A Dementia Awareness Week Challenge - Find The Real Story of Living With Dementia

20/05/2016 12:55

The dates of Dementia Awareness Week always have a massive circle around them on my calendar. Whilst I passionately believe that it's important to raise awareness all year round, there is no doubt that a week of concentrated action definitely helps to put dementia higher up the agenda.

This is usually a week where dementia related announcements are plentiful and social media activity frenzied, but what does that really mean for people who are living with dementia and their families? I have to say, in my personal experience, it didn't mean a huge amount to us as a family, in fact I barely registered that Dementia Awareness Week existed when my dad was alive.

Undoubtedly much has changed since my dad was living with dementia, but not all of it is for the better. Dementia has become a label to associate with a whole variety of products and services (some very helpful, others less so). The increased profile of dementia has also helped to sell newspapers - I've lost count of the number of headlines promising cures or treatments that are often tentative at best, and in all reality even if they are bona fide discoveries they are years away from being in widespread use.

With this plethora of dementia related information and promotion, I sometimes wonder what we really mean by awareness? Ideally it should be about informed knowledge of what dementia is (and isn't), practical advice for those who are experiencing dementia (either themselves or a loved one), and for those who work with people who are living with dementia, a greater understanding of the challenges (and positives) that can result from a diagnosis.

That balanced approach is something I personally feel is often sorely lacking. I don't want awareness that scares people to dominate the landscape. Yes, there are many elements of dementia that are incredibly difficult to cope with for everyone involved in the life of the person with the diagnosis, but we must always remember that the challenges are greatest for the person themselves.

Nor, I hasten to add, do I want awareness that raises false hopes. I would never, ever buy a newspaper that offers up information on the latest dementia cure. Nor do I tweet such stories, or will I endorse or promote any product that promises something revolutionary for people with dementia. It's not that I don't hope that these claims are true, I do, and amongst all of the headlines and products and promises I expect there is something genuinely worth getting very excited about, but I have no idea what fits into that category and I doubt most of you reading this blog do either. For that reason, if none other, I deploy the 'if in doubt, don't get involved' philosophy.

All of which leaves me wondering where my 'brand' of awareness raising really fits in? I began what I do now purely to share our experiences of my dad's dementia, and specifically some of the things that had really helped my dad and brought him comfort and happiness. I wanted to give other families hope, and give a real and personal take on 'living well with dementia' as best as I could from the perspective of a daughter of a gentleman who lived with dementia.


To this day, my most ardent interest in anything related to dementia remains in learning about the experiences of people who are themselves living with dementia. Those are the blogs I follow, the emails that don't get deleted from my inbox and the tweets I'm most likely to respond positively to. No one can tell the 'story' of dementia better than those who are living with it. To that end, I have compiled a list of people who are living with dementia and use twitter (many blog too) - it's certainly not comprehensive, but it's a start. And if you want the perspective of caring and supporting a person with dementia, then seek out communications from carers and family members, they are easy to find.

So this Dementia Awareness Week I challenge you to immerse yourself in my brand of dementia awareness. Awareness of the people who are living with dementia and their families. Not the media-friendly celebrity stories, but the real, honest, and sometimes surprisingly positive accounts that are published by people who I feel a real affinity with, and I suspect you might too.