, anyway.

YOD, which most often plays itself out in the form of Alzheimer’s disease, is an abnormal neurological condition that is likely caused by a combination of factors.

YOD is increasingly recognised as an important clinical and social issue. This group of individuals have distinct needs for living well with dementia as far as possible.

Young onset dementia (by EL Sampson, JD Warren and MN Rossor) [Postgrad Med J 2004;80:125–139. doi: 10.1136/pgmj.2003.011171] cite a useful breakdown of the most common causes.

These causes are diseases, and produce a chronic, progressive course of dementia. The spectrum of diseases causes YOD bears some similarities and differences to that of diseases causing dementia in the older age group.

epidemiology

(from Sampson, Warren and Rossor, 2004)

Prevalence rates of young onset dementia have been estimated between 67 to 81 per 100 000 in the 45 to 65 year old age group.

A rare type of dementia, the variant Creutzfeldt-Jakob Disease (vCJD) was first reported in 1996; the youngest patient developed symptoms at 16 years of age (reviewed in Verity et al., 2000).

As described in the WHO factsheet 180, Variant Creutzfeldt-Jakob disease (vCJD) is a rare and fatal human neurodegenerative condition which is classified as a Transmissible Spongiform Encephalopathy (TSE), because of its ability to be transmitted and the characteristic spongy degeneration of the brain that it causes.

Its diagnosis does need to be in very specialist hands.

But, notwithstanding all that, is likely that the situation is likely to be very complicated.

The basal forebrain cholinergic complex including nucleus basalis of Meynert provides the mayor cholinergic projections to the cerebral cortex and hippocampus.

cholinergic neurones

Source here.

It’s thought that the hippocampus represents the story of facts or events (episodic memory), one of the bookcases in the “bookcase analogy” of the Dementia Friends initiative.

But it has latterly been acknowledged (Schliebs and Arendt, 2011) that he cholinergic neurones of this complex have been described to undergo moderate degenerative changes during aging, resulting in cholinergic hypo function that has been related to the progressing memory deficits with ageing.

References

Harvey RJ, Rossor MN, Skelton-Robinson M, et al. (1998) Young onset dementia: epidemiology, clinical symptoms, family burden, support and outcome, London: Dementia Research Group, 1998.

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

Schliebs R, Arendt T. (2011) The cholinergic system in aging and neuronal degeneration, Behav Brain Res, Aug 10;221(2):555-63. doi: 10.1016/j.bbr.2010.11.058. Epub 2010 Dec 9. Review.

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

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].

If you say ‘no decision about me without me’ too much, it’ll become meaningless

It seems to have become a ‘bomb proof mantra’.

No self-respecting policy wonk on the healthcare circuit can be seen without the words ‘no decision about me without me’ stitched into the lapel of their jackets.

But if you repeat something enough times, people will believe you.

Conversely, it might become meaningless.

It of course is motherhood and apple pie, and not an ethos which you could fundamentally disagree with. Normally, that is.

This current parliament saw parliament introduce section 75 of the Health and Social Care Act (2012), and its associated regulations. It was a significant departure from previous statutory instruments enacted under previous governments.

This current Government wish to demonstrate in flashing lights their commitment to ‘localism’. This plainly became very hollow when Jeremy Hunt saw fit to contest the Lewisham case in both the High Court and Court of Appeal, against the loud wishes of stakeholders, at taxpayers’ expense.

The NHS in England is still reeling from this catastrophic policy decision, touted by a number of high profile think tanks and their corporate masters. It gave rocket boosters to competitive tendering to the private sector.

In any market, there are winners and losers. For every winner, there’s a loser. There’s a finite amount of cake we are being told. So in this climate it is no wonder that providers, including social enterprises, wish to seek an unique selling point in marketing.

The slogan “no decision about me without me” happily trips off the tongue for the purpose. There is very hard for any reasonable person to argue against the design of research programmes and the service without the views of the end-users.

But this all depends on your precise definition of ‘involvement’. For example, I have been successfully living with two chronic long term conditions, physical disability and mental recovery from a severe alcohol dependence. But in this climate of ‘co-production’ and ‘distributed leadership’, and even shared decision-making, nobody has had the decency to ask me for my opinions about these services.

One can adopt the stance that it is up to me to make my views know, rather than be merely a passive recipient of a service. And of course I do make my views known in non-symbolic ways.

The fact is that patients are all too often liable to made into cannon fodder for other people’s purposes. This might to be to sell a product or service in dementia.

Or they could be used to promote how wonderful ‘community services’ are in a London borough, for the personal gain of those promoting them, but at the expense of shifting resources away from severely under-resourced secondary care hospital units.

And not all stakeholders can be correct, and have an equal say in strategy. Reams and reams and reams have been written on this in the field of ‘corporate social responsibility’. For example, some social enterprises have found real difficulty in rationalising the drive to maximising shareholder dividend with community value and outcomes, however so defined.

Freeman had an attempt at formulating his ‘stakeholder theory’, but there have been remarkably few successfully theories since, arguably.

And how corporates show responsibility (or rather “don’t behave badly”) has become a hotbed for corporate strategists. For example, Prof Michael Porter, a strategy Chair at the Harvard Business School, published a highly influential review with Mark Kramer on society and strategy.

Large charities – operating strategically in a corporate-like manner – can, it can be argued under this construct, be obtaining their “moral fitness to practise” by involving people they raise large funds for in their mission, whether that is for ‘friendly communities’, ‘care’ or ‘research’.

So the pen is indeed mightier than the sword. Like pornography though, I can recognise real involvement and empowerment when I see it.

Some people aspiring, rather than battling or fighting, to live with dementia do wish to have ownership and control their dreams.

But in this crazy world of ‘dyadic relationships’, and other similar convoluted terms, some persons with dementia for example have their own beliefs, concerns and their expectations. They are not joined at the hip to the carers.

“No decision without me about me” is one of the latest political catchphrases in relation to the health service, in our jurisdiction, and describes a vision of healthcare where the patient is – if not an equal partner – then certainly an active participant in treatment decisions.

In 2002 the independent Wanless report recommended that, in order to cope with rising demand and costs, the NHS should move to ensure that all patients were “fully engaged” in managing their health status and healthcare.

It has a laudable aim, but, like many of these slogans, is at real danger of trivialising what is a profoundly serious policy issue.

Our ‘Dementia Friends’ session at BPP Law School on 1 December 2014

Chris Roberts (@mason4233), Jayne Goodrick (@JayneGoodrick) and I (@legalaware / @dementia_2014) will be running a ‘Dementia Friends’ information session .

This ‘Dementia Friends’ information session will be at 4 pm at BPP Law School, Holborn, London WC1N 4NY.

‘Dementia Friends’ is a Public Health England and Cabinet Office initiative, delivered by the Alzheimer’s Society.

It is likely that this will be held in the lecture theatre [though this is awaiting confirmation, as we need to coordinate arrangements with the course schedulers of the Law School.]

It is completely free of charge to attend.

It is an information session, containing some activities, about five key facts about dementia. It is not training. We are not experts. We are not counsellors.

People living with dementia can often be frightened to tell their friends and/or family that they have received a possible diagnosis of dementia. This initiative is designed to impart some basic information about what dementia is.

We are not delivering this as ‘a tick box exercise’ – only attend if you are genuinely interested.

There will be a booking sheet published soon on our Twitter feeds. Places will be allocated on a ‘first come, first served basis’.

We should like to thank Anne (BPP University Room Allocation Service), Prof Carl Lygo and Prof Peter Crisp (Professors of Law, CEO of BPP and Dean of the BPP Law School respectively), and Shahban Aziz (CEO of BPP Students) for local help in BPP in organising this session for us.

Proposed plan

PLANFINAL

Poster

poster