Kay Bransford, a long time virtual friend of mine wrote on her blog Dealing with dementia, in a post titled “Letting us in”; “I learned that once my mom was having cognitive issues, I couldn’t expect her to change. I had to change. We (my siblings and I) made life choices for her when she no longer could and she adapted, but she still had a feisty side. It wasn’t until the last year of her life when I saw her soften. I remember recognizing the sea change in our relationship when she gratefully accepted help, and thanked me for it. Should I end up with a similar fate, I’m not sure I will behave any differently. Will you? Wondered.”

Kay and I started a blog conversation, that was over almost before it started, but on our blog The Dementia Dialogue where there are still some interesting posts, of which I was reminded when I attended a seminar last week as someone had quoted me from that site. The online world, it seems, never goes away, as I’d almost forgotten about it. The final words of Kay’s blog today, as quoted above, took me back to wondering who actually has the challenging behaviours, and why dementia [we] is blamed for the changes, instead of staff and families being educated in ways that better support our disAbilities, and implement changes to better adapt to dementia.

Kay’s blog is about not expecting people with dementia to change, but rather the the other way around. The terms ‘BPSD‘ and ‘Challenging behaviours’, or as I recently heard, ‘Combative behaviours’, a term I thought had become extinct like the Dinosaurs, are still being used to promote education, and all too often, dementia [we] are blamed for the changes, rather than staff or families learning (being appropriately educated) how to adapt to our changes.

In fact, the BPSD Educational Pack was produced by the International Psychogeriatric Association (IPA) under an educational grant provided by Janssen-Cilag. Yes, a drug company! There are still no disease modifying drug treatments or a cure in sight for dementia, but we [they] can medicate us for behaviours!

Call me a cynic, but I believe this misperception is wrong, and sadly, is still being taught. Last week, I walked out of a seminar, as the whole afternoon was dedicated to teaching people about [our] challenging behaviours, rather than educating on ways to proactively support our disAbilities and better communicate with us.

So perhaps care partners do not have to change as much as they might currently think or are being told to do, as if we are diagnosed earlier in the disease process of most dementias, and offered a human rights based pathway of support that includes proactive disAbility support and rehabilitation, who knows, we may not display any ‘challenging behaviours’ at all… just a thought.

Be brave… help lead the change.