The Future of Family Caregiver Support Is Diverse and Inclusive
Research, training and outreach is needed to better equip these communities
For 20 years, I've studied caregiving. In 2010, I became a family caregiver for my mother and, soon after, a professional caregiver advocate. My life revolves around caregivers, so I read and watch everything I can about the world of caregiving.
At some point, I couldn't help notice how the media portrayed caregivers. They matched what has traditionally been described as the "average” caregiver. Female. Middle-aged. Middle class. And white.
I observed that most movies, shows and books about caregiving depict white families in white neighborhoods (think: Steel Magnolias, The Notebook). Usually, they're wealthy. They have nice gardens and lakes with docks and in-home nurses. And, often, relatives who can take weeks off of work to visit while the family decides whether to send their loved one to a nursing home (that they can pay for!). I am a white, female, middle class woman, and those depictions do not represent my caregiving experiences. In fact, I don't believe they represent most caregiver experiences.
Improve the research
It's not just how caregivers are portrayed. It's also how they are studied. In the past, caregiving research centered around Caucasian caregivers. There was a "major deficit” in research regarding nonwhite caregivers. Over time, there has been an evolving body of scientific and social research that explores the needs and experiences of all variations and circumstances of caregiving. And yet, the common depictions of caregivers and outreach efforts to the caregiving population has not yet caught up to the reality of caregiving in America and certainly not to the reality of the upcoming caregiving cliff. AARP has recognized the need to speak to diverse communities and has created guides catered to Chinese, Spanish, Asian American, LGBT and military caregivers.
Today, about 30 percent of caregivers self-identify as a racial or ethnic minority. This number will increase in the coming decades. Expanding research and resources, with consideration of the experiences of all caregivers, not just some caregivers, is an imminent priority. Doing so will move toward ensuring black and Latino/Latina (and all other racial and ethnic groups), LQBTQ+, differently abled, impoverished, rural and non-English-speaking caregivers are heard and supported by the caregiving community and community at-large. This applies across all areas of caregiver need, and particularly medical, legal and social aspects.
Caregivers of color feel invisible
When it comes to medical care, studies have found that African American and Hispanic caregivers report feeling invisible in medical facilities. Caregivers know their care partner's medical history, symptoms and needs. When there are communication breakdowns with medical providers that result in poor response or dismissal of the caregivers’ input, then patients are bound to suffer.
Planning to provide care to a friend or family member requires legal paperwork and financial forecasting. When we are unexpectedly thrust into caregiving by a catastrophe or crisis, a primary step is to get our care partner's legal and financial affairs in order. For these reasons, every person over the age of 18 must consider creating a will and complete life-care plan. But the majority of people don't. Nonwhite Americans are half as likely to have a will as white Americans. Often, not having these documents in place leads to greater expense, difficulty communicating with medical providers and managing finances, and often, a lot of time in court. All current and expectant caregivers require access to information, representation and guidance that will encourage early preparation to prevent later difficulties.
Access to holistic and social resources can be lifesavers for caregivers; they offer respite and alleviate isolation. Working as an women's economic empowerment coordinator for a nonprofit organization that served minorities and women, my work revolved around creating programs specifically for female minority caregivers because there were very few programs — like hospice and support groups — geared to their needs. The programs that do exist are more attended by whites than other racial and ethnic groups. Caregiver support groups that speak to the needs of the community and are facilitated by members of that community or those who have been trained in cultural competence can make a difference. Outreach to diverse communities is a priority to ensure that this underutilization is not caused by lack of outreach efforts.
Technology can provide better access
Innovations in caregiving forecast positive changes for all caregivers and some of the less-studied and supported groups. Long-distance caregivers can participate by remote technology in medical, financial and legal meetings with greater ease, helping overcome communication barriers and ensuring that they can advocate for their care partners and cocaregivers. With telemedicine, rural and home-bound families have greater access to medical care. Translation tools have never been easier to use and can be accomplished on a smartphone, assisting with language barriers. Laws are changing, too; caregivers are receiving better hospital and facility discharge training to reduce readmissions and frustrated care efforts. And caregiver-centered laws are expanding nationwide, eliminating at least some of the financial and legal insecurities caregivers face.
Training to address bias is needed
For those who work professionally with caregivers, bias training and cultural competence are a necessary piece to serve our clients and patients. This is particularly important to reduce presumptions and misconceptions about others’ experiences and to ensure the best results possible for caregivers and their care partners.
Caregivers are diverse and should be supported in an inclusive manner. Through continued research, intentional community building and culturally tailored approaches in all spaces of caregiver need, we will better understand and serve our entire caregiving population.
The author would like to thank Karen Davis-Pritchett, vice president, Access and Inclusion, Empath Health, and professor William E. Haley, University of South Florida, School of Aging Studies, for their contributions to this article.
Amanda Singleton is a recipient of CareGiving.com's national Caregiving Visionary Award and serves caregivers across their life span through her law practice. Follow her on Twitter and Facebook.