By: Jordan P. Lewis, PhD, MSW, CPG, FGSA (Unangax/Aleut, Native Village of Naknek)
Becoming a caregiver is not a role we expect to step into in our lifetime, but for many people it is a role we eventually embrace, learn and grow from, and use as a way to honor our family history, traditions and legacy. Along with the global population of older adults rapidly growing, and some living longer with chronic health conditions, comes an expected growing number of caregivers. These caregivers will come from all corners of the world, bringing with them the rich and vibrant cultures they represent; the cultural values, practices, foods, dancing and singing, languages, and spiritual and religious traditions.
Caregivers are supporting elders who have experiences shaped by their cultural values and practices, family traditions and the lessons and wisdom of their own elders; they share their lessons, words of wisdom and experiences with their children whispered in their native language, through the foods they serve and the views of life through religious and spiritual traditions. As our elders grow older and we reflect on how they have shaped our views of the world, stepping into the role of caregiver forces us to remember those lessons to ensure we care for them with honor and respect, steeped in their culture. They remind us of the importance of diversity, holding true to our identity and being open minded to weave together cultural and Western notions of dementia and health.
Racial and ethnic minority caregivers not only carry on the legacy of their older family members through their caregiver duties, but face challenges and barriers to receiving care as a result of their cultural background, language, foods and other practices. During their caregiver journey they will wish to receive services and support to reduce strain. For caregivers wishing to receive services from a system different from their own, they will inevitably face barriers to care.
The dominant, Western, health care and support systems are developed to serve the majority population (non-racial and ethnic minorities), which does not reflect the cultural values and beliefs of racial and ethnic minority caregivers. Native language, food, dancing and singing, extended family support, and religious and spiritual practices bring comfort to caregivers and persons with dementia but bring discomfort and unease to those who are not familiar, including non-racial and ethnic minority health care and social service providers. This lack of familiarity or comfort with different approaches to understanding health and illness results in miscommunication, missed diagnoses, fear and distrust, and a broken support system that could empower caregivers to embrace their role while celebrating their family and community.
With the growing number of diverse caregivers comes the need to improve dementia education and awareness of cultural diversity for health care and social service providers. We need to work collaboratively with caregivers to develop these materials, highlighting the importance of cultural activities, language, foods, traditions and spirituality and religion to their caregiving experience, but also to the health and well-being of their family member with dementia. For example, sharing lived experiences of how traditional or spiritual food improves the mood of their family member with dementia; how listening to music from their childhood brings them to life. Asking persons with dementia what their illness means to them illuminates how dementia may be viewed as a gift or natural part of aging, and not an illness to be treated with medications.
It is important to educate organizations that serve dementia caregivers and their families that a Western caregiver dyad model is not always appropriate in racial and ethnic minority communities where multiple family members are involved in providing care, and it is not always appropriate for one person to be designated as the primary caregiver. We need to work with our caregivers and persons with dementia to document the rich cultural experiences related to caregiving and dementia to develop culturally-responsive education and training materials, opportunities to bring awareness to cultural humility and improve the experiences for caregivers in accessing support services.
Can you imagine the impact it will have for a caregiver to open a resource guide and the photos look like themselves, or attend a doctor appointment and they ask about your religious or spiritual practices and speak a few phrases in your language? These small gestures are one step toward making caregivers feel welcome, acknowledged and not different from others.
The world we live in is diverse, and over time, we will need to develop more training and education in partnership with caregivers, embracing and building upon the rich diversity that exists in our country, bringing their voices and experiences to the forefront and honoring the elders who have paved the way for us.
Dr. Lewis is a community psychologist, social worker and gerontologist with experience partnering with indigenous communities to translate the experiences of aging successfully to develop health prevention and promotion programs to address health disparities. His current research explores cultural understandings of Alzheimer disease, spirituality and dementia caregiving, and documenting the impact of traditional foods on behaviors of those with dementia within a reminiscence framework.
Dr. Jordan Lewis will be presenting on Cultural Barriers to Care at the Discovery Alzheimer’s Regional Conference. Join us on April 23, 2021 for the premier educational event in the Pacific Northwest for healthcare professionals working in the aging and dementia fields. Learn more and register at alzwa.org/conferences.
Thank you to our Presenting Sponsors, CarePartners Senior Living and Koelsch Communities, for making this conference possible.