DESK REVIEWS | 05.06. What factors predominantly affect perceptions about dementia?
DESK REVIEW | 05.06. What factors predominantly affect perceptions about dementia?
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).
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
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).
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.
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.
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.
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).
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