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DAI Statement by Christine Thelker #COSP12

Christine Thelker

DAI Board member Christine Thelker was listed to make a Civil Society Statement on behalf of Dementia Alliance International and our Strategic Partners Alzheimer’s Disease International on Wednesday of this week during Round Table 2 of the 12thSession of the Conference Of State Parties on the Convention on the Rights of Persons with Disabilities, also the session being co-chaired by Kate Swaffer.

Round Table 2: Social Inclusion and the Right to the Highest Attainable Standard of Health

Read the full stament here which was prepared ij response to the theme of the session. Unfortunately the session was cut from 3 down to 2 hours, so she didn’t get to make the statement on the day. However, there was an opportunity to make a shorter verions of it at a Side Event yesterday, which we will share soon, including with a video of her speaking. The recording of our Side Event, Dementia: the leading cause of disability is also available online now.

Prepared Civil Society Statement:

Distinguished Chairs, speakers and delegates

Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, the global voice of 50 million people living with dementia and Alzheimer’s Disease International today, who are our strategic partners.

As partnering international organisations, we collaboratively advocate for the rights of all persons with dementia and their families.

The 2030 Agenda sets out an ambitious goal vision to reach and empower those left behind.

As one of the 50 million people with dementia, I am being left behind.

Furthermore, women and girls are disproportionately affected by dementia. More women than men live with the condition, they provide the majority of care support and they also face the greatest stigma.

Women also make up 2/3 of dementia care supporters and more than 70% in lower and middle income countries. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against, as a result of their age, sex and condition.

I am here today to ask you to help me claim my rights as a person with disabilities to empowerment and social inclusion and the highest standard of universal health care.

Articles 19, 25 and 26 of the CRPD respectively address my rights to live independently in my own home in the community, without fear of being institutionalised and segregated, due to health and disability services and support not being in place to support me to live independently.

As a person with acquired cognitive disabilities that may cause communication, personality or other changes to my capacity to function without support, I demand my right to non-pharmacological support to live with a high quality of life, and am not chemically or physically restrained.

The lack of education and awareness of dementia of health care professionals and service providers, compromises my right and ability to access adequate services. Article 25 clearly states I must be able to access health care. Currently, people with dementia are being denied this.

Secondary to my dementia, as a person with younger onset dementia, I am being further denied support to live well in my community, support to maintain independence and access to health care.

It is therefore imperative we ensure health care providers are adequately educated in dementia, and those of us living with it are supported as people with cognitive and other disabilities to live a high quality of life in our community.

This is our fundamental right.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no one living with dementia is left behind.

Thank you.

Christine Thelker

Board Member
Dementia Alliance International

And Then I Looked Up Dementia – Women Speak Out

We are pleased to be part of the launch of this video, highlighting the impact of dementia on women, discussing the higher incidence of women people diagnosed with it, and the higher numbers of woman who become care partners to someone livign with it. Thanks to Amy Little and GAADA for pulling this project together in time for World Alzheimer’s Month 2017.

“Dementia is a global women’s health, social care and rights issue that can no longer be ignored.

And Then I Looked Up Dementia brings together women living with dementia, the actress Carey Mulligan, iNGO women’s specialists, dementia experts, government representatives and others to speak out for women affected by dementia everywhere.

Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is recognised as a global health priority. Around the world, more women than men live with dementia and face gender-specific barriers to living well with the disease.

Globally, women provide the majority of both unpaid and formal care to people living with dementia. People living with dementia can face stigma and even abuse due to their condition, for older women, age and gender-discrimination can compound this treatment. Take action to get it right for every woman living with or affected by dementia around the world.” GADAA, 2017

To find out more visit https://www.gadaalliance.org/women

DAI and ADI continue to work together

Following a DAI, ADI, GADAA and Swiss Government Side event last night at the 70th World Health Assembly in Geneva, I was also able to sign the Memorandum of Understanding (MoU) between DAI and ADI, and this photo is of the new CEO, Paola Barbarino and  me signing it. This means the two organisations will continue to work in collaboration, but autonomously, as sister organisations for the benefits of people with dementia and our families, and ensures we have sponsorship to support people with dementia through DAI.

These are my speech notes for the Side Event mentioned above: 

“NEW OPPORTUNITIES FROM THE GLOBAL ACTION PLAN ON DEMENTIA”

Distinguished guests, ladies and gentleman

People with dementia greatly value the global leadership of  Dr Saxena, Dr Dua and Dr Margaret Chang and their team, in meeting the needs of people with dementia providing this World Health Organisation “Global Action Plan for a Public Health Approach to Dementia” which we hope will be accepted at the WHA tomorrow or soon after.

I was asked to discuss why a global action plan has been so important to me, and was also given the brief to be challenging. Of course, that is not difficult for me.

In reality, we need this plan because care is failing, and research for a cure is failing.

In representing the global community of people living with dementia, although my own experience is unique, I have been campaigning for human rights based approach to dementia for many years. What this means is a whole of health care approach, and support for disabilities to maintain independence for as long as possible, with educated health care workers who provide optimal care that includes rehabilitation, and dignity for all people.

We wish to state today that we are concerned the Global Action Plan provides little evidence of using the UN Convention on the Rights of Persons with Disabilities to underpin the policy, and therefore ask that we all work together to ensure human rights for all, including people with dementia.

People with dementia are fully recognised by the UN as rights bearers under this treaty, which means that the governments of the 173 Member States who have ratified the Convention have been held to account for their inclusion by the UN Human Rights Bodies since the Treaty came into full operation in 2008.

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.

We will continue to advocate for governments and all members of civil society to work towards ensuring the human rights based approach to dementia will be reflected in their national dementia strategies as we work together to implement this plan in society to ensure a higher quality of life for people living with dementia and our families.

Thank you.

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

Please note, I only had three minutes as part of a panel, so was unable to give a more complete response from DAI to the Plan.