In Defense Of People With Dementia: Let’s Combat Stigma And Prejudice
What kind of thoughts do we get when we hear the word “dementia”? And: how do these impact our attitudes towards this group?
This article is designed to raise awareness of the current stigma associated with people living with dementia and, consequently, of the urgent need for intercultural social change based on inclusion and respect.
Dementia, renamed “major neurocognitive disorder” by the DSM-5 diagnostic manual (2013), is defined by the DSM-IV-TR (2000) as an acquired condition characterized by impairments in memory and at least one other cognitive area (praxias, language, executive functions, etc.). These impairments cause significant limitations in social and/or occupational functioning and represent a deterioration with respect to previous capacity.
The most common form of dementia is Alzheimer’s disease, and the most important risk factor is age with a prevalence that doubles every five years after 65 years, however, there is also a (smaller) percentage of people who acquire dementia early (Batsch & Mittelman, 2012).
Despite the difficulty of establishing a prevalence of dementia worldwide, mainly due to the lack of methodological uniformity between studies, the Alzheimer’s Disease International (ADI) federation together with the World Health Organization have indicated in their most recent report (2016) that approximately 47 million people live with dementia in the world and estimates for 2050 show an increase that is equivalent to more than 131 million.
Dementia and social perception
The perception worldwide is uneven depending on the country or culture. Many of the conceptions associated with dementia have turned out to be erroneous and include considering it as a normal part of aging, as something metaphysical linked to the supernatural, as a consequence of bad karma or as a disease that completely destroys the person (Batsch & Mittelman , 2012).
Such myths stigmatize the group, promoting their social exclusion and the concealment of their illness.
Taking into account the increase in life expectancy, which results in an increase in the prevalence of dementia cases, and the lack of information and awareness, it is crucial to carry out work by society as a whole.
These actions may seem small at first glance, but they are the ones that will lead us towards inclusion in the long run. Let’s look at some of them.
Words and their connotations
Words can take on various connotations and the way in which news is communicated conditions, to a greater or lesser extent, our perspectives and attitudes towards something or someone, especially when we do not have sufficient knowledge about the subject.
Dementia is a neurodegenerative disease in which quality of life is affected. However, This does not mean that all these people stop being who they are. who have to immediately quit their jobs after the diagnosis, or who cannot enjoy certain activities as healthy people do.
The problem is that some media have turned out to be exaggeratedly negative, focusing only on the most advanced stages of the disease, presenting dementia as a horrible and destructive disease in which identity fades and in which nothing can be done to achieve quality of life, a factor that has a negative impact on the person themselves and their environment, creating hopelessness and frustration.
This is one of the factors that dementia associations and organizations (day centers, hospitals, research centers, etc.) try to deal with. One such example is the UK’s leading charity Alzheimer’s Society.
Alzheimer’s Society has a great team, researchers and volunteers who collaborate and offer support in different projects and activities with the aim of helping people with dementia to “live” with the disease instead of “suffering from it.” At the same time, they propose that the media try to capture dementia in its entirety and with neutral terminology, making known personal stories of people with dementia and demonstrating that it is possible to have quality of life by carrying out various adaptations.
Another factor that usually leads to exclusion is the lack of information. From my experience in the field of psychology and dementia, I have been able to observe that, due to the effects caused by the disease, part of the environment of the person with dementia becomes distant, and in most cases it seems to be due to a lack of knowledge. on how to handle the situation. This fact causes greater isolation of the person and less social contact, which turns out to be an aggravating factor in the deterioration.
To try to prevent this from happening, it is very important that the social environment (friends, family, etc.) are informed about the disease, the symptoms that may appear and the problem-solving strategies that they can use depending on the context.
Having the necessary knowledge about the abilities that can be affected in dementia (attention deficits, short-term memory impairments, etc.) will also allow us to be more understanding and capable of adapting the environment to their needs.
It is clear that we cannot avoid the symptoms, but Yes, we can act to improve their well-being by encouraging the use of agendas and daily reminders. giving them more time to respond, or trying to avoid auditory interference during conversations, to name a few examples.
Hiding the disease
The lack of social awareness, along with prejudices and negative attitudes towards this group leads some people to keep the disease hidden due to various factors such as fear of being rejected or ignored, exposure to different and infantilized treatment, or underestimation as people.
The fact of not reporting the disease or not going to the doctor to carry out an evaluation until it is in a serious stage has a negative impact on the quality of life of these people, since it has been shown that an early diagnosis is beneficial to carry out as soon as possible the necessary measures and the search for the required services.
Another repercussion of ignorance about the disease is the frequent fact of talk about the person and their illness with the caregiver while they are present and, in most cases, to convey a negative message. This normally occurs due to the false conception that the person with dementia will not understand the message, which is an attack on their dignity.
With the aim of increasing awareness and social knowledge about dementia, it is necessary to carry out the expansion of “Dementia-friendly Communities”, creation of information campaigns, conferences, projects, etc., that comply with equality and diversity policies. and inclusion and that, in turn, offer support to both the person themselves and their caregivers.
Beyond the label “dementia”
To finish, I would like to emphasize the importance of first accepting the person for who and how they are. avoiding as much as possible the prejudices associated with the label “dementia”.
It is clear that since it is a neurodegenerative disease, functions will be gradually affected, but this does not mean we should directly condemn the person to disability and dependency, devaluing their current capabilities.
Depending on the stage of the disease, various adaptations can be made to the environment and support offered in order to increase autonomy in the activities of daily living and the workplace. It should also be noted that they are people who can carry out decisions, to a greater or lesser extent, and who have the right to participate in activities of daily living and socialize like anyone else.
And finally, we must never forget that, even though the disease progresses and affects the person to a great extent, their identity and essence is still there. Dementia does not completely destroy the person, in any case, it is society and its ignorance that undervalues and depersonalizes them.
