Education, Advocacy and Self-Care
Three vital elements for managing the stress and complexities of caring for a loved one with dementia.
Alex-ann Fournier wasn’t completely surprised when her mom started exhibiting strange behaviours and grasping for words at the age of 51. Frontal temporal dementia runs in Fournier’s family — her grandmother and five great-aunts died of it. She knew what it could look like.
So, when Fournier’s mom, Nancy Messier, received a dementia diagnosis, the now 27-year-old Fournier committed to learning as much about the disease as she could. She went online, searched ‘frontal temporal dementia’ and read everything she could find.
“I was reading a whole lot about it. I was really aware — that was my way of coping with the illness,” says Fournier, who lives outside of Montreal and works as a counsellor for high school students with learning disabilities.
“I wanted to know everything that was coming, and I wanted to be prepared.”
In fact, education about the disease, and skill-building around it, can help reduce the stress of caring for those living with dementia. And many dementia groups run programs that teach care partners how to manage the stress and complexities of looking after those living with dementia.
One such initiative is the CARERS program offered by the Reitman Centre in Toronto.
“Our programs are evidence-based and research-supported,” says Rhonda Feldman, a mental health clinician at the Reitman Centre, which is the provincial hub for the Enhancing Care Program that supports dementia caregivers. “Our research on the effectiveness of the CARERS program shows that care partners [who join] have improved competence, stress coping ability, and mental well-being. They gain greater confidence to cope with the practical challenges of caregiving, and they learn strategies to connect more genuinely with the person they are caring for."
“The more I speak about it [dementia], the more I feel comfortable to cry about it.”
– Alex-ann Fournier
Of course, the challenges can still feel overwhelming at times. Fournier threw herself deeply into caring for her mom — she accompanied Messier to every appointment and became the point person for explaining the disease and its accompanying behaviours to the rest of the family.
Eventually, the emotional load and stress heightened Fournier’s existing anxiety disorder and led to burnout. She took some time off work and sought help from a psychologist.
The psychologist recommended Fournier view her struggles like she was watching a movie rather than living it; this helped her take a step back and analyze the situation with her mom without being emotionally involved.
Additionally, the psychologist counselled her to have a couple of people in her corner — her stepdad and sister — who understood what was happening and could help out when the stress of managing her mom’s dementia became too much.
Fournier also became a dementia advocate, educating people about the illness and posting about the disease and her mom on Instagram. Opening up has been therapeutic.
“It’s a way to get support and also sensitize people about dementia,” says Fournier. “The more I speak about it, the more I feel comfortable to cry about it.”
What probably helped the most, though, was making her self-care a priority and taking the time to meditate, walk her dog, and spend time with her boyfriend and other friends.
“Take some time to look at your own needs — that saved my life, basically,” says Fournier. “Of course your loved one needs your support and time, but if we’re not well, mentally, physically, we can’t be there for our people. We have to be, I would say, selfish. We have to put our needs first to be there for the person that needs us.”
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