DAI’s vision is “A world where people with dementia are valued and included”. We provide advocacy & support group for people with dementia. www.joindai.org
Dementia Alliance International (DAI) is the world’s leading advocacy and support group of, by and for people with dementia. We are “the global voice of dementia,” and our membership is made up exclusively of people with a medically confirmed
diagnosis of any type of dementia, currently from 49 different countries. DAI started for the purpose of self-advocacy; when our 8 founding members were each diagnosed with dementia, they individually experienced “the degenerating sense of ‘nobodiness’” that civil rights leader, Dr Martin Luther King, Jr. had already recognized in another disenfranchised group, the mid-20th century African-Americans. Collectively, we at DAI realised we had to fight multiple battles: medical, and those based on social stigma related to cognitive ability. So we began to articulate the unfair, hurtful, de-humanising injustices inflicted upon people with dementia. But the task of speaking out against people causing us harm is complicated (and sometimes precluded) by the fact that many of them are well-intentioned medical staff, service providers, advocacy organisation and close friends or family who are also often our care partners – but may be ignorant, unwilling or unable to take the time to find out our wishes and needs. Although we are grateful for the support of family and friends, we have sometimes been demonized for needing them. People with dementia historically are written about as if they “suffer” from it, are labelled a “burden” to society and have been called all manner of other disrespectful names. What we suffer from is “the worst care in the developed world”. At diagnosis, many people with dementia feel they no longer matter as human beings. Family and friends start talking for us, making decisions on our behalf, talking about us to others even when we are present. Such behaviors risk further isolating us from society, and encourage unethical and abusive treatment by people seeking to take advantage, and wrongfully strip our human rights as well as our political, financial, and social status. This loss of “somebodiness” is prevalent amongst disabled people, including those with mental and chronic illness, old age and, of course, dementia. Since many people with dementia end up disconnecting from their communities rather than face the cruel stigma and discrimination, their isolation increases health care costs related to conditions such as depression, mental breakdown, violence, and suicide. Furthermore, the community also loses their often-valuable academic, emotional, artistic, and other personal contributions to society. The loneliness so many of us experience following a diagnosis of dementia is relentless and intense, and too often becomes our most painful and most loyal companion. The Dementia Friends and Dementia Friendly Communities have the capacity to change that, but must become more focused on our full experience, not simply basic education and awareness. The Mission of DAI
We at DAI therefore believe it is imperative to change misperceptions about dementia, address stigmas associated with it, discourage the detrimental psychological and physical abuse of people with any disAbility, and demand that the voices of people with dementia be included in decisions directly affecting us. The misguided under-estimations of our potential continue to create oppressive and humiliating barriers to our full engagement in society. Some of us have even been publicly accused of being imposters, on the grounds that supposedly no one with dementia could address an audience of professionals at an academic or medical conference. So we have begun to advocate and educate more enthusiastically, starting in our own physical neighborhoods, at professional conferences, and in the vast online communities we have built. We are dedicated to helping all people live well with dementia – not just die from it. We advocate for our rights of equal and full inclusion in public spaces and activities; we educate the public on our human-ness in the face of cognitive disabilities, so that we are not reduced in legal or social status. We seek to live well (just as all people do – that’s the point), to be valued for who we still are, and to be included as equal citizens.*
