As a caregiver for my mother who suffered from Alzheimer’s disease, I understand the tremendous burden that falls on the shoulders of those who care for loved ones with this debilitating disease. I was propelled into the “sandwich generation” when my mother was diagnosed at the age of 57, and I had a newborn at the time. I took care of her for 20 years until she passed in 2020. During that time, I am now reluctantly an expert on Alzheimer’s disease and its impact on both patients and their caregivers.

Alzheimer’s disease is a progressive neurological disorder that affects a person’s memory, cognitive function, and ability to perform everyday activities. It is the most common form of dementia, accounting for 60 to 80 percent of all cases. The disease is characterized by the formation of plaques and tangles in the brain, which disrupts communication between brain cells and leads to their death. Alzheimer’s is a fatal disease, and there is currently no cure. Alzheimer’s disease is asymptomatic for 10 years prior to diagnosis, making it difficult to detect early on. It is typically diagnosed in people over the age of 65, but early-onset Alzheimer’s can affect people as young as their 30s or 40s. In fact, according to the Alzheimer Society of Canada (2021b), 16,000 Canadians under the age of 65 are living with dementia.

The burden of Alzheimer’s disease falls heavily on the caregivers of those with the disease. According to the Alzheimer’s Association, there are approximately 11 million informal caregivers in the United States providing care for people with Alzheimer’s disease or other forms of dementia. These caregivers provide unpaid care worth an estimated $257 billion annually. The majority of caregivers are family members, with spouses, adult children, and other relatives making up the largest percentage. Alzheimer’s disease is a progressive brain disorder that affects memory, thinking, and behavior. It is the most common cause of dementia, accounting for 60-80% of all cases (Alzheimer’s Association, 2021). In Canada, an estimated 500,000 people are living with Alzheimer’s or another form of dementia, and this number is expected to double by 2031 (Alzheimer Society of Canada, 2021a).

When someone is diagnosed with Alzheimer’s disease, it not only affects the person with the disease but also their family and caregivers. The burden of caregiving falls heavily on informal caregivers, such as family members, who provide the majority of care for people with dementia. According to the Alzheimer Society of Canada (2021c), 70% of people with dementia are cared for in their own homes, and 75% of caregivers are family members.

Caring for someone with Alzheimer’s disease can be physically, emotionally, and financially draining. Caregivers often have to give up their careers, social lives, and hobbies to provide care for their loved ones. They may also experience stress, anxiety, depression, and other health problems due to the demands of caregiving. One of the most significant challenges caregivers face is the unpredictability of the disease. Alzheimer’s is a progressive disease, and its symptoms and progression vary from person to person. Caregivers must be prepared to deal with a range of behaviors, including confusion, agitation, and aggression. They must also be able to adapt to changes in their loved one’s abilities, such as memory loss and difficulty with everyday activities.

Another challenge for caregivers is the lack of support and resources available to them. Many caregivers feel isolated and overwhelmed, and they may not know where to turn for help. Caregiving can also be financially challenging, as many caregivers have to provide care without pay or with minimal compensation. This can lead to financial hardship and limited access to healthcare. Despite the challenges, caregivers play a critical role in supporting people with Alzheimer’s disease. They provide companionship, assistance with daily activities, and emotional support. They also help their loved ones maintain their dignity and independence for as long as possible.

The impact of caregiving on family members can be significant, both emotionally and financially. Many caregivers experience burnout, stress, depression, and other health problems. They may also have to give up their jobs or reduce their work hours to provide care, which can have a negative effect on their financial stability. According to a report by the Alzheimer Society of Canada (2021d), 43% of caregivers of people with dementia had to reduce their work hours or stop working altogether, and 30% reported financial strain.

Despite the significant impact of Alzheimer’s disease on families and caregivers, there is limited support available in Canada. The Alzheimer’s associations in Canada are limited and do not work in unison, resulting in a lack of a universal approach to resources. The local health integration network or LHIN, if a caregiver qualifies, provides limited respite support and resources for caregivers. This lack of support is a significant problem that needs to be addressed.

One of the reasons why there is a lack of support for Alzheimer’s disease is the lack of a cure. Although research is ongoing, there is currently no cure for Alzheimer’s disease, and treatments only help to manage symptoms. This has resulted in not enough money going into research and support, and everything falling onto the caregivers or family caregivers. The trajectory of the disease is such that caregivers are in for a huge problem. After a person passes away from the disease, most of the caregivers that have experienced burnout while dealing with the disease or become ill themselves because of being hyper-focused on their loved one with the illness, may not have the strength to advocate for the disease.

In conclusion, Alzheimer’s disease is a devastating disease that places a heavy burden on caregivers. Caregivers are the unsung heroes of Alzheimer’s disease, providing invaluable support to their loved ones. It is crucial that caregivers have access to the resources and support they need to provide quality care for their loved ones while also taking care of themselves. The lack of support available for caregivers in Canada is a significant problem that needs to be addressed. As the number of people with dementia continues to increase, it is essential to increase support for caregivers and to invest in research to find a cure for this debilitating disease. It is time for society to recognize the critical role caregivers play in the lives of people with Alzheimer’s disease and to provide them with the support and resources they need and deserve.

References:

Alzheimer’s Association. (2021). What is Alzheimer’s? https://www.alz.org/alzheimers-dementia/what-is-alzheimers

Alzheimer Society of Canada. (2021a). About dementia. https://alzheimer.ca/en/about-dementia

Alzheimer Society of Canada. (2021b).