An article published recently in The Lancet Psychiatry by a so called ‘expert’, ‘Doubts about Dementia Diagnoses’.made it’s way into my inbox and also into various other publications. I chose to ignore it as it was sad that a professional could question our diagnosis simply because we have the ability to speak out at events. However, others chose to respond, and the article, in response by William T HU, ‘No Doubts about Dementia Advocacy’ was spot on.
I have no problem with people questioning the process of diagnosing and yes, mistakes are made and each are entitled to their own opinion, but as Hu said, ‘….but meaningful engagement must extend beyond Persons with Dementia feeling like curios and sideshows’
It’s also important for ‘experts’ to remember that it isn’t just ourselves who are saddened and demoralised by such comments. We always say that when we get a diagnosis, our family and friends also receive the diagnosis. With this in mind my daughter felt the need to respond to this article.
Here’s her blog:
I usually try and avoid reading comments on social media about my mum, as people can be so thoughtless and insensitive it’s hard not to take it personally. So I just don’t read them.
However I recently read an article on doubt around some people’s dementia diagnosis. I am aware that mum (and other people with dementia) can appear more well than they are, simply because they are working so hard at speaking out and trying to change perceptions/culture/research on dementia.
Before mum developed dementia, she was a highly organised person who was renowned for her memory (much to my dismay growing up as a teenager!). She used to go running a few times a week, loved to bake, walking miles and miles in the Lake District, she was on the go non stop. And she was a self confessed workaholic!
On top of the fact that mum has had PET scans and vigorous year long neurological tests, I know she has Alzheimer’s Disease and Vascular Dementia because of the changes I am seeing as her daughter.
When Mum gets invited to speak at a conference, she may appear to some like she’s just arrived, enjoying socialising, talking with ease to hundreds of people and then leaves.
Well let me set those people straight.
She has to go by train as she was advised (and made the decision) to stop driving.
Mum may have booked the train tickets herself, or she may have needed me and my sister to help her book them if her brain was having a foggy day.
She may have had to stay in a hotel the night before to orientate her to the place (which can be stressful in itself – new environment, finding the hotel, working out the shower, not sleeping).
She will have spent time printing maps and pictures of the place she is going so she might recognise it when she gets there.
She will have taken time writing her talk (she always writes a new one for each event to keep current and relevant).
She probably won’t eat due to low appetite and there is so much going on, decision making becomes more difficult. So she sticks to cups of tea!
Socialising is challenging especially if there is more than one person talking.
On an average day, her brain starts to tire early afternoon when she could be having a rest at home, but she can’t as she has to face the journey home (and if you read her blog you’ll know Wendy doesn’t have much luck with trains).
And the next day mum is usually more tired than normal because of the energy it took the day before.
I can’t believe I’ve felt the need to write this but some people seem to think they can diagnose someone with dementia just by looking at them or meeting them briefly. It presents in every person in individual ways and the way they deal with it is also unique. Mum is speaking out not only because it raises awareness but also because she is fuelled by a desire for a future cure and improved care. Doing all that she does also slows the deterioration and keeps the brain working. The reality is mum has embraced a terminal illness in the only way she knows how: overcoming its challenges with passion and positivity.
I am not saying all this for pity, that’s the last thing she would want. But just for a bit of respect and sensitivity when questioning ones serious terminal diagnosis.