Knowledge, Awareness, and Perceived Threat Toward Alzheimer’s Disease Among the Family Caregivers of Individuals with Chronic Physical Conditions in Bangladesh

INTRODUCTION

Alzheimer’s disease (AD) is the most prevalent type of dementia and is a chronic, progressive, and irreversible neurological illness.^1,2 AD affects more than 46 million individuals globally,³ and it has a significant social burden in some overpopulated countries due to its effects on elderly people.⁴ Bangladesh is an overpopulated country where average life expectancy has risen from 60 years in 1971 to 72 years to date, according to the World Bank.⁵ A recent study found that 8.0% of older Bangladeshi people have dementia.⁶ According to the Bangladesh Bureau of Statistics (BBS), the nation currently has over 2.0 crore seniors, accounting for around 9.28% of the overall population.⁷ According to the World Health Organization’s (WHO) statistics released in 2018, AD and dementia mortality in Bangladesh totaled 14,340, accounting for 1.85% of total deaths.

AD is often considered a stigmatized condition.⁸ People typically associate AD with insanity,⁹ or as divine vengeance.¹⁰ Moreover, inadequate knowledge about AD among healthcare professionals has been shown to have a detrimental effect on patient outcomes.¹¹ In general, caregivers (professional or family) possess better knowledge than non-caregivers, particularly when it comes to prognosis, expected personality changes, and community resources.^12,13 Moreover, individuals obtain information on AD and other age-related memory problems from a variety of sources, which may affect the accuracy of their AD knowledge.¹⁴

The general public’s knowledge and views concerning persons with AD have been studied very sporadically.¹⁵ A study discovered a low to extremely low level of AD literacy in a comprehensive analysis of 40 research examining the public’s understanding of AD and the most frequently examined correlates of knowledge were age, sex, and education.¹⁶ One study that looked at 34 studies largely from Europe and the United States (US) found that over half of those polled believed that dementia is an inevitable aspect of aging and that it could not be prevented.^17,18 Goni et al. recently discovered that among diabetic patients in Dhaka, Bangladesh, 94.9% did not know how AD develops, 96.8% did not know how it affects people’s lives, and 97.6% did not know what symptoms and risk factors it carries.¹⁹

Previous research has established that AD patients’ awareness was particularly deficient in terms of initiative dimensions and emotional blunting.²⁰ Additionally, socio-cognitive theories demonstrated that awareness is a necessary condition for changing behaviors.²¹ To boost individual awareness, a person’s knowledge and risk perception should be enhanced or altered.²² A study in Saudi Arabia investigated public awareness of AD reported almost 60% of those polled believe that forgetfulness in the elderly is a normal part of aging process and does not necessitate medical intervention.²³ Various methods have investigated awareness of impairment in AD, but each has its limitations.²⁴

A few studies have looked into the factors that influence how people perceive the threat of the risk of AD.^25,26 The role of cultural beliefs and scientific knowledge of AD in influencing the perceived threat of AD in a sample of Chinese American older adults was investigated using a Sociocultural Health Belief Model (SHBM).²⁶ Authors observed that higher levels of the perceived threat of AD were attributed to both cultural beliefs about AD and factual knowledge about AD.²⁵ According to Ostergren and colleagues, the perceived threat was significantly higher for those aged between 50-64 and 65-74 compared to who were 75 or above. Moreover, those with a family history of AD had a significantly higher perceived threat than those without AD.²⁷

Majority of the people in Bangladesh are unaware about the symptoms and consequences of AD and frequently disguised by the fact that it is a natural aging process, and no treatment options are available.²⁸ Lack of adequate research, awareness building initiatives, and existing misconceptions among general population contributes to the treatment derailment, harassment, and lack of empathy towards AD patients.²⁸ Raising public knowledge and awareness of AD is crucial for optimizing care and ultimately enhancing the quality of life of people diagnosed and their caregivers.²⁹ Only a handful of studies looked at the status and knowledge of AD among general Bangladeshi population.^28,30,31 However, knowledge, awareness, and perceived threat related studies among family caregivers of individuals with chronic physical conditions have not been investigated in Bangladesh previously. Therefore, the aim of this study is to evaluate the level of AD knowledge, awareness, and perceived threat among the family caregivers of individuals with chronic physical conditions of Bangladesh.

METHODS

RESULTS

About 45% of the participants were at or below the age of 30, and 26.3% were between 31-40 years (Table 1). The male (52.3%) participants were slightly higher than the female participants. Most participants (77.6%) were married. The participants came from different regions of the country whereas Dhaka and Chattogram each had 20.7% of the participants, Mymensingh had 19.2%, and Barisal and Rangpur had the rest. Two-thirds of the respondents lived in rural areas, while one-third lived in cities. About 17.6% had no formal education, 27.6% had ended primary school, 21.5% had completed the SSC, 20.5% had finished the HSC, and only 12.8% had a bachelor’s degree or higher. Even though most of the participants had completed different levels of education, only 14.8% were engaged in jobs; other 14.0% were in business, and the remaining 71.3% were classified as “others” which included retirees, people without jobs, and people who works temporarily. Regarding their monthly income, 30.8% of the participants made less than 10,000 BDT per month, 51.7% between 10,000 and 30,000 BDT per month, and only 17.5% earned more than 30,000 BDT per month.

Table 2 enumerates the key findings regarding knowledge of AD among the study participants. The majority (68.2%) of the participants did not know people with dementia or AD. Among the rest of the respondents who knew people with AD reported that they were related to the patients through family member (9.2%), through relatives (9.6%), via friends (0.4%), and “others” category (12.6%) which includes coworkers and acquaintances. Only 12.6% of participants reported personal experience providing care for people with dementia or AD. Regarding interacting directly with patients, 23.8% of participants had done so with people with dementia or AD, while the majority (76.2%) did not. Regarding AD-related support groups and educational programs, only 3.3% ever participated. The information sources regarding AD were diverse, with 4.0% turning to family, 2.9% to healthcare professionals, 4.4% to friends and acquaintances, and 16.3% to media websites. A significant number of people (72.4%) said they needed access to information related to AD.

The majority of participants (95.98%) did not respond correctly to the statement that “It has been scientifically proven that mental exercise can prevent a person from getting AD.” as presented in Supplementary Table 1. Most participants (59.20%) correctly responded that “Poor nutrition can make the symptoms of AD worse.” Items with the poorest responses, included those related to AD’s symptoms (Mean = 1.02, SD =±1.06 in 4 items). Conversely, items with the highest correct responses included those related to life impact.

About 47.5% of the participants mentioned that memory loss and forgetfulness in older people were abnormal and should be checked out by a doctor, but 52.5% disagreed with this perception (Table 3). Assessment of changing the planning matters for everyday life, 67.0% of respondents agreed that the difficulty in balancing the financial accounts was expected in the elderly. Additionally, 72.8% of participants disagreed with the fact that if one of their relatives diagnosed with AD, they are not going to notify them. It was observed that 26.2% of participants believed black magic, psychological distress, or bad eyes as potential causes of AD, contrary to scientific understanding. In addition, 56.1% of the study participants acknowledged that they would entertain a popular alternative medicine treatment if one their relatives get AD. Approximately 56% respondents agreed that the courts should intervene to protect patient rights if the AD patients face difficulty with everyday tasks. Approximately 85% of the participants disagreed that they will neither embarrassed nor deny the diagnosis if one of their relatives diagnosed with AD.

Table 4 shows how the participants perceived threat toward AD. When asked if they wanted to know how likely they would get AD in the future, 60.2% of participants answered positively. However, when questioned about their belief in eventually developing the disease, only 31.8% of the participants agreed that they will develop AD someday. Moreover, only 26.8% stated that they were worried about getting AD someday.

Table 5 presents and compares the mean scores of ADKS based on different categories of independent variables. The mean ADKS score was higher among younger age group, respondents living in the urban areas, respondents who completed graduation. The age group, place of living, and education were found to be significant for all ADKS dimensions. Regarding employment status, the results showed that ADKS scores for most of the ADKS dimensions were statistically significant, except for the risk factors and course of disease dimensions. ADKS scores also varied based on whether or not respondents had previously interacted with patients with dementia or AD. People who have cared for someone with dementia or AD in the past tend to have higher mean scores on the dimensions than those who have not.

The correlation assessment in the Table 6 reveals that perceived threat was positively associated with all domains of ADKS. Within ADKS, all domains were found to be positively inter-related. All correlations were found to be highly significant (p < 0.001).

The multiple linear regression results in Supplementary Table 2 demonstrated that several factors influencing the mean ADKS score of the participants. Individuals aged 30 or below (Coeff: 3.90, p = 0.001), 31-40 years (Coeff: 3.78, p = 0.001), and 41-50 years (Coeff: 4.41, p=<0.001) had significantly higher ADKS scores compared to the reference group (above 60 years), after controlling for all other covariates. The place of residence was also statistically significant. Compared to the rural, after controlling for all other explanatory factors, urban residents had higher mean ADKS score (Coeff: 1.45, p = 0.004). Participants with primary education (Coeff: 1.29, p = 0.073), SSC (Coeff: 2.02, p = 0.010), HSC (Coeff: 2.59, p = 0.002), and graduate and above (Coeff: 3.40, p < 0.001) exhibited significantly higher ADKS scores compared to those with no formal education. Employment status also influenced the ADKS scores significantly. Respondents who were service holders observed a 1.50-point higher mean score of ADKS compared to the others’ professional group.

The multiple linear regression results in Table 7 demonstrates that several factors influencing the mean perceived threat score of the participants. Males (Coeff: -0.35, p = 0.073), and married individuals (Coeff: -0.16, p = 0.512) had comparatively lower perceived threat toward AD compared to females, and single individuals, after controlling for all other covariates. Participants with primary education (Coeff: 0.20, p = 0.410), SSC (Coeff: 0.09, p = 0.746), HSC (Coeff: 0.21, p = 0.456), and graduate and above (Coeff: 0.25, p = 0.459) exhibited higher perceived threat compared to those with no formal education. Those with known AD patients had lower perceived threat (Coeff: -0.06, p = 0.760) compared to those with no known AD patients; whereas individuals having personal experience of caring AD people had higher perceived threat toward AD (Coeff: 0.60, p = 0.077). None of the variables were found to be significant except the variable “Source of information about AD.” Specifically, individuals who obtained information about AD from family had a lower score (Coeff: -0.89, p = 0.038) compared to those who never received any information about AD.

DISCUSSION

The present study was designated to assess knowledge, awareness, and perceived threat toward AD among the patient caregivers of Bangladesh. The results of the present study revealed that the majority of respondents had insufficient knowledge and lacked awareness about AD. The mean ADKS score was poor among the respondents in the current study. Similar finding was reported in another Bangladeshi study.³⁰ A study conducted among the college students in Nepal reported better knowledge scores among the respondents compared to the current study.⁴⁰ However, comparatively higher scores were reported in studies carried out among pharmacists in Malaysia,³⁵ healthcare professionals in Australia,⁴¹ and psychologists in Norway.³³ These results could be attributed to the fact that the patient caregivers may lack open access to high quality information, contrary to those who are working in the medical field. These consistent findings across different settings underline a global challenge in people’s perception and knowledge about AD.

A substantial number of study participants had no personal contact with individuals with dementia or AD, which could be attributed to poor AD knowledge among the study participants. Lack of personal or vicarious experiences with the disease can significantly affect understanding and stigmatization, as reported in previous literature.^42,43 The participants’ reliance on media websites for AD information points to the influential role media plays in shaping public knowledge and attitudes towards the disease. However, the risk of misinformation through media underscores the importance of ensuring accurate representation and coverage of AD in media outlets.⁴⁴

Regarding awareness about AD in the current study, majority of the respondents agreed that the elderly may experience changes in their ability to plan everyday tasks and face difficulties in balancing their financial accounts; similar finding was demonstrated in a study conducted among Saudi population.²³ It is to be noted that while most participants did not feel embarrassed about having a relative with AD, many favored nursing homes over home care. This preference, contrasting with traditional Asian norms favoring home care,^45,46 may reflect shifting care dynamics in Bangladesh and requires further exploration.

A significant number of participants in the current study expressed concern about the perceived threat of AD and the likelihood of developing the disease in the future. This finding aligns with researches in various settings showing widespread fear and anxiety about dementia and AD.^47,48 Psychological factors were also reported to be associated with perceived threat among general population ²⁷ which was not explored in the current study. Future study should consider determining factors associated with perceived threat toward AD in Bangladesh.

In this study, younger individuals tended to have higher ADKS scores. This significant positive association supports the notion that younger individuals are potentially more aware of AD and dementia-related information. This could be attributed to a variety of factors, such as better access to information, increased interest in health-related knowledge, or the effects of educational and awareness campaigns.³³ A Brazilian study conducted among general population also reported better ADKS score in younger age group.⁴⁹ The place of residence played a significant role in predicting ADKS scores, with urban residents exhibiting higher scores. This is consistent with previous research indicating that urban residents tend to have better access to health care services and information, contributing to a better understanding and awareness of various health conditions, including AD and dementia.⁵⁰ There was a notable pattern of increasing ADKS scores with each higher level of education attained in the present study. Previous research also showed a positive correlation between education level and knowledge about dementia and AD.^49,51 The increased knowledge among the highly educated might be due to their better access to health information and their ability to comprehend complex medical and health-related information. Individuals who are service holders or business professionals showed higher scores than other professional groups. This could be due to these groups’ exposure to diverse situations, enhancing their understanding and knowledge about various health conditions, including AD.

Caregivers who had known patients with AD demonstrated better knowledge as compared to the caregivers who did not know someone with AD in the current study. That is, prior interaction with dementia or AD patients was related to improved ADKS scores in this study. This finding aligns with the existing body of literature suggesting that personal experience with a disease condition improves one’s understanding and knowledge about that condition.^23,52 The highest known subscale of AD in the present survey was life impact, followed by assessment, course of the disease, and treatment management, whereas the lowest known subscale was symptoms. Diverse findings were observed in other studies. For instance, in China, poor knowledge was reported regarding life impact, symptoms, and care giving.⁵³ In Malaysia, symptoms, course of the disease, and life impacts were the lowest known items.³⁵ Although we used the same tool, our study population varied from these studies in regard to age, education, and occupation.

We also found significant associations between all domains of AD and perceived threat. This indicated people having higher endorsement for different domains of ADKS, perceive greater threat to have AD. Stronger endorsement of the importance of risk factors were significantly associated with greater perceived threat. The association between the risk factor beliefs and heightened perceived AD threat may also indicate that respondents who strongly endorse risk factors may feel they have viewed the disease as less preventable. Ostergren also reported similar findings.²⁷

In line with the current study, some prior research has identified gender as a significant predictor of perceived threat towards AD, with findings indicating that women tend to report higher levels of perceived threat compared to men.²⁷ Moreover, marital status has emerged as another important factor influencing threat perceptions in the current study while the opposite was found in previous research.^21,27 Single individuals may experience heightened perceptions of threat, reflecting concerns about potential future caregiving burdens and lack of immediate familial support in this continent. Furthermore, the influence of personal experiences, such as caregiving responsibilities and familial connections to AD, aligns with previous research highlighting the significant impact of lived experiences on threat perceptions.²⁵ Individuals with direct caregiving experiences may develop a deeper understanding of the challenges associated with AD, leading to heightened perceptions of threat.

This study revealed that essential areas of concern in the people’s understanding of AD in Bangladesh, with significant implications for public health policy and interventions. Multi-sectoral approaches, including the involvement of healthcare professionals, educators, policymakers, and media (both print and social), are necessary to enhance AD literacy and counteract prevailing misconceptions. Our research manifested the need to develop AD education and awareness programs targeted towards individuals and their families to improve the quality of AD care. Moreover, media outlets should facilitate consistent broadcasting of educational content about AD. Lastly, future studies require to be conducted to understand why there is such a lack of knowledge regarding AD and how it can be effectively addressed. Longitudinal studies might also be helpful in tracking the progress of awareness campaigns and interventions.

AUTHOR CONTRIBUTIONS

Azaz Bin Sharif (Conceptualization; Formal analysis; Investigation; Project administration; Supervision); Ishrat Jahan (Conceptualization; Data curation; Formal analysis; Methodology; Writing – original draft; Writing – review & editing); A.B.M. Nahid Hasan (Conceptualization; Data curation; Formal analysis; Methodology; Writing – original draft; Writing – review & editing).