First established in 2014 as Wednesday Night Joes, the Young Onset Dementia Association (YODA) at St. Joseph’s Health Centre Guelph has a new name, a new day and time, and it’s welcoming new clients, too.
If you know someone living with early onset dementia, we can help. St. Joseph’s Health Centre Guelph is home to the Young Onset Dementia Association—a day program that takes place on Tuesday afternoons from 11 a.m. to 4 p.m. and space is available. It’s the only day program in Guelph designed to support people living with young onset dementia.
Young onset dementia, which means a diagnosis that is made before the person turns 65, is rare and only affects about 3% of people diagnosed with the disease. But, a diagnosis of dementia in younger years can be particularly difficult and presents some unique challenges.
“Our participants are usually in their mid-50s and, for most, the diagnosis comes at a time when they are still working, might have children living at home or they might be taking care of an aging parent,” said Brandy Nellis, Director of Community Support Services at St. Joseph’s Health Centre Guelph. “Dementia can impact a person’s ability to work and they might have to retire earlier than they had planned. This diagnosis can also affect family relationships, as the person who is so accustomed to being the caregiver suddenly becomes someone in need of care.”
Often, the personal and financial impacts are very different than they are for people diagnosed later in life. At the time of diagnosis, a younger person might still have significant financial and familial obligations that increase the complexity of their situation. People diagnosed with dementia earlier in life often have to sort through feelings of disappointment, anger, guilt and loneliness that make the diagnosis hard to accept.
That is why the YODA program at St. Joseph’s is so important. It provides a safe space that is inclusive and non-judgemental where someone diagnosed with dementia at a younger age can meet with other people who are going through similar challenges. YODA promotes self-esteem and confidence by helping participants maintain a sense of autonomy and choice, reconnecting and engaging with others, and taking part in activities that are meaningful and fun.
“The program is designed for flexibility so it can be adjusted and adapted to the changing needs of the participants and as new people join,” said Amy Sanders, Clinical Resource Worker for YODA at St. Joseph’s. “Staff facilitate the weekly sessions, but the program is largely participant-driven.”
The session starts just before lunchtime and the lunch options are determined with input from participants who help prepare the food with support from program staff. Participants also choose the social and recreational activities for each session. These activities can include enjoying fun quizzes or solving puzzles to promote brain health; proposing general interest subjects they want to explore, like music, photography or gardening, that become the topics for presentations or discussions; and, using technology such as tablets or video games when appropriate. In the past, the program has also included outings suggested by participants and planned with their interests in mind.
As for talking about the diagnosis, program staff take their lead from the participants themselves. Some participants are more willing to talk about their experience and their challenges with dementia. Talking about their experience living with dementia and listening to others share can reduce their sense of isolation and help them realize that others share similar experiences and challenges—but they also share resources, coping strategies and ideas.
YODA is hosted on-site at St. Joseph’s Health Centre Guelph’s campus on 100 Westmount Road and the program cost is $12 per day.
If you are interested in the YODA program at St. Joseph’s and want more information, call St. Joseph’s at 519-824-6000 ext. 4415.