Contents
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.
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.
Are Alzheimer Society programs benefiting their clients and the healthcare system?
While the Alzheimer Society has anecdotal evidence of their positive impact on families, the questions remained:
- how do the majority of care partners and those living with dementia engaged with Alzheimer Society programs feel about their local organization?
- what impact do these programs have on the healthcare system in southwestern Ontario?
The Alzheimer Society of Ontario (ASO) and Alzheimer Society London and Middlesex (ASLM) teamed up with BrainsCAN, Western’s neuroscience research initiative, to answer these questions. BrainsCAN developed an analytical survey method for six Alzheimer Societies located in the South West Local Health Integration Network (SW LHIN) to gain insights and data on their clients’ experiences. The six societies included:
- Alzheimer Society of Elgin-St. Thomas
- Alzheimer Society of Grey-Bruce
- Alzheimer Society of Huron County
- Alzheimer Society London and Middlesex
- Alzheimer Society of Oxford
- Alzheimer Society of Perth County
Overall Findings
521 clients of the 6 Alzheimer Societies completed the survey.
457 were care partners.
64 were persons living with dementia.
89% respondents indicated they had a positive attitude toward their local Alzheimer Society.
Attitudinal questions were separated into four categories:
- Learning and informational: The Alzheimer Societies provide information about dementia to help care partners and those with dementia understand the neurological disease(s).
- Emotional support: The Alzheimer Societies provide emotional support (counselling, sharing stories, etc.) to care partners and those living with dementia.
- Capacity for care: The Alzheimer Societies help care partners and those living with dementia increase their skills in living well with the disease.
- Interventional care: The Alzheimer Societies support care partners and those living with dementia through crisis situations.
While care partners and those living with dementia benefited from all four categories, they had consistently positive attitudes toward the informational and emotional support provided by the Alzheimer Societies.
The Minds in Motion program is so helpful because you get the social interaction, the mental stimulation and physical activity all in one program.
25% of respondents were new – they had participated in Alzheimer Society programming for less than a year.
Quality of Life
The survey found that the quality of life for care partners drops once the person they’re supporting moves from the independent to mid/moderate stage of dementia.
Employment Impact
Dementia’s impact on retirement
69% of care partners who filled out the survey were retired.
- 70% of care partners in their 50s retired in part because of their care partner role
93% of those living with dementia who filled out the survey identified as retired.
- 15% of those living with dementia noted their symptoms impacted their decision to retire
My wife, Ruth was diagnosed with vascular dementia in January of 2018. I was teaching ESL full time in the elementary schools 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 Ruth continued to decline, I decided to retire in March, which was about a year earlier than planned.
Dementia’s impact on employment
50% of employed care partners noted their caregiving duties had negatively impacted their ability to be productive at work. They indicated missing 10 days of work per year for caregiving responsibilities (based on estimates by the employed care partners on their days of missed work).
Extended Time at Home
75% of care partners and those living with dementia reported that the Alzheimer Society helped them increase their skills as care partners, or increased their ability to better manage living with dementia.
72% of those respondents were more confident living at home, or providing care at home, due to the Alzheimer Society’s involvement.
Preliminary self-reported data suggests that Alzheimer Society support increases their clients’ ability to live at home for an additional three years. With an Ontario budget investment of $54,730* per year for one long-term care bed, $164,190 was saved for each person who indicated an additional three years of time spent living at home.
Susan is 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.
Crisis Avoidance
53.1% of care partners and 51.8% of persons living with dementia who reported experiencing crises agreed that the Alzheimer Society helped them avoid a crisis.
Care partners noted that the Alzheimer Society’s support helped them avoid an average of 2.7 crises each year with 1.4 of those crises likely leading to hospital care. For every 1,000 care partners, 531 avoided an average of 1.4 hospital crises per year, saving the healthcare system $4.2 million annually (based on estimates by care partners on perceived crisis avoidance).