Contents
What is dementia?
Dementia is a condition caused by disorders affecting the brain. While Alzheimer’s disease is the most common form, there are other types that have similar and overlapping symptoms. Symptoms can include memory loss, difficulties with thinking, problem-solving or language, and changes in mood or behaviour.
Dementia is one of the most significant health crises of the 21st century. Every three seconds, someone in the world develops dementia. Over a quarter of a million Ontarians live with dementia today, a number that will only increase as the province’s population ages.
Costs associated with dementia include:
- medical care – prescriptions and increased emergency department visits or hospitalizations
- informal, unpaid care provided by a family member or friend
- social care, or in-home assistance by community care professionals
The Alzheimer Society provides information, supports and services to people living with dementia and their care partners. Twenty-seven Societies in Ontario provide assistance to more than 101,785 clients.
*At the time of survey distribution, the total number of Alzheimer Societies across Ontario was 29. Since that time, three Alzheimer Societies have unified, resulting in a total of 27 Alzheimer Societies across the province.
Over 240,000 Ontarians live with dementia today, a number that is expected to double within the next twenty years. Dementia doesn’t only affect those with the disease, it also impacts care partners, family members and friends.
What is dementia?
Dementia refers to a set of symptoms caused by disorders affecting the brain. Symptoms can include memory loss, difficulties with thinking, problem-solving or language, and changes in mood or behaviour. For those with dementia, symptoms are often severe enough that they affect a person’s ability to perform everyday activities.
The Alzheimer Society connects people living with dementia and their care partners to information, supports and services. There are 29 societies in Ontario that provide assistance to more than 85,000 clients.
Introduction
What is the impact of Alzheimer Society programming and services on care partners and those living with dementia in Ontario?
Does this impact have an effect on Ontario’s healthcare system?
In 2021, the Alzheimer Society of Ontario teamed up with Western University’s BrainsCAN to answer these questions. A survey was created to learn about the opinions and experiences of Alzheimer Society clients – care partners and those living with dementia in Ontario.
2,184 Alzheimer Society clients completed the survey.
1,912 were care partners.
272 were persons living with dementia
A large number of care partners and those living with dementia would recommend Alzheimer Society services to others.
Care Partner Quality of Life
The survey found that the most significant impact on a care partner’s quality of life is time for self-care. While 63.7% of care partners indicated they had time for self-care when the person they supported with dementia was independent, that number decreased to 33.8% when the person they supported needed a lot of support.
Overall, the survey found that the quality of life of care partners is impacted regardless of the level of support they provide.
Employment Impact
Impact of Dementia on Retirement
Of the survey participants, 62.9% of care partners were retired
- 15.9% of care partners indicated their caregiving duties influenced their decision to retire
- 1/3 of retired respondents under the age of 70 reported their role as care partner impacted their retirement decision
89.8% of those living with dementia identified as retired
- 12.5% of persons living with dementia indicated their diagnosis influenced their decision to retire
My wife was diagnosed with vascular dementia. I was teaching ESL full time when she was diagnosed. To attend more appointments and an education program at the Alzheimer Society, I started working part time for three months. As she continued to decline, I decided to retire in March, which was about a year earlier than planned.
Impact of Dementia on Work Productivity
Close to 60% of employed care partners noted their caregiving duties had negatively impacted their ability to be productive at work. They indicated missing an average of 19.6 days of work per year for caregiving responsibilities.
Extended Time at Home
79.4% of care partners and 76.1% of those living with dementia were able to live at home, or provide care at home longer due to Alzheimer Society support.
39.8% of care partners indicated Alzheimer Society support delayed their decision to access assisted living or long-term care by 1.38 years, resulting in a cost savings of $75,527.
28.4% of care partners and 20% of persons living with dementia noted they would have likely accessed long-term care at the time of taking the survey had it not been for the Alzheimer Society’s support.
She’s at a stage now where I don’t think she’d be at home – we wouldn’t be living together still – if it hadn’t been for our experience with the Alzheimer Society. It’s given us a little more time together.
Distress Intervention
33.6% of care partners who reported experiencing crises agreed that the Alzheimer Society helped them avoid a crisis.
An average of 2.11 acute interventions that likely would have led to the need for hospital care were avoided each year due to Alzheimer Society support.
Value of Alzheimer Society Support
The survey identified three ways in which Alzheimer Society support resulted in savings for Ontario’s healthcare system.
You think you understand the disease, but we learned so much attending programs with the Alzheimer Society. When I attend group sessions, other care partners share their strategies and I’ve seen how to manage situations in different ways. I’ve learned from others’ journeys and that helps us handle our own.
Resources
Alzheimer Society of Ontario Programs and Services
The Alzheimer Society of Ontario offers a variety of programs and services to help people living with dementia, care partners, and healthcare professionals.
Home and Community Care Support Services
Home and Community Care Support Services helps people get the care and support they need in their homes and communities.
Western University’s brain research registry that connects researchers with participants for health-related research at Western.
Funding for BrainsCAN is provided by the Government of Canada’s Canada First Research Excellence Fund (CFREF).
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