World Health Organization adopts Global Action Plan on dementia

(Left to right) Professor Peter Mittler, CBE, Human Rights Consultant to DAI and ADI, Paola Barbarino, CEO, ADI and Amy Little, Executive Lead, GADAA

The World Health Assembly today adopts the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva.

We are delighted DAI member and Human Rights Consultant, Professor Mittler CBE arrived on Friday and took  the baton from me to represent us all, along with Amy Little, Executive Lead of GADAA. Paola Barbarino, ADI’s CEO was privileged to make a statement on behalf of  ADI and although it is not in the text of her statement, in the video recording of her speech, she specifically thanked DAI and GADAA for our contribution to this very important work.

ADI stated in their media release, “The plan opens a new era in understanding, care and treatment – but governments must act now. The plan acknowledges that dementia is not a normal part of ageing and that those affected should be helped to live as well as possible.”

Listening to the speakers on the live feed broadcast, I have felt that the global community and governments are taking this very seriously, and feel hopeful change will take place. DAI does have some reservations (read our response below), as do many others on the human rights elements of the plan, and how this plan will be implemented,  evaluated and monitored. Feeling optimistic…

The following is DAI’s full response to the Global Action Plan for a Public Health Approach to Dementia:

We wish to applaud and recognise the leadership of Dr Saxena and Dr Saxena and their team, and also that of Dr Margaret Chan at the World Health Organisation. We greatly value their vision in working on this plan, the process of consultation with all stakeholders, and their efforts to provide this plan in record time of approximately six months. It is a plan which seeks to meet the needs of people with dementia, and their families.

At the side event last week co hosted by DAI, ADI, GADAA and the Swiss Government, I was asked why a global action plan has been so important to me, and in my speech, this is one of the things I said;

“We need this plan because care is failing, and research for a cure is failing.”

With regard to the global action plan, whilst we are delighted it has been adopted, DAI wishes to ensure Health Ministers are aware that people with dementia and their care partners are rights bearers in the 173 Member States legally committed to the UN Convention on the Rights of Persons with Disabilities by ratification.

This was reflected in the WHO’s First Ministerial Conference in 2015 when Dementia Alliance International (DAI) included Access to CRPD as one of its demands. It was later followed by a rights-based resolution presented by Alzheimer’s Disease International (ADI), reflected in the first of the General Principles in the Director’s Concluding Call for Action.

Within the Global Action Plan for a Public Health Approach to Dementia, human rights, empowerment and accountability are characterized as three cross-cutting principles.

Ten years after the adoption of the CRPD by the UN General Assembly, these principles cannot be realised without full commitment to the General Principles and 33 Substantive Articles of the CRPD and its Optional Protocol.

This is also reflected in the WHO’s Global Disability and Development Action Plan, its revised Guidelines for Community-Based Rehabilitation and in its new Quality Rights Indicators for Mental Health (including dementia).

All Member States who have ratified the CRPD will be aware of its precise requirements for citizens with other disabilities. These include an obligation for;

“States Parties to closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations… in the development and implementation of legislation and policies to implement the present Convention” (Article 4.3).

Ten years after the Convention, States Parties have provided little evidence of including persons with dementia in its implementation or monitoring. This may reflect a widespread perception that people with dementia are not rights bearers under this Treaty, and could also be seen an example of systemic discrimination, although not intentional.

We must always remember, people with dementia are fully recognised by the UN as CRPD rights bearers.

Furthermore, Health Ministers must have been involved in the response of their governments to the CRPD Committee in relation to people with sensory, physical, intellectual, mental health, cognitive and other disabilities.

Following representations by Dementia Alliance International and Alzheimer’s Disease International, the CRPD Committee has responded to our joint request to make it clear to Member States that persons with dementia and their care partners are fully included in the implementation of the CRPD on the same basis as those with other disabilities.

This year, dementia has been specifically mentioned in the review process on Canada and in a Parallel Report submitted by Disability Rights UK in the ongoing review of the UK government. Dement is now described in UN documents as a cognitive disability.

This issue was also discussed at the 2016 UN Social Forum on the Convention, particularly at a session on Under-Represented Minorities, which included DAI. The UN Special Rapporteur on the Rights of Persons with Disabilities chaired the session in the presence of the UN representative for all Geneva-based UN agencies.

The 1948 United Nations Declaration of Universal Human Rights and all subsequent Human Rights Treaties can now enable the 50 million people living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

It is pertinent to remind us here, that 67 years after the 1948 UN Declaration, in 2015 the Organisation for Economic Co-operation and Development (OECD) report Addressing Dementia: The OECD Response concluded:

“Dementia receives the worst care in the developed world.”

All of civil society must work towards changing this, and there is a distinctive role for the WHO as Secretariat to the Plan to “offer technical support, tools and guidance to Member States”.

We therefore assume that, in the next phase of implementation, the WHO will ensure that Member States use the accountability framework of the CRPD as set out in Cross Cutting Action 10 (a) of the Plan.

We ask for the support of all Health Ministers and their governments to enable the 50 million people now living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.

Finally, it is now up to all of us to campaign and work together collaboratively, to ensure all people with dementia and our families are treated with the same rights, and equal access to health, disability support, dignity and health care, and are included,  the same way as every other person in society.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International