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30-year Alzheimer's volunteer says seek help as early as you can

Susan McLean says the goal is for people to 'live well with dementia'

When her mom was diagnosed with dementia more than thirty years ago, Susan McLean felt in over her head. 

She turned to the Alzheimer Society of Sault Ste. Marie and Algoma District, where her mom was quickly paired with a recreational therapist who would visit her at home each week. McLean saw firsthand how her mother benefitted from the therapy, but it also helped her as a caregiver. 

“Thirty years ago, [The Alzheimer Society] was not as prominent as it is now,” she remembers. “The fact there was this place you could go to get information, and understand what was going on with my mom — It was very helpful to our family.”

The weekly home visits and the introduction to other area services (like Adult Day Programs) made a huge difference for her mother; and the connection to other caregivers was a lifeline for McLean.

Since that initial contact, for the past three decades, McLean has helped with the organization. She started off wanting to give back (all of the Alzheimer Society programs and services are provided at no cost to the client and their family) so she jumped into fundraising efforts for the annual Walk for Alzheimer’s. Since then, in addition to volunteering for programs, fundraising and event planning, McLean has served on the board of directors, and currently leads volunteer coordination.

There are currently 2,900 people in Sault Ste. Marie and Algoma accessing Alzheimer Society services. McLean figures the number of people living with some kind of cognitive impairment is double that; “they just haven’t found us or we haven’t found them, yet . . . It’s almost 5 per cent of the population.”

The Alzheimer Society provides information, resources, education, support, counseling, in-home recreation therapy, and volunteer visiting.  

In order to keep the programs and services going, the organization has to raise about $500,000 a year (50 per cent of their operating budget).

“As much as we’re looking for volunteers, we also need people to participate in our events, like the Ladies’ Night Out Event and the Luxurious Ladies Raffle and the IG Wealth Management Walk for Alzheimer’s,” says McLean. “With a small percentage going to a research grant, most of what we fundraise goes to direct service in Sault Ste. Marie and Algoma District. 

While McLean finds volunteer coordination rewarding, she especially enjoys her time helping out with the Minds in Motion® program, geared toward care partners and individuals with early to mid-stage signs of Alzheimer’s disease or other dementias. The program incorporates both physical activity and mental stimulation in a relaxed, social setting.

“The caregivers get to meet other caregivers and form a bond; they become friends, which is really great,” she says. “We have afternoon and evening caregiver support groups, and a lot of people who come to the Minds in Motion program end up coming to the support groups.”

Often, people are reluctant to seek help initially. “Lots of times, people want to protect the person who has the memory loss; they don’t want others to know this isn’t the same person they were a few years ago.”

The Alzheimer Society aims to erase some of that stigma, and let people know they’re not alone. “It’s getting past all that and knowing it’s OK,” says McLean, “because when you come to the Alzheimer Society, you’re going to meet people who are going through the same thing."

For caregivers in particular, early and ongoing support is crucial. “Lots of times — your friends don’t really know how to support you in [a caregiving role],” says McLean.

“Certainly, as a person progresses through the disease, more supports need to be put in place, more conversations need to happen. Is this person going to continue to live at home? Are they going to long-term care? [We work] with caregivers to let them know what their options are,” she says. 

For many, dealing with dementia isn’t how they envisioned their retirement years. “Things change, they may not be doing those things [like travel and activities], and it’s a huge adjustment for both parties.”

The support the Alzheimer Society gives can safeguard in preventing a crisis. “[We] watch and support the caregivers; look for signs of burnout,” she says. “The numbers [of those living with cognitive impairment] are exploding; so if something were to happen to the caregiver; the person with dementia could be completely on their own, or with someone who doesn’t know how to properly care for them.”

“We have programs that are here to help. We don’t just give you a pamphlet and say; read this, here’s some tips. We want to be working with the families. It’s a relationship.”

As part of that, education is a key component. They provide up-to-date, comprehensive information in their Learning Series, which offers an overview of the disease, how to manage behaviours and more. “There are a lot of positive things we can do if families come in early. We’re all about erasing the stigma and having people live better lives while they’re going through the journey with dementia.”

During difficult times, programs like Minds in Motion can lessen the load. “The caregiver and person living with dementia are both coming together; it’s people that have been together for a long, long time. Some people have been married 65 years. There’s a lot of reminiscing. You just see the love and the care in couples that have that kind of longevity,” she says. “There are also musicians in the group, they’ll bring their harmonicas, guitars, violins. It’s a wonderful program. I’m just so happy that I can help support that. If I wasn’t here and I wasn’t volunteering, there would be a lot of great people I missed out on meeting.”

“For those with dementia and their families; I would say come in early. I can’t say that enough. If there’s a need in your family, if you require service, come and see us so that we can help. We want people to live well with dementia.”

The Alzheimer Society of Sault Ste. Marie & Algoma District is located at 341 Trunk Road. You can help by becoming a volunteer, participating in events (like the January Door-to-Door campaign), the IG Wealth Management Walk for Alzheimer's on Jan. 26th at White Pines C&VS, or by making a donation.