A response from Alistair Burns on the ‘Living Well’ debate…..

Yesterday I had a response from Alistair Burns. I had to read through my original email to find out why I emailed him and the origin of the thoughts! Ha! It stemmed from the conference I went to in Trowbridge last week and the comment I made in my blog about the need to revisit the language we use.

I questioned whether “Living Well’ was the right phrase now. From listening to so many people with dementia or those closest to them, I realised that this was having a negative effect on their well being. They didn’t feel they were ‘living as well’ as others.

This made me sad to think that we’d come up with a phrase, which seemed right at the time, but which now was having the opposite effect on many and making them feel inadequate. In turn this made me comment on the importance of revisiting language.

Alistair always uses the same slides about ‘Living Well’ and his replacement at the conference used them. During my speech, earlier in the morning, I’d spoken about the language debate, so I was surprised when the GP didn’t even comment on the need to debate the language…..or maybe I wasn’t surprised…….

Here’s a reminder of the blog for those interested:

https://whichmeamitoday.wordpress.com/2018/11/23/enhancing-lives-conference/

My fingers are rambling…….sorry…..

So I must have emailed Alistair, suggesting a need to revisit the slides on ‘Living Well’. I wasn’t expecting a response. I know he’s busy, he wasn’t there, so was surprised when an email popped into my inbox.

My initial reaction was one of disappointment. I felt deflated. Not sure why.

“I was pleased to read your blog. It is a good point about living well and of course, this is not my phrase but as you will remember, was the title of the original dementia strategy and I think the aspiration is still valid”

Well, obviously I don’t remember which was a tad disappointing word to use but one which is casually used by many so I’ll half forgive.

He went on to say:

I guess an immediate reaction is “living as well as you can” risks appearing rather paternalistic and suggests that people should only be expected to live as well as they can within the resources that are available and, perhaps sets the bar too low. “

And this is the bit that I’d like to throw open to others. I don’t agree that it’s paternalistic and I don’t agree that it sets the bar too low. Just my opinion though.

The bar is set as low as it can possible be at the moment, as there are few consistent good post diagnostic services are on offer. To set the bar at the opposite end of the scale is good for a few but for many appears unachievable. But my main point is that it’s also unrealistic.

For me it’s about setting the right expectations. To give the impression that life with dementia is all good is far from realistic. It’s a bummer, no question about it. We must give hope to newly diagnosed but surely we must set realistic expectations as well otherwise people may have an unrealistic view of what may happen?

To ‘live well’ in my little opinion, implies a good life in all respects ….I have many good bits in my life but each day is dominated by the restrictions of dementia that I can’t avoid.

‘Living as well as you can’, for me, implies that there are ways, within your personal circumstances, to not let dementia become an obstacle when a solution may be possible.

I’ve got some respect for Alastair and he did say he would discuss with colleagues so we’ll see. Obviously to change a long term strategy is difficult but it could easily be referenced to in new slides. After all chagning some words on a document is nowhere near as difficult as living with dementia.

Well that’s my view anyway. Over to you to agree or disagree but it’s important to have the debate otherwise those in power will continue to use words for the wrong reason.


So it’s important to reconsider their meaning every now and then…

as I’m sure I’ve said before, the psychological effect of words should never be underestimated…..

I wish people with such influence could see the value of engaging on Twitter for a debate as Alistair could learn so much about opinions from here, albeit just from those on social media, which I respect is only a small percentage, but still an important percentage and a valuable resource.

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

27 thoughts on “A response from Alistair Burns on the ‘Living Well’ debate…..

  1. You’re right, Wendy. ‘Living well’ doesn’t really hit the right note, either for the person living with dementia or the carers. Inevitably, we don’t live as well as we might have before dementia. And ‘living as well as we can’ isn’t exactly inspiring either. But how about ‘living with purpose’? That’s what you’re doing, and what I’m trying to achieve with our Bine project too. Staying involved with the community, somehow making a difference, recognising that dementia has made a difference, for sure, but not accepting that a diagnosis is a sign-off on life.

    Liked by 2 people

    1. Living with purpose. That’s perfect!

      I have severe post traumatic stress disorder, PTSD. Thanks to a lot of therapy, I was doing much better. But lately, I haven’t been doing well at all. Part of the reason is the time of year, because the Christmas season was when my worst trauma happened. And part of the reason is because I am scheduled for surgery next week, to remove two cancerous growths. I am dreading it, because this is now the third time in my life that I have had surgery for cancer — three different types of cancer. I am also dreading it, because I have had terrible reactions to anesthesia in the past.

      So, my nerves are stressed. Yesterday was a particularly stressful day, and I did not handle it well at all. A nurse in a doctor’s office was rude to me, and I told her off. When I woke up this morning, and I remembered my ugly, angry behavior that occurred yesterday, I felt so ashamed. I felt like a terrible failure. After all my trauma therapy, I should know better than to sink to the level of a rude person.

      But then I read what you said about living with purpose. And I thought, “I can do that! I can have PTSD, and I can have bad days, and I can be an imperfect human being, and I can sometimes make mistakes, and yet I can still live each day with purpose!”

      Thank you, Alan Miles, for brightening my day!

      Liked by 1 person

      1. And thank you, Linda Lee, for your response. It’s the resilience to adversity of people like Wendy and you that should be a lesson to all of us when we spend our lives whingeing about the injustices of life (and, right now, the bad decisions that others are making!) If we could just recognise that no matter what, we can still make a difference and help others to do so too, then both we and the world would be in a better place.

        Wishing you well for your next big test!

        Liked by 2 people

  2. Wendy, I agreed with your challenge to revisit the ‘possible to live well with’ phrase. I am a Dementia Friends Champion and find this statement difficult to deliver when you know many who are not living well. It does depend on so many things. I applaud you for putting these challenges out there.

    Liked by 3 people

  3. Should I be surprised that someone who should be fully aware of living with dementia states “as you will remember”? Really? How insensitive and unaware can someone be? As for “setting the bar too low” and “living within the resources available”. The resources (not even sure what they are or where you find them) in my opinion fail to provide acceptable support either at the time of diagnosis or on the tortuous experience afterwards. Whilst supporting my mum with Alzheimer’s I have never felt so unsupported or alone in my life. Wendy, you are right to continue to challenge and raise awareness of the language used and how it makes us feel. Thank you so much xx

    Liked by 3 people

  4. He is being unrealistic. It is not setting the bar too low to suggest that we live to the best of our ability, set within our own individual circumstances, but acknowledging the fact that we are not one size fits all, but rather each person’s situation differs. What’s applicable to your life may not be suitable in mine. He needs to educate himself to this realization and understand why PLWD are telling him this xx

    Liked by 2 people

  5. My feeling is “Living With” may be sufficient. I also love the “ Living with Purpose” suggestion made earlier in your, and responses to your blog.
    we all have very different experiences, all valid, and we need to encourage the validity of individual experiences. We all want to develop a better future. Dementia needs to be confronted/ understood. My biggest fear is we get so caught up in “ appropriate language” to describe something we are all experiencing – that we lose the plot!!
    Love what you are doing Wendy. You are an inspiration. xx

    Liked by 3 people

  6. It’s good to revisit language used, as times do change. I too have noticed the occasional negativity to “Living Well” and realise the “well” can create a sense of judgement for some. I have started using the phrase, living pro-actively, which suggests to me that we are doing what we can without any reference to what others can or can’t do.

    Liked by 2 people

  7. Agree that “living as well as you can” sounds a little patronising. I agree with Alan Miles idea of “living with purpose” and this language could apply to all sorts of progressive medical conditions. Wouldn’t it be great if that phraseology and idea became more mainstream? After all, isn’t that what we’re all trying to do?

    Liked by 3 people

  8. What a tricky topic, but well described. Language is so important in shaping our experience of the world, but some of the issues thrown up can be so personal and individual too, making it hard to find a consensus, as we’re all so different, in some ways.

    But there must be some answers out there somewhere. I have no experience in any of this, but could I suggest living well / with purpose etc etc “for today” or something? Something to bring in a little present-centred awareness?

    Liked by 1 person

  9. Living with purpose helps us choose a path with heart. It helps us find joy being with people who can appreciate that purpose. Yesterday I finished reading your book and some November and September blog posts. I can now be a better friend to someone I’ve kept in touch with since college.

    Liked by 2 people

  10. Hi Wendy, I totally agree. The “Living Well” wording absolutely sets the bar far to high. I bought into this phrase and believed in it. I soon felt like a failure, couldn’t understand what I was doing wrong as we were not living well. I agree that people should live as well as they can, it all depends on how dementia affects individuals, it is not a one size fits all diagnosis. People need more education about the progressive nature of the disease so that they can process and prepare with the reality.

    Liked by 1 person

  11. What a good question.

    I think the problem with Living Well is that it can shift the onus and even blame back on to the PWD and their carers. If they have a problem, are miserable or angry with their diagnosis then it is their fault for not ‘living well’. Given the lack of resources this desire to shift responsibility onto the individual is not surprising, but it can be isolating.

    I absolutely agree that we should all be resilient and be educated to be resilient through life. But many people with dementia cannot believe and accept their diagnosis – the denial can be part of the condition. Also family can feel bereaved and worse, with all the emotions that go along with that. Simply telling them to live well is not a solution.

    My haporth

    Like

  12. It seems to me that it is very difficult to find one phrase that will fit all stages of dementia. You have been very fortunate Wendy, to be able to adapt to living with dementia and to set in place so many strategies so that you can continue to live on your own. In my family our dementia experience was different. My father was diagnosed with dementia in his 70s and by the time he was in his mid-80s he was no longer able to “live well”. It is now a phrase that grates for my Mum who was his carer up to his last weeks of life. There was very little (or no) support for them. Living with dementia for Dad was so difficult in the last few years as everything was “new” to him. He’d never seen a toothbrush before. How silly to wear pyjamas to go to bed (he’d never done that before!). Mum would say they were “surviving”, when asked how they were doing. Dad certainly felt he had no purpose once he could no longer drive – so “living with purpose” would be a constant reminder to Mum of how Dad was definitely NOT doing that. The more I dwell on this the more difficult it seems to find one phrase that will work for everyone.

    Liked by 2 people

  13. I have had a long term physical condition which leaves me exhausted at the least little thing. However, there are days when I’m better and I can do some of the things I both need and want to do.
    The expression ‘Living Well’ leaves me feeling a failure, because I don’t live well!
    ‘Living as well as I can’ makes me feel better! If I accomplish something I feel pleased that I’ve done it and I’m living as well as I can, but certainly not living well!

    Liked by 1 person

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