The support and of empowering of new leaders from within the global group of people living with a dementia has been one of my biggest goals or aims. It can, at times, also be one of my greatest frustrations, as it is not easy, and the system does not support us to live after diagnosis, but instead to go home and five up, and prepare for death.
It is difficult for engage and re-empower those with dementia who have been Prescribed Disengagement ® as when our hope of any sense of a future is taken away, many often cannot be bothered getting into the advocacy arena, instead preferring to ‘give up’, especially as that is what the ‘experts’ tell them to do.
Why would anyone bother to ‘fight for their life’ when we are all sent home with NO HOPE?
The annoying symptoms of dementia get in the way of progress for some of us, and for some more so than for others; they hinder our ability to remember to do things, to remember how to do things, and to understand what it is we need to do, or are doing. Confusing, frustrating, and often leads us to apathy and giving up.
Sadly, very few of us are offered active disAbility support to better manage the symptoms of dementia, and to remain independent. Instead, from the day of diagnosis, we are told to become reliant on the ‘system’.
The ‘system’ also does not support us actively to manage the disabilities caused by the symptoms of a dementia with rehabilitation, as it does for all others with chronic illness and disabilities. We don’t get rehabilitation in our post diagnostic pathways (yet!!), simply because of the perceived lack of ‘evidence’. Whatever happened to common sense?!
Others take the terminal illness aspect of dementia seriously (as we all should), and simply write and then hit their own bucket lists. That’s ok too, but we really do need more people with dementia to take the baton and the reigns.
That is of course, if they are even told they have dementia, as research tells us that many medical doctors prefer not to disclose the diagnosis. This is not only unacceptable, it is unethical not to tell someone they have a terminal illness.
So, finding people with dementia how want to become leaders, is very much thwarted by the pre and post diagnosis experiences, which encourages us to give up and to go home and get ready to die.
There is another way, and many of us are living it, so what I say to everyone I meet for the first time with a dementia, is join DAI, join one of our support groups, get to know others who are living with dementia (as opposed to dying from it) and see what you think… And I’m not sure we can create leaders, but rather, we people with dementia and others, speaking up publicly must make space for them, as well as get out of their way. The leading dementia advocates need to encourage, and make room for new people to be on the podiums as key-note speakers at conferences, rather than hog the show.
I believe there are many more people with dementia who can (and will) be leaders out there; we just have to help them believe it is possible, and give people with dementia back their HOPE.