Post-diagnostic support in dementia

I thought I would get back to my origins this morning and write a little about what I am meant to be doing as a doctor.

Dementia – most of us hate the word; without mind. Bollocks.

The Japanese went as far as changing the name to their version of ‘disease of cognition’ – perhaps we in the West will get around to doing the same.

Anyway. In the meantime, we are stuck with Elizabethan terminology.

Diagnostic rates

If you look at diagnostic rates for dementia across the country, you might expect there to be variation – for, isn’t there always variation in healthcare, diagnosis, support and treatment?

You might anticipate higher rates of people living with dementia in more affluent or retirement areas – Bournemouth seems to stand-out to me as a place where folk go to retire; and, as dementia is predominantly a disease affecting older people, if you have lots of older people you will have proportionately more people who have dementia.

That seems to be the situation in Japan.

I know that some of you, the more discerning will have noticed my mention of rate and number – the two are different; if you have three people with a condition and only one is diagnosed the diagnostic rate is 33%, if you have 1000 people with the same condition and 33% diagnostic rate, that will be somewhere around 300 people, and so on. You get my meaning.

Well, in the UK we have variation not only in the numbers of people living with dementia, but also those receiving a diagnosis.

I will not tell you the places where diagnostic rates are low, but you can find out here.

What this in essence means is that there are people, going about their everyday affairs, perhaps struggling to pay bills, park their cars, remember their grandchildren’s birthdays, when they aren’t actually forgetful, but have something more significant underlying their behaviour.

Dementia as disease and metaphor

Yes, we know that dementia is more than forgetfulness – it is a disease of the self, of mood, behaviour, personality, but the hallmark in most cases is not remembering.

Dementia, is classified as a disability. Like hearing or visual impairment, cerebral palsy or immobility. Yes, you can get a blue badge, yes, the council, public places – hospitals, Meadowhall (?!) should all be adapted to support those living with dementia; we call this dementia friendly – I’ll just call it friendly – easy to navigate no matter your limitation.

If, therefore, there are people who have dementia – that is, perhaps, they have the disease, all the symptoms, behaviours, struggles, but, for whatever reason their GP is not referring them to the local clinic or the clinic is so difficult to reach or the waiting times so long that people are not receiving a diagnosis, they are potentially missing-out first, on support and secondly on anything that goes with the diagnosis.

I have written before about Susan Sontag’s allusion to TB then cancer and HIV as social diseases, not in the sense of STD, but more, in relation to the attachment of qualities to the person who has the disease – immorality or weakness of spirit.

Nowadays we know that this is nonsense; when I was growing-up, cancer was still a dirty-word.

In the 21^st Century, dementia has acquired this mantle, if unconsciously.

Yet, you do not overcome stigma by pretending it is not there, you address it by cracking it over the head. ‘Let’s talk about…’

So, if the stigma can be overcome, there is the nihilism.

Nihilism & Care

‘Why diagnose people with dementia? It is incurable.’ That is the mantra rolled-out by the ill-informed, folk whose heads are buried up to their necks in sand.

Where to begin?

Yes, there is no cure for dementia, yet, there is care. There is support.

There is no cure for growing old either, it doesn’t mean we don’t talk about it, don’t plan for our retirement or what happens afterwards.

And it is the care and support that to me are most important.

Yes, we have medicines that work for some people some of the time; and they are fantastic. For many people, they don’t do anything, they don’t preserve ability, function or independence.

Yet, there is still much that we can do to support folk.

Loneliness is a pernicious 21^st Century disease.

Take loneliness and combine it with dementia and you have a disaster.

Take dementia and add long-term multi-morbid conditions that are treated without consideration of an individual’s cognitive state and you have – a disaster.

Admit a person to hospital with something benign – chest infection or fall, add dementia that is not considered and… yes, disaster.

I know I have covered all these areas in previous blogs.

Too many unnecessary pain-killers and dementia… too long in bed… too long in pyjamas…

You get the idea.

Yes, dementia can result in bias all of its own –

‘Don’t ask them, they are gaga/senile/eyebrows raised…’ (have dementia) type of approach; don’t seek out their opinion, don’t try to address the visual or hearing impairment, just take your best guess as to their preferences; you look like ‘fish and chips on Friday’ or ‘bacon and eggs’ to the Pescatarian or Jew respectively.

Mostly, however, the more people we have identified as living with dementia, the more advocates will step forward, the more society, hospitals, libraries, shops, parks will be required to adapt, to change.

And now, to post-diagnostic support – that is where I began.

Post-diagnostic support

This is the support provided to people after they receive a diagnosis of dementia.

‘Mrs Broon, you have dementia. Goodbye.’

I am sure most clinical interactions aren’t that blunt, but there are many situations where people are given a diagnosis of dementia and provided no support, or the support that they receive, like the diagnostic rates I already mentioned is so variable that all you can expect is inconsistency.

The Admiral Service, sponsored by Dementia UK, for example, offers individualised, person-centred care planning for those who are diagnosed with dementia and, in particular their families and carers.

‘Your dad has dementia. Cheerio.’

What does this mean? What are the consequences? What is the prognosis? Who can help? What to expect? Why? And so on.

What to do when a person with dementia stops eating? Do you move on, watch them losing weight and fade away, or, do you consider that their appetite might have changed, their taste in food, their eating times, habits, energy levels might be different? You see, dementia is a new world, with rules that differ from everyday life, with a guide you have some chance of success, without it, the road can be impossible.

Traditionally, those people who have Alzheimer’s dementia received ongoing support as, there is an expectation, according to our friends at NICE that there will be ongoing review and assessment of the drugs prescribed; yet, if you have Vascular Dementia – the disease more often associated with stroke, heart disease, atrial fibrillation, hypertension and diabetes, as there is no treatment, you are diagnosed and sent on your way.

This is a focus of my work.

Dementia, no matter what you call it is an individualised, personalised condition that shares similarities but nothing more from one person to the next; it is the disease which focuses on our essence.

It is not adequate to take the, ‘What difference does it make,’ route, neither is it OK to say, ‘You have a life-limiting, life-changing, terminal disease; see you later.’

More has to be done, more support, ongoing, for the duration of the disease, be it two, five or ten years. Yes, dementia is a long-term condition. Which like diabetes, COPD or arthritis can go two ways – treatment, care and support, all of which reduce the burden on the individual or, neglect, looking the other way and make-believe with the consequences of pain, harm, trauma and cost to the individual and the system.

Let us move-on, let us come together and work towards a position where we don’t pretend that things are not a certain way – like children, shutting eyes, fingers in ears, stamping feet.

This is the reality of our world.

We can work with it, we can care, support, aspire to better or we can choose the alternative.