Facing dementia with strength and resilience
By Keri Ferguson
On Sundays when he was much younger, Anthony Carapinha would tag along with his Mom to the nursing home where she worked as a long-term care provider.
“I would sit with Mr. Jones, Mr. Boyle and an international judge who spoke five different languages – all at once,” Carapinha, BSW’17 (King's University College), recalled. “I never knew what language he was going to speak. I understand now that he likely had dementia.”
He couldn’t know at the time how those early experiences would help shape his future.
“I went there for years and developed a sense of value and worth for the older population, enjoying their rich histories, connecting and sharing my common interests with them, like sports and planes. That experience became dormant as I moved throughout my life. Then I came to work at the Alzheimer Society, and it was awakened.”
Carapinha was fully intent on working with London’s homeless population for his fourth-year practicum. But when he heard about a placement offered at the Alzheimer Society London and Middlesex, something clicked, and he recognized it as a unique learning opportunity.
“When I first came here I thought, ‘What’s this going to look like? It’s not a situation where I can create 10 sessions and help the person work through this. This is something that is not going to go away.’ So, instead, I had to ask, ‘Where are the strengths that lie within experiencing dementia? Where is their resiliency? How can we tap into those things and create a quality of life?’”
Carapinha was heartened to discover that the values held by the Alzheimer Society aligned with those espoused in his social work program and, more personally, the ones he learned from a homeless man in Toronto’s downtown core some years earlier.
“He had asked me for money, and I asked if I could bring him food instead. The first day I took him McDonald’s, for which he was very grateful. The second, I thought, ‘hmm, that’s not a very healthy choice,’ so instead I took him an apple, an orange and an egg sandwich. Again, he was very grateful but he had to tell me, ‘I don’t have any teeth, and it hurts when I eat.’ That was when I learned it was not about what I thought were the right or healthy choices, and making them on someone’s behalf from my own viewpoint. It’s about asking, and giving that person what’s best for them.”
“It’s the same here at the Society. It’s about those one-on-one connections. It’s not about just giving somebody something, it’s about acknowledging their presence and their sense of autonomy and self-determination. It is about investing that time in the other.
“When a person is in the late stages of dementia, they might not always be present to speak on behalf of their authentic self,” Carapinha continued. “But one of the things I enjoy about working here is that the earlier people come to our Society, the more information they are able to give. They express their wishes clearly to their loved one and say, ‘When I am no longer able to do this, we’ve talked about what I would like.’ ”
After a successful practicum, Anthony stayed on as a research assistant under the supervision of social worker Paul Yost, BSW’04, BA’06, MSW’09, on the project, “Rural Support for Care Partners for People with Dementia.”
Funded by the Centre for Aging and Brain Health, the project hypothesized that providing support to care partners outside of urban centres may reduce care partner burn-out and emergency room visits for both the person with dementia (PWD) and the care partner.
“It grew out of an idea that originated when we started a Memory Café out in the country at the Four Counties Hospital near Newbury in Middlesex County,” Yost explained. “At the first café, a care partner mentioned how little support there was for care partners outside of urban centres.
“Through the needs assessment/environmental scan that Anthony completed as part of his work, it was identified that having a program for the PWD was needed for care partners who could not leave their PWD at home alone. The scan included the resources – and the lack of resources – in the area surrounding Newbury. He also examined the barriers that this demographic faces in accessing services.”
At the time Carapinha was taking a social work practice-based research course, which is focuses on creating programs and policies and evaluating them. “Working on this project gave me a further opportunity to apply my knowledge in a professional setting. It also really helped me understand the needs of our clients, especially in rural settings,” he said.
The project was modelled after the Care~2 Support Group, a program offered in London for those in the early stages of Alzheimer’s disease or other dementias (ADOD) and their
Care partner. The program addresses the isolation family caregivers face when dementia’s difficult advance results in their becoming less able to attend support meetings and or use services because they are uncomfortable leaving their loved one alone at home. The Care~2 program allows the homebound caregiver to attend a support group facilitated by an Alzheimer Society Registered Social Worker, while their loved one with dementia attends a concurrent social recreation program.
The first meeting of the Care~2 Support Group, Newbury, was held in May, 2017. The program was modified to meet the specific needs of persons living in a rural setting, such as safety on a farm and transportation needs, as well as connecting with local or surrounding services, supports, family and friends.
“By supporting those care partners, we’re better able to offer an improved quality of life, and a more connected journey between the person experiencing dementia, and their family and friends.”
For, Carapinha, who upon graduation, joined the Society as a registered social worker, it’s those moments of connection, that make his job “amazing.”
One in particular stands out.
“My background is Portuguese, so whenever I have the opportunity to extend services in Portuguese, I do. One of my Portuguese clients, the caregiver, was having difficulty and becoming overwhelmed with the stresses associated with the dementia experienced by her partner. There was a rift of frustration and disconnection growing between the couple.”
Carapinha, having learned that emotional memory lasts longest and how powerful music can be in sparking that emotional memory, put on a piece of Portuguese music that would have been popular in his client’s younger days.
“The gentleman started singing the words. So I started singing with him, to try to encourage him. Well, he starts singing louder, and then, his leg starts tapping. Now, we’re both singing louder and louder, and suddenly his partner is now up in front of us, dancing.
“He sang, and she danced in front of me for about 20 minutes. That was a moment that I was privileged to witness — the authentic intimacy in this couple’s relationship. During that time, that was not about the husband having symptoms of dementia and the care partner not being able to cope and having a hard time. It was about them being a couple, before (dementia) created a bit of a rift.”
That’s what the Alzheimer Society does so well, he said. “We try to create the opportunity for those moments to exist in the person’s life. We do that through our support groups, we do that through one-on-one counselling, we do that through our educational programs in the community.
“And I think that if we can create those moments, those are the resources, that is the resilience that we can draw back on to help our clients continue forward with courage and strength in their journey with dementia.”