Dementia Alliance International (DAI) recently submitted a comprehensive submission to the United Nations Office of the High Commissioner for Human Rights (UN OHCHR) as part of their review on assistive technologies for people with disabilities due to a diagnosis of dementia.
You can view the submission titled “DAI Submission to the UN OHCHR in Relation to the Assistive Technology Review” here: https://dementiaallianceinternational.org/public/assets/2024/submissions-2024/dai-submission-to-the-un-ohchr-in-relation-to-the-assistive-technology-review-.docx-1729017366.pdf
People living with dementia, especially in the prodromal (pre-symptomatic) and early stages of the condition, often demonstrate great creativity in finding ways to support themselves and maintain their independence. These strategies not only help individuals continue to live as well as possible with dementia, but also reduce the ‘stress’ on both paid carers and unpaid care partners. However, as effective as these personal solutions may be, they are not scalable. More systemic, structured support is needed, and this is where assistive technologies play a critical role.
In our submission, DAI emphasized the importance of co-developing policies, products, and services with people living with dementia, rather than for them. Too often, decisions are made without the input of those most affected, which results in solutions that don’t fully address their needs.
Even though dementia is a progressive neurological condition, people living with dementia are still systematically and legally excluded from decision-making processes that impact their lives. There is a persistent misconception that dementia only manifests in its later stages, overlooking the fact that many individuals live with the condition for many years while actively engaging with the world around them.
While the principle of “nothing about us without us” has been embraced in some areas of disability advocacy, people with dementia remain marginalized, and are not equitably included. They are frequently excluded from meaningful participation, their voices ignored or undervalued. As a result, people with dementia are often ostracized, demoralized, and institutionalized without ever having the opportunity to contribute to shaping the policies, technologies, and services designed to support us.
DAI’s submission calls for an urgent shift in this approach. We urge policymakers to recognize the contributions and expertise of people living with dementia and to ensure they are included in the co-creation of solutions that directly impact their lives.
Once again, you can view the submission here: https://dementiaallianceinternational.org/public/assets/2024/submissions-2024/dai-submission-to-the-un-ohchr-in-relation-to-the-assistive-technology-review-.docx-1729017366.pdf