In my first volume of poetry, Love, Life, Loss, A Roller-coaster of Poetry, I wrote a poem called disAbled, which also appears on my poetry page of this website. A new friend I met at ADI in London this year living with dementia asked if she could read it out to a group she meets with in her area.
This is what she recently wrote back to me:
“I was speaking at a stakeholders conference in xxxxxx this week and read your poem again and it went down so well I told them about who you were and they took the message on board. … I went to a ‘talking heads’ group where folk living with dementia were meant to be sharing strategies for coping (not carers) I was the only one in the group living by myself and when I was describing my systems (which break down of course now and again and have to be revamped) no one else seemed to be interested in having any they just said oh X does that (spouse /carer), made me sad as I feel it disAbles them.”
The way doctors and service providers dish out what I term “prescribed disengagement” has to be part of the reason people diagnosed with dementia (PWD) give up trying. To be fully engaged in life one day, and then told to give ‘it’ up (your meaningful activities) and live for the time you have left, is bad advice. It sets PWD up to become victims of dementia, and also sets the ball rolling for carers to start taking over, some of whom almost become like martyrs to the cause of caring. The caring is done with unbelievable love and good intentions, and carers are encouraged by doctors and service providers to do it, making it easy to justify their actions. This also unwittingly encourages PWD to give up many of their roles and activities, which in my opinion increases the DISablement of dementia.
I have no idea how we can encourage PWD to even engage in the idea they can take action to enable their own lives, take action by ways of healthy lifestyle, neuroplasticity exercises, and so on. These things do make a difference, they may not cure us, but they do slow down the rate at which dementia progresses for many people. There is a body of research growing to support this now, and yet PWD are not being told by their health professionals to engage in these things. Holistic, positive psychosocial and non pharmacological interventions are a very real part of helping ourselves with any disease, and a few Western doctors are even starting to believe in them.
If you were diagnosed with cancer, I feel sure you would engage in all sorts of healthy interventions, not just the medical options, so why not with dementia. It is curious to me that this particular diagnosis seems to make people only focus on the diagnosis, and rediagnosis, and then the rediagnosis, and rediagnosis, and not on how to overcome the symptoms of the disease in more positive ways. I guess this is a search for new treatment options, but perhaps to the detriment of living a more positive life.
Of course, we all run our own race, which is exactly as it should be.
Yesterday I met with a service provider from Alzheimer’s SA, who is doing amazing things here with art and other therapy, and she is proving beyond doubt that positive meaningful engagement makes a difference. She told me stories of PWD who had not been able to stay focussed for more than a few minutes, and after being involved in the therapy she had set up, who could focus, uninterrupted, for 2 hours. Of course, there is no body of clinical evidence to support this, but she, and the loving carers/partners of these PWD see it happening. To me, it is simply more proof that it is worth engaging PWD to remain involved and active with their pre-dementia lives and I will explore further what she is doing and report on it if she’ll allow me to.
I’ve added my poem below, as a way of reinforcing myself that I am disAbled, but still able to do many worthwhile things, regardless of the fact I have to change the way I do them, now almost every week.
I am able
To perform activities
Willing to operate
At my own level
I may be challenged
But I am capable
I can function
And I am only restricted
By those around me
Who choose to dis me
Yes I am able
Capable and talented
Equipped to live
A worthwhile life