In the last year or so, many people with and without dementia have started to document the history of what they perceive as dementia advocacy and/or activism. It almost feels like it is being done, as if to justify that the last more than two decades of advocacy have been worth it, and so I am very keen to more deeply understand what the terms activism and activist actually mean.
You may be wondering why?
Well, I am too, and it is probably because I have used both of these terms to describe what I have been doing the last 12 years!
Many of us call, or have called ourselves advocates, and inceasingly people with dementia are calling themselves activists. I was one of these people, but I am reasonably (or even unreasonably… ) unsure why those terms are suitable now, and do wonder, to what end has this hard – and unpaid – work done to improve the lives of people with dementia or our families and care partners.
Don’t get me wrong.
It has helped me personally, and has given me a renewed purpose and a sense of meaning.
But, if my pre-diagnosis life had not been ripped away from me, soon after diagnosis by service providers and others around me, I would not have lost my purpose and meaning in life in the first place!
If we were not Prescribed Disengagement®, and instead were offered proactive support such as rehabilitation, as well as disability support to live with and not only die from dementia, many more people with dementia would be living meaningful lives, not only those who become advocates.
This approach would also help us to maintain independence for as long as possible, and ensure a migh higher quality of life for longer.
What is the point of calling myself an advocate or activist, if little has changed, and especially if newer advocates still need to ‘advocate’ for almost EXACTLY the same things that Christine Bryden and so many others were advocating for, 25 years ago? Certainly there is little that is really tangible that has has changed in the 12 years I have been at it.
I’m almost starting to feel like it is unfair to ask others to follow, as in many ways, believe we have gone along the wrong fork in the road.
In the year 2000, Christine Bryden, Carole Mulliken, and many other people diagnosed with dementia (I cannot find everyone’s names) set up an online group called the Dementia Advocacy and Support Network International (DASNI). I cannot find their website now, and believe it no longer exists, but it was the first group of ‘advocates’ that I know of.
The Scottish Dementia Working Group (SDWG) which was launched two years after DASNI in 2002, and is funded by the Alzheimer’s Society in Scotland; it was founded by James McKillop, and was the first Dementia Working Group on the World.
Both of these groups were groundbreaking, and have led the way for others.
It does however, feel important to start to measure or quantify what we mean by
1) by advocacy or activism, and
2) how we measure the success of advocacy or activism.
So let’s begin here by reviewing the definitions and acronyms for each word (source: Dictionary.com)
noun the doctrine or practice of vigorous action or involvement as a means of achieving political or other goals, sometimes by demonstrations, protests, etc.
synonyms for activism: advocacy, involvement, militancy, logrolling, striking, boycotting, championing, effecting change, influence peddling, moving and shaking, picketing
noun: activist; plural noun: activists
- a person who campaigns to bring about political or social change.”police arrested three activists”
- campaigning to bring about political or social change.”activist groups around the world are organizing solidarity events”
Synonyms for activist: power broker, influence peddler, mover and shaker, pressure group, person of influence.
The definition of the term activist implies that the activists of any given cause, need solidarity. In terms of dementia, there is little solidarity amongst activists, outside of each of the working groups. If we harnessed the power of each one, collaborated and worked together, and turned it into a global movement, we might actually create tangible and systemic change.
If all we are talking about as success, is changing a few peoples’ attitudes, and we are then ‘hopeful’ or worse, we expect that this will actually lead to change, such as positively impacting research or clinical practice, I suspect we are deluded. We need so much more than that, and we desperately need policy change.
And we need it NOW.
A few million Dementia Friends has made little difference to improving the experience of the vast majority of poeple with dementia or their families. Warehousing and further segregation of people in Dementia Villages has not made a difference either. These types of campaigns (some will claim they are positive changes), are expensive bandaids, and are unlikely to fix what is wrong.
They even potentially make it worse, and likely keep the loneliness, stigma and discrimination alive.
If we keep getting almost the same (or no) results as those before us, we probably need to consider if we are all doing something wrong…