This presentation titled “Stigma and Dementia” by Kate Swaffer was produced by Dementia Alliance International specifically for the Dementia Action Alliance Conference being held in Atlanta, June 20-12, 2019.

As a virtual keynote speaker, I’m extremely hopeful this video presentation will do justice to my thoughts, personal experiences and beliefs on stigma and dementia in the 21st Century. One might question why do we still need to talk about stigma and dementia, but the reality is, very little has changed.

It may have appeared to on the surface, but the subversive and subtle experiences of stigma are reported regularly, as are the more obvious examples, a few of which I will share later on.

With or without changing cognitive capacity,

I am still all there,

I am not a shell,

and the essense of me, of my being, is still very much in tact.

Due to dementia, I may change, but so do you, each and every day.

Video currently unavailable

Dementia Alliance International (DAI is a non-profit group of people with dementia, now representing members from 49 countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia. DAI’s vision is “A World where people with dementia are fully valued and included.”

Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia – here

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By donating to DAI, you assist us to support more people with dementia, as well as the global dementia community which includes families, academics and health care professionals working in dementia.

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Dementia Alliance International – Peer-to-peer support groups
Dementia Alliance International (DAI), whose global membership is exclusively for people with a medically confirmed diagnosis of any type of dementia, continues to work on claiming Human Rights for all people with dementia.
However, since the World Health Organisation Global action plan on the public health response to dementia 2017-2025 was unanimously adopted, DAI members continue to report that little has changed for people facing a new diagnosis of dementia.

DAI therefore implores governments and organisations to collaborate and co-operate with each other towards ensuring the rights of people with dementia are recognised and that changes relate to real life support and services.

DAI provides online support through cafes, peer-to-peer support groups, regular blogs and educational webinars. Chair, CEO and Co-founder of DAI, Kate Swaffer, says: “unfortunately, many DAI members continue to report the DAI services are often the only support they receive, and ADI, ADI members and especially governments have the potential to ensure this changes”.
The World Health Organisation states, “Dementia is one of the major causes of disability and dependency among older people worldwide”, and we therefore need a new pathway of support to include disability support and assessment, and support including Community Based Rehabilitation.

As founding members of the Global Rehabilitation Alliance, and Observer Members of the International Disability Alliance, DAI continues the pursuit of a disability rights-based approach to dementia, and they call on others to join them.
DAI hosts monthly educational webinars, attended by not only by their members and their families and friends, but by professionals working in the sector.

The webinars cover topics such as driving and dementia, sex and intimacy, living more positively with dementia, dementia and rehabilitation as well as hosting an online art exhibition during World Alzheimer’s Month.

These types of activities positively support members to live with more purpose and allow for participation, without the need to travel, sometimes difficult for people with dementia following a diagnosis.
During World Alzheimer’s Month in 2018, DAI hosted a daily blog series themed “Hellomynameis.”
These was a series of written or video stories of members living with dementia and have continued on as a monthly blog.
This series was not only informative and engaging, it led to dementia consultants and service providers using them in some of their training, to ensure care staff better understand the lived experiences of dementia.

It was dedicated to the voices of people with dementia, where members shared their personal stories of being diagnosed with dementia.

The hope is that these stories bring hope to others facing dementia, and that in sharing these stories they collectively support, inspire and educate about the negative and positive realities of living dementia.
The #Hello blog series was inspired by the late Dr Richard Taylor, one of DAI’s co-founders, who was once asked, “What should I say to a person with dementia?”

He answered by saying, “Try Hello.”

Dementia Alliance International – Membership form