Dementia awareness is not just for one week – it’s for life

Dr Shibley Rahman is currently an academic physician in dementia and frailty. His contribution on the diagnosis of behavioural frontal frontotemporal dementia, published while he was a M.B./Ph.D. student at Cambridge in 1999, is considered widely to be an important contribution to the field even cited in the Oxford Textbook of Medicine. He has published widely on dementia, and his first book ‘Living well with dementia’ won best book for health and social care for the BMJ Awards in 2015. His third book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach’ was published earlier this year on aspects of the integrated care pathway, and likewise has been critically acclaimed. He, furthermore, has a passionate interest in rights-based approaches which he accrued as part of his postgraduate legal training. He tweets at @dr_shibley.

This week – in England –  it’s ‘Dementia Awareness Week’ – 14-20 May 2017. But so what?

The problem is – ‘dementia awareness’ means different things to different people. In a nutshell, I hope that the workforce can embrace the notion that people living with dementia are incredibly rewarding to support and look after, and use this week as part of a celebration of this.

If you’re working in health and social care, it can be surprisingly easy to overestimate the knowledge about dementia amongst some members of the general public. And to be fair, we do actually know a lot more about dementia now than we have ever done in the past – ranging from biochemical methods of diagnosing some rarer genetic forms of Alzheimer’s disease or frontotemporal dementia to validated methods of care planning. With greater awareness of dementia, through systematic audit and research, the quality of services has also undoubtedly improved.

So there are, indeed, plenty of reasons to be cheerful.

I feel being ‘dementia aware’ is vital for true inclusion of people with dementia and care partners into wider society. The excellent ‘dementia friendly communities’ around the country have made huge inroads in bringing about this fundamental cultural change.

I do however believe that there are three core reasons for being ‘dementia aware’, and these are especially relevant to members of the BGS:

  1. Dementia is very common, and we need to evaluate carefully our response to it.
  2. The work done by care partners is of fundamental relevance to what goes on elsewhere, e.g. in hospitals or care homes.
  3. A fundamental need to see ‘the bigger picture’.

It’s particularly important to be ‘dementia aware’ as – quite simply – there’s a lot of it about.

There are 47 million people living with dementia in the world, and approximately 850,000 in the UK – it’s highly likely you’ll at least know somebody who knows someone with dementia. A recent statement from the Federation of the Royal Colleges of Physicians stated, “Those patients presenting on the acute medical take are now older (66% are over 65), more likely to have one or more long term condition, and 25% have dementia.”

Dementia care is a fundamentally human calling, with high quality care intimately involved with effective communication, handling complexity, negotiating comorbidity and polypharmacy (very often). Put simply, we need a sophisticated, trained workforce, who are more than just tangentially aware about dementia.

Therefore – whisper it softly – learning about dementia is, unfortunately, a possibly neverending ask. At one moment, you could be learning about the diagnostic classification of dementia, and at another learning about the law of substitute decision-making or the emotional conflicts in bereavement.

Polling has now shown that dementia is the most feared condition in adulthood, above cancer. This fear has largely resulted from lack of general knowledge about dementia. And with this fear, a triple jeopardy of stigma, discrimination and prejudice against people with dementia and care partners can all too easily result. The theory goes – by decreasing the knowledge gap, people can become less frightened of dementia and come forward and seek an earlier diagnosis. People living with dementia bring enormous value to society, and are entitled to the full range of psychological and pharmacological therapies, community-based rehabilitation and enablement (including in social health). A timely dementia diagnosis is said to be important for all of this to happen. Only if you’re ‘aware’ of the impact of your diagnosis, can you prepare for the future, in the clinical, financial and legal dimensions of your life.

Anyone remotely involved with people living with dementia will also know clearly the amazing contribution of carers – often unpaid family care partners who find caring exceptionally rewarding but also on occasion very demanding. This means we all need to treat people with dementia and care partners with full dignity and respect. All too often care partners are made to feel like an inconvenience on a ward round, rather than a resource for the diagnosis, management and discharge of an acutely-ill patient.

I therefore fully support John’s Campaign. John’s Campaign was founded in November 2014 by Nicci Gerrard and Julia Jones. It calls for care partners to be pro-actively welcomed, and argues that a collaboration between the patients and all those connected with them is crucial to their health and their well-being.

Awareness is different to being an “expert”.

We can’t expect everyone to be expert about everything about dementia – besides, perhaps the only true experts of any condition are the ones who live with their condition at a particular time. But there’s a lot to be said for all being ‘aware’ about what’s out there on offer – such as risk reduction, diagnosis, care, support, and palliative care/end of life. Being ‘aware’ therefore involves some appreciation of the ‘big picture’ including the social model of disability.  Why is it, for example, that hospitals can be very unattractive environments for patients – for example, unappealing décor of wards, rapid turnover of staff, disorientating schedule of investigations etc.?

Being aware of the entirety of the care environment is also essential.

It is also knowing about how various people can interconnect – for example doctors, carers, social workers, nurses (including Admiral nurses), speech and language therapists, dietitians, occupational therapists, physiotherapists, and many more – and interact to promote the wellbeing of a person with dementia, wherever he or she is living. With the recent explosion of a consensus of core skills and knowledge about training, it can be incredibly hard for practitioners and professionals to be comprehensively ‘dementia aware’

Being able to see the ‘big picture’ to benefit most people with dementia and care partners needs an ability to see beyond traditional subject boundaries.

So ultimately … what would I like the workforce to gain from Dementia Awareness Week this year?

Simply this. (My tweet from last night)

Ideally, I want as many practitioners and professionals to become knowledgeable, interested in and enthusiastic about dementia. #DAW2017

— Dr Shibley Rahman ️ (@dr_shibley) May 14, 2017

BGS members should be in the vanguard of dementia awareness in ‘Dementia Awareness Week’ and beyond. I am sure they will be.

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