Listening, welcoming, understanding, involving people with dementia. This is what a dementia friendly community does. It is a network of socially conscious citizens committed to making their city - with its spaces, its initiatives, its social relations - fully accessible, including for people with dementia and their families, without excluding or stigmatising them.
How can such a complex action be put into practice? As a starting point, Federazione Alzheimer Italia (FAI) proposes the use of appropriate language, which, it says, demonstrates our intention to respect people with dementia.
"Dementia: words matter" is a new guide, published by FAI, for use in creating Dementia Friendly Communities and also for those who want to commit themselves to choosing their words carefully when talking about dementia and people living with dementia. It highlights the need for dementia-friendliness to begin with the use of appropriate, inclusive and non-stigmatising language, which is not offensive to people affected by dementia.
Some examples of non-stigmatising language suggested by the new guide are:
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The terms "dementia" or "Alzheimer's disease and other forms of dementia" are preferred, as they describe what dementia actually is: not a single and specific disease, but a set of symptoms caused by a brain disease. In fact, there are many forms of dementia, each with their own causes. Inaccurate terms are to be avoided, such as the outdated "senile dementia", used when it was mistakenly thought that memory loss or other cognitive problems were part of normal ageing and not specific brain pathologies.
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"Person with dementia", "person living with dementia", "person diagnosed with dementia" are terms that maintain the dignity of the individual, without any judgement about their condition, and are preferred over the use of "victim" and "patient" - terms which forget the person and focus solely on the condition.
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Highly derogatory terms such as "demented" risk putting the condition of dementia before the person and cause serious offense.
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Avoid using the term "burden", or other similar terms when referring to the impact of dementia on a person or on society. These make broad assumptions and forget that each person - whether a person with dementia, a family member, or a carer – experiences the condition differently.
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Similarly, when talking about the impact that dementia has in everyday life, which is different from person to person, it is important to be factual rather than labelling it as "painful" or "hopeless”. Terms like “life-changing” or “disabling” are accurate and avoid making assumptions about individual experiences and painting a pessimistic and fearful picture.
The guide is available here: www.alzheimer.it/linee_guida_linguaggio.pdf
