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How can we improve things for people affected by dementia?

Clarissa Giebel

There are 800,000 people with dementia in the UK with numbers set to rise to 1.7 million by 2050. But awareness is rising too: at the University alone we have 1,274 Dementia Friends and 32 Champions, as well as the government’s dementia tsar, Professor Alistair Burns, Vice Dean for Clinical Affairs in our Faculty of Medical and Human Sciences. Six years after the national dementia strategy was published, PhD student Clarissa Giebel looks at how far we still have to go to improve the lives of those affected by the disease.

It’s clear that dementia is entering the public consciousness beyond those with the disease and their family and carers. Julianne Moore won an Oscar for her performance of a woman with early-onset dementia in Still Alice. The Dementia Friends initiative has surpassed a million members.

But for a disease that’s so often been described as a ticking time-bomb and one that is so debilitating – causing problems with memory, increased agitation or wandering, and problems when doing daily tasks, in most cases leading people to be admitted into costly care homes – it’s clear that we still need to find a way to understand that it’s a problem for all of us, sooner or later at least. Making hospitals and care homes more dementia friendly is a key priority. But others can do more to make things better for people with dementia. For example, last year easyJet took action to accommodate people with dementia better during their flights. What about hotels? People still want to go on holidays, but may feel reluctant if these are not adapted to their needs.

If we want to help people with dementia and their family and carers, then we need to continue doing world-class research. But studies often struggle in recruiting participants. We need this to change. That’s why the new national initiative Join Dementia Research has been launched. Anyone can sign up, from healthy volunteers to people with the disease. I already have.

Reducing the risks of developing dementia and trying to recognise the symptoms as early as possible are critical. But how do we support the people with dementia and their families afterwards? We need a greater focus on the value of non-pharmacological interventions, such as modifications to the home or training carers to cope with difficult behaviours or cognitive training.

We can maintain or prolong independence for longer, but there are still many avenues we have not explored yet. New drugs aren’t the only thing we need to focus on.

Social care after diagnosis is crucial. Not only through interventions, but also through day-care centres or formal carers helping the family daily. It’s questionable though how this key priority of post-diagnosis support can be achieved in the light of drastic social care cuts.

Looking back to 2009, the profile of dementia has definitely been raised. But we still have a long way to go. Dementia affects us all and in the long run we all need to get involved if we’re to deal with it.

Clarissa Giebel - Research Assistant at the Personal Social Services Research Unit and PhD student in Cognitive Neuropsychology and Dementia at our School of Nursing, Midwifery and Social Work. This article first appeared in The Conversation:

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