Systemic Challenges Faced by Caregivers: Understanding and Addressing the Needs

Being a family caregiver is a challenging and often isolating role. There are a lot of systemic challenges that family caregivers face, especially in diverse communities making the role even more difficult than it should be. In this article, we aim to shed light on minority caregiver experiences and highlight the need for policy changes to address their unique needs. We believe that by truly understanding and taking steps to address these challenges, we can create a more fair and inclusive caregiving experience in California. Let’s dive in.

Familism and Caregiving in Diverse Communities

In many communities, familism, which according to ScienceDirect is “the tendency to live close by the family, as well as the use of family network as a source of emotional and social support,” is a prevalent cultural value.

This value instills a sense of obligation to care for older adults in immediate and extended families, such as parents, grandparents, aunts, and uncles. However, these same care providers often fail to self-identify as caregivers. This is largely because it’s expected, and not seen as a new role that these care providers step into.

This has a two-fold negative effect:

It largely undervalues the importance of their contributions.
And keeps them in the dark about available resources.

This can lead to missed opportunities for much-needed help with caregiving responsibilities. So if you haven’t self-identified as a family caregiver yet, but provide material care and support to one or more loved ones, it’s time to start. As you learn about family caregivers, you’ll find that there is a lot of information and resources out there that can assist you.

Disparities in Support and Caregiving Experiences

Unfortunately, as in many facets of society, there are significant disparities in the support and caregiving experiences among diverse caregivers.

Examples of groups experiencing disparities include:

Indigenous communities and caregivers of color
LGBTQ caregivers
Immigrant communities
And those from different income levels.

These groups, in particular, face unique challenges and often lack access to necessary resources. Here’s a chart that shows self-reported financial impact from surveyed caregivers:

Self-Reported Financial Impacts for African American Caregivers

As an example to illustrate the disparities in these communities, here is a self-reported financial impact chart comparing African American caregivers to Non-Hispanic White caregivers:

Financial Impact	Non-Hispanic White (n=801)	African American (n=199)
Took on more debt	21%	30%*
Missed or was late paying for a student loan	4%	11%*
Borrowed money from family or friends	12%	24%*
Filed for bankruptcy (medical or personal)	2%	8%*
Been unable to afford basic expenses like food	9%	14%
Left bills unpaid or paid them late	14%	31%*
Used up your personal short-term savings	21%	23%
Used long-term savings, like retirement or education, to pay for other things	10%	16%*
Stopped saving	26%	35%*
Moved to a less expensive home, apartment, or other living arrangement	5%	8%
Was evicted or had a home foreclosed	2%	5%
Put off retirement or deciding to never retire	9%	11%
Had to start working, work more, or find a second job	8%	20%*

Note from the data source: “*Indicate significantly different from Non-Hispanic White caregivers. Results are rounded and/or multiple response; results may not add to 100 percent”

More inclusive and representative research and data collection are necessary to fully understand and respond to the diverse needs of caregivers in all communities.

Policy Recommendations for Improving Caregiver Experiences

To improve the experiences of diverse caregivers, it’s clear that certain policy changes and interventions are needed. Examples of actions legislators can take to improve outcomes include:

Incorporating cultural literacy into the development of programs, resources, and services to ensure they effectively meet the needs of diverse racial and ethnic backgrounds.
Expanding the definition of “family” in caregiver programs to include a broader range of relationships.
Recognizing and increasing access to caregiver programs, resources, and support networks for LGBTQ+ caregivers.
Addressing access barriers for caregivers in rural areas and those with limited technology access will help ensure equal opportunities for support.

Addressing Challenges at Work

While caregiving can be a source of pride in a strong familism culture, it is also undoubtedly a challenge in modern society. Especially as the cost of living goes up worldwide.

Caregiving takes a lot of dedicated time, and as a result, often results in time away from work. This can create strain at best, and devastating consequences at worst for some families – especially for those that rely on working-age family members for financial support as well.

Legislation aimed at minority caregivers needs to both recognize and empathize with the fact that caregiving can take a toll on the family’s finances, and the caregiver’s time, physical, and mental health. It should consider things like:

Job protections beyond full-time permanent positions.
Financial support, grants, or subsidies for care-related expenses.
Subsidies for respite care, allowing the care recipient to receive care and the caregiver to take time off care.
Improving telehealth and prescription delivery where appropriate to reduce time spent on care.
Etc.

Investing in Caregiving Research and Data Collection

Multicultural data is vital for meaningful engagement in healthcare and social care systems. To address health disparities and systemic barriers, it is crucial to overcome the challenges related to the cost and inconvenience of integrating diverse populations into research design.

By collecting more inclusive data, interventions can be developed that are person- and family-centered, improving caregiver and patient well-being. Funding research studies conducted by community members and collaborating with community-based organizations can facilitate more accurate representation of diverse caregiving experiences.

Addressing the Lack of American Indian/Alaska Native Representation

Before we conclude, it is important to acknowledge the exclusion of American Indian/Alaska Native (AI/AN) caregivers in existing research. To address this, it’s important to actively look to improve partnership with tribal governments, community centers, and health clinics to better understand their caregiving experiences.

By conducting research that considers the cultural impact on caregiving within the AI/AN community, legislative and systemic changes can be tailored to their unique needs. It’s also important to recognize the historical injustices and systemic shortcomings to work toward equitable relationships. This will help foster a support system that reaches those who need it.

Closing Thoughts

It’s incredibly important to understand the unique experiences and needs of caregivers in order to create policies and interventions that provide meaningful support. That’s why the state of California and the federal government should invest in caregiving research, collect inclusive data, and engage underrepresented communities to build an equitable and inclusive system that supports and empowers caregivers of all communities in America.