THE BLOG

Dementia In Your Family? You Are Not Alone

26/09/2017 17:29

September marks World Alzheimer's Month, the annual 30-day awareness-raising campaign led by Alzheimer's Disease International. Cue lots of dementia-related news stories, events, and social media activity. Amongst the flurry, this tweet caught my eye:

Sadly the world region statistics are from 2015, so you might argue not entirely relevant now, but the predicted prevalence of 131.5million people living with dementia by 2050 should make all of us stand up and take notice. If dementia hasn't come into the life of someone you know yet, chances are it probably will in the future.

Anyone who's followed my work will know that it's inspired by my dad's 19 years with vascular dementia, and dementia has gone on to touch my wider family again this year. Even in the last week, one of my closest friends has been unnerved by incidents of blanket forgetfulness - her own mother had dementia at the same time as my dad, so she knows only too well what having dementia in your family means.

Since I don't believe my nearest and dearest are being particularly indiscriminately struck by dementia, I've come to the following conclusions: either the rates of dementia are increasing (as we live longer with more multiple long-term health conditions), or we are getting much better at spotting (and diagnosing) the different types of dementia (or maybe the answer is both). Depending on what you believe, you'll probably find data to match your viewpoint.

Even within my own lifetime, as I reflect on my dad's 10 years without a diagnosis, we attributed his developing symptoms to eccentricity, retirement-related boredom and 'normal' ageing. In time, of course, we learnt the truth, and in 2017 it's unlikely many people would go 10 years without a diagnosis, at least in countries with more sophisticated health services who've been exposed to increasing amounts of dementia awareness.

Should we be alarmed? As someone who's already had a parent with dementia, I am always mindful of the future. Current risk-reduction advice (that includes healthy eating, physical activity, social connectivity, not smoking and only drinking within recommended guidelines) is all achievable for me (although I probably need to do better on the physical activity part, notwithstanding my running around after a toddler!), but I also firmly believe that we need much more research to improve our understanding of prevention.

As scientists work to augment our knowledge, I'm looking for positives those of us whose lives are, have been, or will be touched by dementia can take from World Alzheimer's Month in its 6th year of awareness-raising. I've always been a bit skeptical about awareness for awareness-sake, as lots of bandwagon jumping by anyone and everyone with a vague (and sometimes indistinguishable) interest in dementia can lead at best to misinformation and at worst, profiteering.

Look beyond all the bluster, however, and you find something incredibly heartwarming. During my dad's 19 years with dementia we often felt very alone, and had it not been for the community atmosphere and friendships we made during dad's 9 years in care homes I would be looking back now on possibly the loneliest time anyone could have in their life. One of the big pluses, as awareness-raising campaigns have gained traction and communication channels have opened up, is the way in which people who are affected by dementia have come together - I've made so many connections through social media and attending events, with some people I've met very much firm friends now.

So for me, the message from this World Alzheimer's Month isn't so much 'Remember Me' (hugely supportive of that though I am) as 'You are not alone'. Millions of people around the world are living their own experience of dementia, and whilst there is a huge sadness in that fact, there is also a camaraderie and togetherness that is inspirational, epitomised by the peer support networks for people living with dementia (including Dementia Alliance International) and their carers/families. These support structures don't reach every corner of the globe yet, but therein lies a challenge for all of us who are experiencing, or have experienced dementia to reach out and support others in positions similar to our own.

As my parents often said: "A problem shared is a problem halved."

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