Levelling the Playing Field

Levelling the playing field. Time to address both sides of the caregiving relationship together.

In my last blog I focussed on how information on ‘difficulties and behaviours’ in dementia is frequently presented as a warning to carers without similar ‘warnings’ given to people with dementia. The stress and burden model still prevails and with it the uncomfortable implication of blame on the person with dementia. This time I want to look at the extent to which many workers collude to perpetuate the stress and burden narrative particularly within the domestic caregiving relationship.

Far too often I have witnessed a tug-of-war within households with both parties pulling at the same problem in opposite directions. How draining for all concerned! Yet services that respond to this dynamic in any meaningful way are few and far between. Below is a list of phrases that will surely sound familiar to any reader. They are all the real words of carers spoken to me within the last year, they are also words I have heard over many years.

  1. He doesn’t give me any space
  2. I’m having to lead a double life here
  3. He’s not the person he was. He’s not the man I married.
  4. I try to guide and correct him. I want to make him think and do things for himself
  5. ‘Go and put a sweater on’, I said and he came back with his dressing gown on
  6. She’s the cause of all the problems between us. She’s got to accept she has dementia
  7. I’ve had to tell a couple of shop workers about her dementia when she wasn’t looking in case she annoyed them
  8. She asks a question but doesn’t listen to the answer and asks again
  9. Sometimes she flies off the handle.

They are real, they are valid, and often emotionally charged. Anyone would  naturally feel sympathy on hearing these words. They might even offer to put the kettle on. But if you are a worker, how do you normally respond to carers expressing these points? Unfortunately I’ve seen and heard of too much of the tea and sympathy approach. That’s fine and to be expected from friends and family of the carer but if front line dementia support  professionals in health, social or  third sector care stop there, then this is where collusion begins.

It is of course right and just to acknowledge those frustrations and also fine to put the kettle on, but we must dare to broach what is often unheard – the voice of the other party in this care giving/receiving relationship. If not, we only collude with perpetuating the stress and burden narrative, and the consequent suffering of the carer. (I know, I have used the word ‘suffering’ in an article about dementia and I have done so deliberately).

So how do we respond? What specifically might we say? Bland platitudes and denial of the feelings of the carer do not work and would obviously antagonise. Yet we can still challenge with the message I often use, drawn from the work of John Zeisel. When talking about how informal carers get caught up in a spiral of negativity, he used the phrase, “Pain is inevitable, but suffering is an option”. This acknowledges the pain of loss, fatigue, grief but still invites the carer to reflect upon the danger of wallowing in that misfortune and the subsequent inability to see beyond the role of suffering martyrdom that sometimes does occur. That situation is no good for anyone.  It is so important for community-based services to support both parties to move away from that draining tug of war, and to unite them’ against the dementia. This was a key element of the recent Getting Along© programme I piloted in York. https://www.youtube.com/watch?v=gEe9NbCq2Pg&feature=youtu.be&app=desktop

We learnt to blame the dementia whereas before we were blaming each other’  Pat –wife and carer.

During the Getting Along© programme I gave both parties together the chance to share their feelings and frustrations as to date we have predominantly heard only one side of the caregiving relationship. To each of the 9 quotes above I elicited a response from the partner. Have a look at these.


The response from the partner with dementia

  1. He doesn’t give me any space  – I’m quite happy to move away and let her cool off
  2. I’m having to lead a double life here – And that’s what annoys me most, you hovering to cover my every mistake, when I don’t always make one.
  3. He’s not the person he was. He’s not the man I married. – I have always loved you, even if I don’t remember sometimes. Who is the same person as decades ago?
  4. I try to guide and correct him. I want to make him think and do things for himself  – She natters, I feel like the village idiot
  5. ‘Go and put a sweater on’, I said and he came back with his dressing gown on’ – I go into my room to change as she asked. I know I had to change so I thought it was a good effort. Do I get any credit for that?
  6. She’s the cause of all the problems between us. She’s got to accept she has dementia. Me the cause? We should all be allowed to forget things
  7. I’ve had to tell a couple of shop workers about her dementia when she wasn’t looking in case she annoyed them. – Are you telling people about me? I didn’t know that. I don’t like the idea of that. You should ask me first. I don’t care if you thought it best.
  8. She asks a questions but doesn’t listen to the answer and asks  again. – When I ask him something he always says the same thing. It’s either ‘I’ve told you already’ or ‘you don’t listen’ – so I never actually get an answer’
  9. Sometimes she flies off the handle. – I have to be like that. Otherwise I’m nobody.

 As above, the responses are valid, loaded with feeling and wholly understandable. The only difference is that these responses are phrases you may not have heard as frequently as the first nine. Why? Because hitherto we’ve stopped at tea and sympathy.

Gradually and necessarily the voice of people with dementia is being heard much more widely through the Dementia Engagement and Empowerment Programme, at local, national and international levels. It is time we put an end to the tea and sympathy approach to ensure parity of representation within the family home for the benefit of all concerned. For too long we have focussed on single individuals and their unique set of problems, whilst failing to take into account their interdependence. If we adopted current dementia care models to children’s services, there would be a national outcry. ‘Send your child away for a couple of weeks and have a break’ would not be accepted as a solution. Where is the family therapy? Where are the meetings to work on strategies? Where are the get-togethers to allow everybody to say their piece and express their feelings?

If we wouldn’t accept that for children’s services why do we put up with it in older people’s (what’s old?)  services? Perhaps we are moving away from ageism but dementiaism remains all too rife.

I’ll be presenting the findings of the Getting Along programme at this years UK Dementia Congress.


4 thoughts on “Levelling the Playing Field

  1. This is a clear and impartial insight into many of the problems encountered in by those caring for loved ones with dementia and I agree that support for carers needs to be balanced with advocacy for the person with dementia. The thing that strikes a cord with me is the issue of alerting strangers to the diagnosis so that they don’t think ‘badly’ of mum. I know that I feel uncomfortable whispering over her head “Sorry! She’s got DEMENTIA!!” but I also feel uncomfortable when I think that somebody is incorrectly perceiving her behaviour as rude or offensive and I think the person who mum ‘used to be’ would have hated that side of it. I don’t know how to resolve this particular issue, perhaps increased public awareness of the diagnosis generally is helpful? I also try and mention the word ‘dementia’ a lot in family conversation in the hope that it becomes a bit more familiar and has less stigma attached to it so we can then chat about it when we are out and about.

    • Thanks for your open and honest comments. It is a real difficulty. With the couple I worked with the partner was able to express her concern as quoted and they agreed to establish a protocol in future whereby hubby would ask if it was alright before sharing the information. I appreciate this is not possible in many cases and, from your post I gather that must be the case for you. You are right in workingto end the stigma of dementia. It’s this sort of thing that the move for dementia friendly communities is all about. Promoting an understanding of people who may be different. The definition of dementia-friendly communities will be as individual as the number of people with it. Clearly for you and mum, such a community is one where you don’t feel the need to apologise. We may be a long way off but you are absolutely right in trying to break the stigma and promote a much more normalised approach. With very best wishes to you.

  2. Spot on! We were both “de-enabled” by professionals post Dx. Talk of respite & residential care put the fear of god into us & soon became a banned word in our house. Fear of abandonment from Veda, anger at being “placated” by professionals from me. NO support to either of us re symptom management of a rare Dx – instead got told that “all dementias eventually go down the same path”. Paternalistic crap. Ignorance of the science. Power-wielding by omission.

    I found DAI & subscribed. Veda joined. Now we have a voice & #KiamaDFC is making changes, challenging assumptions.

    • thanks, Lynda.
      I remain baffled how so many services try to maintain this veneer of knowing best in the face of first hand evidence of the experience of those they are meant to support. It’s brilliant that you and so many others are finding a voice and beginning to challenge the status quo. more power to you!

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