Are humour and play a valid part of dementia care or is it too serious to be joked about? John Killick, in the first of a series of articles considering what has changed in dementia care over the past 30 years, describes how he revised his views on the value of laughter in the course of care.
In this journal in 1997, Tessa Perrin expressed the view that people with dementia respond to the idea of play in much the same way as a small child does, and she invoked the theories of Roget to bolster her case (Perrin 1997).
In a letter in the following issue, I strongly rejected this view and stated that “advocating ‘play’ with people with dementia is splashing around in the shallows and ignoring the ocean of deep water that stretches to the far horizon”(Killick 1997). In giving voice to these thoughts, I think I was reflecting the current view that dementia was “no joking matter”, and far too serious a condition to be treated in this cavalier fashion. Nevertheless, Tessa had got me thinking, and the more I worked on communication in care homes, hospitals and day centres the more I began to find my original dogmatic reaction questionable. More and more I saw individuals reacting positively to a humorous approach. And there were many occasions when people with dementia said things which were funny and obviously intended to provoke laughter. Here are a few examples:
“Spending my time? – I never earn any!”
“I had a bath this morning and I felt like a shipwrecked mariner.”
“Up to three tons my licence — and now I can’t even ride a bicycle!”
“What wonderful pastures we have: we are full of fat nurses.”
“I’m seasick if I so much as look at a sailor with wavy hair.”
One day a man with dementia said to me:
“I never felt so well — it’s the laughter, it keeps me going, it beats all the drugs.”
A lady said: “I roar with laughing at people, and they laugh at me, but I don’t know any jokes. It’s all home-made humour. If it fits I say the phrase. Sparsmodic. I can laugh and like it.”
Cary Smith, a man with dementia in America, wrote: “Laughing is absolutely wonderful. A sense of humour is probably the most important, valuable thing you can have when you have Alzheimer’s.”
John Bayley, who looked after his wife, the novelist Iris Murdoch, shows how playfulness helped to keep them going:
“The baffling moments at which I cannot understand what Iris is saying, or about whom or what… can sometimes be dispelled by embarking on a jokey parody of helplessness, and trying to make it mutual. Both of us at a loss for words.”
I read in a book by Richard Taylor, another man with dementia in the States: “We should share, encourage and point out all moments of joy and glee to one another, especially to people living with dementia whose lives are too much defined by sadness. Laughter can reinforce the joy, the purposefulness, the connectedness of all human beings – if only we can see the forest of humanity instead of the trees of dementia” (all quotes from Killick (2012)).
Funshops experience For me the real breakthrough moment of realisation of what play can offer came when I ran a series of workshops in six towns and cities across Scotland in 2009, based on improvisatory exercises drawn from books published by drama directors, which I called “Funshops”. Six sessions were held in each location, sufficient time to get to know each group of participants, and all the exercises were designed to break down barriers and stimulate hilarity.
One man, who was very reluctant to participate and had been sent there by his wife, was an amateur artist. By the third session I thought up a special sketch for us to enact spontaneously together. I put him in charge of the proceedings. He was the artist, I was the client commissioning my portrait. Gradually my demands became more and more excessive. For a while he played along with this, but at last he could bear the pressure no more: he turned to address the rest of the group: “I do not accept this commission,” he stated. Everyone fell about laughing. By the last session he was in his element, almost in charge. The development officer who had organised the sessions commented to me “I have never seen such a positive change in a client in such a short time.”
In reviewing the project, I came to the following conclusions: first of all Funshops allow people to relax into a carefree state of mind; secondly, they are being encouraged to see the funny sides of things, and to realise that this is a capacity that they share with others with the condition; thirdly, there is the sense of community that is involved. To quote from the first article in JDC that I wrote on the subject, “I have heard a number of times the comment that there seems to be an irreversible force in a group ‘which draws you in’” (Killick 2010).
Clowning project In 2003 I visited a scheme in Edinburgh run by Hearts and Minds called “Elderflowers”. This was a clowning project taken to dementia assessment wards throughout Scotland which was having remarkable success. One of the participants called the actors “funny and sad and friendly” which drew attention to the relationship-building nature of the enterprise. I wrote about the project in JDC at the time (Killick 2003), and returned to it a few years later (Killick 2015) to see if this quality and its celebration of the primacyof humour had been maintained: “In one small lounge a gentleman was sitting on his own. The Elderflowers introduced themselves as Bonnie and Handsome. ‘Better if you were Bonnie and Clyde,’ he said. The three of them then fantasised as to how this might work out in this institution. ‘We could always shoot our way out of the premises,’ he suggested.” The characteristics I identified in my second article included: humour as a “calling card” which immediately broke down barriers; the seemingly effortless way in which humour modulated into serious conversations and then turned back into jokeyness again; the extraordinary adaptability of the actors in feeling their way into the concerns of the clients; the way the personalities of the actors took on qualities of openness and attractiveness which were heightened versions of their ordinary selves; and the way the actors failed consistently in whatever tasks they attempted, putting them on a par with those with whom they were interacting, their vulnerability making them so sympathetic to others. In an accompanying article Magdalena Schamberger (2015), the artistic director of Hearts and Minds, drew attention to the fact that the actors always work in pairs, which means that they can always call on someone for immediate support in such demanding work. She was well aware of the balance that had to be maintained between risk-taking, the ethos of the units in which they worked, and the emotional fragility of some of the clients. Playfulness always had to take place in social and individual contexts.
My developing views
By 2012 I felt such confidence in my conviction of the primacy of the subject that I published the book Playfulness and Dementia. I had no difficulty in eliciting vivid accounts of playfulness in action from people with dementia and carers.
In the following passage I identified the source of my own earlier opposition: “To advocate play with people with dementia is to run counter to an established culture and is almost bound to provoke adverse comment in others and even opposition. This is an ethical argument that has to be won before play with people with dementia can be wholeheartedly embraced.” That conflict can still be observed, but I believe its force has lessened over the years. My view now is that dementia often leads to cognitive decline but leaves the mind’s emotional and creative aspects intact. Indeed, with its remarkable compensatory characteristic it can even enhance those feeling qualities. Humour effortlessly taps into this potential.
Tessa Perrin, in that article which started me off, eloquently made some valid points which I glossed over when I sent off my salvo. She pointed out that the idea of play was bound to provoke a negative reaction in those who for decades had promoted what she called a “nursery care” type of custodial care. She pointed to a positive development in general attitudes to mental wellness, stating that “soundness of psychological health in adulthood lies in a playful disposition…. also, that those who wish to engender those qualities in others, must possess and demonstrate them themselves.” She also made the crucial distinction between those activities designated as playful in essence and many others of general living in which an approach of “spontaneity, humour, creativity and joy” might bear fruit. Where I still part company with Perrin is in linking this to Piaget.
It is far too simplistic to seek a parallel between the learning process of the infant and the supposed unlearning of these skills in dementia. There is obviously a lessening of capacity in terms of reasoning and memory skills, but we are dealing here with a person who had fully developed verbal ability and still has a lifetime’s stored experience of being in the world, and these will manifest themselves on occasion. In an article published in 1999 in this journal Pulsford, Connor and Rushforth reinforced my view that Perrin’s invocation of Piaget was suspect. They criticised her for promoting a wide-ranging theory without evidence to back it up. They claimed that play-based activities induce “cognitive security” in those with advanced dementia, but that such activities are not regarded by participants as “play” in the ordinary sense. In my view they in their turn provide no proof for this assertion.
I come now to an account of my own personal experience of caring for someone full time with the condition, for my wife was diagnosed with multi-infarct dementia in January 2018 and had been showing signs of change for a least a couple of years before then. After 25 years of working with a large number of individuals with the condition I found myself having to adapt to new circumstances in my own marriage.
Right from the start I established playfulness as one of the main principles which would guide our regime. Indeed, I didn’t need to emphasise it because my wife herself began to practise it in ways she had never shown before. I picked carers to help me who effortlessly displayed this characteristic.
When, the following year, we moved into an assisted living facility, and a number of new staff I hadn’t chosen came on the scene (for she required regular assistance because she had suffered a stroke) I encouraged them to make humour the mode of operation, by displaying it myself towards her and towards them, and without exception they responded. It has made life for both of us considerably less stressful than might have been anticipated, and though mobility has been constrained and social life more limited I can honestly say that the quality of our experience has remained consistently high.
It may be asked: how can playfulness play its part in the activities of daily life? The answer is: in a multitude of ways. It takes two carers to convey my wife to the toilet. She jokes with them both by pretending not to comply with their requests, then suddenly cooperating. She sets one against the other; she pulls faces and makes rude gestures, and so do they in return. They speak to each other in sing-song and she switches from one mood to another unpredictably, keeping them on their toes.
The laughter emanating from the bathroom often has to be heard to be believed. It is a common occurrence for the staff to comment to me at the end of a session how much they have enjoyed it. It has released them from the monotony of routine and allowed them to give fuller rein to their personalities. The verbal is something which often causes my wife problems, but often she will express humorous perceptions with great clarity: rain is “chuck-a-puddle”. She remarked of the TV sarcastically, “How kind of Boris to come and see us today!”; she commented to carers who had taken her to the toilet, “There must be a cheaper way of doing this,” and when they asked what it might be, she answered “Parachute.” I have no doubt that she appreciates the general atmosphere of bonhomie: one day she said to me, “It was very funny going to bed. It was the talkers and they were focused.”
As the number of people with the diagnosis, both in the UK and the world, inexorably increases, and we are no nearer finding definitive cures, identifying psychosocial principles and practices becomes urgent. One of these must be playfulness. It is of demonstrable value and, though its acceptance by the public at large has been slow, the accumulation of instances has grown steadily. In the development of awareness in this area the Journal of Dementia Care has played a key role.
Postscript On 17 November, after this article was written, my wife suffered a massive stroke while carers were getting her up. It would be true to say that she died laughing.
Killick J (1997) In deep waters. Journal of Dementia Care 5(3) 9.
Killick J (2003) Funny and sad and friendly: a drama project in Scotland. Journal of Dementia Care 11(1) 24-26.
Killick J (2010) The Funshops: improvised drama and humour. Journal of Dementia Care 18(6) 14-15.
Killick J (2011) The power of laughter. Journal of Dementia Care 10(1) 14-15
Killick J (2012) Playfulness and Dementia: A Practice Guide. London: Jessica Kingsley Publishers
Killick J (2012) Cultivating playfulness. Australian Journal of Dementia Care 1(4) 8.
Killick J (2015) Clowning and connecting: Elderflowers ten years on. Journal of Dementia Care 23(1) 19-20.
Perrin T (1997) The Puzzling Provocative Question of Play. Journal of Dementia Care 5(2) 15-17.
Pulsford D, Connor I, Rushforth D (1999) Does play demean people with dementia? Journal of Dementia Care 7(5) 14-16.
Schamberger M (2015) Clowning brings a spark of something new. Journal of Dementia Care 23(1) 20-21.