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…….