Alzheimer Society of Toronto
Our Impact Why We Exist
Our role is to offer support, information and education to persons with dementia, their families and their caregivers, to increase public awareness of dementia, to fund and promote research, and to advocate for services that respect the dignity of the individual.
Our Story What We Do
History of Organization
A small group of family caregivers and physicians founded the Alzheimer Society of Toronto in 1981, to help people with dementia and their families to cope with the devastating impact of this cruel disease. Marilyn McGuigan, whose mother had Alzheimer’s disease, was one of the founders, and the first Executive Director was Dan Andreae, a social worker whose father had Alzheimer’s. Marilyn and Dan continue to be associated with the Society as very generous donors and leading members of our Patrons Council.
The Society today has 18 skilled and dedicated staff members, a highly effective Board of Directors who care, and Patrons who are respected ambassadors for our cause. Our annual revenue of $2.3 million comes from individual and corporate donors who value the work that we do. The Ontario government provides about 8 per cent of our revenue. The Alzheimer Society is a federation of 70 separately incorporated offices across Canada. Alzheimer Toronto is centrally located and Yonge and Eglinton, sharing offices with Alzheimer Canada and Alzheimer Ontario.
There are around 39,000 persons with dementia in Toronto. This number is expected to increase by half in the next five years, and to double in a generation. Our challenge is to meet this rising tide and to mitigate the burden of dementia on individuals, and their families in our community.
Accolades and Accomplishments
Accolades are legion from families grateful for the education and assistance we have provided them through the long and difficult dementia journey.
Personal support workers provide front-line care to persons with dementia, helping them to bathe, dress, eat and walk. Our PSW training course helps them to understand the course of dementia and its impact on the person they are caring for, and teaches them how to provide the best quality care.
Our Programs How We Do It
Family education and support
- We offer free, confidential counselling to persons with dementia and their families, so they can learn about dementia, prepare for a difficult future and ensure an early link to the many community supports they will need as the disease progresses.
- We offer education sessions to family caregivers so they can learn how to provide the best care for their loved one at home, and delay for as long as possible placement of their loved one in a long term care facility.
- We offer a wide range of support groups whose members share experiences and learn from each other. And we train the personal support workers who care directly for people with dementia, at home or in residential facilities.
- We offer public information sessions on a wide range of topics in locations such as churches, public libraries and community organizations to increase awareness of Alzheimer’s and other dementias, and to reduce the stigma so often associated with this disease.
Information and resources
- Our attractive Resource Centre is open to the public during normal business hours. Our professional librarian maintains a current, multilingual collection of books, journals, videos, DVD’s and other materials on dementia care, and she is expertly able to find the answers to your questions on dementia and dementia care.
- We created and maintain the Toronto Dementia Network websitewww.dementiatoronto.org, an easy-to-navigate inventory of more than 1,200 distinct dementia services offered by 300 organizations in Toronto.
Training for personal support workers
- We offer a free, nine-hour training program for personal support workers caring for persons with dementia who live at home or in residential care. We graduate about 350 students each year, and their family or institutional employers have told us that there is a significant improvement in the quality of care provided by graduates of our PSW training program. This program received a Vital Ideas grant in 2009.
Personal Support Worker Dementia Certificate (Education and Awareness)
In Toronto, more than 20,000 personal support workers provide direct, personal care to persons with dementia. The quality of care that they provide is cited as the single most important factor in the quality of life of for persons with dementia.
The Alzheimer Society of Toronto offers a free PSW training course 25 times per year at our office at Yonge & Eglinton, and at other locations across Toronto. There are three components to the training program:
- A free nine-hour training course in three modules of increasing complexity, to teach personal support workers about the disease, its symptoms and how it affects the person they are caring for, how to communicate with someone who is no longer able to speak, and how to deal with challenging behaviours such as agitation, aggression and wandering. Some 323 students successfully completed our nine-hour training program in 2009-2010.
- An annual PSW continuing education day with a focus on in-depth learning of specialized topics
- A PSW corner on our website for online interactive support, a list of web resources and a calendar of networking opportunities to this often-neglected group of workers.
The total cost of our PSW Training program is over $150,000 per year, funded in part by the Ontario government, but mostly by private donors. Although our training course is offered to students at no charge, training each student costs the Alzheimer Society $300 each.
Funding and Program Partners
Canada Life, Great West Life and London Life, in a wonderful team effort have generously supported the PSW corner.
Our PSW training program improves the quality of care that personal support workers provide to persons with dementia. An independent evaluation of our program found that: The current nine-hour Enhanced Training Program for Personal Support Workers of Persons with Dementia is valued and respected by PSWs, managers and supervisors from long-term care facilities, community and home care agencies, and family caregivers, as it effectively improves care and quality of life for persons with dementia, by teaching PSWs the knowledge and skills to provide patient-centred care. While key informants were highly enthusiastic about this course and provided positive feedback, they also had suggestions for improvement that could be effectively incorporated, if more funding is available.
Toronto's Vital Signs® indicator(s) addressed by Program
“Toronto’s seniors will outnumber its children within twenty-five years; 53% of all seniors (65 and older) in the Greater Toronto Area (GTA) live in Toronto; 13% of the City population are seniors, their percentage (of the total population) growing by 2% since 1986.” (Toronto’s Vital Signs®, 2008)
Caring for someone with dementia is a physically and emotionally demanding job. Immigrants, mainly women, find employment in this field, working long hours for poor pay, and often holding down several jobs. The Alzheimer Society of Toronto’s free Personal Support Worker (PSW) Training program increases the employment prospects for PSWs, teaching them on-the-job skills and expanding their social support network.
Here is what one personal support worker wrote to her instructor after graduating from PSW training course:
“When I first started working with this client, I dreaded going to her house. She was a petite woman in her 80s, she had Alzheimer’s disease and she was completely blind. She was frequently angry and she hit me with her cane when I tried to help her with personal care. She also had a lot of energy and she was constantly moving around and she often tried to climb on things. Needless to say, this was a problem especially with the blindness. She lived with her daughter who was exhausted by the demands of caring for her mother and really needed the respite I was there to provide.
From your course, I learned how to help this lady calm down, at least for a while. I would get her to sit really close beside me on a big comfy couch. I would roll up my sleeve and she would sit there quietly and stroke my arm very gently over and over again. She really seemed to need physical touch and what comforted her was touching someone else as opposed to being touched. She would sit with me sometimes for almost an hour before she got up and started moving again. It got to the point that I made sure to wear a short sleeve shirt when I went to her house.
After having her as my client for a while she even seemed to recognize my voice. When I arrived, I would say, “Do you know who this is?” and a big smile would break across her face. I knew I could make her happy and that made me look forward to going to her house.”
What You Can Do
Activities a donation will support
The 2009 Vital Ideas grant enhanced our support and engagement of personal support workers, and enabled us to devise self-evaluation metrics to better assess our impact, effectiveness and set targets for ongoing improvement. Three key activities were set in motion; 1) Creation of a PSW Corner on our website, with an interactive message board and library of electronic documents selected for PSW’s. 2) Production of a professional quality DVD of PSW continuing education day which moved us to develop our streaming and podcasting capability. 3) An external qualitative and quantitative evaluation of the benefits of all components of our PSW Training Program was completed.
The evaluation report recommended a number of areas for improvement. We will implement these recommendations as resources permit.
Any donations to our Personal Support Worker training program will be gratefully received and will make a real difference in the lives of the workers, and the people with dementia that they care for.
An independent assessment found that our training program definitely improves the quality of care that PSWs provide to people with dementia. Our annual forum provides a rare opportunity for PSW networking and professional development, and the videotape of the presentations makes the learning available to those who could not attend. Our PSW Corner is now available as a networking, validating and learning resource for PSWs everywhere. And 317 PSWs graduated from our nine-hour dementia training course this year. We are thrilled with the growing importance of our PSW training program, and will continue to make improvements in the coming year.