As part of our blog series for 2019-2020, our blog is centered around the resources and support available for dementia patients and caregivers from community organizations and the government. In particular, we are featuring several national and international organizations dedicated to helping patients and their families with the disease, including research, healthcare delivery, education and advocacy.
We were fortunate to be able to speak with Annie Bliss and Taylor Paatalo from Alzheimer's Disease International (ADI) on the work their organization does globally to raise awareness of dementia.
1. Tell us about your organization – who you are, what you do, and what your mission is.
ADI was established in 1984, by 4 founding associations - Canada, United States, United Kingdom and Australia - a small group of people determined to give a better quality of life to those living with dementia and those caring for them – and to gain an international advocacy voice. Since then, ADI has gone on to become the umbrella foundation for 100 Alzheimer associations and federations throughout the world.
As an international charity, ADI is heavily involved in support, education and advocacy. Some of the ways that ADI does this include; producing an annual World Alzheimer Report with the latest findings in the field; assisting the development of Alzheimer associations through our unique ‘Alzheimer Universities’ training programmes; and leading on the global World Alzheimer’s Month campaign each September. Most importantly, we try to involve people living with dementia in all of our work and much more.
Our mission is to advocate for persons living with dementia and their carers, as well as raise global awareness around dementia, build and strengthen other Alzheimer’s associations and stimulate research – particularly in low and middle-income countries where stigma remains prevalent throughout healthcare systems and the general public.
2. Given that Alzheimer’s Disease International is a worldwide federation of Alzheimer’s associations, what are your organization’s focuses and priorities for dementia globally?
Following 10-years of advocacy to establish dementia as a global priority, ADI’s strategic focus switched following the 2017 launch of the WHO Global action plan on the public health response to dementia 2017-2025. A primary objective now is in ensuring governments deliver against their commitment to this plan.
ADI works at a multilateral level including being in official relations with the WHO and in 2019 we have worked specifically on influencing the G20, under the Japanese presidency, to ensure that dementia was included in this year’s Osaka summit declaration.
3. What services are available through your organization for individuals with dementia, their families, and/or caregivers? How can interested individuals access your resources or get involved with your services? In particular, are there any services provided locally in Canada?
Our website offers an abundance of information and resources for individuals who are living with dementia, as well as their loved ones and caregivers. The information on our website ranges from detailing what dementia is, to insights into clinical trials, the latest statistics on dementia and innovative care developments. The resources we offer, all free, also range from a monthly newsletter, factsheets, booklets, a decades’ worth of our annual World Alzheimer Report and more.
In addition, our website holds a directory of Alzheimer associations around the world. These associations typically provide information, support and services that are tailored to the country in which they are based, as well as offering more information about local chapters and branches of Alzheimer associations in their respective country.
For services and resources based in Canada, we recommend looking at our member Alzheimer Society of Canada’s website, which includes a directory for Alzheimer societies throughout Canada.
4. Why is dementia awareness important, and how should we as a society work towards increasing public awareness of dementia?
One of the most common misconceptions of dementia is that it is an inevitable part of aging. Rather, dementia is a progressive, chronic disease which affects over 50 million people throughout the globe, with somebody developing dementia every 3 seconds. By bringing awareness to the stigma and misconceptions that surround dementia globally, we can begin to effectively support those who are affected by dementia, as well as begin to advocate for real change.
As a society, there are several things we can do to help increase public awareness of dementia. One of the most simple and effective tactics is by having a conversation around dementia and educating ourselves in the process. Another way is to increase public awareness by getting involved in World Alzheimer’s Month each September, whether it’s through sharing a key message on social media or volunteering with your local Alzheimer’s association.
Public health campaigns will be vital going forward, to improve awareness and also to communicate key risk reduction messaging. All 194 WHO Member States have signed up to deliver at least one national awareness campaign as part of the Global action plan on dementia. However, much more is needed to help normalise the language around dementia, demystify and diffuse the fear so that people actively seek out help, advice, information and support.
5. How can interested individuals or groups support your organization and the amazing work you are doing?
ADI appreciates any support it receives, whether it big or small. Simply by signing up to receive our monthly newsletter will keep people up to date on developments globally, in research, care, rights and in national plan responses. We want to hear from individuals and groups that are making a difference and innovating around dementia. We can amplify and broadcast these stories to a global audience.
Joining one of our global or regional conferences is an excellent way to share experiences and to hear about the most up to date developments. The 34th International Conference of ADI in Singapore in March 2020 is the next global gathering of the ADI family.
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