Table 1.

Example Quotes From the Korean American Community During the Listening Sessions

Community-level negative perceptions of ADRD

1. (. . .) But now, when you go out alone and your behavior becomes erratic and your body deteriorates, it’s obvious that people will ignore you and treat you like a fool. (Female Older Adult, Session 1)

2. I don’t want others to find out if I am diagnosed with ADRD. Others will look at me as if there is something wrong with me and I will be wrongly perceived by others. (Female Caregiver, Session 3)

3. I’m afraid to go anywhere (. . .) I’m afraid to speak up because I’ve been ignored a lot. (. . .) When I ask for help among Koreans, people look at me and call me byungshin (병신; retarded). (Male Older Adult, Session 1)

4. Since I’m turning close to 70 years old, what scares me the most about dementia is not the physical pain or getting sick, but the fear that it can happen to anyone. (Female Older Adult, Session 1)

5. It’s really scarier than cancer. (. . .) We can somewhat manage cancer, but Alzheimer’s is a very scary disease (Female Older Adult, Session 2)

6. Older Adults expect that they may have ADRD in the future, so they prepare. Yet, younger people may not think it as an imminent issue. I believe there are some generational differences. (Female Older Adult, Session 2)

Lack of information on causes and symptoms

7. (. . .) it is said that people develop dementia in their brains due to the way we live, (. . .) and stress. However, there are still things that don’t work because nowadays there are various issues related to environmental hormones in our food, so it’s difficult to summarize it into one thing cause. (Female Older Adult, Session 1)

8. As far as I know, there is one type called alcohol-related dementia. For those who drink a lot, dementia comes quickly, as the brain shrinks. (. . .) many people who don’t use their brains much experience dementia more quickly. (. . .) elderly people spend a lot of time alone. (. . .) when they just watch TV, I think dementia increases even faster. (Male Older Adult, Session 1)

9. (. . .) there are definitely good dementia and bad dementia. It’s said to come from personality. (Female Older Adult, Session 2)

10. I know that MRI is more commonly used, especially in the field of neurology. However, it seems that these are mostly used to check for any damage in the brain. (Male Caregiver, Session 3)

Perceptions on ADRD care and treatment

11. There might be economic reasons (that family needs to be the caretaker), but for Asians or Koreans, there is also a sense of responsibility that children should provide care, or family should do it. I’ve seen cases where despite the economic difficulties, family members quit their job to take care of their parents and then they keep falling into the cycle of economic difficulties. (Female Older Adult, Session 1)

12. We are the last generation that practices hyo (효; filial piety), but we are a generation that doesn’t receive it at all. (. . .) my friend had to quit her job to take care of her mother-in-law (in return of her mother-in-law’s contribution/favor to her earlier days). So, as a family responsibility, she (my friend) cooks eight or nine meals a day at home. (Female Older Adult, Session 1)

13. I think the concept of patient care used to be different, but I don’t see much difference nowadays in how Americans or KAs handle these things. But one case I know is a 94-year-old person who has developed dementia. The family sent them to Korea to a senior facility called “Silver Town”. The person interacted with Koreans, ate Korean food, and engaged in activities there, and the symptoms have actually improved. So, I think there are cultural factors at play as well. (Female Older Adult, Session 2)

14. If I gradually start forgetting things and such, I think I should go to a nursing home. I have already talked to my children about it. (. . .) because for a day or two, the children might be fine and able to take care of me, but they also have their own lives and responsibilities. (Female Caregiver, Session 3)

15. When families reach a point where they can no longer take care of their loved ones, they resort to long-term care. (. . .) I know some people who went there for a while and then passed away quickly. The food is not culturally appropriate for them and there may be a higher chance of reducing the symptoms when family members take care of them. But it is extremely difficult for family members to live. (Female Older Adult, Session 2)

16. We are in the United States, the social system is such that parents should be independent from their children, and children should live their own lives when they reach the age of 20, and parents should live their own lives. I believe we need to follow the United States system as we live here. (Female Caregiver, Session 3)

17. In the past, I worked multiple shifts of 8 hours caring for someone with dementia. Often, when I arrived, the patient would claim that her ring or money was missing and that the previous caregiver had taken her belongings. She would say the same thing to the next caregiver when I left. This happened regularly, and while it was frustrating at first, most of us have now come to accept it as part of the job and learned how to handle such situations. For example, I often search with the patient and help find the lost items as money might be hidden under a pillow and then forgotten. However, new caregivers often become so upset by this that they end up quitting. (Female Caregiver, Session 3)

Resource needs and recommendations

Educational programs and support services by KCS/community-based organizations:

18. As KCS is an organization created within the Korean community, it would be great if they could organize more educational sessions by dementia medical specialists, (. . .) they could also arrange listening sessions and gatherings like this where families can share their experiences, as we don’t have dementia specialists here. (Male Older Adult, Session 1)

19. I heard that it is extremely challenging for families (so there should be support) on a social and national level. So, it would be helpful to see how much assistance is available and to actively seek out support programs (for families) from organizations like KCS. Additionally, with the advancement of computers these days, I think there might be online support groups for ADRD patients. I would actively participate in such platforms. Rather than just accepting the situation as it is, I would search and seek out options. Although it may not be possible to completely revert to the original state, by making such efforts, we can delay or alleviate the condition to some extent. (Female Older Adult, Session 1)

20. Through events and activities like this, we can not only raise awareness about dementia but also create a sense of urgency and explore ways to prevent it. (. . .) It is necessary to provide (medical and scientific) information. (Male Older Adult, Session 2)

21. You mentioned that depression screening is done once a year. It would be better if it was done more frequently, like every six months, like dental scaling. This is because as someone who continuously takes care of patients, I also feel very sad. (Female Caregiver, Session 3)

ADRD screening needs:

22. In Korea, once individuals reach the age of 66, they are obligated to undergo mandatory (ADRD) testing every two years. It is said that these tests can also be conducted at public health centers. Korea has a large number of public health centers, but in the United States, they are not well-known. There’s a lack of interest and awareness. As I continued to show interest as a caretaker, I realized that in Korea’s situation is much better. (Female Caregiver, Session 3)

23. I believe that lowering the age for ADRD screening (to like 40 or 45 years old) will increase some awareness when getting older. (Female Older Adult, Session 1)

Abbreviation: ADRD = Alzheimer’s disease and related dementia.