Carers are like gold dust for living better with dementia

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According to Carers UK in May 2014, the 2011 Census figures for the UK showed an 11% rise in the number of carers since the last Census in 2001 – increasing by over 620,000 to 6.5 million in just 10 years. Under this definition, “carers” provide unpaid care by looking after an ill, older or disabled family member, friend or partner.

I recently found myself in such a caring rôle, unexpectedly so. Despite my medical training, or possibly even because of it, I found myself wholly unprepared for it. I must say that, like most carers, it brought me even close to the ‘care recipient’ in question; it was incredibly hard work, physically and emotionally exhausting, but very (non financially) rewarding.

When I was rung up by the North London Carers’ Society which provides support to people such as me, I remember being surprised being referred to as a ‘carer’. This was not out of shame, mind you. I just think that, like many things in life, I had not expected this ‘to be me’. But, as I do keep reminding myself, absolutely anything can happen to anyone at any time.

In my ‘day job’, I am an unpaid analyst of policy both nationally and internationally in dementia. This does not bring me to any conferences. I note recently a flurry of people with lived experiences complaining about such conferences, but as such I would relish the chance to be invited to one personally.

But it has struck me how it would be foolish to try to airbrush out of the discourse policy specialists and carers in discussing living better with dementia. And I feel certain things have to be said for sake of clarity.

A general longstanding principle about wellbeing is that somebody else’s wellbeing can depend upon your wellbeing. This means that if you’re physically, mentally or socially content, this will rub off on somebody close to you. The converse also happens to be true – if you’re physically or emotionally exhausted, this will rub off on the closest to you too.

Similarly, the legitimacy of your human rights depends on the legitimacy of others to exert their human rights. The human rights of a person with dementia and a carer are entirely complementary, in the same way that my freedom of expression might conceivably impact on your right to privacy.

But there are other important drivers for not ignoring the carers.

In England and Wales, since 2009 particularly, on the publication of the seminal report of Prof Sube Banerjee on the need to decrease the number of inappropriate prescriptions for anti-psychotics, and as a stated policy aim in the national strategy ‘Living well with dementia’, there has been huge success in this area of policy. A large part of this has been for professional staff to seek out the reasons why somebody might be agitated or anxious, and providing person-centred care? This is now being borne out by much meticulously conducted research. A person providing care, whatever the official job description, is a ‘carer’. The clue is very much in the name.

A strict interpretation of the jurisprudence would provide that only the person living with dementia could or should make a decision, and that international human rights in fact trump a domestic notion of legal capacity. The reality is that some people with dementia which has far progressed are unable to communicate their decisions, and this is particularly problematic if this lack of communication impacts on health and wellbeing.

It would be fine to argue that in an ideal world everyone can make their decisions in tricky situations known in advance, but the reality is that you cannot possibly anticipate every scenario in advance. Ideally, there’s a school of thought, however, that everyone should have some form of advance directive; for example in anticipation of a force majeure event such as a road traffic accident? And the further reality is that many people in England and Wales, and presumably other jurisdictions, with dementia have not actually been given a formal diagnosis of dementia. Many people enter hospital without a diagnosis of dementia only to be given one, and then can’t even be deemed to be safely discharged to their own home. They often can from that point go to a residential setting, or indeed die in hospital. But the law on capacity in England and Wales is, diplomatically put, a “good broad brush attempt”; we do know, for example, that in certain types of dementia a person can meet the legal test for capacity, but be making wildly abnormal types of decision; an advance direction might mitigate against this problem.

Carers, however so defined but invariably sons, daughters, husbands or wives, have a crucial further rôle to play on the admission of a person with dementia to a care setting such as hospital or hospice. Knowledge and information from carers can be invaluable in shared decision making about care; and it is impossible to know what the background cognition of anyone is without asking somebody close to him or her.

At one extreme, I have seen carers talk on behalf of people with dementia with them present; or carers ‘hog’ bulletin boards. But at another extreme, a discourse without carers is not adequate either. This is literally a case of practising what you preach, if you indeed believe that ‘no decision about us without all of us‘.

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  • Chris Roberts

    Excellent post Shibs, we must never foreget the love, passion, patience, care and support that people with dementia are given freely by carers and loved ones. People living with dementia need to be as independent for as long as they can including making their own decisions and speaking out for themselves but we can’t do it alone, by the very nature of the illness we need continuing support.
    People living with dementia, carers, researchers and health professionals are all in this together, we all have a part to play, ‘nothing about us without All of us’

    • John Quinn

      Well said Shibley…..a commonsense approach about many people’s reality of their lives and needs. We need to work together to achieve more, and that ‘team’ effort whether it be at a personal or macro level will, simply by the nature of having many voices and hands to address a shared philosophy and belief, hopefully appear as a strong united message. People living with a diagnosis of Dementia have particular knowledge and should NEVER be dismissed, however other important people who are a part of their lives also often have knowledge and CAN be valuable assets. It’s the relationship of the people involved that will dictate if a positive and beneficial.approach forward can be successful. Chris I agree with your comments. ‘Nothing about us without ALL of us’.