The changing of the guard

changing-of-the-guards-959470__340Over the last few months, perhaps years, I’ve noticed an increasingly offended, and even occasionally, an increasingly outraged voice from care partners of people with dementia, objecting to the louder global voice and inclusion of people with dementia. We are quite rightly, adding to the public discourse on dementia.

There has, for a number of years now, been a very slow but determined changing of the guard in the public arena about the experience of living with dementia.

For a long time, it was almost exclusively the clinicians and researchers who wrote or spoke about what it is like living with dementia and what is best for us. Then, the families and care partners started speaking up about our experience, about what it is life for us, what is best for us, and of our suffering. Many have become ‘celebrities’ along the way doing it, receiving pats on the back and various awards for their caring roles, and pity for how hard their job was.

Over 20 years ago, Christine Bryden and the late Peter Ashley, and then the late Dr Richard Taylor and Helga Rohra (and perhaps others I don’t recall or know about) joined the global stage, speaking out about what it is really like living with a diagnosis of dementia and what is best for us. I joined them on that global stage in 2012 in London, although had been speaking up locally since 2009. It is curious to me, that the groups that seem the most upset by this are the care partners; I wonder is because the balance of power is shifting?

This year for the first time in many years at ADI2016 in Budapest (a conference on dementia), there were many people with dementia speaking every day including as keynote speakers, and no care partners speaking. No care partners had submitted abstracts either, so none of them were even speaking in concurrent sessions. On the other hand, many people with dementia had also submitted abstracts, and quite a few had also paid their own way to attend so they could have a voice. I guess as we were told to do, care partners will have to start submitting abstracts and pay their own way occasionally as well.

I agree it was definitely an oversight on the organising committee, but the distressed feelings of not having a voice, has now been felt, and rather publicly expressed by some care partners. But it is definitely not our fault that this happened.

It an unpleasant feeling to be left out, to not have a voice, and it is unfair, but, it is exactly what those of us with dementia have been having to put up with for years. We have been advocating for a more equal inclusion so that is it not ‘about us, without us’ for more than 20 years. It is not a competition, it is a human right for us ALL to have a voice.

The time is now that things are changing, and whilst we get some balance of ALL voices onto the global stages, the imbalance may swing the other way for a while. That may not be the best way for it to happen, but it is usually what happens until society gets to accept the new norm.

31 thoughts on “The changing of the guard

  1. In the weekend I was fortunate to spend an evening with dear old friends ( 38 years of friendship I mean) who came from interstate for a family visit. My friend has been diagnosed with dementia, not sure I think it is Alzheimer’s, and is still very cognizant. He has quietened down a bit and has insight which is good. I found trying to engage him to talk about himself was a little difficult, and I think he has maybe absorbed the stigma from outside. His wife can be very overpowering even when he did not have dementia, but she is trying to learn and has stopped arguing with him which is great. I was sad to hear that he has stopped his favourite pass time , which was going to the darts club and playing in championships. His wife explained that it is because she doesn’t want to have to drive him at night, but he says it is because the place has changed and the people are not the same any more. Has anyone got experience with how she can continue to keep him involved with his mates? Unfortunately, many of their friends have the same thing (they are in their early 70s) or have passed away from cancer. it is a scary time for them but they are still doing well. He has retained his sense of humour and is still very affectionate, but I did observe that she was less inclined. This must be a sensitive issue for partners who “feel” they are “losing” their other half a bit. Do you think they just need more education on how to interact successfully at this stage of the disease? I would very much appreciate your input Kate, or any followers with experience.
    Thanks
    Adrienne

    • The stigma from others, and the being talked over and for, from others, especially those close to us is the most disempowering . It is not saving us from embarrassment (perhaps them), but it is extremely disabling. Take care… Kate

  2. I sent an abstract Kate; I heard nothing until a couple of weeks before the event when they told me I had a “poster,” but that I hadn’t yet registered. By then it was too late for me and I didn’t know what a “poster” was, and plus I couldn’t really afford the trip having given up my life and business to return to Canada in 2011 to live with my care partner who lives with dementia and having had no way to earn a living since then.

    I would also say that the imbalance on world stages isn’t solely an issue for people who live with dementia. I have been advocating for more than a decade to have more women on conference stages worldwide, so far with little change. Systems like the status quo, and change takes a frustratingly long time to happen in my experience.

    • Oh yes, it is definitely a whole other issue that the LACK of equal representation in society everywhere, of women is a BIG ONE. Politics, Boards, Executive positions, and the list goes on and on and on… a whole other topic!

  3. A strange and sad situation – rather prophetic, too. Thanks so much for sharing it with us who could not attend. Your even-handed way of illuminating both primary “voices” of this situation will be a great help in achieving a better balance in this special life journey of many people. Best wishes as always, Mary

  4. Very well said – I have been care partner for Jenny for the past 13 years, when she was diagnosed with profound dementia. I saw my role as care partner to be the person who was Jenny’s advocate and to help facilitate her developing strategies for herself which gave her as much self-esteem and independence as possible, to life as full life as she could. Jenny has accompanied me to meetings and workshops, and been accepted as an ‘equal’ by most – and has often been encouraged by me to express her independence by sitting at a different ‘table’ from me at workshops – so that she would not be seen to be ‘relying’ on me being there to ‘help’ her make a point. This was sometimes difficult, especially when there was someone in the group with her who failed to understand her issues – and made a comment that lowered her self-esteem. But we are all on a continuing, and steep, learning curve. I have not yet been able to facilitate Jenny to make a ‘presentation/speech’ as yet – although she has on occasion expressed a will to do so – to help others. We care

    • I love it that you keep trying Trevor, and I also know there are many who need others to advocate for them, and most of us with dementia will ultimately all need that someone. xxx

  5. Raised this yesterday was at a research advisory group . had previously attended conference in Scotland where academics speaking followed by 2 carers but no PWD speaking .Advised more people needed to attend and speak in future. Deep battling look FWD to seeing you in June xx

  6. Well said and a very important topic, Kate, thanks for writing it. I agree that it is important that all voices be heard. The care partners, as advocates, definitely should be listened to, not just on behalf of the person they are speaking up for, but also for themselves. Carers have their own particular needs and there are distinct risks associated with being a dementia care partner than there are with other health conditions. That said, and in agreement with you, their voice (as an advocate for someone else) should not overshadow the voices of the experiences of having dementia. To reiterate what elainesteve2 said, we are ALL partners in this – those living with dementia symptoms, the doctors, researchers, care partners, families, etc. all need to raise their collective voices and contribute.

    • Agree completely Carrie, we should ALL be heard. The challenge is that until recently, no one was willing to listen to people with dementia, and the passive, and blatant stigma and discrimination is still very much alive. Many still do not want to listen to us as that then means giving up their own ‘podium positions’. Once we all work together, it will be so much better for EVERYONE. PWD have been trying to, for more than 20 years without real success, so I suspect it may take a fair bit of shaking up until it levels out.

      • Yes but it seems an obvious one to me. So glad I saw you on the ABC and found your great resource. I have just begun a Bachelor of Dementia Care at the University of Tasmania. This week I have to write an essay on my chosen topic which is ” Why is education about dementia important globally?” . The other choice was the impact on society of certain more prevalent dementias recently. I thought the education topic was a more essential one as without it there can be no further improvement in care and attitudes. If you have any thoughts on this issue I would welcome them as the person in my life with dementia is my mother, and she is well and living a good life, but at 91, has little insight into the condition. Cheers
        Adrienne

      • Good luck with your degree, it is wonderful to hear you are doing it, as the more who get real education about dementia, the quicker things will improve. Regarding your essay, if you look at stigma and discrimination, and then human rights, including our rights to the CRPD, then you probably have lots of reasons why education is key to all of those things improving? Just a thought… oh, and of course, education about respectful language as well, not just the disease and medical side of things, but also the psychosocial issues we face which are usually not addressed. Have fun – and oops, I think I’ve give you about 5 essays to write haha x

      • Thanks heaps Kate, It is something I am passionate about since working in Aged care five years ago. I was fortunate enough to participate in several dementia care arenas during my placement and brief time in the industry. ( I left after getting Breast Caner for the second time on my life) Sadly one of the wards was just awful… in a beautiful facility that was supposed to be the best ( MacKenzie aged care ) but the locked ward was just horrible. Bored people acting out and staff running to a time schedule that was totally inappropriate for quality care of these ‘inmates’ . Run by a little Hitler , it put me off for life! During my placement however, I was fortunate enough to work in a totally different environment. The surrounds were more old fashioned but the garden was lovely and the care was so kind and understanding. It was really a case of entering the reality that existed there and going with it, with very little bossing around. Residents were happy and that was what I liked. Two of the guys there had a beer together at the end of each day and it was so lovely to see them being allowed that dignity and right to live as they would have done on the outside. The images have stayed in my mind ever since that it is not about the bricks and mortar that are important, it is the quality of person centered care

  7. Dear Kate, as you know my journey started last year after the passing of my Dad. Precisely because of the disrespect for PLWD and the type of caregiving you and I abhor. Locally I am a “lone rider” 😜 I only said to my daughter this morning (prior to this post), how amazed and how much respect I hold for PLWD self-advocating. That’s the best and most powerful advocacy! End of story. For those who can’t, individual and systemic advocacy is needed but has always been an “interpretation”. How others provide care partnering mostly amazes me but there are those that make my blood boil 😡 There are many of us (I believe), PL without Dementia who genuinely want to collaborate/advocate for the dementia care model that PLWD seek and have a right to xx

    • I totally agree with you, there are MANY who genuinely want to advocate for the person with dementia – in fact, I say almost everyone who is doing it is working from the right place – to help. sometimes though, the care partner role looks and sounds as if it is from the martyr’s perspective, and is not always helpful. The other things that word against both people with dementia and care partners – is being Prescribed Disengagement® at the time of diagnosis – taking away ALL our joint HOPES for a future, and which tells us to give up, and tells others to take over. Totally unhealthy, and WRONG!

  8. I sometimes don’t get this. Of course you need a voice. And to be heard. You may be the fortunate one. My husband has rare ftd. He has not been able to even decide what he has for lunch. I am his voice. I make decisions for him. He has a good life. But I cannot be excluded .as without me he will be in,a home. Life is very challenging for us both. But there are so many dementias. Don’t exclude me as I carer. We work as a team. X

  9. It so amazes me, this process that so many causes go through. But at least we are now on course with Dementia/ Alzheimer’s. I expect that we will continue to experience growing pains.

    Twelve years ago when Gregory and I found out he had some form of Dementia, probably Alzheimer’s, most people (us included) were careful, if not embarrassed to talk about it with family, friends, business associates, and the public in general. Little was known about the disease. It was a “death sentence” and life was over for those afflicted.

    Slowly we (general we) came to understand the disease and that one could live a good life for many years to come before this insidious disease robbed us of our loved ones and them of their abilities and memories. We learned to compensate, to change as the disease changed, to continue to respect and love everyone involved.

    In Gregory’s case, the Dementia put a buffer in place and he was not able to discuss and most possibly wasn’t totally aware of the changes he was going through. In the more advanced stages, I believe that this was in part because I, as his life partner and us as partners in caregiving, were able to create a life in which he could feel respected, safe, needed, useful, and happy free from stress, responsibility, and unreachable expectations (although never lowered expectations until absolutely necessary.)

    I am grateful, as a caregiver, that people with Dementia/ Alzheimer’s are getting a voice to tell us, while they are able, what it is like to be where they are. I cannot, and never have been able to understand how it ever could have been ‘about us, without us.’ As always, thank you Kate for your pioneering work. May your ideas and insight, as well as from others working hard like you, cross the oceans to all parts of the world!

    • If only everyone was like you dear Michael! It is extraordinary the passive stigma still surrounding us. I hear so often care partners speaking over their partner wiht dementia, or saying in front of others, ‘oh, he or she is mute now’ – even when they know they can and do still talk – and even if they can’t, it is humiliating and belittling for the person with dementia who still has ears. It never cases too astound me. There are other who say ‘oh, I’m not like those other carers… I’m different’, but they still have the loudest most overpowering voices. I guess personalities pre and post don’t really change… sure sized hugs always xox

      • The short reply to your reply, and not to be self serving: “When you are a loving caring person before someone you love begins Dementia/ Alzheimer’s you are a loving caring person after. When you are not, your are not!” Regarding fighting the “mother, father, husband, wife, son, daughter, relative, partner” relationship battle, my feeling is we will never win. “Human nature.” The battle must take place at the governmental, professional, medical, and general awareness level and hopefully it will then filter down to the “family caregivers.” That seems to be where you are bravely fighting!

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s