DESK REVIEWS | 05.04. Describe the cultural/societal perceptions of dementia

DESK REVIEW | 05.04. Describe the cultural/societal perceptions of dementia

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.

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.

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.