WSU Researcher Adapts Online Program for ʻOhana Caregivers

Dr Lexie Jackson

Dr. Alexandra Jackson, PhD, RDN, CDCES, is a Postdoctoral Research Associate at the Institute for Research and Education to Advance Health (IREACH) at Washington State University. Dr. Jackson recently received funding from the Alzheimer’s Association for her research project, “Adaptation of an intervention for caregivers of Native Hawaiians with Alzheimer’s disease and related dementias.” Below, Dr. Jackson explains her research and her personal connection to Alzheimer’s disease and the people of Hawai‘i.

Tell us about yourself. 
Prior to transitioning to academia, I worked for nearly 10 years as a Registered Dietitian Nutritionist and Certified Diabetes Care and Education Specialist in clinical and research settings. My experiences as a clinician were foundational to my interest in prevention and health promotion and led to two primary areas of research: a lifespan approach to health promotion with a focus on body image, eating behaviors and diet quality; and promoting positive health outcomes with Native Hawaiian and Pacific Islander adults using community-based participatory approaches. 

In addition to my professional experience, my upbringing in Hawaiʻi is foundational to my research and practice that includes mālama (caring) for others as my ʻohana (family), kuleana (responsibility) for the ʻāina (land) that offers us sustenance and brings aloha (love) to all aspects of my life and work.

What inspired you to become involved in research related to Alzheimerʻs and dementia?
In addition to my personal connection with dementia (which I will talk about later), one constant throughout my professional career has been a focus on prevention and health promotion throughout adulthood. While preventive interventions in childhood can have an additive effect (or cumulative advantage), interventions that promote health throughout adulthood can also have an important impact on living longer, healthier lives. 

Knowing the multiple challenges faced by family caregivers, reducing the stress and burden of caregiving can be an important opportunity to reduce stress and promote health throughout adulthood. More specifically, as there are effective programs that support caregiver mastery and reduce burden and stress, I’m looking forward to being able to work with the Native Hawaiian community living outside of Hawaiʻi to make these programs more relevant for the challenges they face as caregivers.

Tell us about the research project funded by the Alzheimer’s Association.
ʻOhana (family) or unpaid caregivers provide the majority of care for people living with Alzheimer’s disease and dementia. While caregiving can be a positive experience, it often leads to poorer caregiver health, negatively impacting the ability of the caregiver to provide care. Online programs have been developed to reduce the negative impacts of caregiving, but typically do not incorporate the unique cultural values related to caregiving. Because Alzheimer’s disease and dementia is likely prevalent in Native Hawaiians — who also have a strong cultural responsibility to care for kūpuna (elders) — the Native Hawaiian community could benefit from a culturally-tailored caregiving intervention. 

For this project, we will work closely with unpaid, ʻohana caregivers of Native Hawaiians with Alzheimer’s disease and dementia to tailor an online caregiving program. First, we will invite caregivers of Native Hawaiian adults with Alzheimer’s disease to participate in focus groups to better understand Hawaiian values in caregiving, review the Tele-Savvy caregiver program, and suggest changes to the program to better align with Hawaiian culture and values. 

After getting feedback from ʻohana caregivers, we will make the recommended changes to the Tele-Savvy program. We will then recruit ʻohana caregivers who live outside of Hawai‘i to participate in the program. We will pilot test the tailored program and see whether participants enjoyed the program, practiced the skills they learned, and if the program improved caregiver mastery and decreased caregiving burden.

Why is this research important to the field, and how will it help Native Hawaiians living with Alzheimer’s disease or dementia and their caregivers?
As this program is completely online, we expect this program will reach and benefit the growing number of ʻohana caregivers of Native Hawaiian adults with Alzheimer’s disease and dementia living across the US, away from their homeland. Only 355,000 of the 1.4 million Native Hawaiian and Pacific Islanders living in the United States live in Hawaiʻi. If successful, this program could have a substantial impact on the Native Hawaiian community across the United States.

From a research perspective, this project is important to the field as we will learn more about cultural responsibilities and caregiving, as well as how to tailor programs with the Native Hawaiian community. Additionally, as the Tele-Savvy program is fully online, if the tailored program is effective, it can be available quickly and easily to those who could benefit from it. 

Do you have a personal connection to dementia?
When I was in middle school, my grandfather was diagnosed with Alzheimer’s disease. My parents and I were living in Hawaiʻi and my grandparents were in Southern California. As my brilliant grandpa declined in his ability to function independently, my stoic, unwavering grandma became his full-time caregiver. She did all she could to provide the best care for my grandfather while also realizing that she would never have the same relationship she had with her best friend and partner of over 50 years. From doing everything she could to get him to take his shoes off before going to bed or not shower with all of his clothes on, to finding creative ways to stop him from wandering at night, my grandma took on her role as a caregiver with impeccable grace. My grandma never complained, showed fear or sadness and never wavered in doing all that she possibly could for my grandpa. 

Watching my grandma do everything she could to take the best care of my grandpa is something I will always remember. I hope my research will someday reach the many family caregivers out there who work hard every day to care for their partners, aunts, uncles and other family members with Alzheimer’s or another dementia.

How will the funding you received from the Alzheimer’s Association help you fulfill your objectives?
Beyond the goals for the research project, the funding from the Alzheimer’s Association will allow me to work with and learn from a fantastic mentorship team including my primary mentor, Dr. Ka‘imi Sinclair, as well as Dr. Kenneth Hepburn, Dr. Jordan Lewis and Dr. Raven Weaver. I will also be able to participate in additional courses on program evaluation, community-based participatory research, and mixed methods, as well as attend conferences where I will share this work with researchers and clinicians.

I have so much to learn and am excited that the Alzheimer’s Association will be supporting my professional development alongside this research project! Mahalo nui loa (Thank you very much) to the Alzheimer’s Association for the opportunity to continue to find ways to support the many ʻohana caregivers who are providing critical support to those they care about.

Interested in participating in Dr. Jackson’s research? Look for her study on TrialMatch®. Alzheimer’s Association TrialMatch® connects individuals living with Alzheimer’s, caregivers and healthy volunteers to clinical trials that may advance Alzheimer’s research. The free, easy-to-use platform allows you to see which studies are a good fit for you or a family member. Search for studies, receive email notifications about new opportunities or connect with research teams. Learn more.

One thought on “WSU Researcher Adapts Online Program for ʻOhana Caregivers

  1. Having known Dr. Jackson since her birth, I know she will be a valuable asset to this program. I was honored to watch her Doctorate dissertation online and was so impressed with her knowledge and professionalism with the presentation of her research. I know she will be a valuable asset for this important issue many people face sometimes with little or no support and often by themselves.

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