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Saturday, 15 September 2012

So how much do you know about dementia?

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 dementia journey.

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 They may have some outdated ideas about senility, some ‘facts’ they believe that are quickly proven to be fiction, or some very dismissive ideas about how someone with dementia is not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...

Beth x







You can follow me on Twitter: @bethyb1886

5 comments:

  1. hi there
    well I got to write a essay on this topic.. so what do u prefer i should include

    ReplyDelete
    Replies
    1. Hi Shawn. I'm sorry, but all the content on my blog is exclusive to D4Dementia and not for reproduction. Please do not copy anything from this blog onto an essay. The blog may give you some general pointers about what is important to a family with a loved one who has dementia, and about dementia care in general. However, probably the best way to research your essay would be to talk to people in person. This is the way in which I research as a journalist and I would recommend it. There are some extremely inspiring people living with dementia, and their carers, who could provide you with some invaluable insight I'm sure.

      Good luck with your studies.
      Best wishes, Beth

      Delete
  2. I learned that Dementia is a disease and not a normal part of aging. I always like to read a quality content having accurate information regarding the subject and the same thing I found in this post. Excellent post. Thanks for sharing.

    ReplyDelete
  3. Hi,
    I have just read your article on dementia and think it is great. I run elderly massage workshops for those working with the elderly, carers, etc helping to promote emotional and physical well being. It has proven to be very effective particularly for those with dementia.
    If your readers would like to find out more about it, please see:
    www.atoneholistictherapy.co.uk/elderly-massage
    Thanks!!
    Lubna Latif
    M.D

    ReplyDelete
  4. This article is very helpful information about Alzheimer's and related dementia, and resources for people with Alzheimer's as well as their caregivers and loved ones.

    Dementia Clinic

    ReplyDelete