There are few recent studies and official documentations exploring this topic in Brazil. According to a study conducted in São Paulo, 14.8% of the population showed some type of stigma regarding the Alzheimer’s disease (for example: stereotypes, prejudice, and discrimination) (Blay & Peluso, 2010).  Another study also carried out in São Paulo showed that Alzheimer’s disease was identified as memory loss by 46.4% of interviewed people, it was believed to be a mental illness by 39.4% and the majority of people attributed isolation and drug use as the main causes of the disease (Blay & de Toledo Piza Peluso, 2008). It is important to note that these studies were conducted around ten years ago in São Paulo. In a not yet published study, a master student of Prof. Cleusa Ferri, showed that 69.7% of 87 older people attending primary care recognized a case vignette as dementia, and 25% knew it by the name of Alzheimer’s disease (Opaleye et al., 2018). According to a survey published in the World Alzheimer Report: Attitudes to Dementia (2019), from all the Brazilian respondents, 19.5% of the general public and 26.4% of the healthcare practitioners said they would make an effort to keep their dementia a secret when meeting people; 69.6% of the general public revealed they perceive people living with dementia as unpredictable and impulsive. In this same survey, when asked whether people living with dementia were perceived as dangerous persons, 18% of the general public and 15% of the healthcare professionals agreed with this statement (Alzheimer’s Disease International, 2019).

References:

Alzheimer’s Disease International. (2019). World Alzheimer Report: Attitudes to Dementia. https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf

Blay, S. L., & de Toledo Piza Peluso, E. (2008). The public’s ability to recognize Alzheimer disease and their beliefs about its causes. Alzheimer Disease and Associated Disorders, 22(1), 79–85. https://doi.org/10.1097/WAD.0b013e31815ccd47

Blay, S. L., & Peluso, E. T. P. (2010). Public stigma: The community’s tolerance of Alzheimer disease. The American Journal of Geriatric Psychiatry, 18(2), 163–171. https://doi.org/10.1097/JGP.0b013e3181bea900

Opaleye, D., Machado, D. de A., Campos, T. P., Laks, J., & Ferri, C. P. (2018). Dementia in Brazil: Preferences on diagnosis disclosure in primary care. AAIC 2018, Chicago.

Previous local studies showed that the negative image of dementia and the burden of taking care of a person with dementia were factors that stood in ways of Chinese older adults with early dementia from seeking the help of medical doctors (Chan, 2012). An additional local study also found that stigmatising attitudes were functioning as barriers to help-seeking (Cheng et al., 2011).

For dementia care, most nurses and personal care workers working in long-term care found it challenging; nevertheless, they had a positive attitude towards further training on dementia and they demonstrated commitment to dementia care (Lee et al., 2012).

Surveys on how the general public and primary care physicians perceive dementia diagnosis and intervention, suggest that both groups have similar perception. A recent study has shown a tolerant and proactive attitude towards early diagnosis of dementia in order to seek prompt interventions and support among most Chinese in Hong Kong (Lam et al., 2019). In the same study, practical issues and legal concerns were reported as the most and least fearful consequences associated with dementia, respectively. Most respondents were able to identify cognitive impairments as symptoms of dementia; however, there was inadequate knowledge that behavioural disturbance could be one of the possible signs of dementia as well. On the other hand, primary care physicians, in light of the additional benefits of early treatments to individuals with dementia and carers, have also shown a positive attitude towards early detection and diagnosis of dementia (Leung et al., 2020).

References:

Chan, C. K. L. (2012). A study on the help-seeking experience of Chinese older adults with early dementia in Hong Kong. The Hong Kong Polytechnic University, Retrieved from https://theses.lib.polyu.edu.hk/handle/200/7623

Cheng, S., Lam, L., Chan, L., Law, A., Fung, A., et al. (2011). The effects of exposure to scenarios about dementia on stigma and attitudes toward dementia care in a Chinese community. International Psychogeriatrics(23(9)), 1433-1441. https://doi.org/10.1017/S1041610211000834

Lam, T. P., Sun, K. S., Chan, H. Y., Lau, C. S., Lam, K. F., & Sanson-Fisher, R. (2019). Perceptions of Chinese Towards Dementia in Hong Kong-Diagnosis, Symptoms and Impacts. International journal of environmental research and public health, 16(1), 128. https://doi.org/10.3390/ijerph16010128

Lee, J., Hui, E., Kng, C., & Auyeung, T. (2012). Attitudes of long-term care staff toward dementia and their related factors. International Psychogeriatrics, 25(1), 140-147. https://doi.org/10.1017/S1041610212001512

Leung, C. W., Lam, T. P., Wong, K. W., & Chao, V. K. D. (2020). Early detection of dementia: The knowledge and attitudes of primary care physicians in Hong Kong. Dementia (London), 19(3), 830-846. https://doi.org/10.1177/1471301218788133

There is a strong cultural emphasis on children to provide care for their elderly parents in India (Gupta, 2009). It has been reported that it is the women (wife, daughter, daughter-in-law) that predominantly take on primary caregiving roles (Shaji et al., 2003; Brinda et al., 2014). There is low awareness regarding dementia among family caregivers (ARDSI, 2010). For example, a qualitative study in South India conducted with caregivers of persons with Alzheimer’s disease as part of the 10/66 research network demonstrated that the understanding of dementia and its causes is limited (Shaji et al., 2003). The authors also reported a tendency for caregivers to attribute dementia symptoms as “deliberate misbehaviour” (Shaji et al., 2003, pp.2).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Available from: https://www.mhinnovation.net/sites/default/files/downloads/innovation/reports/Dementia-India-Report.pdf

Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. (2014). Cost and Burden of informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14(1), 207. https://doi.org/10.1186/1472-6963-14-207

Gupta, R. (2009). Systems Perspective: Understanding Care Giving of the Elderly in India. Health Care for Women International, 30(12), 1040–1054. https://doi.org/10.1080/07399330903199334

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

In Indonesia, there is very limited public understanding of dementia. Most of the public considers dementia to be a normal process of ageing, which leads to a low sense of urgency to seek treatment and care (Alzheimer’s Disease International, 2014; Suriastini et al., 2016). A study in 2002 highlighted how families often feel ashamed about having a family member with dementia and some hide them from the wider community. People with dementia sometimes get neglected by their families, as they are seen to be causing disturbance or inconvenience. Decline in cognitive functions and memory of older people continues to be normalised and expected (Yuniati, 2017). In Indonesian culture, the role of the caregiver is typically undertaken by older adults in the family, such as the father, mother, or grandparents who are able to provide care. There is also an expectation for women to take care of their ailing parents-in-law (Widyastuti et al., 2011). Some caregivers described the changes in the person they care for as funny and normal. Caregivers generally do not expect that the condition of older people will be cured and just hope the treatment can delay the deterioration. In 2018, a study found that stigma around older people is persisting in general; older people are sometimes viewed negatively as unproductive members by their immediate surroundings (Yulianti, 2018). However, adult children in Indonesia have a sense of obligation and loyalty that drives them to continue caring. Older people are traditionally seen as authorities of wisdom, worthy of respect, with a wealth of knowledge and experience.

References:

Alzheimer’s Disease International. (2014). Dementia in the Asia Pacific region.

Suriastini, Turana, Y., Witoelar, F., Supraptilah, B., Wicaksono, T., & Dwi, E. (2016). Policy Brief Angka Prevalensi Demensia: Perlu Perhatian Kita Semua. SurveyMETER, Maret, 1–4.

Widyastuti, H., Sahar, J., & Permatasari, H. (2011). Pengalaman Keluarga Merawat Lansia Dengan Demensia. Jurnal Ners Indonesia.

Yulianti. (2018). Dampak Program Elderly Day Care Service terhadap Kesejahteraan Lansia Studi kasus di Panti Sosial Tresna Werdha Budi Dharma Bekasi.

Yuniati, F. (2017). Pengalaman Caregiver dalam Merawat Lanjut Usia dengan Penurunan Daya Ingat. Jurnal Bahana Kesehatan Masarakat, 1(1), 27–42.

No data was sourced.

In Kenya, there is a lot of stigma surrounding dementia and many attribute symptoms of dementia to being cursed, bewitched, having annoyed the “gods” or failure to fulfil a certain obligation and as a result are being punished for their wrongdoings (Musyimi et al., 2019).

Other caregivers (particularly wives) are also seen as witches especially when the person with dementia is a spouse. This is very difficult for the families, as they are often cut off by their extended family, receive no support and suffer in silence (Njoki, 2018).

References:

Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf

Njoki, M. (2018). Dementia in Africa: an exploration of Kenyan carers’ experiences supporting someone with dementia. https://dementia.stir.ac.uk/blogs/dementia-centred/2018-05-17/dementia-africa-exploration-kenyan-carers-experiences-supporting

Dementia is perceived as part of the normal process of ageing. Memory loss is almost normalised, and this means that little help or formal health care is sought and often, only in the late stages. Lack of knowledge of dementia, its symptoms and causes also cause many people, especially in individuals with low resources and low educational attainment, to attribute what happens as the result of an external factor such as stress, alcohol consumption, sequelae of another illness/being in hospital, and in some cases, of someone “wishing you ill”.

On the other hand, hiding the illness/symptoms to others outside the household (at times even to close family members) or the person with dementia when the dementia is in its advance stages, is a common practice. Moreover, even health professionals sometimes hide the diagnosis to the person and will disclose only to the family members or primary carer.

The New Zealand findings from the 2019 World Alzheimer’s Report survey on Attitudes to Dementia are presented in the table 36 (ADI, 2019). These show that there is still a way to go to address some of the preconceptions and perceptions held about dementia.

Table 36: NZ survey results on Attitudes to dementia (ADI, 2019)

Alzheimer’s NZ commissioned a telephone survey in 2017 to explore awareness and understanding of dementia in NZ (Alzheimer’s NZ, 2017). The focus of the survey included:

• Self-assessed knowledge of dementia.
• 54% of respondents said they knew ‘a lot’ or ‘a fair amount’ about dementia with those who were female, older, better educated, or who had a family member with dementia (80%) were more likely to do so.
• Pacific respondents were less likely to say they knew much about dementia (21%) compared to other ethnicities.

Attitudes to people with dementia:

• 87% of respondents agreed people with dementia can become isolated from friends and the community.
• 83% agreed people with dementia can still be involved in activities in the community such as attending a wedding, church, social clubs, or other social events.
• 58% agreed people with dementia can still enjoy life to the fullest.
• 87% said they would continue to include someone in social activities if that person was diagnosed with dementia.
• 10% said they would not want to tell people if a family member was diagnosed with dementia and 27% agreed they would find it hard to talk to someone with dementia.
• Pacific respondents were less likely to agree (66%) that people with dementia can become isolated from friend and community, than the overall (87%).

Attitudes to caring:

• 58% agreed caring for someone with dementia is often lonely.
• 50% agreed that caring for someone often means your own health suffers. Those 60 years old and over had higher agreement on carers being very lonely (70%) and their health suffering (60%) compared to their younger counterparts (54% and 47% respectively).
• Those who know or have known someone with dementia were more likely to agree caring for someone with dementia can often be lonely (61%) than those who did not (45%). In particular, those who know or have known an immediate (parent/sibling/partner/child) family member were more likely to agree with (75%).

Knowledge of risk and prevention

• Respondents were also mostly confident that eating a healthy diet (75%) having an active social life (67%), maintaining a healthy blood pressure (62%) and not smoking (60%) reduced the risk of dementia.
• Respondents concerned about getting dementia had particularly high confidence for maintaining a healthy blood pressure (69%), having an active social life (72%) and doing mentally stimulating things (90%).
• 27% thought dementia was a normal part of aging and the same number said they thought dementia can be cured.
• 16% of respondents incorrectly identified dementia as a disease that can be inherited.
• Pacific (58%) and Asian (49%) respondents were more likely to think dementia can be cured than other ethnicities (25%).

A recent study by Dudley et al., (2019) explored the understanding of mate wareware (dementia) from a Māori perspective. The study noted the general tolerance and acceptance of a whanau member with cognitive difficulties and importance of honouring their identity as kaumatua (elders) of the community.

Cheung et al., (2019) have recently explored the attitudes of Asian communities in NZ to dementia. They identified specific cultural interpretations of dementia in this community including framing it as a normal part of ageing, using folk explanations (e.g., having a “ghost in the brain”), as well as the use of pejorative or negative terminology for the disease such as “older person’s crazy disease” or “stupid”.

Similar findings have been seen in Pacific communities in NZ (Kautoke, personal communication) with dementia conceptualisations ranging from a neurological condition to spiritual explanations. As with the Asian findings, there were many pejorative terms used to describe dementia such as “fakasesele” (crazy) and ‘’atamai vaivai” (weak minded).

References:

ADI. (2019). World Alzheimer Report 2019: Attitudes to dementia. Alzheimer’s Disease International. Available from: https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf.

Alzheimer’s NZ. (2017). Awareness and understanding of dementia in New Zealand 2017.

Cheung G., Appleton K., Boyd M., Cullum S. (2019). Perspectives of dementia from Asian communities living in New Zealand: A focus group of Asian health care professionals. Int J Geriatr Psychiatry. 34(12):1758-64. https://doi.org/10.1002/gps.5189.

Dudley M., Menzies O., Elder H., Nathan L., Garrett N., Wilson D. (2019). Mate wareware: Understanding ‘dementia’ from a Māori perspective. NZ Med J. 132(1503):66-74. Available from: https://pubmed.ncbi.nlm.nih.gov/31581183/.

Very few studies in South Africa directly deal with cultural/societal perceptions of dementia; however, there is agreement that dementia is largely viewed as a normal part of aging (De Jager et al., 2017; Gurayah, 2015; Kalula et al., 2010). Research in South Africa tends to agree that awareness of dementia as a medical condition is poor (De Jager et al., 2017; Kalula & Petros, 2011; Mkhonto & Hanssen, 2018; Prince et al., 2007; Ramlall et al., 2013). Persons living with dementia as well as their caregivers/families are often stigmatised  and prone to experience social rejection or isolation (Gurayah, 2015; Marais et al., 2006; Mkhonto & Hanssen, 2018; Pretorius et al., 2009).

A small study (N=100) in Khayelitsha examined the knowledge, attitudes, and beliefs about dementia among this urban isiXhosa speaking community in the Western Cape Province and found that only 10% of participants reportedly knew what dementia was (Khonje et al., 2015). Other perceptions of dementia included believing that it is a punishment from God (14%) or from the ancestors (18%), that it is a curse or due to witchcraft (28%), and that traditional healers can cure dementia (15%) (Khonje et al., 2015). In South Africa, there are reports supporting the belief that the origin of misfortune is social and that in certain African cultures, ‘witchcraft’ is responsible for the cause of tragedies, accidents, loss or destruction of property, illness, unexpected death, infertility, social disputes as well as drastic weather conditions (Goloova-Mutebi, 2005 as in Mkhonto & Hanssen, 2018). The labelling of persons as ‘witches’ in South Africa is gendered, often leaving women from lower social status in communities stigmatised and shunned (Mkhonto & Hanssen, 2018). Particularly older women that live alone, or widowed, that are of darker complexions are reportedly at risk of being labelled as ‘witch’ as they are seen as possessing the power to “blend into the night to do their evil deeds” (Benade, 2012, p.275).

Although some research (Benade, 2012; De Jager et al., 2015; Khonje et al., 2015; Law, 2012; Mkhonto & Hanssen, 2018) as well as media and other reports (GADAA, 2017; Health24, 2018a; SAPRA, 2014) refer to the ‘tendency’ of witchcraft allegations to result in violence and even homicide of older persons (especially older women) (Crime et al., 2018), the study in Khayelitsha found that, despite 19% of participants indicating that they know of persons living with dementia who had been abused, none of the motivations for this abuse was reportedly related to allegations of witchcraft (Khonje et al., 2015). Further research is needed to determine the extent to which these socio-cultural beliefs are placing older persons at risk of isolation, violence, and abuse.

A recent study (Mkhonto & Hanssen, 2018) explored the link between cultural beliefs and dementia care, interviewing family members and nurses caring for persons living with dementia in nursing homes in Tswhane, South Africa. They found that the participants (N=7) believed that the behavioural and psychosocial symptoms associated with dementia are viewed with suspicion and fear by certain communities, resulting in these persons living with dementia being labelled as a ‘witch’ or ‘bewitched’, socially rejected and isolated, subsequently stigmatised and reportedly vulnerable to violent attacks from the community. These perceptions prevent persons living with dementia and their families from seeking care and treatment as well as psychosocial support (Mkhonto & Hanssen, 2018).

A lack of understanding of dementia has negative consequences for both persons living with dementia and their families, as well as influencing their care (Mkhonto & Hanssen, 2018). The belief of especially female persons with dementia as ‘witches’ within certain communities are identified as an important consideration when understanding the effects of stigma in South Africa. However, further evidence is needed to show the extent to which this is a problem.

References:

Benade, S. (2012). Support services for people suffering from dementia in the rural areas of Kwa-Zulu Natal, South Africa. Dementia, 11(2), 275–277. https://doi.org/10.1177/1471301212437458

De Jager, C.A., Msemburi, W., Pepper, K., & Combrinck, M. (2017). Dementia Prevalence in a Rural Region of South Africa: A Cross-Sectional Community Study. Journal of Alzheimer’s Disease, 60(3), 1087–1096. https://doi.org/10.3233/JAD-170325

GADAA. (2017). No Words for Dementia : Alzheimer ’ s Disease International highlights dementia epidemic in Africa. Global Alzheimer’s and Dementia Action Alliance.

Crime, E., Platzer, M., Project, F., Council, A., Nations, U., Chapter, C., & Online, F. (2018). Victimization of Elderly Women , “ Witches ,” and Widows. 1–6.

Gurayah, T. (2015). Caregiving for people with dementia in a rural context in South Africa. South African Family Practice, 57(3), 194–197. https://doi.org/10.1080/20786190.2014.976946

Health24. (2018a). Alzheimer’s: ‘ They thought my mother was a witch and wanted to burn her. Available from: https://www.health24.com/Medical/Dementia/Alzheimers/alzheimers-they-thought-my-mother-was-a-witch-and-wanted-to-burn-her-20180413

Kalula, S. Z., & Petros, G. (2011). Responses to Dementia in Less Developed Countries with a focus on South Africa. Global Aging, 7(1), 31–40.

Kalula, S. Z., Ferreira, M., Thomas, K. G. F., De Villiers, L., Joska, J. A., & Geffen, L. N. (2010). Profile and management of patients at a memory clinic. South African Medical Journal, 100(7), 449. https://doi.org/10.7196/SAMJ.3384

Khonje, V., Milligan, C., Yako, Y., Mabelane, M., Borochowitz, K. E., & Jager, C. A. De. (2015). Knowledge , Attitudes and Beliefs about Dementia in an Urban Xhosa-Speaking Community in South Africa. Advances in Alzheimer’s Disease, 4, 21–36. https://doi.org/10.4236/aad.2015.42004

Law, L. (2012). Challenges Facing Older Persons. 1–6.

Marais, S., Conradie, G., & Kritzinger, A. (2006). Risk factors for elder abuse and neglect: brief descriptions of different scenarios in South Africa. International Journal of Older People Nursing, 1(3), 186–189. https://doi.org/10.1111/j.1748-3743.2006.00025.x

Mkhonto, F., & Hanssen, I. (2018). When people with dementia are perceived as witches. Consequences for patients and nurse education in South Africa. Journal of Clinical Nursing, 27(1–2), e169–e176. https://doi.org/10.1111/jocn.13909

Pretorius, C., Walker, S., & Heyns, P. M. (2009). Sense of coherence amongst male caregivers in dementia: A South African perspective. Dementia, 8(1), 79–94. https://doi.org/10.1177/1471301208099046

Prince, Martin, Ferri, C. P., Acosta, D., Albanese, E., Arizaga, R., Dewey, M., Gavrilova, S. I., Guerra, M., Huang, Y., Jacob, K. S., Krishnamoorthy, E. S., McKeigue, P., Rodriguez, J. L., Salas, A., Sosa, A. L., Sousa, R. M. M., Stewart, R., & Uwakwe, R. (2007). The protocols for the 10/66 dementia research group population-based research programme. BMC Public Health, 7(generally 2000), 1–18. https://doi.org/10.1186/1471-2458-7-165

Ramlall, S., Chipps, J., Pillay, B., & Bhigjee, A. (2013). Mild cognitive impairment and dementia in a heterogeneous elderly population: Prevalence and risk profile. African Journal of Psychiatry (South Africa), 16(6), 456–465. https://doi.org/10.4314/ajpsy.v16i6.58

SAPRA. (2014). Witch-hunts in South Africa. Available from: https://www.paganrightsalliance.org/remember-their-names/