Dementia, disAbility and the CRPD

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I’ve become increasingly frustrated that academics, service providers, advocacy organisations, dementia consultants and health care professionals refuse to include in their work, and therefore our services, that dementia is a major cause of disability and dependence globally (WHO).

A few others are starting to feel my pain, and Daniela Greenwood today made a comment to one of my posts on LinkedIn today, part of which I’ve quoted here:

I am having difficulties finding any valid justification for the ongoing refusal to view and support people with dementia as people with acquired disabilities. I have no idea why the #CRPD is not viewed as the established and authoritative international law covering individuals experiencing the broad range of disabilities that can be experienced with dementia. Even though, as you have pointed out on numerous occasions, the WHO requires that the CRPD underpin all national, regional and organisational dementia strategies guiding policy and practice. I will keep searching, but as yet I have found only deeply held assumptions that hark back to the old medical model-social model debates. (Daniela Greenwood, in response to my post on LinkedIn)

In 2010, the World Health Organisation launched the updated version of the WHO Disability Assessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and have also stated very clearly on their website for almost a decade dementia is a condition which is a major cause of disability and dependence.

Why then, is everyone so determined not to provide support for people with dementia as people with acquired cognitive, dunctional, sensory, mobility and other disabilities, aligned to the CRPD?

About the new (no 11 years old!!!) WHODAS 2.0:

The new WHODAS 2.0 supersedes WHODAS II and shows the following advantages:

  • A generic assessment instrument for health and disability
  • Used across all diseases, including mental, neurological and addictive disorders
  • Short, simple and easy to administer (5 to 20 minutes)
  • Applicable in both clinical and general population settings
  • A tool to produce standardized disability levels and profiles
  • Applicable across cultures, in all adult populations
  • Directly linked at the level of the concepts to the International Classification of Functioning, Disability and Health (ICF)

WHODAS 2.0 covers 6 Domains of Functioning, including:

  • Cognition – understanding & communicating
  • Mobility– moving & getting around
  • Self-care– hygiene, dressing, eating & staying alone
  • Getting along– interacting with other people
  • Life activities– domestic responsibilities, leisure, work & school
  • Participation– joining in community activities

WHODAS 2.0 supersedes WHODAS II and is an altogether different instrument that is grounded in the conceptual framework of the ICF. It integrates an individual’s level of functioning in major life domains and directly corresponds with ICF’s “activity and participation” dimensions. It was developed through a collaborative international approach with the aim of developing a single generic instrument for assessing health status and disability across different cultures and settings. It supersedes WHODAS II and integrates an individual’s level of functioning in major life domains and directly corresponds with ICF’s “activity and participation” dimensions. WHODAS 2.0 was developed through a collaborative international approach with the aim of developing a single generic instrument for assessing health status and disability across different cultures and settings.

So why is no-one in the dementia space taking about this or usign it in their work?

As you can imagine, it is very frustrating, and I too have never been able to find any valid justification for experts to shift on their views on dementia being a condition causing disability.

At least to me, a person who actually lives with a diagnosis of ounger onset dementia, and who is only doing as well as I am because I have very actively demanded – and been able to self fund – access to support for my increasing disabilities, it is confusing and very frustrating that the sector, who proclaims to want to improve care, services and support for people with dementia, are so unwilling to move from their own positions of ‘we know best”.

It is even more frustrating that they are denying newly diagnosed people with dementia access to so many services related to dementia beign a disability, and including access to the CRPD. Yes, even though newly diagnosed people with dementia may initially struggle with being told ‘dementia is a cause of disability’, not to give them the facts is unethical.

Worse, this unwillingness to move from a 20th Century view of dementia to a 21st Century one, which is likely to ensure that people with dementia will become dependent more quickly then they may need to, and which will also pre-determine a poorer quality of life.

I also strongly believe if newly diagnosed people were advised the disabilities can be supported to allow them maintain their quality of life and independence for longer, and that by accepting dementia as a disability, they also have rights in particular via the CPRD, I feel damn sure they’d change their perspectives…

By academics and professionals refusing to change their own attitudes about dementia as a disability, perhaps unintentionally, they continue to support the persistent Prescribed Disengagement®, and inadvertently are ignoring our right to support to reinvest in life.

Here is a list of what I believe is being is persistently being left out of the work we are told is being done to improve the lives of people with dementia includes (feel free to add to it in the comments section!):

  • Always stating up front that dementia is a condition causing acquired disabilities
  • Proactive disability assessment
  • Proactive post diagnosis disability support, soon after diagnosis
  • Commmunity Based Rehabilitation
  • Equal access to the Convention on the Rights of Persons with Disabilities (CRPD) and other Conventions in National Dementia Plans, in policy, and in health care including support and services for people with dementia

What is the point of advocating for, or writing articles or books about, or even being involved in the WHO Guidelines for Rehabilitation for Dementia, if we cannot actively promote and embed in our work that dementia as a cause of acquired disabilities?

Frustrated…

You are very welcome to respectfully join this global conversation.

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