Dementia side event – 70th World Health Assembly

Dementia side event – 70th World Health Assembly

Member States and civil society join a side event at the 70th World Health Assembly (WHA) chaired by Switzerland and Alzheimer’s Disease International.

On Thursday 25 May 2017, GADAA co-hosted a side event of the World Health Assembly in partnership with Switzerland, Alzheimer’s Disease International and Dementia Alliance International. The event featured an expert panel to discuss opportunities from the WHO Global Action Plan on the Public Health Response to Dementia 2017-2025 submitted for adoption during the 70th World Health Assembly (WHA).

Carey Mulligan statement WHA70

Carey Mulligan opened the event with a special recorded message. The actress said,”I have experienced first-hand how devastating dementia can be due to my family’s experience of the disease.  It’s for this reason that I am honoured to be the UK’s Global Dementia Friends Ambassador.” She continued, “knowing that dementia is now a global health priority of the World Health Organisation and Member States gives me optimism that we are on the right course to fight this devastating condition. I hope governments and partners around the world get behind this plan and unite for a world without dementia.

Co-chairs Tania Dussey-Cavassini (Swiss Ambassador of Global Health & Vice-Director General, Federal Office of Public Health) and Paola Barbarino (CEO, Alzheimer’s Disease International) introduced a panel of speakers:

  • Mr Hiroyuki Yamaya – Director, Office of Global Health Cooperation, International Affairs Division, Minister’s Secretariat, Ministry of Health, Labour and Welfare. Speaking on behalf of Dr. Naoko Yamamoto, Honourable Assistant Minister for Global Health and Health Industry Strategy of Japan.
  • Dr Shekhar Saxena – Director of the Department of Mental Health and Substance Abuse, WHO Headquarters
  • Kate Swaffer – Chair, CEO & co-founder of Dementia Alliance International
  • Amy Little – Executive Lead of the Global Alzheimer’s & Dementia Action Alliance
  • Dr Laura Campo – Advisor, International Advocacy and Professional Relations, Eli Lilly
  • Marc Wortmann – Former Executive Director, Alzheimer’s Disease International
Dr Fernando Llorca Castro
Dr Fernando Llorca Castro

Mr Hiroyuki Yamaya, speaking on behalf of the Honourable Assistant Minister for Global Health and Health Industry Strategy of Japan, called for an inclusive society with appropriate care, support and services for people living with dementia. Highlighting Japan’s Dementia Supporter programme and similar programmes in other countries he recognised that, “it is not just beneficial for people with dementia, but for society as a whole.”

Honourable Dr Fernando Llorca Castro, Minister of Health of Costa Rica was also in attendance and reiterated Costa Rica’s support for the Global Plan and for national and regional action on dementia, stating that, “at PAHO level, it should be one of the priorities of the whole continent.” He also thanked the work of the national Alzheimer’s Association of Costa Rica La Asociación Costarricense de Alzheimer y otras Demencias Asociadas (ASCADA).

WHO’s Dr Shekhar Saxena declared “the Global Plan belongs to all of us.” He urged Member States and partners including civil society to “look at the Action Plan very carefully and look at where you can contribute,” urging that “the commitment that is being shown on the Action Plan needs to be converted into action.”

Kate Swaffer, Chair and CEO of Dementia Alliance International called for a human rights approach to dementia, “we ask for the support of governments to ensure the 50 million people living with dementia and the 100 million expected to have it by 2030, have access to their rights under international law on the same basis as every other person.” Dementia Alliance International members are increasingly concerned that the 168 Member States to have ratified UN Convention on the Rights of Persons with Disabilities are not including persons with dementia in its implementation.

In closing words, Paola Barbarino said, “this is becoming the biggest and most expensive disease of the twenty-first century.” Calling for 1% of the $3 trillion societal cost of dementia to be committed to funding research including for care improvements, prevention and risk reduction, drug development and public health, Barbarino rallied, “this is start of a new era.

The final words went to Tania Dussey-Cavassini of Switzerland, who has led calls for the Global Action Plan. She echoed calls for dementia funding, “I ask all of you, especially Member States to step up to the plate, to put money in the right place, to support research so tomorrow we can have a cure.

The elephant’s name is Dementia

WHA70 side event statement from GADAA Executive Lead:

Good afternoon.

My name is Amy Little, I’m Executive Lead of the Global Alzheimer’s & Dementia Action Alliance also known as GADAA.

The GADAA network works to connect a broad spectrum of international civil society organisations (iNGOs) to support global action on dementia including international development organisations, health-focused NGOs, disability rights champions, older people’s networks, human rights organisations, faith based groups and women’s organisations. We aim to get the ‘non-dementia’ world involved in this movement.

Alzheimer’s Disease International , Alzheimer’s Society, Age International and Dementia Alliance International form the GADAA Steering Committee.

GADAA aims to amplify the number of voices advocating and educating on dementia. We seek to build commitment and action internationally and to share best practice and learning.

As I have been here this week, sometimes I have felt like I’m bringing an elephant into each room I enter. The elephant’s name is Dementia. The same goes when we talk about dementia with potential partners for the first time. An elephant is a large animal. It shouldn’t be hard to miss, but for some reason we have to work hard to get this beast noticed, to stop it being ignored.

For too many years dementia has been consigned to the back of the queue and dismissed as a natural process of ageing. It’s not!

Age is indeed a risk factor for dementia, but dementia is an NCD, it’s a medical condition, just like cancer, HIV/Aids, stroke and other conditions.

We hope the Global Dementia Action Plan is the start of recognition of the rights of the millions of people worldwide who live with dementia.

© Leah Beach
© Leah Beach

The photo you see behind you is a couple who live in Kenya. The gentleman’s name is Mujananita. He is very prominent in his village. His wife is there helping to dress him. Until the photographer and the organisation Global Vision International visited this village, people didn’t know what dementia was. His wife was saying “he has forgotten his way in the village he has spent his entire life,” and that he “can’t remember how to dress and hold a fork.” They didn’t know what was wrong with him, but through awareness he is now getting greater support and he will have a better quality of life.

Too often around the world, in every country, families do not understand what is wrong with their loved ones when they develop dementia. In this situation a simple first step is dementia awareness. Community health workers and volunteers must first be taught that dementia is a medical condition. And then there are further steps, tools that exist to support diagnosis and care.

The Global Dementia Action Plan due for adoption this week recognises the need for a broad spectrum of partners to implement the plan.

Through GADAA, we can strengthen global efforts to tackle the stigma around dementia and raise awareness of the disease where it is needed most, particularly in lower and middle income countries. We can also encourage capacity building by matching larger NGOs with national Alzheimer’s associations, and encourage iNGOs to support the delivery and dissemination of dementia tools and interventions like WHO’s i-Support.

As well as building the broad GADAA network, this year we are also exploring certain thematic areas including dementia in emergency settings and women and dementia.

On International Women’s Day in March, we were privileged to be joined by Tania Dussey-Cavassini, Kate Swaffer and other leading women to discuss dementia through the gendered lens.

We published this report ‘Women & Dementia: A Global Challenge’. And rightfully we are challenging Member States, civil society and all stakeholders to stand up for the rights of women affected by dementia.

The report highlights that:

  • Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is now the biggest cause of death for women in the UK and other countries
  • Throughout the world, women experience higher dementia prevalence rates than men and face gender-specific barriers to living well with the condition.
  • Women provide the vast majority of both unpaid and formal care to people living with dementia, with around two thirds of primary care suporters around the globe being women, rising to more than 70% in lower and middle income countries.
  • The stigma surrounding dementia exists universally and extreme forms of discrimination can lead to the abuse of women. Older women affected by conditions such as dementia are exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition.
  • Yet shockingly of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gender-sensitive responses. There is also no systematic data collection to disaggregate the prevalence, diagnosis rates or impact of dementia on women.

A gender-perspective is included the new global dementia action plan. We urge that it is also included in all national dementia policies and plans.

GADAA, and members will be monitoring this progress. And we urge international civil society organisations supporting women’s rights and health that have not yet joined our network to also join us to support in doing so.

Thank you