“Young onset dementia” – a label too far?




“Will you still need me when I’m 64?”

Many younger people can think they will live forever.

When I was at Chelsea and Westminster Hospital yesterday, a senior clinician in care of the elderly joked that this teenage children define ‘old people’ as ‘five years older than my dad’.

The definition of ‘young onset dementia’, referring to people living with dementia below the age of  65, I feel is arbitrary. I think it defies a general wish not to define people by a diagnosis or a label. I don’t live with young onset dementia so my views are compromised, but I believe the phrase ‘young onset dementia’ is potentially compounding a stigma potentially provided by the word ‘dementia’.

I suppose my biggest problem is the cliff-edge phenomenon which comes with such a definition. This can mean you are living with ‘young onset dementia’, but the following day with ‘dementia’.

This can mean totally different funding mechanisms, and subsequent organisation of your care. I know somebody who said to a man with young onset dementia last week, ‘Strictly speaking, I’m not supposed to look after you next week, as your CPN, as you no longer have ‘young onset dementia’ but ‘dementia’.”

She then, as it happens, then promised to carry on visiting, which pleased that person living with dementia no end. With over hundred different diagnostic causes of dementia, it is unwise to generalise, but many people with dementia can find themselves very disorientated very easily. This matters too from the organisation of good quality of care, in other words the need to mitigate against discontinuities in care.

But why especially produce a class of ‘young onset dementia’?

A key message is “Dementia is not just about old people”.  But does distinguishing a group of “young onset dementia” reinforce or compromise this key message?

Members of the public aren’t on the whole aware of “young onset” other conditions, e.g. cancer, where the syndromes may affect a diverse range of people. One hears of ‘juvenile arthritis’ but this is rather different. Of course it is reasonable to identify a group of patients from a certain age, such as department of medicine of the elderly, if specific ‘needs’ of such patients can be addressed such as co-morbidity, polypharmacy, increased likelihood of falls, increased prevalence of dementia or frailty. But it’s worth thinking that 30-40% of an acute medical take routinely involves people aged 65 or above, and if you go onto any general medical ward the bay can resemble a bay of ‘geriatric patients’.

The age of 65 might be considered a completely arbitrary cut-off from a number of perspectives. For example, most of us can think of spritely 90 year-olds who look no older than 48 year-olds living with several long term conditions (indeed might look younger). And one wonders whether this cut off has taken on board other trends in society, such as trends for increased retirement or pension ages, or general trends in longevity?

‘Young onset dementia’ tends to be younger patients with dementia which normally presents in the older age group such as Alzheimer’s disease or vascular dementia, or older people with conditions normally associated with younger people e.g. Down’s syndrome or Niemann-Pick. An argument for catering for specific ‘needs’ in young onset dementia, such as genetic counselling where there is a strong clear pattern of inheritance for the leukodystrophies, is feasible. But this wanders into tricky ground if you argue that people with ‘young onset dementia’ demand special consideration because of ’employment and family’ – older people of course have concerns too about employment and family.

The ‘catering for needs’ argument is pivotal to lobbying and charities. But there might be inadvertent consequences if, say, you argue that younger people with dementia are entitled to supported living with special housing and assistive technology, whereas older people ‘ought to be in care homes’. There are very good clinical reasons for why younger patients might benefit from residential settings, such as complex medical history or repeated falls. There is a problem if is a societal expectation that older patients in care are seen rather as ‘warehoused’, a particularly real concern if such persons were inappropriated prescribed psychotics to keep them quiet.

I personally would much rather speak with a 76 year-old worldly man with life histories to share and wisdom to impart, than spend time with a 45 year-old racist, sexist bigoted arsehole. Everyone is entitled to the highest quality of care and support in dementia, and, quite frankly, ageism in either direction can be found as indirect discrimination in procedures, policies or processes which act to the detriment of a class of people under the Equality Act. This potentially is amenable to judicial review.

Finally, I do wonder whether the term is actively misleading. That is, people think of ‘young onset dementia’ as clinically comprising a totally different set of conditions – but which are quite homogenous in pattern, time course and outcome. I meet quite a lot of people who don’t realise that many of the conditions which cause young onset dementia also cause late onset dementia, such as Alzheimer’s disease or vascular dementia.

I really feel that there should be constructive scrutiny of the term ‘young onset dementia’. As with all labels, one feel intuitively it should be enabling rather disabling. Some people will approve of the label; others won’t. But it’s a debate I feel we should have in the open?

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We’re going around in circles. We need to talk about #AAIC2016.


Don’t get me wrong.

I love neuropharmacology. I am interested in the neurotransmitter pathways of the human brain, and how they affect cognition and behaviour. I hold responsible for this Prof Trevor Robbins, one of my supervisors in my own doctoral thesis at Cambridge between 1997-2000. A great man in every sense, possibly the brightest person I have ever worked for, and a truly insightful genius. I don’t say this lightly.

Some time ago, I came to be interested in drug treatments for dementia. I took as examples simple manipulations of the dopaminergic and serotonergic systems of the brain, and indeed published my results on methylphenidate and paroxetine in a timely fashion. One of these drug manipulations worked in improving cognitive symptoms of the behavioural variant of frontotemporal dementia; one didn’t.

I was trained as a junior physician taught in research almost twenty years ago to value the nature of the scientific method. I was taught how to welcome the approach of scientific enquiry, that knowledge is built on bit by bit every day. Whilst we can overwhelmingly disprove something, it’s hard to be certain about findings. Unsurprisingly therefore I happen to think you can learn a huge amount from ‘failures’, and as such no research will therefore ever go to waste.

For rather complicated reasons, I later came to study criminal law. There I saw a rather different approach to proof – where things would be stated beyond reasonable doubt. This is of course different to the standard of proof in civil law, i.e. on the balance of probabilities.

I have some feeling for risk and defined probabilities, but it’s not great. I have some understanding of the relative risk of me being hit by a bus tomorrow compared to me travelling in a jumbo jet being gunned down over Egypt or Malaysia.

But I find risk and uncertainty tricky – this is like most human beings. I don’t think physicians and researchers have grasped this properly. Even if you can tolerate justifying booking in someone to do a spinal tap or take a set of bloods, or to go through a claustrophobic brain scan, think about real use you’ll make of the results. Is it really acceptable, or indeed helpful, to say to someone that they have a X% chance of developing Alzheimer disease in Y years time?

And – how confident would you feel in stating your belief, however well defined and settled, that if you did W, you could reduce your risk of developing dementia by Z?

We are where we are – and be in no doubt that insurance markets flourish on risk. Your premium will depend on how hazardous you are you to your insurer – do you have a strong family history of particular gene mutations for dementia?

When you attend AAIC this year again, I welcome you really to think critically about the concept of ‘pre-dementia’. For example, what does this tell you about the adequacy of our current diagnostic mechanisms for dementia if in fact the development of dementia is a slow burn across decades?

Think about the wider philosophical point. You might not be certain that you definitely have Alzheimer’s disease or you definitely have frontotemporal dementia, but if they are simply different manifestations of the way certain things happen to build up in the brain – such as tau or amyloid – do the diagnostic classifications indeed matter?

Or take for example posterior cortical atrophy, manifest in early stages most conspicuously, perhaps, in higher order visual processing. If you’re only interested in tau or amyloid, or voxel morphometry on MRI in parts of the temporal, occipital or parietal lobe, I have no problem with that.

What I do have a problem is is you not offering a way of improving his or her quality of life after the diagnosis. Perhaps you can find a way for him or her to live better with his difficulties, which could also include memory. Such an approach is called enablement – it is rehabilitation. It should be the norm for any long term condition.

We are where we are – and that includes in the hysteria of repeating every year the latest breakthrough on monoclonal antibodies for treating Alzheimer’s disease, this year reaching phase 3 for the first time, we have 49 million people living with dementia. Dementia is not discriminatory, in that anyone can develop it at any time. Likewise, it’s certainly not simply a first-world problem. If you’re vaguely concerned in equity, fairness and justice, you will be concerned about the latest technologies in Toronto, including drug treatments, not being available in a small village in Somalia.

This was always going to be the problem with pinning all your hopes on the medical model donkey. Even if the big breakthroughs come through in dementia, as in cancer, for different subtypes in different advances, how are we going to make them available? There’s no point slogging away for this for 10-15 years at huge cost for then the national regulator to advise against widespread adoption.

If you take the view as I do that it might be possible to slow right down specific dementias in future then I think it’s worth thinking about the best time to think about cognitive stimulation or cognitive rehabilitation psychological therapies. Without aggressively pimping innovations through private markets, it would be nice if psychological therapies could be easily self-adopted for the public good.

If you believe in zero sum gain, or even if you believe that money does not grow on trees, think about how easy is to divert resources from care to the ‘magic bullet’ of “curing” dementia. The fallacy of the cure is well rehearsed elsewhere – there’s no “cure” for asthma or headaches, routinely, just symptomatic treatment.

If you’re involved in research, I ask you not to be hysterical in raising false hopes to others about your work. If you’re involved in care, I beg you not just to talk about ‘treatments’ but to think about a whole person holistic management experience.

Listen to people living with dementia currently. Believe me, they have fundamental human rights, and you need also legally to listen to them.

Enjoy conference!

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What happens in hospital for a person with dementia has important consequences

What happens in hospital is a highly personal affair. Whether a hospital admission goes well or poorly can have a deep psychological impact on all involved, sometimes even for many years.

But fundamentally I don’t feel you have to be an ‘expert’ to deliver high quality acute hospital care – in fact, the word expert is best reserved for a person with dementia knowing about his/her dementia in his own particular time and place. But clinical specialists are also worth their weight in gold.

The Royal Free Hospital Hampstead ran the SHINE project successfully a few days ago, funded by the Health Foundation. A focus was ensuring people with a diagnosis with dementia weren’t stuck in hospital excessively, and could go home wherever possible.

I feel that, in the same way that a diagnosis of dementia is never as such given to one person in isolation, the experience of a hospital admission is fundamentally about how well everyone is treated. This includes, vitally, those closest to a person with dementia.

Dementia comes in all shapes and sizes, and no two people with dementia are the same. A person with dementia might be experiencing profound visual object processing issues and nothing else, or a person with dementia might have profound personality changes, observed by somebody, and nothing else of note.

But the most common type of dementia worldwide in all age groups is the dementia of Alzheimer type, and the most common problem early on is in learning and short term memory.

I will call the person closest to the patient with dementia the ‘carer’ for shorthand – but this is not an ideal word, quite often, for the son, daughter, husband or wife, even though the person does not seem himself or herself in a formal caring rôle. Going to hospital can be intimidating and frightening for all involved.

The way in which dementia care is delivered really is the critical issue. This impacts not only whether the aims of an admission are delivered, but also how the patient and those closest to them experience that hospital admission.

Dotting the ‘i’s and crossing the ‘t’s of the hospital admission also has a huge bearing on whether a patient with dementia will ‘boomerang’ back into hospital. A “repeated admission” and “failed discharge” can be two sides of the same coin.

Many people have high levels of patient contact and low levels of training opportunity (domestic staff, nursing assistants and ward clerks). Educating them about the essentials of what living with dementia are can be extremely useful to improving the overall experience of dementia care.

Changing working practices of people in the acute hospital to include patients and carers, I reckon, is essential. It’s all about the patient – and services should not be organised around the convenience of the doctors and the hospital.

This necessarily involves paying attention to detail. It’s easy to think immediately of a few examples.

  • Making sure that the patient is always oriented in time and place even in a pretty boring hospital bay. A patient always has some way of checking what investigations are forthcoming will decrease the stress when the porter suddenly arrives to collect the patient for the investigation.
  • Carers not being lectured to if they visit outside visiting hours, even by a margin of minutes, will get rid of the ‘them against us’ phenomenon which can ruin the hospital experience for all.
  • Allowing carers to stay with patients for long as possible can alleviate the distress for both parties which can result from being away from each other.
  • Patients with dementia not given their food miles away from where they’re sitting will massively help due to the marked attentional problems which can occur in dementia.
  • Doctors and all staff introducing themselves properly with their name, and a brief description of their rôle.
  • Also, in delivering person-centred care, particularly for someone who might be disoriented (delirium often accompanies the experience of someone with dementia with an acute illness), it is helpful not to have such a rapid turnover of staff.

This video describes the “CAPER anchors” running at the Royal Free. I find the method really helpful, and in summary, CAPER describes a systematic approach as follows.



C collateral

Get the right information from the right people. I think there is a psychological mindset often from clinicians that carers are an obstacle to providing care, which is more than organising investigations and following them up at some stage.

Carers, like the person with dementia, instead are a huge source of information, not least about the symptoms of the acute illness, but also about the social situation.

In a recent acute admission, the hospital staff did not realise for ten days that I lived with my mother – they thought she lived alone. Nobody ever asked me.

This was highly detrimental to the understanding of my mother from a physiotherapy or occupational point of view, and delayed slightly mobilising plans for her discharge.

A assessment

This must be meaningful and strengths based assessment including the skills are meaningful to someone’s life.

In living with dementia, it is much more important to identify what a person can do to maximise his potential for independent living (and to minimise dependence on care).

Such an approach can drive coming up with solutions intead of problems.

P partnership

It is essential that everyone is involved – including patients, friends, family members.

The official guidance from the RCN and Carers Trust indeed advocate the use of personalised care plans incorporating information from everyone.

I cannot see any other way of approaching this.

E enablement

The aim should be to maximise functional independence, and this might be something simple to make sure somebody doesn’t leave hospital with an unmanageable prescription list. Having too many medicines can make taking them accurately difficult.

Above all, I saw first hand the need to prevent hospital related deterioration, even while  a patient is ‘getting better’.

This means not keeping a patient lying in bed excessively, where a person might develop pressure ulcers or even a deep vein thrombosis/pulmonary clot; or having a venflon/cannula in for longer than necessary thus providing an infection site.

Engaging a person early on can encourage a sense of wellbeing in hospital ahead of hospital, and this might include something simple like walking and merely chatting with the patient while they’re in hospital.

Activities such as massage or introduction to pets can improve wellbeing for all, for example.

R. Role modelling

As Gandhi is reported to have said, “Be the change you want to see“. People indeed learn by example, and staff should be encouraged to pass on tips and advice to colleagues about what worked well (and what didn’t).

Essentially, no one size fits all.

I feel we’re some way of where we should be. But at least we now know where we’re hoping to go to?

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