Monday 16 May 2016

Why awareness of dementia isn’t enough

Dementia Awareness Week (#DAW2016) is arguably the most dementia-focused week of the year in the UK. It’s a time for launching initiatives, publications, products and services, and for charities, organisations and businesses to raise the profile of their work. Indeed, Dementia Awareness Week was the trigger for me to begin this blog four years ago.

Amongst all of this coverage, the headline message remains fairly consistent: If you think you may have dementia, or are concerned that someone you know might have dementia, please see a GP. In essence that’s a very simple action, but it is bound up in so many other issues, emotions and concerns.

Seeking a diagnosis in 2016

Whilst in the UK we’ve become rather adept at talking about the diagnosis of dementia, or the perceived lack of it (depending on what you believe about prevalence statistics), what we are still very poor in delivering is the holistic package of care and support that should wrap around a person with dementia, and their family, when the time is right for them to seek that assistance.

We wonder why people don’t want to seek a diagnosis like having a diagnosis has become some sort of reward that people should be grateful for, but the reality is very different. Whilst for some people having a diagnosis helps to answer questions about their health that are causing them concern, for those who go undiagnosed, the question is potentially as simple as this: Why would you seek a diagnosis if you don’t feel confident in receiving the aftercare and support you need and deserve?

To find the answer as to why people don’t come forward as soon as they experience symptoms you have to look at three intertwined issues: Awareness, Stigma and Support.


As a country the UK has become one of the leading nations in raising awareness of dementia. Through campaigns, most notably Dementia Friends, myths have been busted – “Dementia is not a natural part of the ageing process” – and it’s safe to say that more people know about the symptoms of dementia than ever before.

Sadly, with awareness also comes an appetite for headlines such as those proclaiming dementia to be the most feared health condition in the UK. For the record, I don’t doubt that it is the most feared health condition, but the problem with fear is it will inevitably put people off from seeking help if they notice dementia symptoms in themselves or a loved one. The more fear is ramped up, the less effective those more measured awareness-raising messages become.


Again, I think a lot has been done to counter stigma, most notably by people who are living with dementia speaking out and joining leading campaigns – not to mention beginning their own campaigns (examples include Dementia Engagement and Empowerment Project and Dementia Alliance International). Their voice is absolutely vital in helping to show that it is possible to live well with dementia, and that a diagnosis doesn’t mean your life is over.
The problem remains, however, that amongst older generations people still associate dementia with outdated ideas about ‘madness’ and asylums, and that is constantly reinforced by stories of bad dementia care homes and home care, poor treatment of people who are living with dementia in hospitals, ‘bed-blocking’, elder abuse, family carers who are unsupported, and a disregard for the end-of-life wishes of people with dementia. Equally, if you are a younger person with symptoms of dementia, you may feel that dementia is only something 'older people get' (a widely-held belief, but of course untrue).
Whilst there are pockets of great practice in supporting people with dementia in the UK, this is confined to a patchy postcode lottery that leaves people with dementia and their families at the whims of local commissioners of health and social care services, and whatever provision is delivered by charities and community interest companies in their locality.
Yes, there is a desire from government for everyone to receive the care and support that is right for their individual circumstances (See the implementation plan for the Prime Minister’s Challenge on Dementia 2020), but the reality is very different. Changing this reality is, for me, the key to making the UK the best country in the world to live with dementia.
Offering a value-added dementia diagnosis
A value-added diagnosis offers cutting edge care and support that is about real choice and control (not just the misguided perception that you have choice and control), occupation and involvement (not tokenistic gestures), refining daily living skills (enabling rather than disabling), making transportation accessible (driving, using public transport and having the confidence to go on holiday and do the things that the person wants to do) and modifying the environment of the person’s home and community (to provide both symptomatic relief for problems like orientation, and also help the person to remain comfortable at home and when out and about).
Finally, every one of these approaches must be personalised and holistic, taking into account individual wishes, wider family circumstances, and any other health conditions the person has now, or may develop in the future.
It’s rehabilitation more than medication (in the absence of more reliable drugs to treat the different forms of dementia). It’s family orientated and far more of a social model than a medical one (doctors  have their role to play, but dementia specialist nurses and OT’s are generally more needed, and the expertise of social care professionals is paramount). And it is never, ever, one size fits all.
Ultimately to deliver this is about prioritisation and funding. But it’s also about belief in dementia care and support that is designed like this. It’s about ditching the old model of dependency and giving up (and I urge you to read Kate Swaffer’s experiences of this) and offering a value-added diagnosis that motivates people to come forward when they have symptoms of dementia.
More than just awareness
It is so much more than just awareness, but in many ways that is what makes it so important. Please use #DAW2016 to spread these messages, but don’t stop when the hashtag is old news. Dementia needs this platform every week – I strongly believe that positive change will continue to evolve, but all of us with a personal and/or professional passion for dementia has to own that change for it to happen.
"Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has." Margaret Mead, American Anthrapologist

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

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