The significance of dementia as a disability
Dementia is a condition causing major cognitive and multiple other disabilities globally, with a significant impact on the quality of life and independence of people living with dementia. Defining dementia as a disability is important and relevant to the Dementia Redress project as we consider the rights of people with disability and the need for redress for violence, abuse and neglect. Many people are not aware that dementia is a disability, or that the World Health Organisation (WHO) has listed dementia as a disability for over a decade.
Viewing dementia as a disability is critical, in terms of human rights, including redress, under the Convention on the Rights of Persons with Disabilities (CRPD) and other conventions such as the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (and its Optional Protocol). If dementia is not considered a disability, the rights of people living with dementia are more likely to continue to be ignored.
Most people without dementia, and even some people diagnosed with dementia, do not think of dementia as a condition causing disabilities. Some people with dementia don’t want yet another negative label they need to come to terms with. Until recently, there has been little focus on the disability or the disability rights of people with dementia.
We provide ramps and elevators for people who use wheelchairs for mobility, and hearing loops for the hearing impaired, but are yet to provide universal design or other disability support such as communication access, that enable people with dementia support for their disability. Something as simple as communication access can be referred to as a cognitive ramp and needs to be commonplace; cognitive ramps are critical to equal access as those with communication and speech disabilities (e.g. Primary Progressive Aphasia) under the CRPD.
The 2019 WHO estimate of 55 million people living with dementia is an indicator of the need for change, to increase independence and quality of life of persons with dementia, including those in residential care. The Global Burden of Diseases, Injuries and Risk Factors Study “estimated that the number of people with dementia would increase from 57.4 million cases globally in 2019 to 152.8 million cases in 2050”. Whilst prevalence data may differ, there is no uncertainty we are facing a critical point in how we view and treat people living with any type of dementia, of any age. We need to ensure a higher quality of life and improved care and support than what is currently available.
Fundamental to recognising the human rights of people with dementia, in the community and in long term residential care, is equal access to the CRPD and other international human rights instruments, including OPCAT. Recognition of human rights of people living with dementia includes deinstitutionalisation and de-segregation of housing and support for people with dementia including aged care facilities and secure dementia units.
Recognition also includes monitoring of aged care facilitates and secure dementia units as ‘places of detention’ under OPCAT, until such time as they are closed. New Zealand now includes aged care facilities and secure dementia units as places of detention, and they are under the same scrutiny as jails or refugee detention centres through implementing OPCAT.
A growing number of people with dementia, including members of Dementia Alliance International (DAI) accept they are living with disabilities and are campaigning globally for their rights to equal access to the CRPD and other conventions such as OPCAT.
Dementia as a disability
In 2010, the WHO launched the updated version of the WHO Disability Assessment Schedule (WHODAS 2.0), the internal classification of functioning, disability, and health. At the same time, the WHO stated in Dementia, that ‘dementia is a condition which is the leading cause of disability and dependence in older persons globally’ (it now says a major cause).
At their 2017 mental health GAP (mhGAP) Forum, the WHO re-categorised dementia as a condition causing cognitive disabilities; it had previously been listed under psychosocial disabilities.
Dementia is now recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing cognitive and other disabilities.
The International Disability Alliance includes DAI as an Observer member, in recognition of dementia as a condition causing acquired cognitive (and other) disabilities.
People with Younger Onset Dementia (YOD) in Australia now receive services via the National Disability Insurance Scheme (NDIS), a government funded disability support agency.
Some Australian universities are starting to acknowledge and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia.
In the context of this research project, highlighting the relevance of dementia as a condition causing multiple acquired disabilities acknowledges the fundamental rights of persons living with dementia. Everyone has the right to be free from inhuman and degrading treatment, to be free from stigma and discrimination including indirect discrimination such as unfair treatment and application of blanket policies, and to respect for private life which includes autonomy over their own lives, care, and treatment.
We all have the right to participation in the community; to equal access to healthcare including rehabilitation; to respect for family life which includes maintaining family relationships and ongoing contact; and finally, the right to equal access to communities and relatedly liberty of movement.
Accepting and embedding in our work that all people with any type or cause of dementia, at any age, are also people with acquired disabilities ensures a much stronger focus for their rights under the CRPD. This is critical to the quality of life of people with dementia, to maintaining independence for longer in the community, and in residential care. It also has the potential to reduce the violence, abuse and neglect, that exits in Australia and globally in residential care facilities and ensure redress for past violations.