Investigating dementia literacy among community-dwelling adults and older adults in Macau: A mixed methods study

1 Background: As population ageing and dementia incidence continue to increase worldwide, 2 health systems are urged to empower the public to address factors related to dementia. This 3 study aims to assess Macau citizens’ knowledge of dementia, attitudes towards persons with 4 dementia, and help-seeking behaviours and intention toward dementia. 5 6 Methods: This is a mixed-methods study with both quantitative (cross-sectional survey) and 7 qualitative components (focus group interviews). The Alzheimer’s Disease Knowledge Scale 8 (ADKS) and Dementia Attitude Scale (DAS) were utilized in the quantitative data collection, 9 whereas focus group interviews were employed to gather context-specific understanding of 10 dementia in the local setting. Descriptive statistics and Chi-square tests were used to analyze 11 quantitative data, while content analysis was used for qualitative data. 12 Results: The overall level of knowledge on dementia was low (ADKS mean total score = 17.38, 14 SD = 3.31), with the least amount of knowledge in the caregiving domain. Meanwhile, attitudes 15 toward persons with dementia was generally positive (mean [SD] = 89.07 [11.99]). Many of 16 the focus group participants were also uncertain regarding the availability of dementia services 17 in the region. The general public was interested to obtain dementia information through social 18 media. 19 Conclusions: Efforts should be made to build up dementia literacy in Macau, especially in 21 terms of caregiving. Information about dementia could be disseminated in social media and by 22 healthcare professionals.

The participants were asked to indicate the existing channels (television, leaflets, 76 WeChat, Facebook, etc.) and preferred channels for obtaining relevant information about 77 dementia services. A list of services or support to PWD in the community was given. The 78 respondents were also asked to rate their preference, ranging from "0" (least preferred) to "5" 79 (most preferred). Demographic information about the participants was collected.  cultural and contextual relevance in Macau [16]. A discussion was conducted based on the 95 contents of the vignette as well as the informants' experience. Guiding questions were used to 96 stimulate the informants to discuss issues related to dementia. Audio-tape recording of the 97 interviews was made, upon approval of the participants.   Knowledge about dementia and its prevalence 121 The majority of the respondents (143/199, 71.9%) were able to give correct answers to 122 more than 15 items in the ADKS ( Table 2). The mean score of the ADKS was 17.38 (SD 3.31).

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The respondents had the least amount of knowledge about caregiving. In the focus group 124 interviews, the informants expressed that dementia was quite common among older adults and 125 they admitted that they did not talk about this illness in the region.  to more than half of the items relating to dementia symptoms (there were 4 items in this category) ( Table 2). In the focus group interviews, the informants were able to describe 132 symptoms of dementia such as the inability to name relatives, the loss of self-care ability, and 133 forgetting to turn off the stove after cooking (please refer to Table 3 for the direct quotations 134 from the focus group interviews).  Under-reporting of dementia cases in Macau I think now there are more (dementia cases). In the past, we did not talk about it or we did not know about it…. Some (people) can have (dementia) at a young age. In other words, it is not an illness only for people in their seventies, eighties….

Knowledge about the symptoms of dementia
The medicine has been taken, but he/she said that the medicine has not been taken … the nurse in the hospital said that he/she has taken the medication…. For example, he/she forgot to turn off the fire after the water had boiled…. Or he/she mistook sugar for salt … they can't take care of their own living … they forgot how to come back home when they went out….
Yes, he is so senile that he cannot remember anything … he cannot recognize himself or his own children.
For instance, he/she might mistake the refrigerator for the wardrobe and vice versa, and put the clothes into the refrigerator … and put the food, vegetables, and fish into the wardrobe.
Assessment and diagnosis is the first step in the whole process I suggest that he/she consult a doctor first. In fact, a dementia medical centre opened in Macau in September of last year. I think that he/she should be assessed by a doctor … and assessments, such as a cognitive functioning assessment should be performed. If he/she is diagnosed with dementia, medications might be used … some brain training can be received to help him/her.

Strategies to support persons with dementia
Family members can make a nameplate for him/her if they allow him/her to go out and return home… [Interviewer (simultaneously): Oh, Okay … make a nameplate for him/her]. Mark down the telephone number, contact person, as well as his/her address… Talk about something that will interest him/her. Let him/her start a topic, then gradually talk to him/her. They (PWD) mostly will talk about their past and their childhood. We can guide them to talk about things in the present. That is … starting from the things in the past that they can remember. When they start to talk about a topic, we talk to them gradually…. When we talk more, they start to remember. Recently I am … When did you come and visit me? That is … to start with their topics, they normally talk about their past… Some of the non-government funded or government-owned elderly homes provide some places for … people with dementia. In Macau, some homes/hostels are specialized and accept people with dementia.

Understanding of the prognosis of dementia
It seems that dementia … cannot be altered from bad to normal. … Same for medication… It cannot reverse his/her illness… …[It is possible to] slow it down but it (dementia) cannot be cured. The doctor said that it cannot be cured. The doctor has made it clear that … he/she cannot recover … but … for instance, if treatment is not received, he/she may completely forget you within a year. If treatment is received, it [the dementia] may slow down for three to four months. That is, comparatively, it will slow down a bit, but he/she cannot recover. (The doctor) has made it clear that yes, it can only be slowed down… I think maybe it is okay for a year, but when it reaches the third year … and later … I will think of their (PWD) friends in the community. How about their friends or their families?… As their health continues to deteriorate, it will get harder and harder for their caregivers.
At the late stage, the ability to swallow will be lost…. My friend's mother at her late stage … refused to eat. I think it was because she had difficulty in swallowing… . We will also employ a maid to take care of him (24 hours a day). Therefore, I think, this time it is also the family members who will offer help to him.
If the family members can take care of them (PWD), then of course it will be better. If you cannot take care of them and need to go to work, you can only place them there [in an elderly home]. No other solution.
Caregivers should possess the attributes like: they should care about and love the PWD, they need to accompany and always talk to the PWD, and they should be patient with the PWD and respect them.
Positive attitude: feeling guilty to locate PWD to nursing home No matter how, an elderly home … she seems really … Although we have chosen a better elderly home for her, she will still be … in fact ( The older people and the children are living together. When he [PWD] has an outbreak of symptoms, he can be … very emotional sometimes.… This will scare the children. When he [person with dementia] is scolding someone, it is better not to stimulate him. People with dementia can lose control of their emotions [Interviewer (simultaneously): Yes…]. They can scold people, and sometimes even beat others. If you go further and trigger them … Since you are not their relatives … The most important point … is that … I will choose to stay away from them … because … (I) do not know how crazy they can get… Negative attitudes: whose responsibility?
We think that the most difficult time was going with her frequently for follow-up consultations. And the other thing was 'who would go this time?' Maybe we have a comparatively large family. Among us … who was the one who took the responsibility to take care of her? … This caused … some bigger conflicts within the family.
Help seeking and intention: willing to find out Actually, we are not quite sure in Macau which department provides this service [dementia service]… but we will find out … because Macau is a small place.… If it really happens, we will ask about … which is the appropriate department? … [and] how to provide point-to-point service?

Channels for getting dementia information
Television is the best (channel). And … or on the bus, post more posters. These methods can reach the majority of people.
For dementia education…we could target for caregivers, middle-aged people, and retirees. They are very close to persons with dementia.
Help-seeking behaviour: Family members are important. If the family members really cannot not handle it …when it becomes worse and more severe, you should consult Family member is the first one to approach a doctor. After that, you should consult a social worker. Ask the social worker what can be done. This should help.

Challenges encountered in help-seeking
What resources do we have? Usually, it is the family members … who will help him/her. The hospital only provides medications to him/her… Every half year, he/she goes to the hospital for a follow-up consultation, and medications will be provided. Then, he/she (a social worker) will say: "Some centres provide this kind of (dementia) intervention. In Macau there are many cases of senile dementia, therefore, it is difficult to obtain the service. My … social worker has given me a letter for my mother to make an appointment for receiving (dementia) interventions. We were in the queue and waited for more than 1.5 years; finally, we decided to give up.
Help-seeking behaviour: suggestions of facilities, and the services they know I hope that there are rehabilitation centres to help those people (with dementia). The Peak [the public hospital in Macau] is only one for medical consultations. After the consultations, they need rehabilitation centres.
It seems that there is a service called "Personal Emergency Link Service". Their staff will regularly [call] you…. For instance, you as an older adult, after installing this service, the staff member will regularly ring you and talk to you.     was insufficient in Macau. The most preferred modes of information delivery were television (45.5%), hospital websites (42.5%), and newspapers (39.0%) ( Table 4). Discrepancies were 200 found between the preferred mode and the existing mode of information delivery in television 201 (preferred vs existing mode: 45.5% vs 28.5%, p < 0.001) and in other channels. About 30% of 202 the respondents preferred to receive information from Facebook and WeChat, but not much 203 information was being disseminated via these two social network sites at present. The 204 respondents considered their family members as the most important people in dementia care.

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When family members were not available to provide help, resources from the community, such 206 as day care centres (183, 91.5%), skills training services for patients and caregivers (162, 81%), 207 and caregiver support services (162, 81%), will be the useful services for patients and 208 caregivers. Nonetheless, two informants recalled the challenges that they faced when 209 attempting to access dementia services, as they did not know the required procedures.  continue to be maintained in the community. Aside from the previous investigation of dementia 217 literacy in 34 cities in China [5], this study contributed to our understanding of dementia 218 literacy in this special region. These findings have been summarized in Figure 1. With the practice of filial piety in Chinese families [17], Macau citizens were most 224 willing to support their parents with dementia although their knowledge about dementia 225 symptoms and caregiving skills was not high. The ADKS total score in Macau was much lower 226 than the scores achieved by American students, older adults, senior centre staff, dementia 227 caregivers, and dementia professionals [13]. There are many reasons for the low level of 228 dementia knowledge in Macau. One possible reason, as shown in the focus group interviews, 229 was that people in the region 'do not talk about the illness'. This best represents the concept of 230 harmony in Chinese culture [17], in which dementia is considered as a taboo and people try to 231 hide this illness from others, or some people misunderstand dementia as a 'normal age-related 232 memory loss problems' [8].

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Many Macau citizens were not aware of the existence of dementia assessment services, 234 although these services have been in place for several years. For instance, free-of-charge 235 cognitive assessments have been offered in seven health centres in Macau since 2016 [19].

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Notably, low levels of knowledge of treatment and care leads to delayed diagnosis and poor 237 planning of treatment and care [18]. Therefore, the Macau government and service providers are recommended to put resources into publicizing how to access cognitive health services.

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Upon receiving a diagnosis of dementia, cognitively impaired older adults will receive 240 subsequent follow-ups in a dementia clinic in the only public hospital in the region [19]. Other 241 than the government's initiatives, Kiang Wu Nursing College of Macau offers comprehensive 242 assessments, diagnosis, treatment, and support services for caregivers in its memory clinic [20].

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Macau citizens were generally kind to persons with dementia, and they were willing to 244 talk, care for, and live with persons with dementia [21,22]. Nonetheless, some respondents 245 were not comfortable about dealing with persons with dementia, particularly those with 246 agitated behaviour. Cultivating positive attitudes towards dementia should be encouraged so 247 that community members will be willing to develop contacts with PWD [22]. Youth Federation for their support and assistance in collecting data, and to the anonymous 329 reviewers for their thoughtful review and guidance.