Translating the attitudes and experiences of care partners and persons living with dementia into quantifiable measures
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.
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.
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.
While the Alzheimer Society has anecdotal evidence of their positive impact on families, the questions remained:
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:
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:
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.
25% of respondents were new – they had participated in Alzheimer Society programming for less than a year.
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.
Dementia’s impact on retirement
69% of care partners who filled out the survey were retired.
93% of those living with dementia who filled out the survey identified as retired.
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).
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.
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).