Do young people know enough about dementia, a mental impairment (1) that affects around 48 million people worldwide? How can we educate them about something so little-known (2)? How can young people understand a disorder (3) that they personally feel so distant from? Despite the high number of people who have it, dementia is still a condition full of mysteries. It generates many prejudices and, contrary to what might be thought, does not only affect the elderly. To address this lack of awareness, and in order to involve young people, Alzheimer Scotland and Young Scot have launched #DecodeDementia, a campaign full of commitment and creativity. Cosmopolita Scotland’s Guillem Lisarde Sepúlveda was fortunate enough take part.
Guillem Lisarde Sepúlveda
On October 10, I travelled from Edinburgh to the Scottish Youth Theatre in Glasgow to participate in #DecodeDementia, a workshop for 14 to 21 year-olds organised by Alzheimer Scotland and Young Scot. We were there to learn about dementia and come up with (4) ideas to promote awareness about this illness among young people. During the trip, I took some time to find out a few facts about dementia and I discovered that there are more than 800,000 people with dementia in Spain, and almost 90,000 in Scotland.
“My grandmothers are not the only ones”, I thought, “there are lots of people who suffer from (5) dementia”.
I also discovered that there is some confusion and many misconceptions about this illness. Despite what many believe, dementia is not a specific disease but a “general term for a decline in mental ability severe enough to interfere with daily life”. Alzheimer’s disease is the most common, but there are many others. Dementia is also one of the main causes of disability and dependence among older people. But, although this group is primarily affected, it is not a normal consequence of aging.
In the workshop, I met with 20 people with very different life experiences but all with a common goal: to share experiences and transform conceptions about dementia with ideas that could help Alzheimer Scotland in future campaigns to inform and raise awareness about dementia. Participating in this event has helped me to understand that dementia does not only affect those who have it, but also their families and friends who try to understand what is happening to their loved ones and offer their help to them so they can have the best possible quality of life. Many of us were attending the workshop because we had experienced the devastating consequences of dementia in our own families and because we wanted more information to help us raise awareness about it among other young people.
In the first part of the workshop, we shared our impressions about dementia through small games such as “build a memory”. The level of creativity of the participants impressed me. I had not remembered how it felt to get your hands stained with coloured markers, or to let your imagination run free. In this case, we used our imaginations to express, without words, the anger we felt towards dementia. We drew, made silhouettes of cardboard and made other creations to explain our perceptions of dementia and to understand the symptoms of a condition that involves impairment of the memory, the intellect, the behaviour and the ability to perform daily activities.
In the second part of the workshop, we shaped our ideas into implementable actions. Organised in teams, we discussed the prejudices that exist around dementia. We talked about the difficulties in reaching young people with this information and the tackling (6) this issue. Ally Bally Bee, for instance, is “on a mission to produce a personalized children’s book about dementia”. At the end of the event, all these reflections became true communication strategies and ideas that Alzheimer Scotland can use in future national campaigns. Beyond (7) the quality of their ideas (some of which were excellently creative), it is important to highlight the commitment and eagerness of all the participants who defended the principle that it is necessary to get young people involved. Only then can we build a more informed, open and accessible society which cares about people with dementia.
(1) Mental Impairment.
Definition: a state of arrested or incomplete development of mind, which includes significant impairment of intelligence and social functioning and is associated with abnormally aggressive or seriously irresponsible conduct.
Example: “Do young people know enough about dementia, a mental impairment that affects around 48 million people worldwide”; “¿Sabemos lo suficiente sobre la demencia, una discapacidad mental que afecta a cerca de 48 millones de personas en todo el mundo?”.
Translation: discapacidad mental.
Comment: the people who suffers from mental impairment are called the mentally impaired.
Definition: not widely know; not famed
Example: How can we educate them about something so little-known?”; “¿Cómo se puede concienciar a los jóvenes sobre algo tan desconocido?”.
Translation: poco conocido.
Comment: A hyphen is used when the term is an adjetive before the noun.
Definition: an upset or disturbance of health; ailment; a problem which affects someone’s mind or body.
Example: “How can young people understand a disorder that they personally feel so distant from”; “¿Cómo se puede concienciar a los jóvenes sobre un trastorno que ven tan lejano?”.
Comment: it should not be used interchangeably as a synonym of the term disease (enfermedad).
(4) Come up with (something).
Definition: to produce or find
Example: “We went there to learn about dementia and come up with ideas to reach awareness […]”; “Fuimos allí para aprender sobre demencia y elaborar ideas para concienciar […]”
Translation: elaborar, conseguir, inventarse
(5) To suffer from – Try To Avoid This Language.
Definition: to feel pain or distress as a result of an illness.
Important: Some people object to the phrase “suffer from dementia” as they contribute to the stigma surrounding the condition. See the Dementia Language Guidelines for preferable phrases.
Example: “Dementia does not only affect those who suffer from it,”; “a demencia no solo afecta a los que la padecen, también a sus familias y sus amigos”.
Translation: padecer, sufrir de.
(6) To tackle (something/someone).
Definition: to undertake (a task, problem, etc); to confront (a person, esp an opponent) with a difficult proposition.
Example: “There are projects that are already tackling this issue”; “[…] de hecho, ya existen proyectos que buscan la forma de enfrentarse a esta problemática”.
Translation: confrontar a, enfrentarse a.
Definition: at or to the other or far side of something; outside the limits of something.
Example: “Beyond the quality of their ideas, it is important to highlight the commitment and eagerness […]”“Más allá de su calidad, me quedo con la ilusión[…]”
Translation: más allá de.
Have worked in this article:
Author: Guillem Lisarde Sepúlveda
Edition: Noelia Martínez
Proofreading: Martin Forrest & Alex Owen-Hill
Translation: Guillem Lisarde & Noelia Martinez
Use of English for Spanish Speakers: Noelia Martínez (Not Just Words), Alex Owen-Hill.
Video: Guillem Lisarde Sepúlveda
Images from Young Scot