Whose lives is activism improving?

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.

More questioning…

4 thoughts on “Whose lives is activism improving?

  1. My friend Kate Swaffer, living “as well as she can with Dementia” in Adelaide, Australia, and being one of the fiercest advocates for Dementia/ Alzheimer’s Disease whom I know, in a recent post in her blog, talked about her feelings of having failed to make a difference in her advocacy endeavors.

    Click here to read Kate’s post. Opens in a new window.

    I shared the following with her about some of the thinking her post caused in me last night as I tried drifting off (without ease) to sleep.

    • • • • •

    Dearest Kate, responding to: “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.”

    We may not have seen much change in attitude or support of people with Dementia and those who love those with Dementia, but thousands and thousands of people have BENEFITTED from your advocacy!

    Let me share what I will call HALF A DOZEN OF MY (boldfaced and underlined “MY” truths” (as I see them).

    PS After reading your post at bedtime, I spent several hours thinking about what you said, going over this in my mind, and coming up with these 1/2 Dozen Truths.

    • • • • •

    TRUTH ONE: Most people do not think or care about anything unless it directly affects their life or the life of their loved ones (and often the latter is less true!)

    TRUTH TWO: Most people have a difficult if not impossible time dealing with a terminal illness, their own or their loved one. Cancer has a chance of “being beat,” Dementia/ Alzheimer’s DOES NOT. That makes it even more difficult to face.

    TRUTH THREE: When an illness doesn’t show itself physically, ie it is internal as in cancer, or a brain tumor, or depression: the outward expression of that disease is often looked at askance and can be called “faked.” It can go unnoticed and unrecognized by those with the illness and those who love them. Its truth rejected by those affected and by those who love those affected.

    TRUTH FOUR: Societal change moves at such a snail’s pace that it is mostly unnoticeable to anyone who cares to watch. It can go on for generations and even then make little progress even though it is smoldering there in the dark.

    TRUTH FIVE: Sometimes an “explosion” of change occurs and suddenly the change we have been seeking seems to occur overnight (but really it has been fulminating over a long period of time.) Sometimes it seems like that change will never happen because there are so many other important changes that need attention and there seems only to be a finite amount of attention available!

    Truth Number Six is the BIG one I took away from this post of your “Ineffective Dementia/ Alzheimer’s Advocacy”.

    TRUTH SIX: PERHAPS THE MOST IMPORTANT PART OF ADVOCACY is to help those living with Dementia, and those loving those living with Dementia: be better able to understand the disease, deal with it, meet it head-on, avoid Prescribed Disengagement®, and live as high a quality of a life for the time left as possible. This is often accomplished on a one to one basis.

    Whether you are the “advocator” or the “advocatee” the knowledge, understanding, techniques for dealing with, support in making changes as necessary, and unqualified love one person can have for another perhaps that is the best one can do and the best one can expect to do based on my first five truths!

    As Teepa Snow says, “Until there is a cure, there is care!”

    CAVEAT to MY TRUTHS: There are so many people living with Dementia/ Alzheimer’s Disease who do not have close family, a partner, or friends and they are on their own at home, on the streets, or in a care facility.

    The same is true for the elderly and infirm. This part breaks my heart and needs attention.

    This brings the issue to a much higher, societal, global level in which we all need to take care of each other as fellow human beings and this is such a large issue that for sure the only hope is that each one of us does what we can for each other on a one to one to one basis.

    The stranger you help might be you one day!

    Liked by 1 person

    • My dearest friend Michael thank you for your very considered comments. I love you more than I have the words to express. And I really love this particular comment, and hope everyone reads it: The stranger you help might be you one day!

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  2. Thanks Kate, has things changed? Well they have stopped saying you only have 3 to 5 years life after diagnosis. Sensory challenges are accepted as part of dementia. Personally as a supporter for my mum and dad, the knowledge gained from the international internet community and conferences helped put quality in my parents life and they are still at home and engaged post 14 years (Agnes Houston) and 12 years for my dad Alan. With out campaigning I would not have the knowledge that this was possible. Also dementia friendly has helped in the community regarding stigma. The professionals, services are cut the the bone and it is still a fight. Carers are still expected to give up jobs and live in poverty. My 2 pence I would recommend advocating and joining fellow travellers. It may not change the journey but the company is good. Thanks for keeping up your advocating.

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    • Thanks Donna, and I remember our fun times in Budapest, when the table in the pub of people with dementia and our family and friends was definitely the loudest! Your last comment is especially important – I would recommend advocating and joining fellow travellers. It may not change the journey but the company is good . The company is good, and at least advocates have a much better life than the many millons of others with dementia who are isolated, stigmatised, and for many, locked away. xx

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