Why are we the “untouchables”?A workshop about the stigma of

dementia

Lynn Jackson and Christine Bryden

Dementia Advocacy and Support Network International

Transformed into an “untouchable”

• Diagnosis transforms us into labeled people, into society’s untouchables– Is it our self perception or yours of us?

– Is it the stigma of mental illness and the fear of that unknown?

• You can’t see that our brain is diseased, so that we are having difficulties functioning

ADI charterA person with dementia continues to be a person of worth and dignity, and deserving the same respect as any other human being.

People with dementia need a physically safe living environment and protection from exploitation and abuse of person and property.

People with dementia require up to date information and access to coordinated medical, psychological, rehabilitive and welfare services. Anyone thought to have dementia needs prompt medical assessment and those with dementia require ongoing care and treatment orientated to maximising their quality of life.

People with dementia should as far as possible participate in decisions affecting their daily lives and future care. .

Stigma leads doctors as well as the public to deny dementia

• How do we change the public’s attitude?

• How did the AIDS/Cancer movements do it?

• How do we avoid the stigma of giving and receiving a dementia diagnosis.

• Do you think you’ll catch it?

What’s in a name?

• Stigma, the BIG S

• Leads to other S words:– Shame

– Silence

– Secrecy

• The word dementia - "demented”, senile dementia

• Any bodily sign denoting something bad.

• A mark of disgrace, shame or discredit

What can be done?

• Early detection

• Provide all possible treatment options

• Give patients, not carers, the diagnosis and prognosis

• Mainstream dementia services

• "If you live your life out of memory, you live out of history. That's what once was. If you live your life out of your imagination, you live out of potential. That's what can be"

Dementia does not change who we are

• Dementia is seen as a 'loss of self’, and a loss of competence and value.

• We are living with dementia, linking together internationally to develop a 'voice’ and we are being heard.

‘Help card’ for people with dementia (Scotland)

– I have an illness called dementia. I would appreciate your help and understanding. Due to my illness I sometimes get confused, feel lost, forget things, can’t manage money, can’t make myself understood. I like to be independent but I sometimes need help. Here’s how you can help me

– Be patient and try to understand me

– Ask how you can help me.

What about in Canada?

• We are still the same people.

• once a person has Alzheimer Disease, it doesn't mean you push them off.

• one of my doctors said "don't (tell people)" because the more people who know, the more (I'm) put in a position of being on guard all the time.

“He who conceals his disease cannot expect to overcome it.”

• How does stigma affect morbidity? – Stigma reinforces

denial and minimization

– Stigma is a powerful obstacle to seeking care and affects treatment adherence.

• How about stigma and families?

• Stigma has even more pernicious effects. Stigma kills.

• We must watch our language - don’t call us “dementing” or “demented”!

Let’s stop denying stigma exists and do something about it!

• Maybe we can agree there is stigma around dementia

• Then what do we do about it?– Doctors, governments,

professionals, families all need to change

– but how?