We could not find any specific evidence on that. However, we would assume that some of these factors are: stigma, lack of knowledge on dementia among society and even among healthcare professionals, the belief that living with dementia is natural as a person gets older, and “devaluation” of persons living with dementia. According to Blay and Peluso (2010), fewer years of education are associated with higher probability of stigmatizing people with Alzheimer (Blay & Peluso, 2010). In addition, Blay and Peluso (2008), showed that marital and economic status (besides level of education) influence responses about causes of Alzheimer’s Disease (AD). Married or previously married people showed a tendency to attribute AD to psychosocial causes, while people with unfavourable economic status tended to attribute AD to more biological origins, and people with 0 to 7 years of education attributed AD to spiritual/moral causes (Blay & de Toledo Piza Peluso, 2008).

References:

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

Findings from a local study indicate that a brief exposure of dementia information can lead to stigma reduction and it suggests that community education is highly significant in reducing barriers towards early detection and treatment of dementia (Cheng et al., 2011). On the other hand, the renaming of Chinese terminology of dementia in 2012 also alters the way people in Hong Kong perceive dementia. A survey of 466 respondents with dementia and carers reveals that for half of them, the old Chinese name of dementia caused them to be stigmatised (Chiu et al., 2014).

References:

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

Chiu, H., Sato, M., Kua, E., Lee, M., Yu, X., et al. (2014). Renaming dementia – an East Asian perspective. International Psychogeriatrics, 26, 885-887. https://doi.org/10.1017/S1041610214000453

The existing cultural context (practices and beliefs) has a major role in shaping attitudes and behaviours towards dementia in India (Kumar, et al., 2019). Low levels of awareness or stigma amongst the family, community and health professionals can considerably influence perceptions of dementia (Kumar etl., 2019; Shaji et al., 2003) and help-seeking in the country (Nulkar et al., 2019; ARDSI, 2010).

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

Kumar, C. S., George, S., & Kallivayalil, R. A. (2019). Towards a Dementia-Friendly India. Indian journal of psychological medicine, 41(5), 476–481. https://doi.org/10.4103/IJPSYM.IJPSYM_25_19

Nulkar A, Paralikar V, Juvekar S. Dementia in India – a call for action. Journal of Global Health Reports. 2019;3:e2019078. doi:10.29392/joghr.3.e2019078

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.

We were unable to find evidence that focused on issues about perceptions on dementia in Indonesia (via MOH, academic journals in Bahasa and English, as well as news articles in both languages). However, one study discussed the relationship between economic status, education, family harmony, and awareness of dementia among family members (Wahyuliati, 2010). The study found that formal education attainment correlates significantly with awareness of dementia, while economic status and levels of familial harmony are not correlated significantly. There is an understanding that family and community can play an important role in changing the perception towards dementia in Indonesia. However, many continue to think that memory loss is part of the aging.

References:

Wahyuliati, T. (2010). Hubungan antara Status Ekonomi, Status Pendidikan dan Keharmonisan Keluarga dengan Kesadaran Adanya Demensia dalam Keluarga The Relation Between Economic Status, Educational Status and Family Harmony to Awareness of Dementia in Family. Mutiara Medika, 10(1), 44–48.

The Jamaica STRiDE team has conducted an extensive search online and in-person but was unable to find any published or on-going research or interventions specifically about dementia-related stigma in Jamaica. For the online database component of the literature review, the Jamaica team searched through the following databases/portals but found nothing specific to anti-stigma dementia/Alzheimer’s research in Jamaica:

1. The University of the West Indies UWILinc (University Libraries’ Information Connexion)
2. Google Scholar (particularly in light of the STRiDE Webinar 1)
3. Pubmed/Medline via Ovid
4. Embase
5. Global health on CAB Direct
6. CINAHL (EBSCO) briefly.

In addition to this, discussion with stakeholders from the ToC, the Global Dementia Observatory (GDO), and other experts involved in ageing and dementia research has resulted in no findings of any ongoing anti-stigma research or interventions.

Within the University of the West Indies (UWI), we got into contact with the Mona Ageing and Wellness Centre who have been at the forefront of gerontology research in Jamaica, but they were unaware of any existing initiatives or published research in this area. Also within UWI, we visited the Sir Arthur Lewis Institute of Social and Economic Studies (SALISES) documentation centre where we were unable to locate any relevant literature.

In addition to the above, we got into contact with librarians at the two other major universities in Jamaica: University of Technology, Jamaica (UTech) and Northern Caribbean University (NCU) who searched their archive of published and grey literature and said that nothing on the topic of Alzheimer’s or dementia research in Jamaica was located.

Some of the factors that affect the perception of dementia at all levels include (Musyimi et al., 2019; Musyimi et al., 2021; Njoki, 2018);

• Lack of awareness and understanding of dementia– This is as a result of the ignorance about the disease and the lack of a definitive term for dementia in Kenyan culture.
• Lack of diagnosis or misdiagnosis– Since most physicians easily misdiagnose dementia as either depression, old age illness, Parkinson’s disease, diabetes, or high blood pressure, they end up with a misdiagnosis and without support for the underlying condition (dementia).
• Stigma– Assumed dementia to be witchcraft, curse from God, mental illness, part of aging. Abandonment and isolation of people with dementia and their carers.
• No government policies, legislations and services– Kenya does not have any laws and legislations concerning dementia, making it difficult to create awareness to the general public.
• Lack of statistics and data on number of people affected by dementia– To enable lobbying the government for positive changes.

References:

Musyimi, C. W., Ndetei, D. M., Evans-Lacko, S., Oliveira, D., Mutunga, E., & Farina, N. (2021). Perceptions and experiences of dementia and its care in rural Kenya. Dementia.  https://doi.org/10.1177/14713012211014800

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

Lack of information means that negative perceptions are present at the individual, family, community, and society levels. While government does not have a negative perception, there is a high proportion of public employers that have these negative perceptions too and this may affect their overall behaviour. While it is evident that negative perceptions exist around dementia, there is only little documented evidence on perceptions of dementia coming from studies. From the few available, it becomes clear that lack of information and high stigma is present (Juárez-Cedillo et al., 2014).

References:

Juárez-Cedillo, T., Jarillo-Soto, E. C., & Rosas-Carrasco, O. (2014). Social representation of dementia and its influence on the search for early care by family member caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 29(4), 344–353. https://doi.org/10.1177/1533317513517041

As above.

Research suggests that socio-cultural factors play an important role in the understanding of and responding to dementia, and due to the ensuing stigma, results in the social rejection and isolation of people living with dementia and their families/caregivers. African cultures, along with other developing contexts, are characterised by a strong sense of familial responsibility that tend to respond to the care of persons living with dementia as a personal or family matter, rather than seeking help from formal health-care structures (Mukadam et al., 2011).

This sense of familial responsibility is mirrored in governmental approaches to the care of the aged. For example, the White paper for Social Welfare (1997) as well as the Older Persons Act no.13, 2006 (Government Gazette, 2006) draws on principles of ubuntu, framing the care of the aged as predominantly a social and moral practice that is situated within the private space of the family. Ubuntu refers to the social nature of people and defines people as people through their relations with others and positioned within policy. It largely privatises care for the aged within the family (Sevenhuijsen et al., 2003) and thus influences the way in which health challenges faced by older persons are perceived, and responded to, within South Africa. It also influences perceptions about how the burden of care within the family is distributed and socially sanctioned as primarily the responsibility of a female family member. Currently in South Africa, the typical profile of caregivers to persons living with dementia is a middle aged, or older female, child or spouse (Gurayah, 2015; Khonje et al., 2015; Marais et al., 2006), positioning women as responsible for “large-scale social and political problems” (Sevenhuijsen et al., 2003 p.311).

There is an emerging debate about how dementia should be positioned within South Africa: as a mental illness, a chronic medical condition (i.e., brain disease), or a disability:

1. Dementia as a mental illness: Since dementia is understood elsewhere as a brain disorder that affects cognition, it is commonly viewed as a mental illness that influences the thinking, the memory, and the executive functions of the brain (Alzheimer’s society, 2015). In South Africa it is unclear where exactly dementia is situated. The only treatment guidelines for dementia in the country was published by the South African Society of Psychiatrists, guiding private sector practitioners (psychiatrists) on the pharmacological- as well as non-pharmacological responses to dementia care. Mixed understandings of where dementia is situated is also evident within the Department of Health itself, where district level officials refer to it as a mental health condition that falls under the jurisdiction of the Directorate of Mental Health, where officials at national level are recognising dementia as a non-communicable disease.
2. Dementia as a (chronic) medical condition/disease: Dementia is poorly understood in South Africa (Prince et al., 2016b), especially amongst more rural communities (Kalula & Petros, 2011; Khonje et al., 2015; Mkhonto & Hanssen, 2018) and often seen as a normal part of aging (De Jager et al., 2017; Gurayah, 2015; Kalula et al., 2010). The behaviour symptoms associated with dementia are often viewed as mental illness and not as a medical condition that manifests cognitively and behaviourally. Positioning dementia as a mental illness subjects persons living with dementia (and their families) to stigmatisation by communities and subsequently curtails their health-seeking behaviour. There is an ongoing discussion on medical aid schemes in South Africa to recognise dementia as a chronic medical condition/disease, and, therefore, include it on the prescribed minimum benefits to allow families and persons living with dementia (i.e., those who have access to medical schemes), to be covered for the high cost of care (Gruber, 2016).
3. Dementia as a cognitive disability: Persons living with dementia associated with civil society movements (i.e., Dementia Alliance International and Human Rights Consultant, Professor Peter Mittler, at the Global Disability Summit of 2018) questioning why dementia is not recognised as a cognitive disability and share the same rights as other disabled persons under the United Nations Convention on Rights of Persons with Disability (Mittler, 2018). It calls for a shift away from locating it within the mental health sphere and locating it as a cognitive disability that affects persons living with dementia (and their carers) as a long-term condition. Dementia-SA (NGO) is also working closely with the Department of Social Development to recognise dementia as a ‘hidden’ disability and shift current perceptions on dementia within the government.

References:

Alzheimer’s Association. (2015). Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332; Accessed at https://www.alz.org/media/documents/2015factsandfigures.pdf on 19 July 2022

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

Government Gazette. (2006). Older Persons Act, No.13 of 2006 (Vol. 13, Issue 1098). Available from: https://www.westerncape.gov.za/other/2012/3/older_persons_act.pdf

Gruber, J. (2017). Delivering public health insurance through private plan choice in the United States. Journal of Economic Perspectives, Vol 31 (4); p3-22.

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

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

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

Mittler, P. (2018) cited at the Global Disability Summit; cited in DAI at the 2018 Global Disability Summit in London. https://www.dementiaallianceinternational.org/tag/professor-peter-mittler/ – accessed on 19 July 2022

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

Mukadam, N., Cooper, C., & Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26(1), 12–20. https://doi.org/10.1002/gps.2484

Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016b). World Alzheimer Report 2016 Improving healthcare for people living with dementia. Coverage, Quality and costs now and in the future. In Alzheimer’s Disease International (ADI). https://doi.org/10.13140/RG.2.2.22580.04483

Sevenhuijsen, S., Bozalek, V., Gouws, A. and Minnaar-Mcdonald, M. (2003). South African social welfare policy: An analysis using the ethic of care. Critical Social Policy, 23(3), 299–321. https://doi.org/10.1177/02610183030233001