“Campaigning for change” by Alzheimer’s University and Alzheimer’s Disease International
Venue: Geneva, Switzerland
Period: 23 June 2014 to 26 June 2014
Host: Alzheimer’s University and ADI (Alzheimer’s Disease International)
This 3-day Global workshop that took place between 23rd June 2014 and 26th June 2014, in Geneva, Switzerlandwas not only well attended by 31 participants from 20 different countries in South America (Argentina, Mexico), Asia Pacific (India, Indonesia, Mauritius, Lebanon) and Europe (Luxembourg, Belgium, Monaco, Cyprus, Malta, Greece, Italy, Norway, Scotland, Romania, Croatia, Slovenia, Bulgaria, Ireland), but it also turned out to be very vociferously interactive platform where all voiced their experiences and opinions
The purpose of the program was two-fold; the first to encourage learning from participating countries’ experiences of handling various aspects of Alzheimer’s disease and its management. And the second was to provide inputs and plans of action through a facilitated process of discussion, debate and action supported by presentations, reading materials and guest speakers. Thereby, allowing us to have a focus on what goals to chart out for the National strategy/ plan and also the methodology to implement it. At the end of this Forum, each delegate was allowed to express and ventilate whatever had been learnt during the various sessions conducted.
The Forum discussed the possibilities of how local chapters / sub-regional associations and their national associations could work together to create a strategy, which could be formalized into a plan to be implemented at a national level, by making national and state governments to prioritize AD and other dementias in the public health policy, disseminate awareness and training through government channels and arms, incorporate AD and other dementias in the public health training agenda, etc. It also took into account how a common platform could be established so as to nurture alliances, create pockets (socially and geographically) whereby and through whom the National Agenda can be implemented. Use of options that include mass media was discussed, too. Primarily it was agreed upon that AD must be given high priority on the National Agenda, be it in departments of health, social welfare, education, human resources (and manpower training) and most importantly, finance for budget allocation,without which it is almost impossible to implement any plan or strategy. In addition to government funding, in India, Corporate Social Responsibility driven investments is now mandatory for all Corporate Houses, all of who are required by law to invest a portion of their net profits in to social programs of the organization’s choice, and any accruing profits are to be ploughed back in to the social program.
Dementia / AD is a co-morbidityin many Non Communicable Diseases(NCDs) and hence there is anurgent need to form global NCD alliance (Non-communicable Disease Alliance), with international associations that include World Heart Federation, International Diabetes Association, Lung and Tuberculosis Association, Anti-Tobacco groups among others.
The WHO research on the co-relation between tobacco use and AD (or as a matter of other dementias) establishes a ‘connect’ between smoking and AD. It is believed that there is a 14% increased risk to AD / Vascular Dementia. This most certainly necessitates AD associations all over the world to share a place on the platform that voices the anti-tobacco lobby.
The Forum succeeded in meeting its objectives and ended with significant take-aways for all the participants. Each of the participants / teams was expected to work on a mini “National Action Plan” focused on one or two aspects of Advocacy central to that country’s national dementia agenda, which was presented to the group and discussed at length. This plan would also have to be implemented by the country team in its home association. The progress would be reviewed over the next 6-12 month
All delegates were given an opportunity to share their thoughts at the end of the programme.
Some of the key take-aways from this program have been:
1. Collaboration with other associations and or advocacy groups, where shared morbidity exists.
2. Bring on-board pharma industry, drug research and technology companies into the strategy plan
3. Jointly create action plan with common parameters at local, regional and national levels and rigorously implement.
4. Actively include and engage with local political leadership continuously.
5. The importance of data in advocacy, especially when meeting with policy makers
6. Work towards expanding volunteer base, screen and filter for leadership at all times
7. Create clear goals for the short and mid-term, assign responsibilities
8. Create awareness channels such as Alzheimer’s Café (Chai-pe-Charcha on Dementia) at major Cafes, libraries, landmark buildings, hotels, etc.
9. Inclusiveness for AD/Dementia community by removing social stigma attached to the disease.
10. Use social media (twitter, Facebook, Instagram, Google+), Radio, TV and publications extensively. Look for alliances with people affected directly or indirectly by this disease.