Meaningful conversation is what many, if not most residents in care homes ache for. I am lucky to have facilitated a regular conversation group of people in their 80s and 90s, living with dementia at one care home for nearly ten years. There are usually a handful of us and we sit together in a small group on our own in the lounge.
There is a school of thought that says that we shouldn't ask questions of people living with advanced dementia and I have some sympathy with this. People with dementia can find questions debilitating. So often, they refer to the recent past – or future, which negatively challenges a person's damaged short-term memory. Questions like "how was breakfast?", "what did you do today?" and so on, pretty much guarantee failure.
My mum had Alzheimer's disease and vascular dementia. I often found myself intuitively 'burbling' at the start of conversations with her – and also with the many lovely older people I've known over the last thirty years, whether they have dementia or not. It was my conversations with mum about her long-term memories that prompted me to develop Many Happy Returns cards and the REAL Communication framework.
Burbling and Seeding
Once we've settled in and a small selection of ideas have been seeded for possible conversation, I find that some questions can actually be helpful; as long as they don't even hint at the recent past Questions about the deep past help tap into the person's long-term experiences – and make them the expert.
At a conversation group session a couple of years ago, we were joined by N, a resident I hadn't met before. The carer who brought her in a wheelchair took me aside to explain that N was in her nineties and had advanced dementia. “She might not be able to join in, but she might enjoy being with you and listening." N looked distracted and tired. I wondered whether she would – or could join in, I knew nothing about her. Perhaps she might enjoy the experience, nonetheless.
We started as we always do, welcoming each person by name and then re-introducing me. Seeding a few linked conversational notions for people to consider, I encourage them to focus on a conversation subject area.
On this particular day, my reminiscing seeding would have gone something like this:
"I was thinking about sewing baskets today. My mum's wicker basket sat by her chair in the living room. It was full of colourful 'Dewhurst Sylko' reels and darning wool. There was a needle case with 'Needles', helpfully printed on the cover. I remember a round shallow re-purposed Pascall Fruit Bonbons tin of pins, with its familiar rattling sound when opened. The lid was stiff and if you weren't careful it would burst open, spilling pins all over the floor – with my mother shooing the dog away. There was a little pair of scissors shaped like a stork and another, large heavier pair with long blades for cutting-out, as well as saw-toothed, 'pinking shears'. There was a wooden darning mushroom, often in use... and always a few stray items short of a proper home, like buttons, cards of hooks and eyes and poppers. Sewing by hand... everyone used to do it, didn't they...? I expect you all learned to sew and knit too, did you? Perhaps it's a shame we don't do these things so much now..." and so on.
Far from only being able to listen, N was the first to speak. To the astonishment of us all – and the complete disbelief of a few, she said nonchalantly, "I was a seamstress and made Princess Marina's wedding dress!"
"WOW!" I exclaimed, feeling deep admiration and "How fantastic...!" and "Could you possibly tell us about it?"
Not so much a question as a suggestion. Her tone and eye movements suggested that she had really engaged, that she had found some personal pictures in her 'brain album'. I felt intuitively that she was probably feeling good about herself. A conversation with a person with advanced dementia can be like approaching a young faun in the wild. Move too fast and they might run away frightened, move too slow and they might freeze. If we moved cautiously, I thought, she might stay with us and share some of the experience.
"It was very simple and elegant, with a 17-foot train... quite understated really..." she continued with masterful understatement herself, completely absorbed in her memory. I looked the dress up later, so in case you are wondering what it looked like, here it is:
"Were you the only person to make it or was there a team?" I asked, working hard to keep a lid on my excitement. Long-forgotten fashion industry memories of my own popped uninvited into my head.
"Oh yes", she continued, "there were five of us. There were two wedding dresses made, from specially woven white silk and real silver thread. It was fine, but very heavy." She went on to tell us about her job, the dress, its design by the couturier Molyneux; how an identical second dress was made in Paris by Russian refugees, "so that the unworn one could be exhibited at the Palace," and her team's disappointment that in the end, it was the French dress that Princess Marina wore on the day – 29th November 1934, because of her special relationship with the people who made it.
N described in detail how the seamstresses sewed the hem in tiny sections, just five stitches at a time, and then caste off, so that if the heel of the bride's shoe accidentally caught in it, "they were very high", the whole hem wouldn't unravel. N might have advanced dementia, but she was in Flow.
Initially, there was general disbelief from one of our group, "don't be ridiculous, of course she didn't do that," said D, another resident with dementia, dismissively, forgetting her usual good manners. "Well, the story is so interesting – perhaps we can listen to some more of it?" I replied, walking a bit of a tightrope between being tactful and not disagreeing.
And of course, as the conversation developed, everyone in the group joined in, sharing distant memories of their own wedding outfits and wedding bouquets and stories of the Royals, of diamonds and tiaras, of Russian refugees and Princess Marina's relationship with them, of jobs abroad, of winter-time weddings.
Finally, N told us that the English-made dress was the only one to survive, as the other was destroyed by a fire at Princess Marina's home. I haven't been able to corroborated this formally, but I bet it's true.
Ours was a happy group that day, as so often – the smiles, laughter and engagement proved that. "Thank you so much", said one of the participants, afterwards, "I love these sessions – see you here next time." "Well thank YOU", I replied, "the pleasure was mine, too."