One sided or Lob sided – Dementia care is still way off balance.
From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of diagnosis; and more recently from the excellent eloquent testimonies of the likes of Kate Swaffer and Wendy Mitchell in their daily blogs, I have become increasingly concerned about the overwhelmingly carer-focussed approach in many areas of the field of dementia care.
The predominantly care-for-carer approach has prevailed for many years. The Alzheimer’s Society was founded as a carers’ organisation in 1979 and Carers UK has a strong national voice, incorporating Crossroads care now. This support is of course absolutely necessary, but it must not be at the expense of the voice and support of the person with dementia. I am often told in social situations when talking about what I do that ‘it must be worse for the carer’. I always try to point out that it is difficult for both parties in different ways and they cannot be compared. Although there are many examples of the voice of people with dementia getting a greater profile (the Dementia Engagement and Empowerment Project – DEEP – being an excellent example) they are still in their infancy and there still remains an uneven playing field where predominantly only one side of the care-giving relationship is heard.
Historically, then, the stress and burden model has prevailed and has always made me feel extremely uncomfortable as it can, however unwittingly, imply blame on the person with dementia as the cause of this stress. Kate Swaffer has written widely on the phenomenon she has termed ‘prescribed disengagement’™. She explains how the overwhelming message she received from her doctors (the prescription) was to give up work, go home and withdraw (disengage). She almost did it too like so many other people living with dementia who are constantly fed this line that they are a burden.
My concern is that many dementia services (often well-intentioned) only serve to reinforce the blame-laden stress and burden model. In this article I want to focus on the presentation of what are often referred to as ‘challenging behaviours or behaviours that challenge’ in advice leaflets, the public media, and in many courses either on-line or face to face. They are frequently presented like a warning. Carers are warned about certain ‘behaviours’ to watch out for. These behaviours mentioned are usually framed under the medically camouflaged ‘BPSD’ or Behavioural and Psychological Symptoms of Dementia. Am I the only person who finds this deeply worrying? A classic lead into diagnostic overshadowing – an extremely convenient ‘get out’ from seeking to truly understand what more often than not are understandable reactions to highly stressful situations that many people with dementia face every day. ‘What do you expect? They have dementia.’
So these frequently termed ‘challenging behaviours’ are often presented as a warning to carers but ask yourselves, as I have, to what extent are people with dementia warned about the possible challenging behaviours of those around them? Currently never, and that’s just not fair.
Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.
They might answer the question you’re about to answer
They might talk over you
They might point out your mistakes
They might correct you
They might talk about to others when you’re there.
They might speak too quickly for you
They might interrupt you in full flow
They might dismiss what you say as untrue or false.
They may patronise you.
They may frequently undermine you
They may expose you to failure just to show others they’re right.
They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.
They may control you
They may disempower you.
They may blame you for your dementia
They may tell you off
They may treat you as ‘full blown’ from the moment of diagnosis.
They may hide things from you.
They may contradict you
They may try to rip you off or deceive you
They may ignore you.
They may take away your independence.
They will frequently test you
They may exclude you
They may shout scream or cry
They may humiliate you or make you feel a burden, when offloading about how stressed they are.
If you are a carer reading this and thinking how you’re not like that at all, how unfair and disproportionate all this is to be labelled as some sort of desperately patronising control freak who is perhaps in need of medication to control these behaviours, then welcome to the world of so many people living with dementia who have been portrayed as a burden and as mad, bad and dangerous!
Carer support services are well established thanks to the eloquence of carers over the years in expressing their needs. They are absolutely fine and necessary but they need to be matched by similar opportunities for individuals living with dementia too. Recently I saw a course advertised for carers and people with dementia. One session was to look at ‘behaviours’. I immediately asked myself questions such as:
- How comfortable will people with dementia feel with some of the content?
- How exactly is this session going to be delivered?
- How will information be pitched and what will be the effect upon a person perhaps newly diagnosed?
- How comfortable will people with dementia feel with some of the content?
- How much of the course content will address the questions, concerns and fears of people with dementia?
- Will they take an easy option and invite the people with dementia to leave the room or not attend that particular session?
Providers have a real responsibility to cover BOTH sides of the caregiving relationship. (I’m not sure whether ‘caregiving’ is the right word). They should not shy away from properly including and responding to the needs, and experiences of people living with dementia in their published materials, and information programmes. Initiatives like ‘Dementia Friends’ have to their credit sought to address this to some degree, but decades of the stress and burden model and myth and misconception around behaviours, mean we cannot rest whilst we still hear that question which makes my heart sink – ‘so what happens when they get aggressive’.
elhijodeveronica 
Fully agree with you. It is so frustrating as well when a person has to go into a residential setting and the staff won’t listen to families and carers about the person that has been placed with them for care. Families and carers know the person with dementia better than anyone but some of the homes just won’t listen .
thanks Julie, that’s a whole other area of work – the demonization of families. I’ve blogged on that too check out a few of my earlier posts about ‘Guilty – I don’t think so’
This is so true! There are a lot more support groups for care partners than for those of us with dementia. It is also absolutely true that doctors don’t offer much in the way of tips or ways to learn to live better in spite of the dementia. I am familiar with one group based in the UK that is trying to support both persons with dementia in addition to supporting care partners through sharing information between both sides. It is the “Dementia Knowledge Exchange Global” Facebook group. This group is in its infancy, but they are trying very hard to take an all-inclusive look at dementia. They are targeting a 50% mix of physicians, doctors, academics and other care providers along with 50% individuals with dementia. I wholeheartedly support this approach.
Thanks Paulan, for sharing your views and flagging up the dementia knowledge exchange. I’ll definitely check it out.
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Thank you for sharing this. Totally agree: “”Carer support services are well established thanks to the eloquence of carers over the years in expressing their needs. They are absolutely fine and necessary but they need to be matched by similar opportunities for individuals living with dementia too.””. … and thanks to Shibley Rahman PhD, for pointing out your blog post.
Thanks for your comments. Glad you came across it! Have had a few comments/tweets questioning how well established carers voice is! No doubt there is always room for improvement but the carers movement has had decades head start on the recently emerging voice of people with dementia
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Fascinating stuff. The Mental Capacity Act makes it clear the person with dementia should be ‘in the driving seat’ problem is very few people know anything about the Act
Perhaps it would be fairer to point out that giving and receiving care (support help love) is a relationship based activity and really if the relationship is one of mutual love and understanding there is no need to pit two sides against each other as we are on the same team.
You are absolutely right! The relationship between the person with dementia and their care partner has to be very honest, loving and MUTUAL or it will be a disaster. Many times care partners think that they know best, but this is not the case. There is a strong tendency to minimize what the “patient” (hate the term) thinks because they have dementia. Many of us with dementia are very intelligent people even though we have dementia symptoms.
THanks Paulan, It’s flattering to receive endorsements such as yours.
Damian
Thanks Damian for your post (introduced to me by Kate Swaffer.) Seeing your suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I “did” to Gregory with or without realizing. It also showed me those things I was careful NOT to “do to” him.
While my first thought was “it was done with love” (which made me feel better) and my next thought was “it is only human nature” (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved.
If I may share my blog: http://mhorvichcares.blogspot.com. Gregory and I are a same sex couple who have been in a committed relationship for over 40 years. Gregory was diagnosed with Young Onset Alzheimer’s over 12 years ago.
THanks so much Michael for your open and honest post. It’s such a tough situation to be in when the insidious presence of a dementia just sets frequently unavoidable traps within a relationship. I will definitely check out your blog. meanwhile here’s a link to a piece of work I did this year on trying to address that relationship dynamic https://www.youtube.com/watch?v=gEe9NbCq2Pg&feature=youtu.be&app=desktop
with very best wishes
Damian
Who on earth would want to care for someone if they knew there were to be so many potential misdemeanours placed in their path and on their shoulders? I would perhaps walk away from caring if I thought that my love, and my very best efforts because of my love, were to be judged so harshly and in such a negative fashion. I am no more perfect than is any other person, with or without dementia.
I don’t believe that many people with dementia are portrayed as a burden and as mad, bad and dangerous, at least not in my personal experience as someone who has been a devoted carer for years, but if you have convinced yourself that is the case, there’s probably nothing I could do to change your mindset. That alone saddens me.
Remember that carers are human beings too, just as are the people they care about and care for.
An interesting take on my blog, Stephanie. All, I have done is make a list of ‘misdemeanours’ as you call them that people themselves have referred to within their relationships since the onset of dementia. They actually match a similar list of misdemeanours that have been laid at the door of people with dementia over the years. One point I must stress is that I have never questioned the love nor the motives within caregiving relationships. I never imagine or witness any mal intent. Rather I have encountered many people (myself included) with a caring role thrust upon them often flying by the seat of their pants without formal training or information other than a lot of the myths and misconceptions we are fed in te often ill informed popular press. My point was to level the playing field and to turn the tables for once in terms of the portrayal of the difficulties of the ‘care receiving role’ rather than the ‘care giving role’ a piece of work I did recently to address the change in dynamic within relationships hopefully highlights how I wanted to work with couples to realise that it is not about blaming each other but blaming the dementia – the third party within the relationship. The link is here. https://www.youtube.com/watch?v=gEe9NbCq2Pg&feature=youtu.be&app=desktop if you want to read further back in my blog to one of my earlier posts entitled ‘the power of the powerless’ you are free to read a personal testimony of caring for my father at home. Feel free to feedback further if you wish. One interesting point is that I have posted one blog about seeking parity and the swift and eloquent reply you have been able to give sort of proves my point. It is difficult to read about the opposite pint of view. A plethora of literature about the stress and burden of caring over the decades will have had a similar affect upon many unable to express their point of view ..until more recently. I hope you picked up from my post that support and acknowledgement of carers needs is of course right and just – but not to the detriment and exclusion of those being cared for. I believe that balance can and should be struck. I’m sure you may have read some of the other posts and comments on this piece. Please don’t feel sad. Damian
I love your blog post and very much agree. There are countless books and support groups for caregivers and very little for people with the diagnosis, and what there is often has to be created, managed, and run by the people with the diagnosis. Very unequal.
Thanks, Faith. Glad you like it. Parity in amount of support and having a voice is still to be reached.
No doubt, I hope to be adding my voice to the effort as I am able. Sometimes it is crazy how illogical it is…it wasn’t welcome to dementia, you are going to die that was the hardest for me to face…it was how it changed how other people see me. I never saw myself any different. Keep on doing what you are doing, you are an excellent writer. Look forward to future posts.
This has been such an eye-opener to me, a carer. I think your list of things to watch out for is excellent. I can see a tendency toward some of those behaviours in myself and it’s a great list to work from in order to improve how I interact with my husband. Just the other day I commented to a friend that I sometimes wonder who is the carer and who is the “sufferer” in our relationship. He is so much less bothered by his diagnosis than I am that he often defuses what I find a stressful situation with humour. If I get frustrated by something he will just put his hands on my shoulders and look straight at me until I look back and then he laughs. It fixes things every time. I think a list of the behaviours of careers is a long overdue concept and one that will help both the people with dementia and their carers.
Thanks Linda for your open and honest response. I’m really trying to promote a much more level playing field for all and services that meet the needs of both parties within the care giving/receiving relationship at that very early period when dementia sets so many insidious traps.
Very best wishes to you
Damian
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Just to let you know that I am using some of the points from your Blog in training in the acute hospital where I work as a Dementia Practitioner.
Getting staff to see ‘their’ actions through the eyes of their patient who may have memory loss and are on a hospital ward can be illuminating!
Hi Maggie, so glad you found it useful. I’ve been doing some training with acute hospital staff here in York and Scarborough too. Do keep in touch. Damian dementiafriendly@outlook.com
Reblogged this on elhijodeveronica and commented:
My annual reblog. STILL the blame-laden stress and burden model persists with the usual suspects of tired services. Let people with dementia set the agenda. Time to level the playing field. Time for asset based approaches