Families in Hawaii who are dealing with dementia are raising their voices to reduce the stigma surrounding this brain disease. For many, the journey is deeply personal and emotional.
LJ Duenas, executive director of the Alzheimer’s Association’s Hawaii chapter, shared how his grandfather, a scientist, experienced the decline associated with dementia. “There’s probably shame that he is feeling and experiencing,” Duenas said, highlighting the emotional toll on both patients and families.
Chris Lutz, a board member, echoed these sentiments. His wife, Maria, was diagnosed with younger onset Alzheimer’s last year. “It was incredibly scary and I think we both felt isolated and alone to some extent,” he said. “How do you deal with this new diagnosis? It has been a difficult journey, but it’s also been a rewarding one.”
“It is not anyone’s fault; it’s an illness,” he added. “The sooner that one can seek care, the better for the patient and the family.”
Maria Lutz emphasized the importance of socializing. “For me, it’s been really good just to be socializing as much as I can and that really makes a big difference,” she said.
As more people live longer, advocates stress the importance of awareness and education to help prevent or at least delay symptoms. Duenas explained that Alzheimer’s is the inability to retain new memory. “If you notice yourself or your loved one asking the same questions over and over again, or their inability to retain new memory, that’s one of the big signs we would encourage them to go and see their doctor.”
Screening is the first step. A new law effective January 1 requires patients 65 and older to be screened for dementia during their annual Medicare wellness visit. Advocates are also working to get blood test screenings covered.
Once diagnosed, families are encouraged to take advantage of free care consultations, support groups, education, caregiving training, adult day care, and a 24/7 helpline offered by nonprofits, the state, and counties. These resources provide financial assistance, allowing working caregivers to bring their loved ones to adult daycare facilities multiple times a week, offering significant relief.
Even accepting help from friends can make a big difference. “I would advise don’t suffer in silence, seek care, seek support,” Chris Lutz said. “We have a great friend network... so just about every single day we have something to keep Maria as active and engaged and social too.”
The Alzheimer’s Association is launching a statewide Hanai Memory Network to help triage or coordinate care in rural communities. This initiative is designed to bridge the gap between research, clinical care, and community support, ensuring families can access early diagnosis and coordinated care close to home, regardless of where they live or who their doctor is.
The nonprofit is also working with employers to include caregiving resources in work wellness programs and prevent worker burnout. The goal is to relieve some of the burden on 65,000 dementia family caregivers who provide 111 million hours of care worth $2.8 billion each year.
“Sometimes caregivers pass away before their loved one because of stress or reduced capacity to even care for their own selves, they’re concentrating so much on their loved one that their health is now being affected,” said Rowena Dagdag-Andaya with the Maui County Office on Aging and the state Department of Health’s Aging and Disability Resource Center.
“We’ve normalized forgetting with aging and Alzheimer’s needs to be looked at as a disease, like we look at diabetes and other chronic conditions, because it certainly is a public health crisis,” Duenas said.
The public can support families by joining the Walk to End Alzheimer’s fundraiser this Saturday at 8:30 a.m. on Magic Island at Ala Moana Regional Park. Maui will host its Alzheimer’s fundraising walk on Nov. 22 at 10 a.m. at Queen Ka’ahumanu Center. Maui County is also holding a Senior Fair on Nov. 15 at the Queen Ka’ahumanu Shopping Center from 10 a.m. to 2 p.m. Enjoy free fitness workshops and meet with representatives from over 65 community organizations and health agencies.
Here are more resources from the Alzheimer’s Association:
Caregiver Support Groups
Caregiver support groups offer comfort, reassurance, practical advice, and a community of people who are facing similar challenges. These meetings are for unpaid family members or friends caring for someone living with Alzheimer’s disease, another dementia, or a related disorder. People who attend should be comfortable and open to discussing their experience in a group setting. Support group details are updated regularly and subject to change. Please call or email the meeting contact before attending to confirm that days, times, and locations are accurate as listed. Please note that these groups are not appropriate for professionals or paid caregivers.
Oahu
- Honolulu/Ala Moana/Kakaako (in-person): 1st Tuesday of the month, 5–6:30 p.m.
- East Oahu (virtual): 2nd Monday of the month, 7–9 p.m.
- Central (in-person): 3rd Monday of the month, 6:30–8 p.m. The Plaza at Pearl City, 1048 Kuala Street, Pearl City.
To register, please click here or contact Gina Plummer at 808.518.6648 or email geplummer@alz.org.
Hawaii Island
- Waimea (in-person): 3rd Friday of the month, 2:30–4 p.m. Tutu’s House Waimea, 64-1032 Mamalahoa Hwy # 305, Waimea.
- Hilo (in-person): 3rd Tuesday of the month, 1–2:30 p.m. Aging and Disability Resource Center, 1055 Kino`ole Street, Hilo.
- Hawaii Island One (virtual): 1st Wednesday of the month, 10–11 a.m.
- Hawaii Island Two (virtual): 3rd Thursday of the month, 4:30–5:30 p.m.
To register, please contact Nic Los Banos at nklosbanos@alz.org or call 808.518.6649.
Kauai
- Central Sunset (in-person): 3rd Thursday of the month, 5:30–7 p.m. Regency at Puakea, 2130 Kaneka Street, Lihue.
- Kauai and Maui County (virtual): 3rd Wednesday of the month, 12–1 p.m.
- Westside (in-person): Last Thursday of the month, 5:30–7 p.m. Kauai Veterans Memorial Hospital - Conference Room AB, 4643 Waimea Canyon Drive, Waimea.
- Eastside Afternoon (in-person): First Monday of the month, 12:30–2 p.m. Samuel Mahelona Memorial Hospital, 4800 Kawaihau Road, Kapaa.
Questions about any Kauai County Support Groups? Please contact Cindy Fowler at cfowler@alz.org or 808.518.6655.
Maui County
- Maui and Kauai County (virtual): 3rd Wednesday of the month, 12–1 p.m.
- Maui Island (in-person): 4th Thursday of the month, 4–5:30 p.m., Roselani Place, 88 South Papa Avenue, Kahului.
To register, please contact Cindy Fowler at cfowler@alz.org, or call 808.518.6655.
Caregiver County Services/Kupuna Care Program
The Hawaii Executive Office on Aging (EOA) is the designated lead state agency in the coordination of a statewide system of aging and family caregiver support services in the State of Hawaii, as authorized by federal and state laws. EOA works with the four county Area Agencies on Aging to enable older adults to live in their own home for as long as possible.
Through the Kupuna Care Program and Hawaii Aging and Disability Resource Center, caregivers can access county-specific support that may include adult day care, caregiver respite, home-delivered meals, personal care, and other services.
To learn more about the Kupuna Care Program and to request assistance, please visit the Hawaii Aging and Disability Resource Center’s website at hawaiiadrc.org or call 808.643.2372.
Early-stage Support Groups
Early-stage support groups intend to provide a safe and positive environment for individuals who have a physician’s diagnosis of Alzheimer’s disease, another dementia, or a related disorder. People who attend should be comfortable and open to discussing their diagnosis and symptoms in a group setting. Prescreening is required prior to enrollment. For more information, call the Alzheimer’s Association 24/7 Helpline at 800.272.3900.
ALZConnected Online Community
ALZConnected is a free online community designed for people living with dementia and those who care for them. Members can post questions about dementia-related issues, offer support, and create public and private groups around specific topics.
24/7 Helpline
Talk to a dementia expert with our free 24/7 Helpline at 800.272.3900. Help is available any time, day or night. Get confidential emotional support, crisis assistance, local resources, and information in over 200 languages.
Become a Support Group Facilitator
If you’re looking for a volunteer opportunity that gives you in-person contact with families that are coping with Alzheimer’s or other dementia, facilitating a support group might be a good fit for you. Support group facilitators help create a safe, open environment for caregivers or people living with dementia to share their feelings, thoughts, and experiences. Volunteer as a support group facilitator.