Understanding dementia – it's therapeutic

TAUREEF MOHAMMED

I NEVER truly appreciated what managing dementia entailed until I visited a patient’s home. Up until then, every patient I saw with dementia was in a hospital. I examined the patient, ordered tests, prescribed medications, warned about the worst, and hoped for the best – and that was that. In the hospital, there was not much to see or do other than the medical things.

Then, about a year ago, I spent a month with Dr Sheri-Lynn Kane, geriatrician at Western University, who practised house-to-house geriatrics in London, Ontario. I learnt there was much more to see in people’s homes. And when I saw what I saw, I felt very insignificant.

The doctor and the medication he prescribed were perhaps the least important. Caregivers, with the help of community healthcare workers, had transformed homes into dementia-friendly environments. Simple, thoughtful ideas seemed more impactful than a pill.

Furniture rearrangements, good lighting, bathroom modifications prevented falls and hip fractures – people with cognitive problems were always at high risk of falling. Wearable GPS tracking devices provided a sense of safety.

One family removed paintings from their walls after realising the images were confusing their mother. Another family played music to perk up their loved one, who seemed disengaged otherwise.

And in another household, specially bought Ribena drinks reminded an elderly woman of her days in the UK, from where she migrated after the Second World War – dementia had not taken away her long-term memory.

The modified homes reflected a deep understanding of dementia, and an even deeper understanding of the person with the disease.

And the opposite was true: a lack of understanding of dementia made the situation dicey, and that’s when Dr Kane and her interdisciplinary team got called up.

Their first task – before all the neat, non-medical interventions – was education, dispelling myths about dementia and ageing.

Why was dementia so misunderstood? Why was it so easy to blame the person and not the disease? I asked Dr Kane how she approached these situations.

“I first explain what happens when someone has a stroke.”

Pointing to her head and then her right arm, she said, “We can make the connection: left side of brain damaged and right arm paralysed. Nobody will tell that person to eat or pick up something with their right hand.”

But the brain damage that leads to dementia manifests differently.

“The cognitive difficulties are not physically visible, like a paralysed arm. Instead, they manifest as people not doing things correctly, forgetting, not being able to explain themselves the way they used to.”

Unlike a stroke, which occurs when a blood vessel feeding the brain is suddenly blocked, dementia happens insidiously, as parts of the brain slowly degenerate.

“It all happens gradually. It becomes difficult to say when Mom went from being a strong-willed, independent person to a person who is unable to do what she did before and won’t accept help.

“So the family may say, ‘Well, she’s always been that way.’ But then you find out she was able to cook a three-course meal a few years ago, and now she’s forgetting to eat. That’s not normal.”

And once it became clear dementia was a disease, that it was not normal ageing or personality, she moved on to the next step: understanding the symptoms.

In the case of a heart attack, understanding symptoms is easy: chest pain, emergency, tests, pills, stent.

But a symptom like apathy? It’s a bit tricky. A common symptom in dementia, apathy is a lack of motivation to do meaningful things, and is caused by damage to the frontal lobes of the brain.

“They have lost their gas pedal. So I tell the caregiver to try to act as the gas pedal, and be the coach: ‘Come on, Mom, here’s the potato and vegetables to cut.’

“I know it’s easier to do it yourself, but the engagement and sense of purpose they feel especially when you praise them, go a long way to decrease their sense of loss.”

And when the disease progressed, as it was expected to, it was this initial understanding that made difficult decisions less difficult. Are we still able to care for Mom at home? Is it in her best interest? How much more can we really do?

Understanding dementia was itself therapeutic – it was also difficult.

By the time my month was over, I realised I had to start spending more time explaining and less time prescribing. It’s a work in progress.

For more information, visit: https://www.alztrinbago.org or https://alzheimer.ca/e

Taureef Mohammed is a graduate of UWI and a geriatric medicine fellow at Western University, Canada