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Unsung heroes: understanding the weight of dementia caregiving (Blog)

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By: Divine Onyekaonwu, Brain Disorders Management student 2023 – 2024

Two women are sitting on a bench. The younger woman is warmly embracing the older woman.

Imagine this: you’re the steady hand guiding a loved one through a fog of confusion, their memories slipping away like grains of sand. This is the daily reality for dementia caregivers, a remarkable group whose unwavering dedication deserves a standing ovation.

Dementia, affecting millions globally, progressively diminishes cognitive functions, leading to significant impairments in daily life. Alzheimer’s disease is the most common form, accounting for 60-80% of dementia cases. As our population ages, the prevalence of dementia rises, presenting unique challenges for caregivers.

Four people of various ages are hugging each other warmly with their eyes closed.

The emotional toll can be immense, with caregivers often neglecting their own well-being as they witness the heartbreaking decline of a loved one. Feelings of grief, anger, frustration, and guilt are common threads in their experience.

Yet, caregivers are the cornerstone of support, sacrificing their own needs for the sake of their loved ones. According to the Alzheimer Society of Canada, family and friends provide a staggering 470 million hours of unpaid care annually. This translates to roughly 235,000 full-time jobs, highlighting the invaluable contribution of informal caregivers. The Canadian Institute for Health Information (CIHI) further emphasizes this point, estimating that a substantial portion of the $10.4 billion spent on dementia care in Canada in 2010 stemmed from unpaid caregiving.

Some of the challenges caregivers face include time management, balancing multiple responsibilities, ensuring appropriate care when unavailable, finding support from others, financial strain, and balancing their own well-being with the needs of their family.

Recognizing these challenges, many communities are stepping up to provide more services and bridge the gaps experienced by family caregivers.

Some service providers that bridge the gaps for caregivers and provide various services, such as in-home care, support groups and education, financial and legal assistance, and respite care, include:

  • Alzheimer Society of Canada – can help you learn more about our programs and services or find dementia-related information specific to your needs, whether you are living with dementia or caring for someone with dementia. They offer the education and resources to support you.
  • Bayshore HealthCare – Dementia Care Services – is one of Canada’s leading providers of home and community health care services, offering customized care for clients, patients, and their families.
  • Ontario Shores – Centre for Mental Health Sciences – Dementia – Resources and Support for Caregivers – Ontario Shores Centre for Mental Health Sciences (Ontario Shores) is a public teaching hospital that offers a variety of specialized assessment and treatment services for individuals living with complex brain-based illnesses.
  • The Key – provides long-term care for aging at home, offering personalized care to older adults and helping them live happier, healthier lives in the comfort of their own homes.

Please note: This is not an exhaustive list of service providers but rather an example of what is available in the community.

Father in wheelchair and young son on a walk. A carer assisting disabled senior man.

While the journey may be shrouded in fog, the love that dementia caregivers offer is a radiant beacon. They are the unwavering strength, the source of comfort, and the gentle guides on this path. Remember, you are not alone. By recognizing the challenges and seeking support, we can create a brighter future for both caregivers and those living with dementia. Together, let’s ensure their unwavering dedication is met with unwavering support. This means advocating for increased funding for dementia research and care, promoting workplace flexibility for caregivers, and challenging traditional gender roles in caregiving. Let’s break down the walls of isolation, bridge the gaps in resources, and ensure their burdens are not just recognized but significantly reduced. It’s time to honor their remarkable strength with a collective effort.