‘Older people are traditionally encouraged to accept their fate’

Helen, Chairperson of the European Working Group of People with Dementia, is a strong self-advocate of a human rights-based approach to dementia. Her testimony echoes the difficulties faced by persons living with dementia when they need to navigate systems and structures which are not person centred and rights based.

“When I was diagnosed with dementia it felt like falling off a cliff into a dark hole, I struggled to find information and access services. I was viewed by medical professionals as a hopeless case, not a person with a disability needing support and services to live as well as possible.

When I turned 65 I changed from being a person with a cognitive issue to an older person. Being an ‘official’ older person brought access to older peoples services but older people are traditionally encouraged to accept their fate and not offered rehabilitation.

I want dementia to be viewed as a disability to ensure those of us living with the condition are afforded the rights and supports that other living with a disability are offered. If I was in a wheelchair no one would question my need for a ramp but cognitive ramps are not forthcoming.

I believe framing dementia as a disability would encourage a rights based approach and a better understanding of the human rights issues that affect those of us living with dementia.“

Helen, Ireland

Read also:

Carol’s testimony about her ups and downs after she was diagnosed with vascular dementia

Our thematic focus on ageism and disability