Caregivers—The Backbone of Long-Term Care
In November, we give thanks—not only on Thanksgiving but for the tremendous contribution of unpaid caregivers to our families and throughout our communities. That’s because November is National Caregivers Month.
November is also national Alzheimer’s Awareness Month and National Diabetes Awareness Month. You will find reference to these special recognitions in this issue of AgeWise, and much more.
For a moment, though, let’s look at caregiving and Alzheimer’s. Among 840,000 family caregivers in Washington state, there are 353,000 who care for a loved one with Alzheimer’s or another dementia. I give thanks for brain health, and do not take it for granted. I also give thanks for incredible community resources for people living with memory loss and their care partners.
The article about Maude’s Awards—a new award that recognizes innovation in Alzheimer’s and dementia care—includes a video link that features each one of the 2020 award recipients. I encourage you to watch the video and listen to all the award winners.
“[My mother and I] have experienced many challenges, being caught between our Vietnamese culture that often doesn’t understand the disease and a largely White-driven care system that often doesn’t understand our culture. Some examples:
- Doctors who misdiagnose symptoms or delay treatment because they didn’t realize how our culture might lead my mom to not report pain.
- Memory tests that ask recall questions specific to White culture, like “Mary Had a Little Lamb.”
- Professional interpreters in medical settings who, lacking knowledge about dementia, couldn’t convey meaning accurately to my mom.
- Vietnamese helpers who, because of our cultural norms, overhelp—doing everything for my mom, leading to more rapid loss of her abilities.
- And Vietnamese elders who, while well-meaning, talk to my mom at times like she’s a child, or talk to me like she’s not there, or ask me if she’s crazy.
“As a result, and really out of necessity to ensure good care for my mom, I’ve had to bridge cultures and create an approach that blends best practices in Western dementia care with the norms of our culture. Some examples:
- I’ve often intervened during health provider appointments to educate them on culturally appropriate communication, diagnosis, and treatment.
- I crafted ways to encourage her independence while also honoring our values of taking care of our elders.
- I developed training materials and taught these to others who helped her, including professional caregivers who were State-certified and had dementia training but were not culturally competent.
- And I’ve used a cultural lens to understand triggers for some of her psychoses, such as war trauma, and then devised ways to help her through those.
“To be honest, having to take all these actions has added a level of exhaustion for me beyond the already taxing work of caregiving. And it’s made me wonder about others like us but who may be less aware of dementia or misunderstand it, have fewer tools and resources, or are unable to advocate for themselves. How do they navigate the system?”
Ms. Tu’s words capture one set of cultural challenges in dementia care and caregiving in general. Her examples are poignant. Her question (How do they navigate the system?) defines the greater challenge for health care and human services everywhere. We must build cultural competency throughout the system so that every person who needs care—regardless of race, ethnicity, language, gender, or economic status—can get care that is appropriate to their specific needs.
Ms. Tu also issued a call to action that I want to amplify:
“One, if you are part of the direct care system, including health care professionals, social workers, home care providers, nutrition programs, social engagement programs, and others, don’t assume the way you usually engage with clients will work for all. Educate yourself about the cultural context that a patient brings. And ask yourself how you can use your role and voice to question the status quo of care. Find its blind spots. Improve how it serves diverse seniors.
“If you play significant roles outside of the direct care system, such as policymaking, decision-making, agency leadership, senior advocacy groups, funders, and others, examine whether the decisions you make are well-informed by cultural knowledge and based on racial equity, or if they—even unintentionally—prioritize serving some communities more or better than others. If the latter, educate yourself. Commit to serving all communities well. And to meet that commitment, be willing to look at how the systems you are a part of need to transform—which may mean partnering with other groups like grassroots organizations within communities of color who know their communities best—and have cultural knowledge. And when you do, don’t ask them to give their labor and expertise for free. Share the resources and share the power.
“Finally, if you’re someone like us whose family has been impacted, know that it will be very hard. No one gives you a handbook on how to do this, but you can find a way and you can advocate. On the one hand, educating your own community while also pushing the system to meet your needs better. Finally, know that you’re not alone. You have a voice, and you have the power to advocate for the quality, culturally competent care that your love one deserves.”
Contributor Ava Frisinger chairs the Seattle-King County Advisory Council on Aging & Disability Services, which publishes AgeWise King County. She welcomes input from readers via e-mail (email@example.com) as well as applicants for open positions on the council. For more information, visit www.agingkingcounty.org/advisory-council.
This article originally appeared in the November 2020 issue of AgeWise King County.