I would like to find ways to extend existing caregiver dementia education materials to address the needs of different cultural and linguistic minorities in the U.S.
I would like to do this in a way that
A. addresses the issues that both my two sisters (Dr. Maria Lee, a house-calls physician treating home-bound elderly Chinese in NYC and Dr. Aida Wen, a geriatrics physician based in Hawaii) have seen their patients' families face:
In providing home-based medical care to low income Chinese elderly patients, a great deal of what Dr. Maria Lee and her team do involves taking her medical expertise and care recommendations regarding dementia, adapting them to her patients' families' culturally specific concerns, and making appropriate recommendations (ex. how to -- and how not to -- talk about mental health, family roles and death, how to prepare food and address feeding issues, etc.) in their own languages. She often does this face-to-face and on the phone, and spends a significant amount of resource translating and adapting education materials for her patients' families. Translated, subtitled and culturally adapted caregiver education materials would help her team and her patients' families greatly.
I have attached the slides from a 2009 Ethnicity and Dementia presentation she gave to professional caregivers in 2009, covering some of the challenges that some ethnic minority caregivers face in the U.S.
My other sister, Dr. Aida Wen, was able to secure funding and resources to produce a video about food and feeding issues that her dementia patients face in Hawaii. Amid the necessary and relevant medical and caregiving information, they were able to address culturally specific food issues (see 12:30+ in the video).
As she put it, "many Asian/pacific island caregivers (who don’t necessarily speak English) try to provide care at home (not nursing home), but they don’t know what to do, and don’t have a place to learn in their own language and using their food options. And they CAN do it with their own culturally favorite foods. And it IS ok to balance their lives (work during the day) and have other healthcare providers come in the home to help out... Food is often embedded in culture: Food = Love." Samoan, Chuukese, and Tagalog (Filipino) subtitles and translations are currently in the works to serve her Hawaii-based patients. There is currently no funding for other language translations, but Chinese and Spanish, and similarly sensitive videos around other dementia issues would help a lot of Dr. Maria Lee's patients in NYC too!
In discussions with both sisters, we realized that there were many other aspects of the caregiver journey, in addition to food/feeding, where cultural nuances affect how their patients' families understand and navigate the journey. Broad issues such as how to talk about mental health, how to talk about family roles and responsibilities, how to show respect to the elderly, and how to discuss death are all impacted, and make their importance felt in the day to day discussions of preparing food, assigning sibling roles, signing healthcare proxies, etc. How can we identify these areas and create supportive, sensitive, educational materials for caregivers as needed? Straight translations of existing material to different languages are needed, but understanding the broad and varied spectrum of cultural attitudes regarding mental health, food, spiritual health, family roles and end-of-life issues would also be valuable.
B. serves as a roadmap for addressing needs of other cultural and linguistic minority family caregivers in the U.S.
To ensure that our approach is human-centered, I would like to start by 1) reviewing the wonderful AgingWell Hub Caregiver User Journey map with a small group of healthcare workers and family caregivers in the Chinese immigrant community to identify areas of sensitivity and need, then 2) focus on identifying the specific information/support that they need, 3) finding existing resources that meet those needs -- it might be videos about preparing food and feeding , or communication support videos such as the wonderful ones done by Being In the Moment , or the comic book format empathy vignettes by Parables of Care -- or developing certain resources from scratch if they don't already exist, and 4) translating, subtitling or otherwise adapting them as necessary.
By creating a roadmap that incorporates the continued input of social/healthcare workers and family caregivers along the user journey, I hope to avoid the pitfalls of essentializing cultural stereotypes (see the much-criticized "Nursing: A Concept-Based Approach to Learning", now discontinued) or resorting to strict word-for-word translations that don't actually address specialized needs, and allow for expanding this approach to serve other ethnic minority caregivers in the U.S.
Maria Bun-Ching Lee, M.D.
Founder and Physician — Living-at-Home Medical, PC, New York, NY
Providing personalized and culturally sensitive care in the home setting to those who who have limited access to medical care, serving Lower Manhattan and Brooklyn.
Aida B. Wen, M.D.
Program Director & Associate Professor of Geriatric Medicine — University of Hawai’i Geriatric Medicine Fellowship Program
John A Burns School of Medicine, Principal Investigator, Pacific Islands Geriatrics Workforce Enhancement Program