ADDRESSING DEMENTIA STIGMA – THE ADI’S WAY AND MY WAY
WHAT IS STIGMA? Alzheimer’s Disease International (ADI) defines stigma as:
The word stigma describes when a person or a group of people is treated unfairly because the person or group is perceived to be ‘different’. The person or group is not treated in the same way as people as who are perceived to be ‘normal’. (ADI – World Alzheimer’s Report 2024 page 14).
The contributors to the ADI’s 2024 World Alzheimer’s Report that wrote the chapter What is Stigma (Chapter 1) identified 3 components to stigma:
- Negative stereotypes, i.e. we have ideas and assumptions towards dementia
- Prejudice, i.e. we develop feelings towards people ‘with dementia’
- Discrimination, i.e. we behave differently towards those ‘with dementia’ from other ‘normal’ people
In addition, these contributors define 5 types of stigmas:
- public stigma – societal perceptions which lead to societal behaviours
- self-stigma – when diagnosed with dementia people become embarrassed and ashamed leading to low self-esteem
- courtesy stigma – towards people close to those diagnosed with dementia
- affiliate stigma – people close to those living with dementia feel shame and embarrassment and anger and isolate themselves socially
- structural stigma:
a) limited access to services
b) institutionalisation of those diagnosed with dementia
c) limited education of health carers
The ADI rightly and passionately exhorts all of us to amend our ways:
We must collectively seek to create environments where people with dementia and their carers can live meaningful, inclusive and stigma-free lives. (ADI – World Alzheimer’s Report 2024 page 22).
BUT how can this be achieved when people all over the world are frightened by this one word ‘dementia’.
The ADI’s position is quite determinedly that everybody in the world should embrace ‘dementia’ in all that is stands for. BUT many people across the world and across all boundaries don’t like the word dementia, according to its own 2024 World Report.
The ADI’s own findings make depressing reading. If 65% of professionals around the world, in rich and poor countries, across the whole gamut of economic, social and educational spectrum do not know what ‘dementia’ really is, what hope is there for the individual to make a difference in a world imbued with institutionalised bias against people with impaired mental / cognitive capabilities?
The only way to stop the stigma is to stop using the word ‘dementia’. Let us use the correct medical terminology: cognitive impairment or disability caused by Alzheimer’s or Lewy Body or strokes or clinical depression or drug abuse …. Or whatever medical examinations clearly identify as the primary cause of our type of dissociation from neurotypical behaviours.
Photo by Ciro Palomba at Pexels.com