Wednesday 7 August 2013

Putting hope to good use

The most enduring question in dementia is surely the one that asks if we will ever find a cure? It is something people living with dementia long for, something their relatives desire above anything else, and something that those who are bereaved as a result of dementia wish had been discovered years ago. In short, a cure for dementia would represent possibly the ultimate medical breakthrough.

Sadly that day is not here yet, and despite almost weekly headlines of potential new treatments and theories on dementia that promise so much, the cure proves as elusive as ever. This is largely because there is still so much to learn about dementia, its many forms, and within each of those, understanding how they manifest themselves uniquely in each individual. It is, by anyone’s standards, a huge task.

In the meantime, all we really have is hope. They say it’s the hope that kills you, but I think in relation to healthcare hope should give you purpose and direction. For scientists and academics hope represents challenge – the chance to make that breakthrough that you will be remembered by. For pharmaceutical companies, whose influence in healthcare is arguably far more extensive than it perhaps should be, hope offers the promise of big business and huge profit.

For the rest of us, living, loving and losing our relatives to dementia, all the research, papers and trials we hear about seem a world away from real life. For us hope represents a need for action, and that indescribable feeling of wanting to be able to do something, anything, to make our loved ones well again. For someone who is living with dementia, hope represents frustration, and a realisation that when you are living with a terminal disease the breakthrough that provides a cure just cannot come quickly enough.

This outlook may seem very bleak, but in the midst of it there is potential. Not for a cure by this time next week obviously, but for the more immediately achievable aim of making living with dementia a more positive experience. Positivity about dementia is very bound up by the need for a cure. The fear is that whilst a cure remains elusive, improvements in dementia care will always be held back by the one element that is missing, rather than all the other elements that we can improve upon right now.

Problems in everything from diagnosis to end-of-life care have been attributed to the lack of a cure. Lower than expected diagnosis rates have been linked to an attitude that without a cure what is the point in diagnosing (not a view I share but one that has been widely touted). Poor care post-diagnosis has been attributed to there being no point in providing better care because the prognosis for everyone with dementia is terminal regardless of anything we do (another viewpoint I don’t share). Even unacceptable standards in end-of-life care are linked to the lack of a cure for dementia.

People who are dying of cancer are considered to have lost a battle that they at least had a stake in given the many treatments that have been developed to try and cure the numerous cancers. The hospice movement embraces people who are dying from cancer and provides some truly exemplary examples of compassion in end-of-life care. In contrast people with dementia aren’t likely to get better regardless of how early they are diagnosed or whatever treatment they are offered. Theirs is considered a losing battle from day one, and somehow a less worthy one because there is no cure. For them hospices generally aren’t an option, and an end-of-life that is chaotic, undignified and very confusing often awaits.

I would argue that using the lack of a cure as an excuse for anything that detriments people living with dementia is never justifiable. In wanting that elusive breakthrough so badly we are in danger of losing sight of what is more immediately achievable. In setting so much store by having a cure, dementia comes out as the poor relation to all the other major diseases that at least offer the potential of recovery. And worse of all, we struggle to move away from the perception of a diagnosis as a death sentence and the years afterwards as time on death row.

I’m not saying give up trying to find the breakthrough that could end dementia, far from it, but we must not let our desire for a cure obscure the need for a more proactive approach right now to ensure that living with dementia is just that, living. It’s about taking our hopes, challenges and frustrations and seeing how we can make life better for people with dementia today, while the scientists and academics do the work that will one day change the prognosis of dementia and with it, change our world.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

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