It seems very appropriate that today, on World Alzheimer’s
Day and Dementia Awareness Day (DAD), I’m doing a Memory Walk for
Alzheimer’s Society, hoping that memories of my dad will give me lots of inspiration
and strength for the 10km. Sometimes the symmetry of life is simple and yet so
very clever.
The walk will have a two-fold benefit in A) getting me a bit
fitter (exercise being good to prevent dementia and a host of other diseases),
and B) raising money that I hope will go into funding vitally needed local
services to support people to live well with dementia in their communities. It
will, of course, also help to raise awareness of dementia, but for me that is
where Dementia Awareness Day really comes into its own.
The blog I wrote for last year’s Dementia Awareness Day – ‘So how much do you know about dementia’ – remains to date one of the most popular blogs I’ve
ever written. It explodes myths, busts stigma and re-enforces the messages that
are most likely to help people to live well with dementia, and indeed create more
dementia friendly communities for them to live in.
All of the work I do is about using my personal experiences
to inform and educate, support and empower. Looking over my blog, I honestly
wish I’d had this resource when my dad was first diagnosed (and indeed before
that point), so I hope it helps to fill that gap for families who are living
with dementia today.
Being an ‘Expert by Experience’ is an honour. However hard
my dad’s dementia was at times, it was a privilege to be entrusted with caring
and loving him when he was at his most vulnerable. To be that close to someone
who had given me so much (life no less!) is special in a way that words really
cannot accurately do justice to. You really had to have been there.
If there is one thing I wish I could give every person, it’s
the uniquely special nature of those moments without the pain that dementia
causes. I wouldn’t wish dementia on anyone, but I would wish for everyone to be
able to learn the life-lessons that I did. If I could bottle that, I’m sure the
world would be a better place.
In many ways I’m an idealist, a person who sees good before
bad, hope before despair, and who tries to make the best of every situation. I
care so passionately about looking after humanity, and making the lives of our
most vulnerable people the best that they can possibly be. I want to inspire
everyone to love our older generations, and to make living with dementia – at
any age – about living and not just dying.
Sometimes I want to reach for the stars, then I
remember that I’m only 4’6”! But days like today are a reminder that we can always
push ourselves harder (my 10km), that raising awareness of dementia with just
one more person is an achievable aim for everyone (DAD), and that the love
of those who are such a focal point in our lives never dies. Somewhere up in
the stars my dad’s watching, and with his help who knows what is possible.
Until next time...
Awareness is something that is talked about extensively in healthcare. In fact it is fair to say that those of us working in this field are pretty much obsessed by it. Days or weeks designed to highlight particular conditions are important for those wanting to get their message across, but for me every day is an awareness day, offering an opportunity to educate someone who doesn't know about dementia, inform professionals who work within dementia treatment, care or policy making, and most importantly of all, help and support those who are going through their own experiences of dementia.
By far the most challenging aspect of my work comes from getting the message about dementia across to people who do not have any experience, understanding or concept of dementia. They may have some outdated ideas about 'senility', some ‘facts’ they believe that are quickly proven to be fiction, or some very dismissive ideas about how someone with dementia is not worth bothering with, but nothing that represents real life for people living with dementia or their loved ones.
For some people dementia, or as many refer to it by its most common form Alzheimer’s, is actually something to joke about. A quick search on twitter under #alzheimers will soon uncover many people, especially young people, who use this hashtag on tweets about things that they have forgotten, or done that they should not have, to indicate humour. This perhaps sums up many of the wider perceptions that are still out there about dementia, so let me bust a few myths:
- Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain).
- There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
- Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
- People with dementia are still people, not a disease.
- Dementia is not contagious.
- Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home not in communal establishments).
- People with dementia can make a positive contribution to society if supported to do so.
- You can live well, or live as well as possible, with dementia.
What is important in the long-term care and support of people with dementia is primarily personalisation, compassion and dedication. Personalisation because everyone is an individual and should always be recognised as such in every aspect of their life and care. Compassion because care without it is not care at all, and dedication because dementia is long-term, progressive and terminal, requiring specialised understanding, continuity and commitment to excellence in caring for someone with it.
In the case of myself and my family, we never saw my father as a victim, or considered ourselves to be such. Dementia, whilst cruel in the way it strips back a person’s abilities, can never take their spirit or soul, and with the right therapies glimpses of this are possible until the very end of their life. I have written previously about how we never sought sympathy; what we have always wanted is understanding, acceptance and a will within society to confront dementia and defeat it, and I believe this is true for many people in the same position.
What does dementia teach you?
- To appreciate the smallest things in life, since they become extremely precious (a simple hello from my dad in his final few months brought a massive smile to my face).
- To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them).
- To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago).
- Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).
This World Alzheimer's Month, play your part in raising awareness, familiarise yourself with what I've said above, and if your life has never been touched by dementia to date but is in the future, remember the guiding principles in this blog post. Guidance never stands still, it grows as we learn and develop ideas, but the fundamental need for care, dignity, respect, and to be valued and loved never change.
Until next time...
