the ‘circle of life’ or ‘coming full circle
We also want to emphasise that the collective narrative includes an understanding that more people are experiencing dementia now than in the past and that some people are getting dementia at an early age. This experience has led to a complementary narrative that understands that dementia is sometimes brought on by injury, trauma, and/or other diseases and medications that cause you to be out of balance. Colonialism, and the resulting changes in lifeways and disconnection from land, is considered the cause of this phenomenon.
A small number of studies have been conducted that confirm the original community concern that rates of dementia are increasing in Indigenous populations. While more evidence is needed what has been published suggests rates of dementia are higher in First Nations in Canada when compared to non-First Nation populations, rising more quickly and occurring at younger ages.1. Yet despite this intersection with western perspectives, core Indigenous values prevail and for the most part in our experience, dementia is not stigmatised.
Our ethnographic research on dementia in Indigenous contexts has resulted in a series of tools and guides describing dementia and the dementia journey from Indigenous perspectives, as well as guidelines for appropriate services and care. More details on what we have summarised are available from www.i-caare.
ca/factsheets and www.i-caare.ca/practicetools. As we have shared the work of our team over the years it has been clear to us that non-Indigenous care providers, both formal and informal, have a deep appreciation for Indigenous views on dementia. Many have commented on how much mainstream (biomedical) services have to learn from Indigenous teachings. We hope that what we have shared provokes thoughtful discussion on what we can learn and what we can do better.
References
1 Jacklin, K., Walker, J., Shawande, M. 2013. ‘The emergence of dementia as a health concern among First Nations populations in Alberta, Canada’ The Canadian Journal of Public Health 104(1) online: https://pdfs.semanticscholar.
org/8fcf/2edb97bb733aa0b1bb4abc39eed98e5feda3.pdf Last accessed 19 August 2019.
115
ATTITUDES TO DEMENTIA
4.4 Dementia discrimination, even by the language we use, a view from Québec, Canada
Contributor: Nouha Ben Gaied, PhD, director research and development quality of services Federation of Quebec Alzheimer Societies
Wherever you live around the globe, you are likely to have heard of the word “dementia” in English.
Dementia being the umbrella term that embraces several neurodegenerative diseases such as Alzheimer’s disease, fronto-temporal dementia or Lewy body dementia and define the final stage of cognitive decline.
The word dementia is also widely used by people with lived experience, carers, healthcare professionals as well as the media. The broad usage of the word dementia has even led one the biggest Alzheimer association, Alzheimer’s Australia to take the move in 2017 and change their brand to become Dementia Australia, to be more inclusive of all people living with a neurodegenerative illness who face different symptoms but who share a universal journey. A dozen other organizations have also included the word dementia in their name, leaving aside the word “Alzheimer”.
Can we think of a similar change in Canada? A country that is officially bilingual and where the French is predominately used in the Province of Quebec? The situation is indeed rather different and complex when we look at the meaning of the word ‘démence’ in French.
Even though the word démence refers to a medical term, it has been very much associated, since the end of the 19th century, with craziness, losing one’s mind and mental health issue such as schizophrenia. A definition of the word démence, in the Petit Robert dictionary, mentions alienation, delirium, wandering, madness and unconsciousness and refers to a progressive and irreversible decline of mental and psychical activities.
All these definitions refer rather to psychiatric disorder rather than a neurodegeneration decline and contribute therefore into the stigmatisation of people with
Alzheimer’s disease and related illnesses as well as their carers.
In 2013 a major change happened in the DSM-V (Diagnostic and Statistical Manual of Mental Disorders) with the replacement of the word “démence” by
“troubles neurodégénératifs” as well as the introduction of diagnostic criteria for both mild and major
neurodegenerative decline.1 But did this major change impact those who live with the disease and their carers? Did it change the way we see dementia among French speaking societies and finally, did healthcare professionals actually replace the word démence in their practice?
To answer some of these questions, the Alzheimer Society of Canada shared the results of a large survey during the Alzheimer’s awareness month in January 2018.2 The results showed that 8 out of 10 Canadian anglophones were familiar with the word “dementia”
as a medical term that refers to Alzheimer’s disease or a related illness. A similar result was also observed among francophone Canadians (7 out of 10) indicating that dementia is rather a neutral word that can widely be used. It was very striking, however, to see that 54% of francophones Canadians consider the word “démence”
as offensive and disparaging compared to only 16%
anglophone Canadians. A large number of francophone Canadians still relate to démence with a negative connotation and a pejorative word to be used. Finally, when francophone Canadians were asked whether they prefer to use the word “maladie neurodégénérative”
rather than “démence”, a large majority (between 76%
and 87%) responded yes. This final answer should raise awareness among healthcare professionals for the need to change the medical terms they use when providing a diagnosis.
When a person receives a diagnosis of démence, it’s their whole world that seems to fall apart. That’s what Murielle, a person living with dementia, experienced 3 years ago when her family doctor announced the word
“démence” during a long-awaited appointment. “I’m not demented! When I received the diagnosis, people around me had the impression that I’m not ‘normal’
anymore, I can’t take decisions or have a normal conversation with my loved one, I lost my self-esteem and I was hiding. I didn’t speak about it for a long time because I was afraid of how others will look at me or talk to me. I felt isolated and couldn’t seek help”.
Démence is not just a word with a negative connotation, it can have broader consequences. Fifty percent of people who receive a diagnosis are already at a mild or moderate stage of the disease making pharmacological intervention ineffective and thus preventing any
significant improvement. The fear of the stigma they know they will face, once referred to as a person with dementia, contributes to enhancing the feeling of denial and fear as well as the stress and isolation, instead of them looking and asking for much needed help.
A lot of hard work has been put forward to provide support, counselling, education and activities to dissipate stigma, based on a better understanding of the disease, but mainly to allow people with lived experience to consider a life that is worth living. Let’s not allow a single word to jeopardise all these efforts.
References
1 American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders (5th Edition: DSM-5) ISBN 978-0-89042-554-1.
2 Survey Léger, Alzheimer Society of Canada, 2018 online: https://
alzheimer.ca/sites/default/files/2018-01/Awareness2018-en.pdf Last accessed 20 August 2019.
ALZHEIMER’S DISEASE INTERNATIONAL: WORLD ALZHEIMER REPORT 2019
116
4.5 Stigma in Brazil: The narrative of a person with young-onset dementia
Contributors: Prof Cleusa Ferri, Federal University of Sao Paolo (UNIFESP), Prof Elaine Mateus, Brazilian Federation of Alzheimer´s Associations (FEBRAZ), Dr Deborah Oliveira, UNIFESP, Dr Fabiana da Mata, UNIFESP
My name is Andrea, I am 56 years old and married, with four children, and I was diagnosed with Alzheimer´s disease eight months ago. My mother has Alzheimer’s and so do her two sisters, but I had never imagined that this would happen to me. And then suddenly, I started to forget things, to forget my friends´ names, and the things I had to do. I also misplaced objects that I would find days later. I felt frustrated, got mad at myself many times, and wondered what was going wrong with me. At first, my husband Eduardo was angry too. He also could not understand what was going on. After the diagnosis and the beginning of the treatment, I felt less stressed. Now I go out by myself and drive in the neighbourhood. I am going to start swimming classes and I want to go back to my English lessons. I am slowly getting back on my feet. It is never going to be the same again, but I want to get involved with different things.
Shortly after the diagnosis, I realised things would change. Eduardo would not allow me to go to places I am not familiar with anymore. I used to walk by myself all over the city. Now, whenever I need to go to a distant place, he drives me. My routine is kept to a minimum.
I do not use my cell phone as often, but my closest friends still remember me and invite me to parties. The last time I went to their party, I noticed them whispering in groups and I felt it was about me and my illness. I also quit my job as a dentist because I felt embarrassed many times for not doing the reports I was supposed to do. Despite having supportive colleagues, it was overwhelming.
Andrea was interviewed in her own house by a member of the Brazilian Federation of Alzheimer’s Disease (FEBRAZ) and she was happy to maintain her real identity in this report. Andrea’s brief narrative shows how much anger and frustration the symptoms were for her and her family before they knew she had dementia. Soon after the diagnosis, however, she started to relax and was slowly able to cope. At first, the dementia symptoms made Andrea become self-judgmental – and felt judged by others. However, when the diagnosis was revealed, she began to be able to cope better with the symptoms and to be more self-accepting.
Andrea was fortunate to have an early diagnosis. This is rare in Brazil as the majority of people with dementia are either not diagnosed (around 77% of the older population) or have their diagnosis only in the late stages of the condition. The fact that Andrea had good access to healthcare and that she is a health professional herself might have helped her get diagnosed sooner and to plan
a strategy for a smoother transition into her new reality.
Often, most people living in poverty in Brazil would not have such rapid access to a diagnosis. It is also common for people in Brazil to believe that dementia only affects older people, which may explain why the diagnosis of dementia came as a shock to Andrea at the age of 56, even though she has several family members with dementia. It is common for such stereotypes to hinder middle-aged and older adults in Brazil from seeking help when their first dementia symptoms appear.
This also reflects a common belief in Brazil that dementia is inevitable in later life, which may hinder the prevention of modifiable risk factors for some dementias.
The diagnosis brought some stigmatising experiences to Andrea, who was kept from going outside on her own as her family feared for her safety. Not only were there small changes in her routine, but also in her social circle. Andrea knows that dementia will change her and anticipates that her friends might leave her in the future due to her illness. Despite her good socioeconomic position, Andrea is very likely to experience the feeling of isolation most people living with dementia and their carers experience as the disease progresses. Social stigmatisation is commonly reported by people with dementia. Very often, it is difficult to know whether the relationship with friends and relatives wane over time because most of them lack knowledge to cope with the challenges of the disease or whether people with dementia are slowly drawn from social interactions due to the fear of possible negative reactions to their symptoms. Hopelessness, anxiety, uneasiness and a sense of awkwardness are all embedded in discriminatory practices.
In many ways, the early stages of the condition allow individuals to keep up with their daily lives. Dementia became a disabling and isolating experience for Andrea at first, but a few months after the diagnosis, she is starting to enjoy her life again through new hobbies and experiences. However, not all people with dementia in Brazil are included in everyday life. The most common barriers are stigma and financial issues, both preventing access to services and resources. The more advanced the stage of the dementia, the harder to engage the individual.
Negative associations about people who have dementia in Brazil is pervasive. Even among more educated people, the lack of understanding about what dementia is permeates personal and professional relationships.
Andrea realises that she has been exposed to shame and discriminatory experiences in her workplace since diagnosis, which has led her to quit her job, but she is slowly becoming more empowered and is feeling able to cope.
117
ATTITUDES TO DEMENTIA
4.6 Stigma and response to dementia in Guatemala’s indigenous populations
Contributor: María Cecilia López Murga, Executive, Association Grupo Ermita, Alzheimer de Guatemala Our mission in the Association 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.
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.1.
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, mother of 13 children.
When she was around 65, according to the 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 get worse. 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.
At the time they visited our medical consultation, the husband told us about the extreme changes that his wife went through, and how in order to cure her and to
prevent her from getting angry with everyone and getting violent, or from leaving the house, they locked her in the last room of the house and kept her there until she fell asleep and calmed down.