Scrutinizing access to dementia information

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Jul 29, 2018 - P: “The person with dementia thinks they are being insulted.” ... smile) to live with me for a couple of years. Because I was sick ... laboratory for testing, do you speak Punjabi there or do you have .... but you can't trust everyone.
SCRUTINIZING ACCESS TO DEMENTIA INFORMATION, DIAGNOSIS AND SUPPORTS FOR PUNJABI AND KOREAN COMMUNITIES IN CANADA

SHARON KOEHN, MORGAN DONAHUE, MINAH CHO, FABIO FELDMAN, NEIL DRUMMOND 33RD INTERNATIONAL CONFERENCE OF ALZHEIMER’S DISEASE INTERNATIONAL, 26-29 JULY, 2018, CHICAGO, USA

OBJECTIVE • The Building Trust project aimed to understand the process of gaining access to dementia-related information, diagnosis, care and psychosocial supports by Punjabi- and Korean-speaking older adults with Alzheimer’s Disease and related dementias and their informal caregivers living in the Fraser Health region of British Columbia, Canada.

QUALITATIVE DATA COLLECTION, CANDIDACY APPROACH & FRAMEWORK ANALYSIS

METHODOLOGY

FOCUS GROUPS (N=6)

Punjabi-speaking • Older women (n=10) • Older men (n=10) • Working age men & women*

(n=9)

Korean-speaking • Older women (n=9) • Older men (n=8) • Working age men & women* (n=8)

DYADS (PWD & FCG)

Dyads

Separate interviews with PWDs & FCGs

Persons with dementia (PWD) and their family caregivers (FCG)

10 Punjabi

Residing in community or independent seniors living

5 Korean

“…Accomplishing access to healthcare requires considerable work on the part of users, and the amount, difficulty, and complexity of that work may operate as barriers to receipt of care. The social patterning of perceptions of health and health services, and a lack of alignment between the priorities and competencies of disadvantaged people and the organization of health services, conspire to create vulnerabilities” (Dixon-Woods et al. 2006: 11)

THE CANDIDACY FRAMEWORK

SEVEN DIMENSIONS OF CANDIDACY

SELF-/FAMILY IDENTIFICATION OF NEED

NAVIGATION: IDENTIFYING SERVICES AND GETTING THERE

PATIENT’S PRESENTATION OF THEIR CLAIM FOR CARE

PROVIDER’S ASSESSMENT OF THAT CLAIM (REFERRAL, TREATMENT?)

LOCAL CONDITIONS AFFECTING ACCESS (POLICIES, REPUTATION…)

PATIENT’S ACCEPTANCE /REJECTION OF TREATMENT OFFER

EASE OF ACCESS TO SERVICES (FLEXIBIITY, LOCATION, TIME…)

FRAMEWORK ANALYTIC APPROACH

PURPOSE

5 KEY STEPS

• A method for guiding qualitative analysis that was specifically developed for applied policy research with “specific information needs” and the “potential for actionable outcomes.”

familiarization

• Ensures that the methods used to arrive at findings are more explicit and transparent, so as to inspire confidence in their veracity among policy-makers and practitioners responsible for the decisions or actions that we hope to inform

indexing

identifying a thematic framework

charting mapping and interpretation

FINDINGS FOCUS GROUPS AND DYADS

IDENTIFICATION - FG •

Punjabi •



Mostly the person that has the problem understands that they are forgetting, but in our society, it is deemed age-related. So they don’t take it seriously. I have dealt with a person that has dementia. I took care of them for 10 years and earlier on they would say that they were starting to forget things. This person didn’t get help and eventually became so stubborn that they denied forgetting and having dementia.”

Korean



"P: They say they’re hungry, hungry.You see that in TV shows all the time. ‘They’re not feeding me and I’m hungry’ and so on."

IDENTIFICATION - DYADS • Punjabi • FCG: -I think the lack of knowledge. Even some people find it hard to go. Like having to go there.”

• "PWD: I am not educated. … I am illiterate.” • Korean • "I lost all my prayer scriptures. I was going to grab my wallet and I don’t know where they went. ... First, I lost my prayer scriptures, then I forgot. … Forgetfulness is also a disease?" (PWD) • "When I meet friends around my age, everybody says ‘I have the same problem’ so it’s considered a common thing for our age group and we let it go. We just talk about it rather than worry so much and try to do something about it." (PWD)

STIGMA OR SHAME - FG •



Korean •

RA: “Why do we feel that way? Why do we think ‘It’s embarrassing. I want to hide it. Other people won’t deal with me’?



P: “Because we’re Korean.”



P: “The old days. The bad habits that have been passed down from the old days from our ancestors.”



P: “Because we’re Korean, we’re introverted and unconfident.”



P: “Because the Korean people have a tendency to hide the illness, when they should really open up about it.



P: “Right. It’s the confidence thing.“

Punjabi •

P: “Yes, yes. They will say, “I don’t have it, I am normal.”



P: “The person with dementia thinks they are being insulted.”



P: “Even though you know you have a problem, you don’t tell anybody because you figure that people are going to talk bad about you."

STIGMA OR SHAME - DYADS • "We need information or education for dementia for Korean people. Koreans still view dementia as something to hide and to be ashamed of having.” (Korean FCG) • "Sometimes people think that person’s life is over. For example, we used to go to the seniors centre and he had friends there.They would always come and talk to him. Now there is only two or three that come and shake his hand. Otherwise, they just stay away. ... Those people think it is a contagious thing. That is not the case.“ (Punjabi FCG)

NAVIGATION – FG - KOREAN

• “RA: The individual and the family members have recognized the symptoms of dementia. What’s the first thing they need to do? What do they need to do first? P: Go on Naver (search engine in Korea)”

• "RA: Then how many of you go on the Internet to look up information yourself? P: Sometimes I do. P: There’s a lot on Youtube. RA: Oh so you all use the Internet then. P: Yes.”

NAVIGATION - DYADS • "RA: How did you get to the services that he required? FCG: Right now it’s okay because we live together. My family lives together, but if him and I were going to live alone then, you know, maybe like I go to the senior’s center then I will be worried about." (Punjabi) • "My daughter came for me (with a proud smile) to live with me for a couple of years. Because I was sick, she came all the way and lived with me from Toronto. She came by herself to care for me leaving her family behind." (Korean PWD)

NAVIGATION – FG PUNJABI • "No, they receive no help. Even the family members don’t let them out or take them to appointments or the hospital to get them treated. They don’t get them treated.” • “They don’t let them out of the house because they are worried they will get lost."

NAVIGATION TRANSPORTATION • Punjabi FCG: “Then we go by HandyDART, but the thing is that the bus comes and picks you up early and then they travel around picking other people up. That alone takes an hour. Then when they have to drop you off in the evening, it takes an extra hour then too because they have to drop everyone off along the way. It stresses me out so much, especially if I go somewhere without him and he is home alone."

LANGUAGE BARRIERS - FG • "Patients and the workers need to communicate with each other but when the patients don’t understand English, some of their daughters or sons leave notes for the workers such as, ‘Please clean something, do laundry for my mom.’ When they post them on refrigerator the workers see them and follow instructions.“ (Korean) • "The younger generation may not have a language problem. For people like us the elderly, we don’t know English. Any doctor you go to, he speaks English. This is also a very big hurdle for us that we cannot explain ourselves very well. Secondly, English is our second language. We cannot express our feelings and troubles the same way in English than we can in Punjabi. It is very important for services to be in Punjabi.“ (Punjabi)

LANGUAGE BARRIERS - DYADS • RA: “When you go to the doctor or you go to the laboratory for testing, do you speak Punjabi there or do you have to talk in English there?” Punjabi PWD: “I speak in Punjabi. I don’t speak English.” RA: “Does the doctor understand Punjabi?” PWD: “Yes, he understands.“ • Korean PWD: "It’s always my daughter-in-law, not my husband to take me to the hospital.” RA: “Because her English is good?” PWD: “Mmm. That’s right."

APPEARANCES & ADJUDICATIONS - DYADS • RA: “…your family doctor? You said he speaks Punjabi?” PWD: “No, no, if I have a disease, he will tell me about that disease, but he doesn’t explain it any further. He never tells me anything further.” •

FCG: “Language barrier does not sink in, so they always want me to come. So they can talk to me about his condition."

• FCG: “The specialist, the geriatrician, he was really brief and he did not answer any questions. …He didn’t make a lot of eye contact. I wasn’t satisfied with him."

APPEARANCES & ADJUDICATIONS – FG - K • "P: Koreans are usually appreciative and apologetic. We’re not stiff-necked, and we dress clean and show up for appointments, so doctors usually treat Koreans kindly. We don’t dress too casually like wearing slippers or jeans.” • "P: It’s a different culture. Their culture and our culture. For instance, the eating habits are different and everything is different, isn’t it? So when communicating, things might be vague.”

APPEARANCES & ADJUDICATIONS – FG - P • "Person that has moved from India, Indian people tell a detailed story to doctor and doctor diagnose him or herself. But over here the doctor asks, 'Are you feeling comfortable?', 'Do you feel like this?', 'How do you feel?'. Then 'do you want to do this?' or 'You don’t want to do this?'. Even about medicine. Then sometimes they feel confused.“ (Punjabi)

OFFERS AND RESISTANCE TO HOME CARE - FG • “Most Koreans find the work not neat enough and it’s not satisfactory to their standards so that’s why they try not to use the service.” (Korean) • "They do trust the (home support) agency. If they are coming regularly and if you tell them that this is a service and don’t think like, 'Your kids are not taking care of you, this doesn’t mean that.' 'Your kids are busy with work and all that.You can use this service and it’s for everybody. ... This is not for the family who is not taking care of seniors, but this is for helping and you can get help.' They do trust that if you say those things.“ (Punjabi)

OFFERS AND RESISTANCE TO LTC - DYADS • "My husband and kids said that she is not going to a nursing home. We will do as much as we can at home. She was such a nice lady. ... Even before she was diagnosed with dementia, she always said to take her back to her village in India instead of putting her in a care home so we want to respect that." (Punjabi caregiver) • "And I always tell her [daughter-in-law] that if my condition gets really serious then send me to a care facility. If I feel any worse, I’m thinking to reserve a spot myself but I don’t think it’s that serious yet." (Korean PWD)

SOURCES OF INFLUENCE - FG • “Right. Because us seniors don’t have places to go, so we gather at churches. If a program like that is offered at church, people are going to attend. Those who go to church." (Korean) • "P2: Workshops, classes, supports groups. P3: A lot more talks too. P2: A lot more talks, yeah. P4: Why not do something at the Gurdwara [temple], so many of them just sit there.” (Some participants agree) (Punjabi)

TRUST – FG - K • "There’s a lot of people who think that health care professionals in Korea are better. I know someone who used to go see a doctor here and she went to Korea. (P: The system is good.) She was getting medical care in Korea, and the Korean doctor said to her, ‘Your illness has gotten worse due to the errors made by the Canadian doctor.’” • “These things are on the news sometimes too. People go to Korea if they are unable to treat it in Canada."

TRUST – DYADS - P • RA: “Do you trust anyone? In your family, in your community, or anyone? Do you have faith in somebody?” PWD: “Only with my family.” RA: “Okay your family. What things do you trust them for?” PWD: “Giving and taking." • FCG: “I was thinking of hiring private [home] care, but you can’t trust everyone.There are so many things in the house and sometimes the girls are home alone.You never know. Even if the boy is home alone and someone falsely accuses him of something.You never know. It is very difficult."

TRUST - DYADS • Korean PWD: “I have my wife who takes good care of me (both laugh). I trust her. She came to marry me at age 19. I was 22. … She was 19 and didn’t know anything. She is such a nice wife. I have no complaint."

• Korean FCG: “[My family doctor] doesn’t even touch me. Not even a stethoscope on me. He just does paperwork and tells me (to wait). ... He is useless. At first, I didn’t want to see him, but I have no other choice now."

LOCAL OPERATING CONDITIONS - DYADS • RA: “Are there any services that are not offered in Surrey and you have to travel elsewhere for?” Punjabi FCG: “No. So far, everything is in this region.” • RA: “Have you heard of any dementia program offered by Fraser Health or any hospitals?” Korean FCG: “I thought there might be and should be something like that. But, I didn’t think there was any such thing for Koreans or any services readily available to Koreans."

지원

KEY FINDINGS

Family involvement – barriers and opportunities

Culturally distinct views of aging and illness – stigma

Limited understanding of dementia - stigma

Low education and literacy, low access to computers (*P)

Young-old Koreans more computer savvy and literate

More resources in Punjabi than Korean in BC – navigation difficulties (*K)

Lack of trust of home care, LTC, language and cultural incongruence

Gurdwaras, churches – trusted sources of information; outreach potential

CONTACT: SHARON KOEHN AT [email protected]

THANK YOU

This research was supported by funding from the Alzheimer’s Society Research Program, Canada [Grant # 17-26].