DESK REVIEWS | 05.05. Is there any evidence of current or changing perceptions of dementia? If so, what is motivating these changes?
DESK REVIEW | 05.05. Is there any evidence of current or changing perceptions of dementia? If so, what is motivating these changes?
Yes. At the end of June 2019, there was a session in the Chamber of Deputies to discuss public policies for treating and preventing dementia in Brazil. This might be considered progress towards perceiving and supporting people living with dementia and their carers. In this session in the Chamber of Deputies, many topics, such as stigma reduction, prevention, support for carers, day care and long-term care institutions, were discussed. At the end of the session, it was agreed that a Dementia Committee should be created including members of Parliament and the general public in order to create a National Dementia Plan. A member of the STRiDE-Brazil Steering Committee gave a talk about dementia in this session and presented the STRiDE project. The dissemination of the STRiDE project may also work changing perceptions of dementia among the population. According to the study cited in the question above (from Cleusa’s Master student), out of 87 interviewed older people, 84.7% of them would like to know the diagnosis of dementia and should then be diagnosed, and 82.1% would like to share the diagnosis with a caregiver (Opaleye et al., 2018). In addition, some Brazilian soap operas have been showing characters living with Alzheimer’s, for example “Senhora do Destino, in 2004”, “I love Paraisopolis, in 2015”, “Deus Salve o Rei, in 2018” and “Salve-se quem Puder in 2020”. Soap operas are a popular form of mass entertainment in Brazil and may reflect the growing attention given to the cause of dementia. The first approval of the National Dementia Policy by the Senate House seems to be an indicator of the process of changing perceptions in the country.
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.
One of the results of the public awareness raising campaign is that more people contacted ALZI to seek for information on or help with dementia. It shows that there is a change in the perception towards dementia. Since life expectancy in Indonesia has increased over the last decades, the public has become more aware of dementia. They understand that it is important to have early recognition of the signs and symptoms of dementia.
Qualitative studies conducted in Kenya reveal that there is still lack of awareness and understanding of dementia, and in some communities, there is either no local term for dementia (Musyimi et al., 2021; Njoki, 2018) or the one in existence is considered derogatory (Musyimi et al., 2019; C. W. Musyimi et al., 2021). Although not documented, it is expected that with increasing awareness, a proportion of the population in Kenya will shift from negative perceptions of dementia to less stigmatized and acceptable terms on dementia.
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
In accordance with to World Alzheimer Report 2019 on the attitudes towards dementia (ADI, 2019), in Mexico there are varied perceptions according to the profile of the participants, while 7.6% of healthcare practitioners agreed that people with dementia are perceived as dangerous, 41.2% of the general public agreed that people with dementia are perceived as dangerous. Moreover, 73% of them approved that people living with dementia are impulsive and unpredictable (ADI, 2019). This denotes a negative attitude among the general population. However, there is not enough evidence of changing perceptions.
ADI. (2019). World Alzheimer Report 2019: Attitudes to dementia. https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf