There are more than 50 million people living with dementia and a new diagnosis somewhere in the world every 3.2 seconds (WHO). I am one of them.
Since my own diagnosis 12 years ago, I went from the depths of despair and hopelessness after being diagnosed, primarily caused by the Prescribed Disengagement®, to becoming a story teller, then an advocate, then an activist. Perhaps now I prefer to refer to myself a campaigner for the rights of people with dementia and our families, and for dementia to be managed and supported as a disability.
I’ve been seriously questioning who actually benefits from my campaigning, and that of the many other dementia advocates and activists around the world. So I am asking, has anything improved for others since my own diagnosis, and from all the campaigning done by individuals and organisations?
- Care partners and family members tell me nothing has changed.
- People newly diagnosed with dementia tell me nothing has changed.
- Reports, survey funding and publications consistenly confirm nothing has changed.
I’m happy when others share they find inspiration from me or other advocates, and that ‘hanging out with us gives them strength to live more positively’. That was what the late Dr. Richard Taylor did for me, and I often told Richard he saved my life. Many tell me that DAI is life changing for them, and for that, I will always feel humbled as one of the eight co-founders, and forever grateful.
I wrote in my first book about living with dementia, that advocacy is a postiive non-pharmacolocical intervention for people with dementia.
I’ve always believed people with dementia should be supported to stay engaged in their pre-diagnosis lives for as long as possible. For younger people, we should be supported to remain employed in the same way as any other person is with an acquired disablity. This could even help reduce the persistent discrimination, stigma, loneliness and isolation as well as help others see that people with dementia are still very capable of contributing to their communities and society positively.
Sadly, on flip side of staying engaged in our own lives, it often means many people with dementia are accused of lying about their diagnosis. For me, I prefer to ignore the ‘dementia-doubters‘ and strive to continue to live positively with dementia. Living positively with dementia is not seen as the norm (yet), in part due to 20th Century attitudes, the stigma, the underestimation of capacity, and ignorance. If I was doing well with cancer, no-one would doubt that diagnosis.
It is clear from the numbers of people with dementia who are standing up and speaking out as advocates that there is still a good life to live even after a diagnosis of dementia. We do not have to accept the Prescribed Disengagement® and give up and wait at home to die, and I definitely recommend to everyone who has been diagnosed with dementia to ignore this well- meaning but very poor advice and to re-invest in your own life.
I’m not talking about money, but about living positively for as long as possible. Sure, get your wills and other end-of-life issues sorted out because dementia is a terminal illness and one where you will likely lose legal capacity, but there is no need not to work hard to slow down the deterioration, or to give up living straight after a diagnosis.
As I think and write about the value of advocacy, I have come to believe that there are very few people who really benefit from it.
I can recall how I really felt I was being included and listened to when I first started on this road, and that this and the work of others would mean real, systemic change in policies and practice.
I was wrong.
Advocacy and activism has mostly only improved the lives of those of us who become advocates or activists. It is a really positive thing to do for those who do it though, because it gives us our life back, and it gives us a new sense of hope, and meaning and purpose again; it also gives us a new group of friends, and althogh it is often very frustrating, it is fun.
This is the life that should never have been stripped away from us in the first place!
It has not changed the experience for most other 49,999,900 people living with dementia, or their families, and in reality, advocates are not even remotely representative of the vast majority of people with dementia. Services and support have not improved, or worse, are being cut or reduced. This is not positive if we think of it in terms of the value of advocacy or activism.
COVID has shown that more clearly than every before just how bad it is for the majority of people with dementia and their families, and how their rights continue to be ignored or eroded… This is not progress.
Anyway, following my ramblings here today, I’ve added three screenshots of recent tweets below, about what could be seen as some of the negative sides of advocacy, to help with our thinking on this topic. I do think Lynda Henderson has a point when she says the advocates who are given a voice, are more ‘abled’, and even though it may not have meant to be ableism, it could be seen that way. It’s more likely to do with who’s going to impact fundraising campaigns…
A 92 lady I am close to, does not have a voice, and apart from a ‘photo op’ after a 15 minute awareness session, will never be offered one either.
Having some voices at the table is better than none, isn’t it?Of that, I am not sure.