This is a series of articles based on the wonderful report created by the Alzheimer Society of Canada, called the Many Faces of Dementia in Canada (2024). In six parts, we will do a deep dive into the latest findings about dementia, and the impact on our families and communities.
Part 5: Addressing Care Inequities
Caring for a loved one with dementia is challenging, but for Indigenous and racialized communities, these challenges are often compounded by systemic barriers to healthcare access, culturally unsafe environments, and a lack of tailored resources. As Canada’s population becomes increasingly diverse, it’s vital to address these inequities to ensure that all individuals and families can access compassionate, inclusive dementia care.
This article delves into the unique experiences of Indigenous and racialized populations in dementia care, exploring the factors that contribute to inequities and the strategies needed to bridge the gap.
Understanding the Scope of Inequities
Dementia in Canada’s Indigenous Communities
Indigenous populations face a disproportionately high risk of developing dementia due to historical and ongoing systemic issues. Key factors include:
- Higher rates of diabetes, cardiovascular disease, and depression—known contributors to dementia risk.
- Stress from colonization, residential school trauma, and systemic racism, which negatively impact brain health.
- Limited access to culturally appropriate care in both urban and remote areas.
By 2050, the number of Indigenous people living with dementia in Canada is projected to increase by 273%, a higher rate than the general population.
Dementia in Racialized Communities
For racialized groups, dementia prevalence is also rising, driven by demographic shifts and systemic disparities. Key challenges include:
- Language barriers and limited availability of multilingual services.
- Poorer quality of care due to implicit and explicit racial bias within healthcare systems.
- Financial and logistical hurdles, including the cost of care and transportation.
By 2050, dementia diagnoses among people of Asian, African, and Latin American descent in Canada are expected to increase significantly, highlighting the need for targeted interventions.
Factors Contributing to Inequities
Social Determinants of Health
Health outcomes are deeply influenced by non-medical factors, such as income, education, housing, and social support. Indigenous and racialized communities often face disadvantages in these areas, creating cumulative risks for dementia.
Racism and Discrimination in Healthcare
Systemic racism manifests in several ways:
- Delayed or missed diagnoses due to bias or mistrust.
- Fear of discrimination, which deters individuals from seeking medical help.
- Cultural insensitivity in care settings, leading to a lack of trust and poor patient-provider relationships.
Culturally Inappropriate Care
Standard diagnostic tools and treatment approaches often fail to account for cultural differences in how dementia symptoms are expressed or understood. For example:
- Indigenous communities may view dementia as part of the natural aging process, which can delay diagnosis and intervention.
- Certain behaviors associated with dementia might be misunderstood due to cultural differences in expression.
Barriers to Accessing Care
1. Geographical Challenges
Many Indigenous communities are located in remote areas with limited healthcare facilities, requiring travel to urban centers for diagnosis and treatment.
2. Language and Communication
A lack of interpreters and culturally sensitive communication can prevent individuals from fully understanding their diagnosis or treatment options.
3. Economic Barriers
The cost of caregiving, combined with lower average incomes in some communities, limits access to paid services and resources.
4. Stigma
Fear of stigma within families or communities can discourage individuals from seeking help, particularly in cultures where elder care is viewed as a family responsibility.
Toward Equitable Dementia Care
1. Culturally Safe Care
Healthcare providers must create environments that respect and integrate cultural values, traditions, and knowledge. Strategies include:
- Hiring Indigenous and racialized professionals to serve as care providers and navigators.
- Incorporating traditional practices, such as smudging or ceremonies, into care plans for Indigenous patients.
- Offering dementia education workshops tailored to specific cultural contexts.
2. Training and Awareness
Mandatory cultural competency and anti-racism training for healthcare workers can help reduce bias and improve patient experiences. This includes:
- Understanding the impact of colonization and systemic inequities on Indigenous health.
- Recognizing how cultural norms influence dementia symptoms and caregiving practices.
3. Addressing Structural Barriers
Governments and organizations can implement policies to reduce disparities by:
- Expanding healthcare services in rural and remote areas, including mobile clinics.
- Providing subsidies for transportation and caregiving costs.
- Advocating for affordable housing and community support services.
4. Indigenous-Led Research and Care
Indigenous leadership is essential for developing solutions that honor the diversity of First Nations, Inuit, and Métis communities. Promising initiatives include:
- The Canadian Indigenous Cognitive Assessment (CICA), a culturally adapted tool for dementia diagnosis.
- Community-led programs that combine traditional healing with Western medical practices.
5. Inclusive Data Collection
Accurate and disaggregated data on dementia prevalence and care experiences within racialized communities can inform better policy and programming.
Practical Tips for Caregivers in Racialized Communities
1. Seek Culturally Relevant Resources
Reach out to organizations like the Alzheimer Society of Canada, which offers materials in multiple languages and culturally adapted programs.
2. Advocate for Your Loved One
Speak up about their cultural preferences during medical appointments and insist on culturally safe care.
3. Build a Support Network
Connect with local or virtual support groups for caregivers in your community.
4. Educate Yourself
Learn about your loved one’s cultural beliefs around aging and health to navigate care with sensitivity.
Stories of Resilience
Indigenous Perspectives
Dana, a Métis woman, reflects on caring for her brother with dementia: “He shares his fears of being alone and yet refuses help, especially from anyone outside our community. It’s a reminder of the mission school traumas he carries.” Her story highlights the importance of culturally safe spaces in urban healthcare settings.
Racialized Families
Ama, originally from Ghana, struggled to find a care provider who understood her father’s preferences for traditional foods and practices. Her persistence eventually led to a partnership with a culturally sensitive home care agency, demonstrating the impact of advocacy.
The Path Forward
Equitable dementia care is not just a moral imperative—it’s a practical necessity as Canada’s aging population becomes increasingly diverse. Addressing inequities requires collaboration among healthcare providers, policymakers, and communities to create systems that honor every individual’s dignity and identity.
By advocating for culturally safe care and supporting initiatives that address systemic barriers, caregivers can contribute to a future where no one is left behind in the dementia journey.
In Part 6 of this series, we will discuss planning for the future after receiving a diagnosis and the financial, emotional and legal preparations families can make.
Home Instead can provide additional support to your family and provide respite for those doing the caregiving. Give us a call today at 416-972-5096 to find out more about our services and how we can help.
Source: The Alzheimer Society of Canada (2024). The Landmark Study: People. The Many Faces of Dementia in Canada. The Alzheimer Society of Canada. https://alzheimer.ca/en/the-many-faces-of-dementia-in-canada-landmark-study-volume-2
