It’s been nearly four years since Kingston resident Doris Thomas brought her son John Thomas home and became his primary care partner. At just 63 years old, John is living with Frontotemporal Dementia (FTD), a progressive disorder causing nerve cell loss in the brain’s frontal and temporal lobes. It’s the most common dementia in adults 65 and younger.
“I do my best to stay positive,” explains 80-year-old Doris. “I am very happy to have the strength and ability to support John at this time in both of our lives, and I’m truly very lucky; I have a great support system who help us out constantly.”
Providence Care plays a role in the support system Doris has created. John participates in Providence Care’s Adult Day Program, a community service program providing respite and recreation, and Doris recently accessed education and support through the Enhancing Care Program, delivered in partnership with the Reitman Centre at Sinai Health and funded by Ontario Health Toronto.
“The Enhancing Care Program is designed to meet the unique needs of care partners who are caring for a person living with dementia,” explains Providence Care Social Worker and Program Facilitator Natalie Lintner. “Within the program we have two separate groups, the CARERS [Coaching Advocacy Respite Education Relationships & Simulation] group and the TEACH [Training Education and Assistance for Caregiving at Home] group.”
Doris enrolled in the eight-week CARERS program which focuses on problem solving therapy and effective communication through interactive simulations.
“You know, I thought I already knew quite a bit,” laughs Doris. “I was the Director of Volunteer Services at Providence Care out of St. Mary of the Lake Hospital for 27 years. I taught volunteers how to talk with individuals living with dementia as my job. I registered for this course selfishly as a two-hour break and for the social aspect, but I walked away with so much more. It was really very valuable,” says Doris.
Within the group, Natalie and her colleagues help care partners like Doris break down a problem they’re experiencing with an eight-step problem solving model. Participants have a chance to share their issues, brainstorm solutions, and then practice communication tactics with a trained simulator who takes on the role of the person living with dementia.
“When we do simulation work with our care partners, we’re giving them the chance to build confidence in a new skill they’re learning, giving them the chance to see how different approaches may work with real time feedback,” explains Seniors Menal Health Community Team Manager and Project Lead, Philip Ambry.
Doris says the problem she brought to the group was supporting John in bathing.
“John used to be Mr. Clean before,” jokes Doris, “but things changed as he progressed further into his disease, and it became such a sticking point for me. In the group, they helped break it down for me and it was so fascinating. They discussed how showering is actually a complex task with many steps, and I just never thought about it that way before,” she explains. “You have to get new clothes, turn on the water, set the temperature, get a towel, a washcloth, make sure you have soap – they listed all these steps that never occurred to me and helped me shift my way of thinking.”
Doris says she approaches John’s shower time with more empathy and understanding now, while also having more tools to communicate and work together with him. The biggest win she says, was when John, on his own, picked out a new outfit and handed it over, indicating he was ready for a shower without any prompting.
“The needs of the care partner are often overlooked or not met at all in health care,” explains Philip. “This unique program not only offers support and community like a traditional group might, but it also relieves care partner stress, assists with finding solutions to problems they’re dealing with, and provides more resources for coping and well-being.”
“This kind of support can help the person who has dementia stay in their home longer as well,” adds Natalie. “If the care partner feels like they’re more equipped to be able to cope with the different challenges then they’re able to provide support for longer.”
Natalie explains the CARERS group is beneficial for people who are further along in their care partner journey and could benefit from problem solving techniques, while the TEACH group is four weeks with two-hour sessions and great for people who are new to caregiving and needing resources and support. In TEACH, topics include self-care, navigating the health care system, changes to relationships, and future planning.
“With TEACH we’re exploring individual and group experiences, offering resources as needed, and supporting people through the most common challenges of being a care partner. They’re also gaining a clearer sense of what to expect and how to succeed,” says Natalie.
Both groups use self-referral forms and are available for people to participate either in-person in Kingston, Belleville and Perth or virtually in an online forum.
“We will be extending our services in the Lanark Leeds and Grenville area soon,” explains Philip. “We’re hoping to provide these groups to as many people as we can across the region with different options. So, if you can’t make it to an in-person group in Kingston, maybe the online group works for you. It’s just another way we’re trying to provide access.”
Doris participated in the program in-person and says the conversations, community and education she received continue to be beneficial as she continues to provide care.
“You know if I’ve read one book on the brain, I’ve read 30 since John’s been here but there were new things I learned in this course. Hearing other people’s stories was also really valuable and the course taught me new tools, how to approach problems, and how to navigate the emotions of caregiving.”
Supporting the care partner is part of whole person care that Providence Care is proud to provide. When care partners feel supported and confident, it strengthens the care of those living with dementia. The Enhancing Care Program offers ongoing sessions across the Southeast, with open spots and a simple self‑referral process. If you’re a care partner who could benefit from practical tools or additional support, the program is available and ready when you are.
