A colleague and friend Tina Minkowitz* works towards the rights of survivors of psychiatric abuse, and runs a course for activists and allies on the Convention on the Rights of Persons with Disabilities from a Survivor of Psychiatry Perspective. Her article on disability and incarceration is worth a read, even if you don’t have time to do the course.

Tina’s work also applies to people with dementia, who are also people living with acquired cognitive and other disabilities, being harmed when we need care. In most countries and at places such as the World Health Organisation, dementia sits under the banner of mental health, not neurological disorders where it belongs, and although the WHO states dementia is a major cause of dependence and disability globally, we are not provided with disability access, instead being left with a medicalised approach full of therapeutic nihilism, paternalism, and so on, and an often blatant denial of our human rights.

The concept of BPSD, which has further medicalised dementia ‘care’, and lists normal human responses as neuropsychiatric symptoms causing further harms, including physical and chemical restraint, as well as encouraging segregation with institutional settings via ‘secure dementia or memory units’. The only other members of society routinely treated like this are convicted criminals; shackles are no longer used but the incarcertion and detention is real.

We too have been criminalised…

If you don’t believe people with dementia who are regularly incarcerated inside long term care facilities (nursing homes, residential aged care facilities) globally, please consider the reality that when assisted living is required for a person with dementia, it is more often due to a lack of support being denied to families and care partners who are providing the unpaid care 24 hours per day, 365 days per year, and a lack of community support, disability access, adequate health care services and dementia enabling design of buildings and communities for those of us diagnosed with dementia.

Care partners, family members and/or legal guardians have no other choice when they can no longer provide this level of care. Placing a person with dementia into a long term ‘care’ institution is coercive, as there are almost no non-institutional alternatives, and this has been proven repreatedly to be harmful.

My work towards realising the human rights of people with dementia and our families, and for the embedding of dementia as a disability into clinical practice will continue, although no longer through the current ‘advocacy’ channels, as I do not believe there is a truly independent voice for people with dementia there.

People with dementia have been campagining for change for more than four decades, and almost nothing has changed, so to keep doing the same, and expecting new results seems totally daft! I may have dementia, but I am not insane.

* Tina is a human rights lawyer and a survivor of psychiatry active in the movement since 1978, was the main representative of the World Network of Users and Survivors of Psychiatry in the drafting and negotiation of the CRPD.  She set out the initial building blocks for advocacy that led to the normative change requiring abolition of forced psychiatry, and continues to develop the practical theory needed to put this norm into practice.  Please see her writings at https://uio.academia.edu/TinaMinkowitz and her blog posts on Mad in America and on her individual blog tastethespring.