“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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  • Steve Milton

    Excellent blog Shibley.

    A few observations.

    When people were routinely not diagnosed till dementia had been quite advanced – diagnosis under the age of 65 was much less common – (on the basis of no evidence to back this up aside from my own observations) – but would commonly hear when I worked on a helpline that ‘we/I knew there was something wrong years before’ – leading me to suspect that younger onset dementia was much more common that stats suggested – depending of course on how one defined dementia.

    Historically of course it has also reflected how someone sits with regard to services, rather than any specific clinical criteria – both health and social care services are still divided down an arbitrary age line that reflects nothing about the need of complex human beings and everything about the structures and moon sets within which services were conceived.