Many forms of dementia are untreatable, but Tiffany Chow believes that patients do not need perfect cognitive function to feel safe, productive and loved.
As a neuroscientist and clinician at Toronto's Sam and Ida Ross Memory Clinic at Baycrest, Chow has made it her mission to help families struggling with dementia to experience meaningful moments, even when the illness is irreversible.
In her new book, The Memory Clinic: Stories of Hope and Healing for Alzheimer's Patients and Their Families, she offers advice for patients and caregivers on how to cope, from delaying the onset of cognitive decline to managing expectations.
Chow shares some of her advice with The Globe and Mail:
In the book, you discuss various defences against dementia, from mental stimulation and maintaining social networks to diet and exercise. But how much can you really do to prevent it?
That's an important point that has some subtlety to it. In this day and age, we have some ability to detect the abnormal proteins that are markers for dementia. But there are quite a few people among us with these abnormal proteins, yet who are still doing everything the way they used to without extra help and who don't look to the casual observer as if they have dementia. I think the goal for more people should be to be like them. So you might have some of the abnormal proteins of dementia, but the idea is to not have symptoms of dementia.
How can someone tell if they have dementia or just absent-mindedness?
There are times in our life when we have some transient lapses in our memory because we're distracted or we're sleep deprived or we're ill. But when it's happening more consistently and you're forgetting the kinds of things that you think are really important, that can be one of the major symptoms of the illness. For healthy individuals, whatever intelligence or talents you had before, you should be able to keep those up until the end of your life.
Can you explain why education is a strong defence against dementia?
There is a correlation between having a high level of formal education and being able to have abnormal proteins in your brain without showing symptoms. But, in fact, building your cognitive reserves has to do more with constantly expanding your repertoire as you age.
It turns out reading can be helpful in sustaining your cognitive function and it's not clear yet whether that's reading non-fiction or fiction. The idea is you want to introduce your brain to new stories and episodes and have new things to discuss with people.
How does does calorie reduction – reducing one's energy intake by 33 per cent – benefit the brain?
There are cellular organisms, the mitochondria, which help scan protein products as they're made, like a quality-assurance team. As we get older, that machinery slows down, so a few more rejects get through. And with time, we get the deposition of abnormal proteins. With calorie reduction, there's a message sent to the quality-control team that says, "We're in a little bit of a crisis here. It's not huge, but would you please get back on the job and do some overtime." So in that way, you might be able to key up the vigilance for abnormal proteins.
Your late grandmother had Alzheimer's disease. How has your family history affected your perspective on the illness?
First, I have to take my own advice. The other part of it has to do with pursuing more of a meditative life and focusing more on equanimity, which I think will play into how I am going to react if I feel like I'm losing it later in life. We're all open to pleasant surprises, but it's so important to remain open to something that is not going to go the way you want it to.
Yet being diagnosed with dementia can be devastating.
Yes. However, by the time patients come see me, it's not a surprise. They've been worried for a long time. When I do give the diagnosis, more times than not, as opposed to shock, there is a certain sense of relief. They feel, "Now it's settled. We have a name for this and we have a direction we can go in."
You emphasize the importance of compassion when caring for patients. But what are some of the biggest mistakes caregivers make?
The No. 1 one mistake is thinking, "I can do this all by myself." That's a guaranteed recipe for burnout. Caregiving has to be done with some allies, whether it's your personal friends, neighbours, other family members or professional care providers. There are couples who have been together forever and the wife or husband has gotten used to the idea that they're a unit: They can handle everything on their own. But they forget that the other half of the unit now can't contribute as much. It's hard to compensate for the other person for the 15 to 20 years for the dementia to run its course.
What is the best way for caregivers to deal with patients who are aggressive or agitated?
This is one of the most stressful things for a caregiver. In order for us to figure out how to address aggression or agitation, we have to take a fearless and honest appraisal of what the patient is doing, and what may be triggering that behaviour.
There are some behaviours that are caused by the dementia itself. But sometimes it's the only way the patient has of stating that an important need is not being met, such as boredom. They may be craving stimulation or interaction. If you can create some kind of activity – it may be very simple but meaningful – it may give that person a feeling of having accomplished something that day. Then, everybody wins.
This interview has been edited and condensed.
Editor's note. This is an updated version of the story, correcting the name of the Ross Memory Clinic to Sam and Ida Ross Memory Clinic.