“One of the projects we’re doing is a pilot project,” regional co-ordinator Susan Gustafson said. “It’s a community outreach project. We’re using volunteers to visit health-care providers to discuss frontotemporal degeneration and how needs differ from other people with dementia.”
Frontotemporal Degenerarion (FTD) is a rare disease process that affects the frontal and temporal lobes, which control language, behaviour and movement. It has a relatively young onset, generally being seen in people in their 50s and 60s.
Effects of FTD include increasing difficulty in planning activities, behaving appropriately in social or work settings, interacting with others and caring for oneself. While there is no cure for the disease, medication is administered to help patients stabilize mood.
“They sort of lose the ability to make good judgment -- sometimes (they make) inappropriate comments, wander within the community, and they’re younger, so the community doesn’t always look at it as dementia as well,” Gustafson said.
Once volunteers have filled out the AFTD’s application, Gustafson will do some training on the phone and on the Internet, before discussing the pilot project and outreach work.
“The office is in Pennsylvania and services both the United States and Canada, but we’re really trying to spread the word a little more here in Canada,” said Gustafson, whose husband is currently suffering from FTD.
A percentage pertaining to the exact number of people who suffer from FTD in Prince Albert does not exist, though Dr. Megan O’Connell, clinical psychologist for theRural and Remote Memory Clinic at the University of Saskatchewan, said there are many people from the north who are diagnosed at the clinic.
“FTD is such a different type of dementia,” O’Connell said. “It presents so differently. It can look something like a bi-polar disorder.”
The Rural and Remote Memory Clinic has been operating since 2004 and is designed specifically for rural Saskatchewan residents, with “rural” defined as patients who live at least 100 kilometres away from Saskatoon and Regina.
“The cool thing about the clinic is because we’re designed specifically for rural people, we do as much ahead of time using Telehealth,” O’Connell said. “We use videoconferencing so people in P.A., for instance, just have to go to the local hospital and then they can talk to the specialist here in Saskatoon.”
Patients are also brought in for a full-day assessment, having all of their diagnostic processes done in one day.
“By the end of the day, we give them a diagnosis,” O’Connell said. “The reason why the clinic is fairly unique is we’re all faculty members … We research in this area, and we’re using an interdisciplinary model.
“The patient comes out and gets interviewed by all of us at once, as opposed to seeing one specialist and telling your story and seeing another specialist and telling your story,” O’Connell added.
The AFTD just recently celebrated its 10th anniversary at the home office in Philadelphia. The association consists of a non-profit organization with a volunteer board advocating for funding to treat FTD and provide support for caregivers.
To become a volunteer, email Gustafson at email@example.com.