Are we representative of people with dementia?

A fellow person with dementia recently spoke of having a professional question whether we, with young onset, are representative of the majority of people with dementia. Can we truly represent the majority of people with dementia…..?

That a professional should question our value into providing an insight, through our experience, into the disease and its continual changes in our lives seems both naïve and lacking judgement. Not to appreciate our immense value, especially into providing insight for professionals into why people may react and behave in certain ways is very sad to hear..

Yes, we provide a unique perspective and it is our own personal perspective, but surely professionals in all specialties can see the value of taking note of our views? I’m not saying it’s the thoughts of everyone, but surely some unique insight is better than none? After all we know how where not assuming people with dementia had a view led us in the past…..We allow a voice to be heard that was once ignored.

Where we differ from those in the later stages is that we can still articulate our thoughts.. Many people experience the same symptoms but don’t want to or are unable to analyse the reason why. We’re able, through our own experience to demonstrate in words, how we’re feeling, how we cope, the changes we’re experiencing, the strategies we use, and analyse the effect dementia is having on our world. This creates a ‘real time’ insight into the early stages of dementia which Are continually developing and changing.

Those in the later stages can still be consulted but need more subtle ways of engaging.

I hope I’ll still be consulted for as long as I show willing, no matter how far the disease has progressed – if not, then it proves people havn’t been listening to our voice in the first place…….

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “Are we representative of people with dementia?

  1. Wendy, I’m so sorry to hear this. I can only imagine that the person who asked it didn’t have much experience of working directly with people living with dementia and therefore understand the value of the luxury of being able to gain the views and insights of people like yourself. You give a unique insight into life with dementia and as you say, can still (beautifully) articulate this to those of us who can only try our hardest to understand. Please don’t get disheartened by it and please, please don’t stop working with us!

    Liked by 1 person

  2. As the Chair of the Board of Trustees of Hope for Home (a charity focused on supporting people living with dementia to stay in their own homes with support) I am appalled to hear this. Stick with it Wendy and all your colleagues, you are doing invaluable work and we give you our heartfelt support. Thelma Harvey

    Liked by 1 person

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