Stigma and response to dementia in Guatemala’s Indigenous population

In this case study excerpt for the World Alzheimer Report 2019, María Cecilia López Murga, Executive of Asociación Group Ermita Alzheimer de Guatemala, writes about how the association's mission to address the challenges around dementia within Guatemala’s Indigenous communities.

In the case study, ‘Stigma and response to dementia in Guatemala’s Indigenous population’, María Cecilia López Murga, Executive of Asociación Group Ermita Alzheimer de Guatemala, writes about existing taboo and stigma within Indigenous groups in Guatemala.

María says:
 “Dementia in Guatemala, in our Indigenous peoples, is a taboo. The most numerous Indigenous people in the country is the Maya because it represents 39.3% of the total population and is made up of 22 linguistic communities, so for us it is a total challenge. With the promotion and communication of our Association and with the use of social networks we have been able to reach the interior of our country and somehow make ourselves present in these communities who already come to our Grupo Ermita Association to seek help, support, comfort and information. In fact we have had the visit of families who have to travel 8 or 10 hours to reach us with their sick relatives.

In Ermita, we have given priority to attend and try to reach them so they know we can support and help them, [but] it is a great challenge because our adults in different communities speak their own languages. But that is our commitment to reach those who need us.

Our mission in the Associatión Grupo Ermita is to offer support, counselling, education, information and care to people living with dementia, family members, careers, health professionals and the general public about the care of patients with Alzheimer’s and of the elderly, for a better and healthy quality of life in that segment of the population.

Prof Ricardo F. Allegri, MD, PhD and María Cecilia López Murga at XII Congreso Iberoamericano de Alzheimer, November 2019. Photo courtesy of Asociación Group Ermita Alzheimer de Guatemala.

The Indigenous population of Guatemala constitutes 41% of the total population of the country.

The largest Indigenous population group in the country is the Maya, as it represents 39.3% of the total population and is made up of 22 linguistic communities: achi, akateko, awakateko, chalchiteko, ch’orti’, chuj, itza’, ixil, jakalteco or popti’, kaqchikel, k’iche’, mam, mopan, poqomam, poqomchi’, q’anjob’al, q’eqchi’, sakapulteko, sipakapense, tektiteko, tz’utujil and uspanteko. 28% of the Mayan population belong to the Mayan K’iche linguistic community, 19.3% to Maya Q’eqchi’, 18.9% to Maya Kaqchikel and 14% to Maya Mam. Garifuna and Xinca represent only 1.7% of the population.

In Guatemala, Indigenous people have a conception of health and disease that is different from that of the non-Indigenous population groups. Disease is not based solely on pathologies or biological aspects that denote some imbalance, but also considers social, environmental and spiritual factors.

Indigenous people have their traditions and customs, which are very deep rooted. When Alzheimer’s disease or some other type of dementia occurs in an Indigenous family, it is taken with a lot of fear and superstition.

Any consultation at our Association normally only occurs when the disease is already very advanced and cognitive, neurological and physical deterioration is already severe.

We attended the case of a person of Kaqchikel descent, a 78-year-old married woman, and mother of 13 children. When she was around 65, according to her family, she began experiencing very “strange” changes. At one time they thought it was witchcraft and visited the sorcerer of the region who was treating her for about five years, yet the problem continued to worsen. It reached such a point that on four occasions she was lost in the community for more than three days at a time.

The last time she was lost, they found her 225 kilometres from the village of her origin.

Read the full case study in the World Alzheimer Report 2019

ADI Member Asociación Group Ermita de Alzheimer Guatemala has been offering activities, information, training and training of personnel in the care and health of the elderly living with Alzheimer’s disease and other associated diseases since 1995. Learn more about what Asociación Group Ermita de Alzheimer Guatemala is doing here.

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