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 this disease. They may have some outdated ideas about senility, some ‘facts’ they believe that are quickly proven to be fiction, or some very dismissive ideas about how someone with dementia is not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 (it is a disease of the brain). There is so much more to it than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person), and it doesn't just happen when people get older (early 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, and you can live well with dementia.
What is important in the long-term care 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 a long-term progressive and terminal disease that requires 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 this disease 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 journey 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).
If I could ask one thing of you, my loyal reader, it would be to spread the word about dementia. Play your own part in raising awareness, familiarise yourself with the work of some of the amazing #dementiachallengers on Twitter that I am privileged to know, 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. Next time you meet someone with dementia remember that and you will be on the right path within their dementia journey.
Until next time...
You can follow me on Twitter: @bethyb1886