Nothing about us, without us.
The Seventy-sixth World Health Assembly was held in Geneva, Switzerland, between 21–30 May 2023, and the theme of this year’s Health Assembly was: WHO at 75: Saving lives, driving health for all. Except that this year, not everyone was equally included on the agenda, as you can see even if you were not there, by the tweet from the CEO of ADI, Paola Barbarino; dementia was left off of the program for risk factors:
"Once again the @WHO ignores the 7th leading cause of death in the world -#dementia - when talking risk factors. So sad, so narrow minded, perhaps also a tad ageist? So many countries I have been to where dementia is left out of risk factors campaigns. This is where it all starts"
Dementia is a Non-Communicable Disease (NCD), and as a charity representing the more than 57 million people with dementia worldwide, the global voice of people with dementia, we believe dementia should have been included more comprehensibly.
As Wendy Weidner from ADI also tweeted, “This is so disappointing - when will dementia get the attention it deserves?”
Although dementia is a major NCD, it was not sufficiently included in the agenda; specifically it was not included in the risk factors agenda item, indicating that we (people living with dementia) don't really matter.
Even the recently launched WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health and Neurological Conditions (hereby referred to as “The Framework”), which is a WHO technical product designed to provide practical guidance, norms, and standards to support WHO and Member States advancing, co-creating, and enhancing policies, programmes, and services through the meaningful engagement of individuals with lived experience of these health conditions, had very little representation from anyone living with dementia. There are many videos of people with the lived experience of an NCD, but they did not include the voices of anyone living with dementia, despite our representative campaigning for this.
We do however, sincerely thank Alzheimer’s Disease International for being there, and as in the past, for hosting a Side Event to launch their 6th From Plan to Impact Report V1. The event was an opportunity to discuss progress, identify challenges and explore ways to mobilise the global dementia community towards achieving the plan’s targets. During the hour-long event, ADI CEO Ms. Paola Barbarino was joined by a panel of global experts, including Ministers of Health, to explore how progress is being made by certain countries that can be shared and leveraged to inspire and encourage other nations, as well as assist governments in expediting progress on their own national plans.
The report highlights that only 20% or 39 out of 194 WHO Member States have followed through on their 2017 National Dementia Plan (NDPs) promise. Whilst other countries have been leading the National Dementia Plan targets, setting excellent examples for others to follow. Despite this, progress has stalled. As Paola Barbarino said at the launch and in the press release, "We must not let perfect be the enemy of good."
We need the remaining 133 WHO Member States to take the first step towards achieving even one of the seven action areas of the Global Action Plan. People with dementia have equal the same #HumanRights as everyone else.
We also desperately need those countries with a National Dementia Plan (NDP), to provide the funding required to action their plans.
Additionally, discussions at the ADI side event included the ongoing #WhatsYourPlan campaign, a campaign which aims to galvanize progress around NDP development and implementation in WHO Member States, as well as case studies of success from the report. We were delighted also ADI included a speaker living with dementia, Birgitta Martensson on their panel.
We would also like to thank ADI for representing people with dementia and our care partners and families, by ensuring dementia as an NCD was not completely forgotten, and for making the following statement at the WHA76.
55 million people are estimated living with dementia globally, a figure set to increase to 139 million by 2050. Economically dementia is predicted to cost the global economy $1.3 trillion USD annually, a figure set to increase to 2.8 trillion by 2030. 50% of these costs are estimated to be attributed to informal care, 34% to long-term care and 16% to direct medical costs. Evidence is accumulating to suggest that through risk reduction measures, these cost projections can be reduced. In 2020, the lancet commission published data which suggests that up to 40% of cases of dementia can be delayed or reduced by addressing 12 modifiable risk factors. The economic and human benefits to dementia risk reduction policy are clear and evidence-based. Accordingly, we reiterate our request for Member States to consider implementing specific policy options and cost-effective interventions for the prevention and control of dementia as an NCD.
Unfortunately, without funding and support from strategic partners, DAI can no longer send a member to these events, and we sincerely hope that in the future, we will have support to be there to represent our members in person. It is critical that the human voices of people diagnosed with dementia themselves, are there in person, not being represented by people without dementia, or only one person with dementia. It is not possible or realistic, and is not fair on one person to be expected to represent more than 57 million people.
As the late Professor Tom Kitwood is attributed to having said, “If you’ve met one person with dementia, you’ve met one person with dementia.”
We are all unique, and experience dementia and life differently, and that is true in dementia advocacy as well. As a global organisation representing people with dementia from many countries, our advocacy and voice is critical.
If you, or your organisation can donate to DAI, or partner with DAI to ensure we can represent our members at future events like this, please donate or get in touch today.
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