Featured Nonprofit: Alzheimer's Association
Maui Living recognizes standout nonprofits from the Maui community for doing the tough work to give back to the people who need it most. Our Maui featured nonprofit is responsible for helping our kupuna and their families stay supported as they struggle with a family member with Alzheimer’s, a disease that destroys memory and other important mental functions.
We spoke with Christine Spencer, the current Regional Coordinator of the Alzheimer’s Association on Maui to learn more.
How did the Alzheimer's Association get its start (in general and in Hawai’i/Maui)?
The Alzheimer’s Association was founded in 1980 by a group of family caregivers and individuals who recognized the need for an organization that would unite caregivers, provide support to those facing Alzheimer’s, and advance research into the disease.
The chapter opened in Hawai’i in 1982 to maximize quality care and support for all those affected by Alzheimer’s and other dementias. As well as work in the community to drive risk reduction and early detection for the disease. The local Alzheimer’s Aloha Chapter serves Oahu, Maui, Kauai, Hawaii Island, Guam, the Northern Mariana Islands, and American Samoa by providing free support services and education to families.
Currently, more than 100,000 kupuna and their caregivers in Hawaii are impacted by Alzheimer’s disease or another dementia. A team of 8 people for the entire state of Hawaii is small but mighty. Our incredible leadership team is based on Oahu, and each island has a program specialist to provide education, support services, and train volunteers. Christine Spencer “Spence” is the boots on the ground for Maui and serves as the Regional Coordinator covering Maui, Molokai, and Lanai. In the past year, our team reached 2,400 families statewide with support services, we offered 97 free classes, and facilitated 197 Support Groups.
How did you get involved with Alzheimer's Association?
CHRISTINE SPENCER: “Caregiving or being a care partner to someone at home is a social issue that really gets overlooked. We know that for Alzheimer’s disease, there are over 65,000 family caregivers reported in Hawaii, with 6 of 10 of them reporting to be working full time.
I began working with caregivers in 2016 when I joined a team with the Research Corporation of the University of Hawaii and was trained as a national master trainer on Maui to teach a program to caregivers who were grandparents raising their grandchildren. I quickly saw that, although we don’t talk openly about caregiving, nearly everyone around us is doing it in some capacity, and the challenges are very visible.
Having the experience working with caregivers and with seniors was a great combination for my current position with the Alzheimer’s Association, which I started in 2018. I’m in awe of the caregivers I’ve met over the years. Working with them has given me a great amount of hope on a professional and personal level.
Alzheimer’s disease and the cause is something that also hits close to home. My mom is in her late 60s and has been struggling with her memory, so we’re going down that road of early detection and figuring out if it’s normal aging or signs of dementia. I’ve had years of training and I know so much about the disease, but it’s still hard and scary. I am proud to work for an organization that is leading the way in Alzheimer’s disease research and I’m optimistic that in my lifetime we will live in a world without Alzheimer’s disease and other dementia, where families don’t have to face this devastating disease anymore.”
What makes the Alzheimer's Association in Hawai’i and on Maui special?
Christine Spencer, Regional Coordinator of the Alzheimer’s Association on Maui
Walk to End Alzheimer’s team
CS: Being on Maui, we have limitations in resources for caregivers and kupuna, but the richest resource we have is our people. The Maui community has done so much for our association and not just in dollar amounts. We have a small army of volunteers that dedicate their time and hearts to teach, run events, and advocate for us at the local and legislative level. They are the backbone of what we do and their passion is palpable. Many of our volunteers have been around longer than I have, and I was fortunate to have this built-in team when I started. Alzheimer’s disease is a disease that doesn’t just impact the person living with the disease it impacts the entire family. In my role, I have seen hundreds of people in our community stepping up to the everyday challenges of taking care of a loved one at home. Culturally, I can see that people from Maui feel that it is their kuleana (responsibility) to take care of their elders, this perspective, I hope they never lose.
How can people get involved?
CS: This is a disease that even after all this time is cloaked in silence. If you have a story, share it, you may not know who but it will inspire someone. If you know a caregiver, praise them and find a way to give them a break even if it’s just for a few hours. Share the Alzheimer’s Association info with someone who needs it. We always need volunteers to become community advocates, educators, or event volunteers. Our Walk to End Alzheimer’s on Maui is held every year and it’s a great way to get involved. This is an opportunity to honor loved ones we have lost to the disease, share their memories, and honor caregivers. On October 16th, 2021, we are hoping folks will register to walk with us in their neighborhoods and join our online ceremony. It is free to register and show your support.
What are the current services offered?
CS: Many times, people are thrown into the caregiving role unexpectantly without having the training or skills to provide care to someone living with Alzheimer’s disease. Our programs equip caregivers and family members with information and tools to take with them on their caregiving journey. Our class portfolio has over 14 topics, a caregiver can join at any stage of their journey from the beginning- first noticing warning signs- to the end stages of life- and everything in between. We offer brain health classes for the general public and we have classes for professionals in the healthcare industry. We have the Maui United Way to thank for their generous funding for most of these classes. In the past year, I personally taught over 40 classes on zoom and reached over 400 families in Maui County. We offer a monthly Support Group held every month on the third Tuesday from 2-3 pm for family caregivers. We provide Care Consultations that are conversations by phone to help plan ahead, answer questions about the disease, and connect folks to other local resources. We also work closely with community partners to make referrals and direct families to additional support. Our Helpline is available 24/7 which has been helpful for caregivers who need to call at night or in times of crisis. We made a quick transition amid the pandemic to provide all of our support services and education virtually since mid-2020, and there is never a charge for any of our services.
KNOW SOMEONE STRUGGLING WITH ALZHEIMER’S?
Watch the Alzheimer’s Association Walk video, featurING our loving Maui community:
Nancy Rose, Alzheimer’s Association Volunteer
VOLUNTEER SPOTLIGHT: NANCY ROSE
“My father lived with some form of dementia for eleven years, declining into violent outbursts before being placed in a locked memory care facility, where he passed away in 2016. I began volunteering with the Alzheimer’s Association by leading my coworkers in our Maui Walk to End Alzheimer’s as a way to help the cause by raising funds for this non-profit, and in 2017, I was invited to become an Ambassador, or citizen advocate at the national level.
The Alzheimer’s Association strives to have one Ambassador for each member of congress to be a voice for bipartisan legislation and research funding that the Association believes will further efforts at improving diagnosis, treatment, and ultimately a cure for Alzheimer’s Disease and related dementias. I traveled with the Hawaii Chapter in 2018 and 2019 to Washington, DC for the annual Forum, where we trained hard prior to meeting with our senators and representatives. We were among hundreds of advocates from all over the US! It felt SO empowering to have a voice, our members of Congress and their staff truly listened to our concerns. We have been successful in increasing funding for dementia research and most of the other ‘asks’ we presented. What a wonderful feeling to make a difference in the trajectory of this disease for patients and their caregivers!”
Thank you!
—Nancy Rose, Alzheimer’s Association Volunteer
VOLUNTEER SPOTLIGHT: CHARLOTTE
Recent photo of Charlotte, her husband, and newest grandson
Charlotte is a volunteer and also attends the Alzheimer’s Aloha Chapter classes. She started her caregiving journey with her husband Roy about ten years ago. As a volunteer, she has managed the First Aid station for the Walk to End Alzheimer’s event for the past 8 years.
“Although I am a nurse I was not prepared for the emotional impact of the disease. I am thankful for the support group. It is so important to know that many caregivers are on the same journey. Sharing our stories, our solutions, laughing and even crying together made us stronger!"
—Charlotte, Alzheimer’s Association Volunteer
MAUI LIVING: We’re absolutely thrilled to be able to support such a worthy cause and celebrate Christine Spencer and the Alzheimer’s Association as our featured Maui Living nonprofit organization..