Alzheimer’s: A Journey of Caring

Guest blog by Marc Wortmann, Executive Director, Alzheimer’s Disease International

World Alzheimer’s Day started 21 September 1994 in collaboration with the World Health Organization. The day’s purpose is to raise awareness about Alzheimer’s disease and other dementias. The decision to extend into the full month was made at the request of Alzheimer associations worldwide to enable them to extend the reach of their awareness programmes. As a result, World Alzheimer’s Month continues to unite opinion leaders, people with dementia as well as care and medical professionals around the world.

Having a globally coordinated awareness Month and Day sends a strong message to governments and policy makers, alerting them of the fact that dementia is a serious health issue which will have huge implications on services and health systems around the world as the world’s population grows older. In addition, by focusing on a different message each year, the month can be used to educate and challenge people’s misconceptions about dementia. This year, the theme was ‘A journey of caring’, to tie in with our World Alzheimer Report 2013, which looked at the issue of long-term care.

Alzheimer’s Disease International as the global umbrella of 79 Alzheimer associations coordinates the campaign by providing the theme and materials as a framework for its member organizations, alongside on-going support and advice. Every country is free to conduct their own campaign and most activities are organised at the local level, we estimate that there are around 2,000 events worldwide every year.

Often member associations will incorporate the themes of the annual World Alzheimer Report into their awareness raising programs, which is launched around the 21September each year. Since 2009, ADI has been publishing annual studies in collaboration with King’s College London and ADI’s 10/66 Research Group. Past topics have studied the prevalence, stigma and economic impact of dementia. This year in collaboration with Bupa, the report looked into the issue of long-term care and found that by 2050, the amount of older adults requiring long term care will nearly treble.

ADI launched this year’s World Alzheimer Report with 3 Roundtable events in 3 different continents; Washington DC, London and Beijing. Invited speakers were comprised of experts in all areas, from Alzheimer’s charities to care providers and dementia campaigners. By meeting together, experts were able to offer their opinions on the current climate of care and offer their suggestions and predictions for the future.

At its heart, World Alzheimer’s Month exist advocate for dementia at a grassroots level, through the campaigning and hard work of ADI’s member associations. Each year thousands of activities are conducted, raising awareness and funds for people dementia, Memory Walks and Alzheimer’s Cafes are popular ways to do this. This year, Lebanon launched their social media campaign #IRemember, which encouraged people to share memories of Alzheimer’s on Twitter, each use of the hashtag resulted in a one dollar donation to the association. Another association, Alzheimer Indonesia, organised a concert in Jakarta as well as a talk show which answered questions related to dementia, while the Greek Association of AD and Related Disorders held a photography exhibition held in a national archaeological monument. Alzheimer Netherlands worked with a documentary maker on a 2-tier TV-programme that shows the limitations of living with dementia, but also the good things that can still be done. This was broadcasted within a whole week of media attention on radio and TV.

Many of ADI’s member associations use World Alzheimer’s Month as a timeframe to launch long-term programs. September is also used as a means to advocate for the dementia cause on a more political level by encouraging governments to create National Dementia Plans. Iran Alzheimer Association (IAA) has reported this month that they have signed a two-year Memorandum of Understanding with the Iran’s Ministry of Health and Medical Education. In Mexico, the Federación Mexicana de Alzheimer has also revealed they have prepared a letter of intent to develop an action plan on dementia to be presented in May next year.

September is a time of both action and reflection for the dementia cause. 79 member associations work tirelessly and often for free, planning events weeks and even months in advance with the aim of raising awareness of dementia and communicating the need for governments to respond appropriately to this crisis. Each year, more and more countries are participating in World Alzheimer’s Month events and dementia continues to receive more media coverage each year as it grows and the number of daily visitors to our website greatly increases on 21 September with the launch of the World Alzheimer Report, which often makes national and international press. Apart from our member organisations, others use the momentum as well. In Switzerland this year “I Am Care” was launched, the first web-based comprehensive caregiving platform for Alzheimer’s and dementia.

Concurrently, World Alzheimer’s Month is not only a busy time for me personally, with lots of events and media interviews, but also a time of quiet reflection and recollection for the millions of people worldwide affected by dementia. ADI hopes that the work of its members during September can go some way to positively helping to shape the future of Alzheimer’s care and knowledge.

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