My heart aches everytime I hear of anyone being diagnosed with dementia, doesn't matter if its a celeb, or one of my friends parents. You know that whoever it is, they and their family are in for an horrifc and heartbreaking ride. I truely wouldn't wish this illness on my worst enemy.
As regards Scott speaking out - I'm glad he has, because hopefully, if nothing else, it may result in more donations to fund research. But in terms of it 'raising awareness', unless he has the bottle to continue to speak out and to do so honestly, without glossing over what he is facing now and will face in the future, then it will make no difference to the general populations understanding of this illness. I've read dozens of books written by people who's lives have been touched by dementia, including books by celebs' families - 'My Bonnie', and 'Where memories go', written by John Suchet about his wife, and by Sally Magnusson about her Mum, for example - sad reads, but only John Suchets' book even came slightly close to touching on the reality, on the nitty gritty issues that, if only were spoken openly about, would bring a level of understanding that is completely lacking at the moment. Books and accounts written by 'ordinary people' who have supported a loved one through this illness tend to be more honest - but they also tend not to be well promoted or well known.
I understand that there is concern about 'frightening' people, especially newly diagnosed pwd's and their families. But, sugar coating the illness is so totally ineffective that a change in approach is desperately needed. You only have to read on here the comments from the number of carer's who are really (and rightly) offended by the 'living well with dementia' slogan, which totally mis-represents the reality for so many of us, to know that the current approach isn't helping. How many posts do we see on TP from people who have just recently stumbled across it, asking for advice because 'My mum thinks there are two of us', or because their husband or wife has started to have periods of severe agitation and they don't know why (they have never heard of sundowning) or because they had no idea that they would have to cope with incontinence or paranoia, or because they don't understand how it is that their loved one can suddenly behave almost normally when it (seems) to suit them ? All these are fairly common issues that carers face - but also issues that most know nothing about untill they actually start happening. I know that when Mil was diagnosed, at no point did anyone ever tell us about the possibility of having to deal with any of these issues. And that seems to be the case for a lot of people that I read posts from on TP. How can that be right? Lack of knowledge (especially before finding TP) led to me making the wrong decisions or responding in the wrong way to situations I faced. So not having the truth readily available led to life being harder both for my poor Mil - and me.
Cancer is a foul, horrible and terrifying illness to deal with too. But that hasn't meant that the general population are unaware of the effects of the illness, of the effects of treatment like chemotherapy, or of the impact that caring for someone with cancer has on families. We all know, even if we haven't had to deal with cancer 'close up and personal', a good bit about all the issues surrounding it's impact and what suffering with cancer can entail. We all know about the hair loss and the sickness and hospice care and the isolation. And I honestly believe its because the facts surrounding cancer are not sugar coated to the huge extent that the facts surrounding dementia are, that because the general public have access to masses of information about the illness, that we have a situation where resources to research cancer and provide support for those affected by it, are so much better than the resources and funding available for dementia. If the truth was readily available, if the general public really understood the impact, then the pressure on those that hold the purse strings for research, treatment and support would increase - and maybe then we could start to see the progress in dementia care and treatment, that we (thankfully) see with cancer.
Oh - I wish you would! I wish that not only would you write it, but that somehow, someone who has the means, would ensure that it was well publicised and promoted. It will scare people - but I believe that ignorance, when you are faced with this illness, can be and often is, far scarier.