Summary

Objective:To examine the prevalence of misconceptions about dementia and its associated factors in Hong Kong. To address the relationship between misconceptions and tendency to seek treatment or information.

Design: Survey type quantitative study.

Subjects: 1002 Hong Kong people (433 males and 569 females).

Main outcome measures: Perceived prevalence of dementia, misconceptions about dementia, treatment seeking tendency, and interest in dementia related information.

Results: High level of misconceptions about dementia was observed. In general, male gender, absence of demented relatives and low education level predicted endorsement of various misconceptions about dementia. Participants who displayed higher level of misconceptions about dementia were less willing to seek treatment in face of dementia and displayed less interest in dementia related information.

Conclusion: More can be done by concerned parties to increase the general public's awareness of dementing features so as to promote its early detection and intervention. Besides looking out for commonly missed symptoms and conducting proper assessments, general practitioners can help clarify myths and advise on the benefits of early treatment.

Keywords: Dementia, Chinese elderly, Misconception, Treatment seeking.

摘要

目的：旨在調查在香港對癡呆症存有誤解的普遍性和其相關因素，同時探討該錯誤觀念與尋求治療或疾病資訊的意向之間的關係。

設計：測量式定量研究。

對象：1002名港人(男性433人和女性569人)。

測量內容：認為癡呆症的普遍性，對癡呆症的誤解，尋求治療的意向，對有關癡呆症資訊的興趣。

結果：發現對癡呆症存有誤解甚為普遍。一般而言，男性，沒有親屬患有癡呆症，和低教育水平都可料到會認同各項癡呆症的誤解有較深程度的誤解者較不願意就癡呆症尋求治療，亦較少對相關資訊顯示興趣。

結論：有關團體可多幹一點以加強公眾對癡呆症的警覺，從而使患者及早得到診斷和治療。普通科醫生除了可留意易被忽略的症狀和進行正確的評估，亦可幫助澄清對癡呆症的誤解及忠告病人有關及早治療的好處。

主要詞彙：癡呆症，華人長者，誤解，尋求治療。

---

Introduction

Hong Kong people are living much longer due to advances in medical care and better nutrition. Accelerated health problems and associated disabilities, however, accompany the ageing process, and dementia is one such condition. In Hong Kong, 4% of elderly persons aged 65 or above and 6% of those aged 70 or above suffer from dementia.¹ The value of early diagnosis to facilitate effective intervention has been highlighted by researchers around the world^2-5 and the medical, social, emotional, and psychological benefits of early diagnosis are widely acknowledged.⁶ Despite these, early dementia remains under-diagnosed⁷ and patients with early dementia may be unrecognized for some time.⁸

The under-diagnosis of early dementia can partly be attributed to the lack of natural distinction between dementia and age-related cognitive decline.⁹ Individuals with cognitive impairment may attribute their memory loss to their age¹⁰ and their carers may also accept early signs of dementia, such as cognitive changes or functional loss, as part of ageing.^11-12 Attributing symptoms to normal ageing was one of the reasons for delayed diagnosis in elderly patients who were diagnosed as dementia during a hospital admission for unrelated problems.¹¹ Notion of dementia frequently comes in late and results in extended time interval between initial signs of dementia and first diagnosis.¹³ Diagnosis of dementia is often prompted at the presence of more severe symptoms and crises,¹⁴ a time when referral may be perceived as "too late".¹⁵

The major challenge for early diagnosis is the lack of knowledge about the early signs and symptoms of dementia.¹⁶ Since dementia shares common grounds with mental health problems in that early signs and symptoms are subtle and easily overlooked, reviewing findings on barriers to help looking out for mental health problem may aid our understanding of barriers to diagnosis of early dementia. The major barrier towards treatment seeking for mental health problems is that people often do not recognize their symptom as a problem.¹⁷ Lack of knowledge about the illness and available treatment are the most commonly cited reasons for not seeking treatments.^17-20

To facilitate more effective treatment for dementia, early detection is necessary. Identifying the barriers to treatment will shape future service provision and public education, allowing more effective care. Lack of knowledge about early signs of dementia may hinder early diagnosis. Although researchers have yet to examine dementia related knowledge in the Hong Kong Chinese population, some studies suggested that most Hong Kong people have poor medical knowledge.^21-24 Our study thus investigated misconceptions about dementia in Hong Kong. Our objectives were:

1. To explore the prevalence of misconceptions about dementia;
2. To unearth factors predictive of such misconceptions;
3. To examine the effects of dementia related misconceptions on participants' treatment seeking tendency and interest in dementia related information.

Method

Recruitment of participants

The Asia Pacific Research Centre of The Chinese University of Hong Kong was commissioned to conduct this survey. Phone numbers were randomly selected from the Hong Kong residential telephone directory. To ensure that those not published in the directory were not missed out, the last two digits of all numbers were also replaced with computer generated random numbers. Individuals aged between 18 and 64, who understood Cantonese or Mandarin, were eligible to participate in the study. A total of 3374 calls were made: 311 households did not have eligible respondents; 183 households had language barrier; 909 cut off the phone call immediately and 110 numbers could not be reached. Among the remaining 1862 eligible respondents, 1002 agreed to participate in the study, yielding an overall response rate of 53.8%.

Participants

A total of 1002 Hong Kong people (433 males and 569 females) participated in the study through responding to a phone survey. Participants' age ranged from 18 to 64. Most respondents attained secondary level of education (58.7%) and nearly one third (28%) graduated from diploma or degree programmes. Most respondents reported being employed (62%) or were homemakers (18%) at the time of the study. Demographic characteristics of participants are summarized in Table 1.

Demographic variables

Participants were asked to provide information on their age, gender, education level and whether they had relative affected by dementia (Presence of demented relatives). Participants were also asked to estimate the prevalence rate of dementia among elderly persons age 80 or above in Hong Kong (Perceived prevalence of dementia) and to indicate whether they were interested in knowing more dementia related information (Interest in dementia related information).

Instruments

The questionnaire used in the present study was compiled by a team of mental health professionals with extensive experience in dementia care, including geriatrician, community health physician, social worker, and occupational therapist. The questionnaire was pilot tested in a group of staff working in a local dementia care unit before its actual use.

Misconceptions about dementia

Six self-constructed items were used to assess participants' misconceptions about dementia. Sample items included "Dementia is the same as depression", "Only elderly persons are affected by dementia", etc. Participants were asked to indicate whether they agree with each item and the sum of their scores over the 6 items represents their level of misconceptions about dementia. A higher score indicates a higher level of misconception.

Treatment seeking tendency

Four self-constructed items were used to assess participants willingness to seek treatment across different scenarios should they suspect their family member is suffering from dementia. The 4 items cover a variety of scenarios depicting different symptoms of dementia. Sample scenarios included "My family member has difficulty handling financial transaction", "My family member is incontinent", etc. Participants were asked to indicate whether they would seek treatment in the respective scenarios.

Results

About 14% indicated that they had close relatives affected by dementia at the time of the study and 35.3% believed that dementia was not treatable.

Participants in the present study had high levels of misconceptions about dementia. 76% of them endorsed at least one misconception about dementia, and 13% endorsed three or more. Common misconceptions included "Only elderly persons are affected by dementia" endorsed by 32% and "Forgetting simple expression is not an early symptom of dementia" endorsed by 28%. Although chi-square test revealed no significant difference between the proportion of participants who endorsed more than one to three misconceptions about dementia (p>.05), significant difference was observed between participants, who had demented relative and those who did not, in their total number of misconceptions about dementia endorsed. The former reported significantly fewer misconceptions (t=2.381, p<.05). A breakdown on the number of participants with demented relatives are presented in Table 2.

Correlation analyses were used to explore potential relationships among major variables. All variables were related in expected directions. Results of the correlation analyses are summarized in Table 3.

A series of binary logistic regression analyses were conducted to determine factors predictive of participants' misconceptions. The method of forward conditional was used and demographic variables, including participants' age, gender, education level, and presence of demented relatives were entered into the model as predictors. In general, male gender, absence of demented relatives and low education level predicted endorsement of various misconceptions about dementia. Older age predicted endorsement of "Only elderly persons are affected by dementia" but younger age predicted endorsement of "Forgetting simple expression is not an early symptom of dementia" and "Having difficulty handling financial transactions is not an early symptom of dementia". Results of the binary logistic regression analyses are summarized in Table 4.

Binary logistic regression analysis was also used to determine participants' tendency to seek treatment in relation to dementia and their interest in dementia related information. The method of forward conditional was used and perceived prevalence and misconceptions about dementia were entered into the model as predictors. Regression results indicated that seeking treatment in any one of the depicted scenarios and interest in dementia related information were predicted by participants' misconceptions about dementia. Participants who endorsed more misconceptions about dementia were less conscious about seeking treatment and less interested in dementia related information.

Among participants who were willing to seek treatment, physicians in public hospitals, private practicing specialists, and family doctors were the more preferred alternatives for medical consultations. Participants' preferred alternatives for medical consultation are summarized in Table 1.

Discussion

How patients and their caregivers interpret early symptoms of dementia influences their behaviours in seeking consultation and treatment. This study examined the prevalence of misconceptions about dementia and its effects on treatment seeking tendency and interest in dementia related information among Hong Kong Chinese. Results from the present study suggested a high prevalence of misconceptions about dementia in the local population. More than 70% of the participants endorsed at least one of the six depicted misconceptions about dementia and 13% endorsed 3 or more of the misconceptions. Gender, education level and presence of demented relatives were prominent factors predictive of the various misconceptions. Male participants displayed a higher level of misconceptions while those who attained higher level of education and those who had demented relatives tended to display a lower level of misconception. This finding is consistent with previous findings that female sex, higher education and more previous contact with patient results in better knowledge of the illness and higher symptom awareness.²⁵ Although age was predictive of participants' misconceptions about dementia, its effect was less clear. While advanced age was related to endorsement of "Only elder persons are affected by dementia", younger age was related to endorsement of other two misconceptions, namely "Forgetting a simple expression is not an early symptom of dementia" and "Having difficulty handling financial transactions is not an early symptom of dementia". Different dimensions may exist in misconceptions about dementia and each relate to age differently.

This study showed that high level of misconception about dementia was associated with low treatment seeking tendency. This result agrees with previous findings that lack of knowledge about the illness and available treatment are the major barriers for seeking treatments for mental health problems^17-20 and echoes that the major challenge for early diagnosis of dementia is the lack of knowledge about the early signs and symptoms.¹⁶ Nonetheless, a high perceived prevalence of dementia also predicted reluctance in treatment seeking. It may reflect respondents' attribution of dementia symptoms to the normal process of ageing and thus discounting the need to seek treatment, a major reason for delayed diagnosis observed in previous studies.^10-12

Many participants in this study believed that dementia was not treatable. This finding calls for education on possible treatment for dementia. As mentioned earlier, lack of knowledge about available treatment is a major reason for not seeking treatments.^17-20 It has also been argued that to promote early diagnosis of dementia, both the physician and the lay public need to be convinced that something can be done about the illness.¹⁴ Although dementia is irreversible, symptomatic treatment, continuing care, mobilization of resources and family support are still available.¹⁴

Our result suggests that it is necessary to heighten public awareness of the early symptoms of dementia. It, however, indicated a lack of interest in dementia related information among individuals displaying high level of misconceptions. This poses a major challenge for public education programmes. Delivering dementia related information to them will require massive effort. More can be done by various parties to increase the public's awareness of dementing features so as to promote its early detection and intervention. General practitioners and family physicians, for instance, can look out for commonly missed symptoms and conduct proper assessments to facilitate early detection, and to clarify myths and advise patients on the benefits of early treatment.

Conclusion

This study was an initial attempt towards understanding misconceptions about dementia in Hong Kong. The results, however, should be interpreted with caution. Although the response rate was satisfactory for a telephone survey, individuals aged 65 or above and 17 or below were excluded, and thus the results could not be generalized to the entire population. Moreover, items in the survey were largely self-constructed and might not be able to capture all dimensions of the variables of interest. Individual items measuring misconception about dementia might also carry different weight towards the final score. Further studies should address these issues.

Key messages

1. Misconception about dementia was common. 76% of the participants endorsed at least one misconception and 13% endorsed three or more.
2. High level of misconception about dementia was associated with low treatment seeking tendency and a lack of interest in dementia related information.
3. General practitioners and family physicians can help clarify myths and advise patients on the benefits of early treatment.

---

---

References

Appendix

Items constructed to assess misconceptions about dementia Dementia is the same as insanity / mental illness 痴呆症等同黐線或患精神病 Dementia is the same as depression 痴呆症等同抑鬱症 Only elderly persons are affected by dementia 只有老人才會患上痴呆症 "Being able to remember what happened 20 years ago, yet forget what one had for breakfast" is not a sign of dementia “忘記早餐吃過甚麼，卻清楚記得廿年前的事”並非痴呆症徵狀 "Forget simple expressions" is not a sign of dementia “忘記簡單詞語”並非痴呆症徵狀 "Have difficulty handling financial transactions" is not a sign of dementia “錢銀找贖出現困難”並非痴呆症徵狀

Items constructed to assess treatment seeking tendency Doctor's advice will be needed if my family member can remember what happened 20 years ago, yet forget what one had for breakfast 家人出現“忘記早餐吃過甚麼，卻清楚記得廿年前的事”的情況，便有需要見醫生 Doctor's advice will be needed if my family member forgets simple expressions 家人出現“忘記簡單詞語”的情況，便有需要見醫生 Doctor's advice will be needed if my family member has difficulty handling financial transaction 家人出現“錢銀找贖出現困難”的情況，便有需要見醫生 Doctor's advice will be needed if my family member is incontinent 家人出現“隨處大小二便”的情況，便有需要見醫生

---