Alzheimer’s Disease International (ADI) is a key player in the fight against dementia. Created in 1984 and based in London, England, the non-profit supports the national work of 100-and-counting member associations and federations by hosting global and regional conferences, and through supporting research.
ADI’s Goals and Objectives
ADI’s vision is to make dementia a global priority. “This has been a huge focus for us over the last 10 years,” says Chris Lynch, ADI’s deputy CEO and director of policy, communications and publications. And that push is a timely one. Currently, there are 50 million people living with dementia around the world and, according to the World Health Organization (WHO), that number is expected to triple by 2050.
ADI advocates at high-level meetings with members. For example, at a recent sit-down, India’s minister of health committed to developing a national dementia plan. It holds conferences (this year’s global conference is in Singapore) that offer members, researchers, scientists, health-care professionals, carers and people living with dementia a chance to stay abreast of the latest research, network and develop relationships. It also runs Alzheimer University — three-to-four-day workshops that cover topics such as capacity- building, policy development and advocacy — for staff and volunteers of membership groups.
In 2017, ADI played an instrumental role in the creation of The Global Action Plan on the Public Health Response to Dementia. This public document was spearheaded by the WHO and launched at the World Health Assembly that same year.
The plan consists of seven pillars:
1. Dementia as a public health priority 2. Dementia awareness and friendliness 3. Dementia risk reduction 4. Dementia diagnosis, treatment and care 5. Support for dementia carers 6. Information systems for dementia 7. Dementia research and innovation.
“The emphasis now is on the realization of that plan by helping member agencies develop their [own] national initiatives,” says Lynch. “A good national response will tackle all seven action areas.”
2019 Survey Results
In the spring of 2019, ADI launched a global survey about attitudes related to dementia. Almost 70,000 people responded to the survey, including the general public, health-care professionals, caregivers and people living with dementia.
Key findings included:
Two in three people thought dementia is caused by normal aging (this is untrue), and one in four people thought there is nothing to do to prevent dementia (this is also untrue).
Additional themes included:
Stigma, ill-preparedness of medical personnel to serve the population and extreme stress and illness of caregivers. Case studies related to marginalized groups, like the homeless, people living in prisons and the LGBTQ community, were also shared.
ADI is committed to research that improves the lives of people living with dementia and is a key partner in a number of global projects. One of those current projects, called STRiDE (read more in The Dementia Experience Around the World), explores ways to build capacity for dementia-related resources and support in lower- and middle-income countries.
ADI is also continuing to advocate strongly for drug development. “There is a global desire and push for a drug-based treatment for dementia,” adds Lynch. “We are desperate for a breakthrough.”
In 2008, a month before her 50th birthday, Kate Swaffer was diagnosed with young onset dementia.
After the shock wore off, Swaffer, who lives in Adelaide, Australia, got into action mode. She found writings by the late Dr. Richard Taylor, which encouraged her to reclaim her life. But soon she discovered there were few resources available for anyone with dementia. People newly diagnosed were told to “go home, give up and get their end-of-life affairs in order.”
This was unacceptable to Swaffer. Post-diagnosis, the university she was attending at the time of diagnosis advised her to continue her studies. With disability assessment and support, she completed two undergraduate degrees. This led her to realise she had the right to rehabilitation, which she began demanding from her health-care professionals. She then pursued a master’s degree — focusing on dementia care.
“I was tired of people saying what was right for me and how I was feeling, and not once asking me. We needed a group of people with the condition to manage their own affairs.” Essentially, Swaffer says she became an “accidental activist.”
In 2014, Swaffer and seven other individuals living with dementia formed Dementia Alliance International (DAI), a U.S registered charity, with a global outreach.
“A world where all people are valued and included.”
As well as offering peer support, research information and webinars, DAI represents the global voice of people living with dementia. Board members — like Swaffer, who is the organization’s chair and CEO — advocate at strategic meetings including at the World Health Organization and the United Nations.
At these venues, the group tackles high-level issues such as the prevalence of “Prescribed Disengagement®,” the lack of human rights for people living with dementia and the need for disability status, disability support, rehabilitation and support to continue to live in the community.
— a term trademarked by Swaffer —refers to being advised to disengage from your pre-diagnosis life, your plans and your dreams. It creates a sense of hopelessness for everyone, which negatively impacts a person’s sense of self and their quality of life. Instead, the emphasis should be on capacity, resilience and support.
When it comes to work, Swaffer believes that people living with dementia should have access to disability plans and supports to help them succeed and contribute to the workforce. These may include adaptive technologies like voice-recognition software, assistance with note-taking and/or counselling. Outside the workplace, they should have access to rehabilitation services like speech therapy and disability assessment and support to maintain independence for longer.
Thanks to major advocacy work by DAI, there have been a few positive developments for people living with dementia. In 2017, for example, human rights were included in the Global Action Plan on the Public Health Response to Dementia adopted at the World Health Assembly.
Moving forward, DAI is committed to supporting people to remain in their jobs or volunteer, and live in their homes for as long as possible. It is focused on better global collaboration, including financial support to back national action plans, and it will continue to call for an end to stigma. There is still much work to be done and DAI intends to be at the forefront helping to create a more hopeful world for people living with dementia. [ ]