January is Alzheimer’s Awareness Month in Canada. Just how aware are we in Canada? And what do we really need to know to plan for a growing dementia population effectively?
The Cambridge Dictionary defines awareness as “the knowledge that something exists or understanding of a situation or subject at the present time, based on information and experience.” While estate planning professionals often acknowledge the upward trend of Alzheimer’s cases and use this as an example of why their clients should plan for future care, do we truly have an appreciation of the magnitude of what we are facing? The short answer is no.
Across the world, the number of Alzheimer’s cases is rising, and the changing profile in Canada is alarming. The Alzheimer’s Society of Canada is an excellent resource for information, and in their first Landmark Study Report in 2022, they described both the current and future situations. There are several subtypes of dementia, but Alzheimer’s is the most common, affecting more women than men in later life. More than 600,000 Canadians are currently living with dementia. By 2030, that number will almost double and is predicted to be over one million. By 2050, the numbers will nearly triple to 1.7 million Canadians living with dementia. [1]
The Ontario Medical Association recently estimated that 50% of dementias go undiagnosed, and combined with the health human resources issues we are currently facing, patients and their families are not accessing drug therapies to delay the disease or adequately planning for the integrated supportive care that will be required. Recent reports estimate that the number of Canadians without access to primary care physicians or nurse practitioners has soared to 6.5 million.[2]
Most Canadians with Alzheimer’s disease receive their care from family members or friends. According to the Landmark Study Report, caregivers spend on average 26 hours per week assisting someone with dementia. This includes assistance with Activities of Daily Living such as food preparation, dressing, and toileting. Other supportive activities may include banking, paying bills, attending and coordinating doctor appointments, for example.
Alzheimer’s and dementias are complex conditions where clear care pathways are not well defined. Care partners struggle to deal with various circumstances, including diminished capacity. Management of the care situation very much depends on the individual, their environment, and the type of expert support and resources they can obtain. Caring for a person with dementia is more stressful, and frequently, care partners themselves become secondary patients due to the physical and emotional toll.
Family members and attorneys for personal care are often ill-prepared for their role and surprised the caregiving role may go on for 10 or 15 years with increasing hours required over time as the disease advances. People diagnosed with Alzheimer’s disease typically live 8 to 10 years after diagnosis; however, with fewer co-morbidities, they often live longer. My personal experience is that my elderly mother progressed through the various Alzheimer’s stages and died at 100 years old, 15 years after diagnosis.
As dementia progresses, Attorneys for Personal Care and family members invariably struggle with the question of whether the person can safely remain at home. Round-the-clock care in the home can be costly. Current costs for a Personal Support Worker range from $31.00 per hour ($744/24h or $22,320/month) to $45.00 per hour ($1080/day or $32,400/month) plus HST.
Many elderly people with financial resources will express their wish to remain in their homes as long as possible. When further support is required, they may decide to move to a private retirement home with “memory care” facilities. There is no standardization of what “memory care” delivers in the private retirement industry, and there is a broad range of programs and costs. It is wise for family members to seek expert advice in this area, or they may find that as the disease progresses, they must move their loved one again. In some cases, with late-stage dementia, the care component in retirement residences becomes so costly that families make applications to long-term care facilities for 24-hour nursing care.
Without financial resources, many families face caring for their family at home while waiting for a long-term care placement. According to the Ontario Long-Term Care Association, 627 licensed long-term care homes operate across Ontario, with 76,000 spaces available for residents. There are currently an estimated 40,000 people on the waiting list for long-term care, and on average, seniors will wait six months for admission and some up to 2.5 years. Ontario is estimated to need over 30,000 beds to address the current waitlists and an additional 48,000 additional spaces by 2029 to meet the demand. [3]
In summary, the reality is that we are facing a crisis in Alzheimer’s and dementia care. Health human resources across the healthcare system cannot keep up with the ever-increasing demand for dementia diagnosis and care, and Canadians are only beginning to realize the extent of the crisis. As family members and planning advisors, one of the first steps we can take is to educate ourselves and our clients on the realities of care management and then focus on personalized care planning and how to pay for it.
[1] https://alzheimer.ca/en/research/reports-dementia/landmark-study-report-1-path-forward
[2] https://www.cbc.ca/news/politics/canada-popuation-booming-family-doctor-access-1.7087794
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