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Family finds safe haven at Baycrest for mother suffering from rare brain disorder

While on a family trip to Norway a few summers ago, Randi Darras had some trouble translating Norwegian into English. As a fluent speaker of both languages, this was uncharacteristic for the then 68- year-old resident of Alliston, Ontario. But with the long flight overseas, family members chalked it up to fatigue.

A year later, Randi began showing more telling signs there was a problem. She struggled to do fairly basic math, like adding up the tip to pay for a restaurant bill. And she was unusually irritable and abrupt. “The main thing that concerned me was the personality changes,” Randi’s daughter, Linda relates. “I felt there was something wrong.”

Over the course of the next two years, Linda would accompany Randi to numerous doctor visits where different diagnoses and treatments were provided. Though some treatments were effective, Randi digressed to the point that when Linda would visit, Randi would still be in her pajamas at midday, with her hair disheveled, and stacks of unopened mail and garbage left on the kitchen counter. Finally, in May of this year, a geriatric specialist in Barrie, Ontario diagnosed her with Frontotemporal Dementia or FTD, which refers to a group of rare brain disorders that affect the frontal and temporal lobes – the parts of the brain that regulate speech and personality.

Following the diagnosis, Randi started to receive home care which helped her with daily activities, like showering and getting dressed. Linda enrolled in a support group for caregivers of people with FTD and it was at a group meeting that she learned about Baycrest’s Samuel Lunenfeld Mountainview Club, a community day centre for adults with cognitive impairments like FTD. The club offers a mixture of social, recreational and educational activities.

“My mother is a very social person so the club is very good for her,” Linda says. “She tells me that sometimes they watch films and other times they do physical activities and she enjoys her time there.” Linda notes that before enrolling at Mountainview, Randi spent a lot of time on her own which affected her demeanour. “She would just sit and watch TV most of the day and because she had trouble expressing her thoughts, she couldn’t just pick up the phone to call a friend,” Linda relates. “But at Baycrest, she’s starting to get to know the names of the people there and…I feel her mood has picked up a bit. She’s in better spirits.”

Randi will soon be meeting with Baycrest’s Dr. Tiffany Chow, a behavioural neurologist with the Sam and Ida Ross Memory Clinic who does extensive research and clinical work on FTD. She notes that FTD patients at Baycrest receive specialized care from a collaborative team. “Every Friday, the team gets together to talk about patients and we learn from each other in terms of creative strategies developed for particular situations,” says Dr. Chow, the assistant professor of neurology and geriatric psychiatry at the University of Toronto. “There’s a real benefit for us because the people running the day program, whether social workers or nurses, spend several days a week with a client and they can report back to us objectively on a client’s progress.”

Linda says her mother is in “good hands” at Baycrest and looks forward to the meeting with Dr. Chow. “I think it will be good to meet with Dr. Chow,” Linda says. “We want to confirm thediagnosis, obtain more information and if in any way my mother’s experience can be used for research, we want her to participate.”

For more information about the Sam and Ida Ross Memory Clinic, visit www.baycrest.org/memoryclinic or call 416-785-4359. All appointments require a physician referral. For more information about the FTD program at the Samuel Lunenfeld Mountainview Club visit the Baycrest Community Day Centre for Seniors or call 416-785-2500, ext. 2330.

What is FTD?

Frontotemporal Dementia, or FTD, refers to a group of rare brain disorders that affect the frontal and temporal lobes – the parts of the brain that regulate speech and personality.

FTD Signs and Symptoms:

Speech and language problems
Apathy
Lack of motivation
Lack of concern for others
Loss of concern about personal appearance and hygiene
Compulsive eating and oral fixation
Uninhibited and socially inappropriate behavior
Inappropriate sexual behavior