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Alzheimer Society of Sault Ste. Marie & Algoma District
By Nicole Zummach
July 28, 2008
SAULT STE. MARIE, ON // There are very few of us who can say we haven't been touched by the effects of Alzheimer's disease and dementia. Whether it's a beloved grandparent, our own mother or father, a neighbour, or a colleague, the impact of these conditions is far-reaching. And statistics show that the number of people with dementia continues to climb. While doctors and scientists work to better understand the disease and its causes, organizations like the Alzheimer Society of Sault Ste. Marie & Algoma District are tackling the effects of the disease, one person at a time.
CharityVillage spoke with executive director Carolyn Cybulski about the agency's award-winning outreach program, its efforts to raise awareness and reduce the stigma that surrounds Alzheimer's, and the increasing prevalence of the disease in Canada.
CharityVillage: Most people have probably heard of the Alzheimer Society at one time or another. What would they be surprised to learn about your organization? What are the common misconceptions that you encounter?
Carolyn Cybulski: Probably the greatest misconception is that we deal only with people with Alzheimer's disease. I think it's really important that the general public realize that although we are called the Alzheimer Society, we really try to support people who are affected by all kinds of dementia. Very often, the problems are quite similar regardless of the type of dementia. I would really like people to know that we are here for anyone who is experiencing any type of dementia.
CV: Is the aging of the baby boomer generation beginning to impact your organization?

CC: We are certainly seeing an increase in the number of people we see - people seeking both support and education - and we're expecting that to continue to rise. We're thinking that the number of people with Alzheimer's disease will approximately double by the time all baby boomers reach their senior years. I believe 2031 is the year they cite. So we are seeing a very definite increase every year.
That is really huge, and all agencies that deal with the senior population really need to be preparing for it. Ontario was quite fortunate in the late nineties when the Ontario government formed an Alzheimer strategy and put a lot of resources into the management of Alzheimer's disease and related dementias. So we have some really good, strong education support programs, although it will never be enough. I think a lot of agencies feel that. No matter what we get it will never be enough, but it has really helped us to try to put resources into place.
CV: Beyond funding, what is the biggest challenge you face right now?

CC: You know, it's probably still the stigma of the disease. Alzheimer's disease is not something that people want to talk about. When we do health fairs - and we're one of many different health agencies with a booth - a lot of people tend to avoid our booth. I think it's just a real fear of that stigma of mental illness, and being worried that people will look at you differently if you have the disease.
CV: What support do you provide to help people deal with that issue?

CC: We have support programs for both people with the disease, to try to cope with that, and for their families. But a really big strategy to try to reduce the stigma is public education. The more that we can talk about it - and talk about it as a disease, and what happens in the brain, and how we as a society can interact in a positive way with people with dementia - that, for me, is the greatest way that we are going to reduce the stigma.
CV: Elder abuse is another issue that people are becoming more aware of. Does the Alzheimer Society do any work in that area?

CC: We are a big partner with our local elder abuse awareness group. We actually were the lead agency for an awareness project that happened several years ago. It was a year-long public awareness campaign to try and raise the profile of elder abuse and make people more aware of it. We, as an agency, occasionally see cases of abuse but they are often in the area of neglect. And oftentimes unintentional neglect; perhaps family members just don't realize the level of cognitive deficit that their loved one has.
There needs to be a lot of social support because sometimes elder abuse happens when the caregiver is at their wits end, totally stressed and exhausted. That's not an excuse for elder abuse, but it could be a contributing factor. So, we need to make sure that the family caregivers have support, have respite, have knowledge about the disease and its treatment so that we can help them. We know that Alzheimer's disease is a disease that, for much of it, is cared for in the home. It's usually only toward the later stages of the disease that the person goes into long-term care.
CV: You received the Donner Award for excellence in the delivery of social services for people with disabilities, rather than for services to seniors.

CC: Yes, we chose that category [rather than the delivery of services to seniors category] because it's not just seniors that we work with. There are people who don't fall into the seniors category. And we applied with a particular program - our in-home recreation therapy program. It's one that we are really proud of. Very few other Alzheimer chapters have such a program, and in our community it is unique. We really believe that one of the cornerstones of dementia care is appropriate activation and stimulation. And that's coming to the fore more and more. We're hearing all the time that the more you can stimulate your brain and your body, you might slow down the progress of the disease.
We actually started that program before too much of that research started coming out. We were just really interested in the whole quality of life aspect and what we could do to help people who were still at home, but who - for whatever reason - weren't able to go out to formal day programs where there is a lot of activation stimulation happening. They are great programs and we encourage any client to go to those, but sometimes people are unable or unwilling to go to [day programs] and we wanted another option.
What the recreation therapist does when she first goes in to do an assessment of hobbies, past recreational pursuits, etc. is she finds out what interests [the client] has or had. Say, for example, that the person was an avid cribbage player and the family is saying he's just not interested anymore. Maybe the person no longer has the initiative to get out a deck of cards, but if the board is set up and the cards are dealt and put in the person's hand, he will pick it up and go. Or maybe the problem is with the mechanics of the game; perhaps they can't really understand how the game is supposed to work. Or it might simply be that there is no interest anymore. Then it's up to the recreation therapist to come up with new or different types of hobbies or activities.
CV: How do you know you are making a difference in your community?

CC: That's a very good question, and I think it's something that organizations always have to be asking themselves. We have many different measurement systems. We look at whether people are accessing our services and what kind of feedback we are getting. We do a lot of evaluations and feedback from people who participate in our services. At least annually, all of our clients are asked to evaluate our services. I also think that your recognition within the community is measured through the success of your fundraising. If people see you as a service that contributes to the community and provides high-quality programs, I think that you have a better chance of being successful with your fundraising.
CV: What's next for your organization?

CC: We are going to continue on with our journey, trying to provide services to all points of our district. It is a challenge, but we are determined to increase accessibility to our services. Also, we're trying to increase partnerships, and I guess that goes along with trying to increase the reach of our services. We're exploring different ways to do this. We're going to partner with whoever we can to make sure that the service is accessible, and hope that the people who need the service can get it.
Carolyn Cybulski has been with the Alzheimer Society since 2001, and has worked in the nonprofit sector her whole career. For more information about the society, visit: http://www.alzheimeralgoma.org.
Would you like to see your organization in the Spotlight? E-mail Nicole at editor@charityvillage.com with your suggestions.