Knowledge of dementia and dementia care in a cross-sectional sample of individuals living in rural and urban areas in KwaZulu-Natal, South Africa

Knowledge of dementia is considered one of the facilitators of dementia risk reduction because it has been linked to early detection, diagnosis, and help-seeking in people with dementia. This study explored knowledge of dementia symptoms, causes, and care in a community sample of individuals living in rural and urban areas in KwaZulu-Natal, South Africa. A cross-sectional household study of 300 participants, ⩾ 18 years old, using semi-structured individual interviews was conducted. Of the 300 participants, 94% recognised the presence of the cognitive decline symptoms, and 12.4% identified the symptoms as dementia. Participants emphasised biological and medical risk factors over socio-cultural factors. Although the participants primarily adopted a biomedical understanding of dementia, with a small number acknowledging a traditional understanding, they preferred a multi-disciplinary approach to care. Participants advocated for a multidisciplinary care approach that included medical, family, social work, mental health services, and spiritual and traditional care for people with dementia and their families. Therefore, policy and care services for African people with dementia and their families need to holistically integrate multiple care approaches. This will maximise the benefit of public health interventions while also building capacity in our understaffed and burdened healthcare systems.

Dementia is a public health concern (Alzheimer's Disease International [ADI], 2015; World Health Organization [WHO], 2017). In 2015, ADI projected that the prevalence of dementia would triple to 115.4 million by 2050 worldwide. Consequently, in 2017, the WHO published the 2017-2025 Global Action Plan on the public health response to dementia, encouraging countries to reduce dementia risk. Creating and improving knowledge of dementia is considered one of the facilitators of dementia risk reduction (WHO, 2017). This is because dementia awareness and knowledge are linked to early detection, diagnosis, and help-seeking in people with dementia (PWD) (Hindley et al., 2016;Khonje et al., 2015;Mkhonto & Hanssen, 2017;Mushi et al., 2014;Owokuhaisa et al., 2020). Sufficient knowledge about dementia includes recognising symptoms, knowledge of risk factors and causes, knowing how to seek appropriate information on self-treatments, and professional help available (Jorm, 2012).
In many Sub-Saharan African studies, dementia knowledge is considered limited or poor (Hindley et al., 2016;Khonje et al., 2015;Mkhonto & Hanssen, 2017;Mushi et al., 2014;Owokuhaisa et al., 2020). This is because participants from these studies could not recognise or understand the Western biomedical term dementia (Mkhonto & Hanssen, 2017;Mushi et al., 2014) and participants who adopt a socio-cultural understanding of dementia rather than a biomedical understanding of dementia as a neurodegenerative disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association [APA], 2013), are usually seen as having poor knowledge. While a biomedical view is necessary for detecting and diagnosing dementia, Alzheimer Europe (2018), emphasised that what is considered 'sufficient' dementia knowledge for different communities should also be unbiased and congruent with people's beliefs, traditions, and perceptions, while also encouraging timely diagnosis, and access to support and other necessary services.
It is not unusual for African communities to endorse both Western and traditional notions of dementia, because knowledge of dementia symptoms, risk factors, and care usually varies according to personal and socio-cultural experiences, beliefs, and perceptions about the presentation of the disease (Chung, 2000;Conrad & Barker, 2010;Hindley et al., 2016). For example, some African studies reported that dementia was understood to be a natural part of ageing, a mental illness, and/or a medical disorder (Hindley et al., 2016;Khonje et al., 2015;Mkhonto & Hanssen, 2017;Owokuhaisa et al., 2020). While other studies reported the belief that dementia is the work of evil spirits, retribution from God (i.e., for past personal or family sins, not praying enough, not having sufficient faith to ward off evil spirits, or displeasing God), punishment from ancestors, and witchcraft (Cipriani & Borin, 2014;Hindley et al., 2016;Mkhonto & Hanssen, 2017;Mushi et al., 2014;Ndamba-Bandzouzi et al., 2014;Sayegh & Knight, 2012). An illness can be understood as medical while also having socio-cultural and spiritual meanings (Patel, 2011). A socio-cultural understanding does not constitute a lack of or poor knowledge and/or discounting the biomedical basis of the disease.
Since people may understand dementia from both or either a biomedical or a socio-cultural perspective, services and interventions for PWD should consider integrating different approaches into care. Communities would be less resistant to engaging with healthcare systems if interventions were tailored to their perceptions and beliefs. Community-tailored and diverse intervention approaches are crucial in reducing dementia risk and stigma, fostering dementia-friendly communities and providing caregiver support in non-Western, low/middle income, and multi-ethnic communities such as South Africa. Studies reported that some communities relied on traditional healers (Khonje et al., 2015), family care (Berwald et al., 2016;Raghavan & Patel, 2018;Shai & Sodi, 2015), spiritual interventions such as prayers or calling for a pastor, indigenous religious beliefs, and ancestral connections (Hindley et al., 2016;Nwakasi et al., 2019) to manage dementia, rather than Western care practices. The studies suggest that communities prefer several types of care, based on their understanding and cultural beliefs about the causes of dementia. It is suggested that a complementary healthcare system is essential, as communities believe in and use both medical and indigenous care (Patel, 2011).
Exploring people's knowledge of dementia is integral for reducing risk, developing care interventions and fostering dementia-friendly communities. This study aimed to explore the knowledge of dementia and dementia care in a community sample of individuals living in rural and urban areas in KwaZulu-Natal, South Africa. This study focused on dementia in the elderly and not dementia resulting from illnesses such as HIV and Huntington's or traumatic brain injury.

Participants
We recruited 300 participants aged ⩾ 18 years using probability multi-stage cluster sampling and simple random sampling (Terre Blanche et al., 2006). In the first stage, the iLembe district was selected from 11 KwaZulu-Natal districts using a simple random method; this was the primary sampling unit. In the second stage, eight ward areas were randomly selected from the four iLembe municipalities. Finally, the participants were selected by sampling the first household in the ward area and thereafter sampling every fifth household. Participants were not required to have prior knowledge of a person with dementia.

Instruments
A semi-structured questionnaire was used that included biographical details and dementia knowledge and care questions based on existing dementia literature (Berwald et al., 2016;Hindley et al., 2016;Khonje et al., 2015;Mushi et al., 2014;Ndamba-Bandzouzi et al., 2014;Owokuhaisa et al., 2020) and mental health literacy (Jorm, 2012). The questionnaire was administered digitally using the Mobenzi Researcher data collection and capturing tool (Mobenzi, 2021). Mobenzi Researcher is a mobile data collection tool used extensively to collect baseline data and conduct household surveys, patient interviews, and healthcare facility audits. Before the interview, a description of dementia symptoms was given in a vignette 1 about an older woman who met the DSM-5 criteria for dementia. Case studies are commonly used in medical research (Hindley et al., 2016;Jorm, 2012;Starman, 2013), including research on dementia knowledge and care (Berwald et al., 2016). A diagnosis of dementia requires significant cognitive decline in one or more cognitive domains that interfere with activities of daily living. The cognitive impairment must not only be during delirium but also be better explained by another mental disorder (APA, 2013). The questionnaire assessed the participants' knowledge of dementia symptoms, risk factors, and care options; Table 1 lists the questions used during the interviews.

Procedure
Face-to-face interviews were conducted at the participants' homes by the research team. The team included the first author and six research assistants with postgraduate qualifications in psychology. The interviews took approximately 45 min and were conducted in either isiZulu or English, depending on the participant's preferred language.

Ethical considerations
The University of KwaZulu-Natal Humanities and Social Sciences Research Ethics Committee approved the study (HSS/1016/017D). Participation was voluntary, and informed consent was obtained before data collection.

Data analysis
Data were imported from the Mobenzi online server into a password-protected Microsoft Excel file and then exported into the Statistical Package for Social Sciences version 27 (IBM Corp, 2020) for statistical analysis. Descriptive statistics and summative content analysis were used in this study. Descriptive statistics were used to analyse participant characteristics and responses about dementia awareness and care practices. For the qualitative data, we used a summative content analysis involving counting and comparing keywords from participant responses to create frequencies and interpret the underlying context of the responses (Hsieh & Shannon, 2005). Data extracts were used to support the interpretations made from the summative content analysis.

Knowledge of dementia symptoms
Two hundred eighty-two (94%) participants identified the symptoms presented in the vignette as abnormal behaviour, while 6% did not recognise anything wrong with the person presented in the case vignette. Of the 282 participants, 35 (12.4%) interpreted the symptoms as dementia, 99 (35.1%) as old age, 85 (30.1%) as mental illness, and 56 (19.9%) as a medical illness. Of the allowed to give multiple responses.) 4. Do you know of anyone in your family who has experienced similar symptoms or dementia? If yes, who? 5. What type of people do you think suffer from this illness? 6. Do you think a person with these symptoms (dementia) can be helped? 7. How do you think they can be helped? 8. Who do you think can help? (Participants were allowed to give multiple responses.) 9. If you or your family member had similar symptoms, would you seek help? 10. Where do you think a person with dementia can be best cared for and by whom? 11. Do you feel that you would be able to care for someone with dementia? 12. Do you know any services that care for PWD difficulties in your community? 13. Are there any services in your community that care for older adults? PWD: people with dementia.
participants who identified the symptoms as mental illness, 24.3% could not specify the type of mental illness, while 2.7% reported stress, 1% depression, and 0.3% reported that: 'The person is losing her mind'. A further 2% of the 282 participants recognised the symptoms as representing forgetfulness or memory loss, and 0.3% as an ancestral problem: 'Unenkinga yabantu abadala' (Literally: 'She has a problem of older people' [in this case, this was confirmed by the participant as referring to the ancestors]).
Fifty-six (19.9%) of the participants understood the symptoms to represent a medical disorder. However, most of them (53) could not specify the type of medical illness, and the prominent responses were: 'This person is sick'; 'She has a sickness'. One participant stated that: 'She is diabetic and possibly has BP'. Seventy-seven (25.7%) of the 300 participants had a relative who had dementia and assumedly had some knowledge of dementia before the study. Of the 77 participants who had relatives with dementia, 13 (16.9%) identified the cognitive symptoms in the case study as dementia, while the rest reported that the symptoms presented some form of mental illness 25 (32.5%), an illness of old age 23 (29.9%), and 16 (20.8%) as a form of medical illness. One hundred twenty-two (40.7%) of the total participants reported that they knew about dementia from various sources, such as hospitals or clinics: 36 (29.5%), radio: 35 (28.7%), television: 39 (32%), internet: 12 (9.8%), newspaper or magazine: 17 (13.9%) or school: 16 (13.1%).

Knowledge of dementia risk factors
The participants identified multiple risk factors that predispose people to dementia. These included biological, psychological, and social risk factors. Some participants (12.4%) combined explanations to show that dementia can be associated with multiple factors. Table 3 shows the perceived factors that predispose people to dementia. Old age (50%) was identified as the primary risk factor for dementia. The participants also identified that medical illnesses (16.4%) and psychological issues (17.8%) were risk factors for dementia. Furthermore, a few participants attributed dementia to social (2.7%), spiritual, and traditional (0.8%) issues, and 12.4% identified that a combination of factors, such as being old and having diabetes or hypertension, increases the likelihood of dementia. For example, one participant stated that: 'People that have old age [have] been through trauma and suffering from deep anxiety get dementia'.

Knowledge of dementia care and support services
Two hundred sixty-three (87.7%) participants reported that if a family member had dementia they would seek help, while 37 (12.3%) were unsure. Of the participants, 44% preferred that care be provided at home by a relative, 39% believed care is better at a nursing home or hospital, 11% of the participants believed that a person with symptoms of dementia is better cared for at home but by a hired carer, and 6% did not have a preference. More than two-thirds of the participants (75.3%) reported they would be able to take care of a relative with dementia. A small portion (9.7%) of the participants reported receiving caregiver training. Ninety-one participants (30.3%) reported that their communities had services for PWD, while 33% of those who have relatives with dementia (n = 77) had access to dementia community services, and 13% had received caregiver training.
Of the participants who indicated they would seek help (n = 263), 86.7% chose multi-disciplinary care as their preferred way to manage dementia, with 19.8% preferring a multi-disciplinary care team, which includes family, doctor, mental health services, social worker, and pastor. Some participants (8.7%) included the traditional healer as part of the care team, while 13.3% preferred a single form of help such as either medical help (6 %), family (4.6%), or social work (2.7%).

Discussion
This study explored knowledge of dementia in South African rural and urban communities in the iLembe district. About 94% of the participants were able to recognise cognitive decline. A small number of these participants were able to identify the illness as dementia (12.4%). Some participants identified the symptoms as old age (35.1%), mental illness, (30.1%) or medical illness such as diabetes and hypertension (19.9%). These results indicate that recognition of dementia symptoms as an illness was high. In contrast, most studies reported that dementia knowledge was poor in Sub-Saharan African countries as participants could not recognise or understand the term dementia, and therefore could not describe the disease (Mkhonto & Hanssen, 2017;Mushi et al., 2014;Owokuhaisa et al., 2020;Raghavan & Patel, 2018). Our participants adopted a biomedical view of dementia, with fewer than 1% of the participants reporting that dementia was associated with punishment from ancestors. Exposure to information about dementia, such as having relatives diagnosed with dementia, getting information from the broadcasting media, community clinics, and schools, might have contributed to the participants' increased biomedical knowledge of dementia. These platforms may be useful for promoting dementia awareness programmes, especially in rural areas.
While many participants could not recognise the symptoms as dementia, they had a biomedical understanding of the risk factors that lead to dementia. For example, most participants referred to dementia as a disease of old age and identified ageing as the primary cause of dementia. Although old age is not synonymous with dementia, it is the leading risk factor (ADI, 2015). Similarly, and also mentioned in the literature (ADI, 2015), the participants identified medical illnesses (e.g., diabetes and hypertension) and mental illnesses (e.g., depression) as other prominent risk factors for dementia. A small number of the participants also believed that 'not praying enough' and 'having ancestral problems' can cause dementia, which is also reported in other studies (Cipriani & Borin, 2014;Owokuhaisa et al., 2020;Sayegh & Knight, 2012). Unexpectedly, some participants identified psychosocial factors like loneliness, isolation, and abuse as posing a risk for dementia. Recent literature (National Academies of Sciences, Engineering, and Medicine, 2020;Yusuf et al., 2018) has also considered loneliness and isolation as risk factors for dementia and these are associated with up to a 50% increase in dementia risk. Further research is needed to investigate the association between dementia and loneliness and explore whether loneliness is a determinant or a consequence of dementia.
Most participants reported that they would seek help if their relatives had dementia. They acknowledged that caring for a person with dementia requires help from multiple sources such as medical, social, psychiatric, pastoral, and traditional care. According to Patel (2011) and Shai and Sodi (2015), South African populations commonly prefer multiple care pathways for illness, particularly those living in rural areas where care often includes traditional and spiritual interventions. Our sample demonstrated that they preferred both socio-cultural and spiritual interventions, as well as biomedical care. Caregivers of PWD can sometimes be overburdened and stressed (Gurayah, 2015); therefore, the support and care that the multi-disciplinary services can provide is essential.
Understanding dementia knowledge extends the pathways for policy development and public health initiatives for risk reduction and improving care for PWD and their caregivers. Public health initiatives may include adequate community-based multidisciplinary team services for early detection, support, care, and rehabilitation for patients and their families. Community-based services can provide much-needed relief to the crippled South African healthcare system that is overburdened and under-resourced. The public healthcare system in South Africa lacks adequate human, medical, infrastructural, and pharmaceutical resources for the elderly (Kalula, 2011;Ramashala, 2012), especially those with dementia. According to Kalula (2011), there are no dedicated or specialist services for older people at the primary healthcare level, meaning that older people must compete for services with younger age groups. In addition, older patients are marginalised at the clinics, and very few are referred to secondary or tertiary levels for investigation and management of diseases such as dementia (Kalula, 2011;Kelly et al., 2019).
The increase in dementia prevalence raises the demand for resources to diagnose, treat, and care for those affected in the communities where people live and where it would be more accessible and convenient. As the first line of contact to health care, primary care services need to be accessible and adapted to the needs of older adults. The public primary healthcare sector needs to establish multidisciplinary teams (MDTs) for older persons at community healthcare facilities and adopt a participatory model of care, so that PWD and their families are included in the discussions and planning of their care. Such a collaborative approach would promote, support, and allow the public healthcare personnel to monitor and plan for the continuation of care, including assisted living.
One limitation of the study is that it was conducted in one district in KwaZulu-Natal, and the results should only be cautiously applied to other populations in the rest of South Africa. Another limitation is that being primarily a quantitative study, the closed questions used in the questionnaire did not adequately explore the participants' in-depth knowledge of dementia. Future studies should use more open-ended questions to explore participants' knowledge of dementia in greater depth.

Conclusion
Participants adopted a biomedical understanding of dementia symptoms and risk factors in this study. However, they also preferred a holistic and multi-disciplinary approach to care, including socio-cultural care. Dementia risk reduction and care initiatives in rural African communities need to consider the community's knowledge of dementia, creating new avenues for care and support. The public health system must work with all stakeholders in the community to support caregivers and adopt a participatory health model. Hospitals, schools, and the media can be used effectively to raise awareness and share knowledge about dementia.

Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this research was received from the Univesity of KwaZulu-Natal Capacity Development Program (UCDP).