Dementia patients deserve more than coloured balls and matching games

The new Chief Executive Officer (CEO) met us at the door with a loud and breathy “Hello!” as he waved us into a small, brown room. He steered us toward a round table decorated with flowery China cups, a tea pot that matched and a platter overflowing with tiny madeleine cookies wrapped in clear plastic. As we sat down in leather chairs, the kind with arm rests too low, he cleared his throat and started talking about his vast experience in geriatric care, his distant travels to learn about aging, his proficiency in six languages and how excited he was to have been offered the job as head of a dementia care home.

He stopped to take a breath. “Sugar?” he said, pointing a long finger toward a neatly stacked pile of packets. As he leaned back watching us stir our tea, he crossed his arms on his chest, showing the ragged edges of the cuffs on his white shirt and a worn black belt.

It was a lot in the first five minutes of a meeting meant to give families and caregivers an opportunity to meet the new hire, discuss concerns about their loved ones, and share expectations for their care.

I was the plus-1 joining my friend whose mother, an accomplished scientist, had been living at the facility for a couple of years. It had been six years since my own dad passed away from dementia after more than a decade at a long-term care (LTC) home that saw me and my mom embroiled in regular “debates” with administration about things like the importance of buttoning his shirt the right way, wiping his face after dinner and taking him outside to the garden regularly so he could feel the sun on his face. Six years is a long time, but not long enough to ease the rage and sadness over the lack of quality of life that my dad had when he was most vulnerable.

My friend was satisfied with her mom’s care. The staff were kind, treated the residents with dignity and respected them in ways many care homes hadn’t come around to yet, such as letting them choose when they wake, sleep and eat – simple things which we now know decreases aggression, depression and anxiety. Still, one of the areas where the home was lacking was helping residents to feel useful and engaged, a very big deal for my friend whose mom – despite dementia – could still solve complicated equations and discuss scientific theories. Sitting in the living area watching television for hours wasn’t bringing her joy or peace.

It was promising, then, that the CEO with the ragged cuffs had apparently been all over the world learning about memory care. He listened while we talked about how much more we know about caring for people with dementia, much more than when my dad was in LTC. And how, thankfully, we are starting to move away from institution-like facilities to places that prioritize social connections, life enrichment and person-centred care.

We mentioned the work being done – and successes being seen – in Thailand that is revolutionizing how we think about dementia and elderly care with Chiang Mai, a facility structured like a holiday resort. He nodded as we mentioned the renowned Village Langley in British Columbia, a memory care residence built with a commitment to giving residents lives of purpose and meaning. The Langley had a “real” woodworking shop, a spa and a general store where residents could shop with money and wallets. Even better, residents often helped with day-to-day operations, like a retired lawyer who delivered groceries to other residents.

“I think my mom would really benefit from having a job,” my friend said, suggesting things she could do like delivering mail to other residents or helping in the kitchen.

The CEO leaned back in his chair, smiling widely. It was the moment he had been waiting for.

“Well, I am so glad you mentioned this,” he said, flipping pages quickly in the notebook that sat in front of him. “I have so many exciting plans.”

He bent forward, twirling his pen quickly with the fingers of his right hand.

“We will be adding more activities,” he said, nodding toward my friend. “These are going to be perfect for your mom.”

We squirmed in our seats as he talked about one of the games that would be incorporated into the home’s daily routine. He tore a page out of his notebook and drew six large circles, explaining that each circle would be a different colour, and the resident would have to match a coloured ball to each one.

“It would be very stimulating,” he said, nodding as he put his pen down.

The room was quiet as our hearts sank.

Certainly, games play an important role in supporting the brain, but surely we have learned enough about the benefits of interaction, stimulation and practicing reasoning on the well-being of people with dementia to know that we can do so much better than drawing circles and playing matching games – especially for people like my friend’s mom, whose disease is at a stage that still allows her to participate in life in bigger ways. In fact, research has found that “serious” games for dementia care, or SGDC (yes, it’s a thing), defined as games with the main goal of learning and education rather than entertainment, can boost cognition and reduce depression – two factors that contribute to better overall health. Think board games that require other players and virtual reality games that have gamers complete tasks like make coffee or toast bread. Also consider The Langley’s example of real stores and services that residents can visit and partake in. These are all newer and more innovative ways to engage people living with dementia – but we have to be brave enough to try.

The next “new and improved” thing on the CEO’s to-do list was the creation of an advisory council for those he called POAs, or power of attorneys. In other words, caregivers or families.

“The people who make the decisions about the residents,” he said when I asked him to clarify. And as we stood up to leave, he stopped us at the door to mention another change he planned to make: to transition the home’s meal plan – which was already great – to what he called the “amazing MIND diet.”

That a world-travelled geriatric care specialist would make one of his first accomplishments in his new role creating a meal plan meant to reduce dementia risk and protect memory for people who already had dementia seemed a bit, well, pointless and misguided. And deflating. It was also indicative of how little thought went into resource allocation. Not to mention the fact that despite all the hype around the MIND (Mediterranean–DASH Intervention for Neurodegenerative Delay) diet, no one seems to know for sure what the actual impact is on cognitive impairment anyway, beyond what would normally be seen by simply eating healthy.

My friend was quiet as we drove home. Sad, even. We had arrived at the meeting with high hopes that a new leader with a long list of accreditations would bring with him a sparkly mission rooted in innovation, courage and evidence-based care. Instead, we got not much more than what has been done for decades, cloaked in illusions of moving forward.

As long as we think that sitting a person alone at a table to match coloured balls to circles on a piece of paper counts as person-centred care; that caregivers are nothing more than the people signing the cheques; and that we don’t think intentionally about where to put those dollars, people with dementia will never get the life and dignity they deserve. And their loved ones will never feel at peace with their care.