On 23 May 2018, Alzheimer’s Disease International brought together government delegates, civil society, students and importantly, people living with dementia and carers, in the Palais des Nations in Geneva, for our official side-event to the 71st World Health Assembly (WHA71).
Mobilising Society: Inspiration for national responses to dementia was a particularly significant event for dementia advocacy and the advancement of dementia on the global agenda, as it was the only event at the WHA this year dedicated to highlighting dementia as a global health challenge. It also marked two important occasions: first year anniversary of WHO’s Global action plan on the public health to dementia 2017-2025, and of ADI’s new report: From plan to impact: Progress towards targets of the Global plan on dementia 2017-2025. Continue reading ““Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly”
Paola Barbarino, CEO, explains why stigma presents a major challenge for addressing dementia in sub-Saharan Africa – and how taking an elevator can lead to greater support.
During my recent trip to attend the 4th Sub-Saharan African Regional Conference of ADI in Nairobi, organised in partnership with Alzheimer’s Kenya, I stayed at a local hotel with several African members of ADI. During the conference we had heard and shared experiences about serious issues of stigma and denial surrounding dementia in the region and how difficult it was to persuade the governments to do anything. That said, the Kenyan government committed during the conference to promoting an action plan on dementia by mid-2018, thereby proving that if people get together they can act as a catalyst for good.
The team had just returned to the hotel after a very intense session. On the television in the hotel lobby, the BBC were breaking news of a new study which suggests there is a link between the loss of the sense of smell and possible development of Alzheimer’s disease. We all cheered as any step forward, no matter how small, really makes a difference in our community, forever hopeful for a solution. Continue reading “Elevator pitch: A short story about the needs and hopes of Africa”
Dementia is the name of a group of progressive diseases that affect cognition and other crucial functions of the brain. Alzheimer’s disease is the most common cause of dementia, followed by vascular dementia, dementia with Lewy bodies and Frontotemporal dementia (FTD).Age is the main risk factor; there is a change of 1 in 15 at the age of 65, increasing to 1 in 3 for those over 85.
As our world population rapidly ages, there are a growing number of people who develop dementia. Research showed that in 2015, there was one new case of dementia somewhere in the world every three seconds. This is four times as much than new cases of HIV/Aids. There is currently no cure for dementia.
The impact of the disease is huge. First of all on the individual, who may step by step lose the grip on his or her life. Then for the family, who are in most of the world the overwhelming majority of those who care for a person with dementia, and finally for society, that has to deal with growing group of people seriously in need for care and support. Continue reading “Why a Global Action Plan on dementia is so important”
By 2030 Cuba is predicted to have the highest proportion of older adults in any Latin American country. Today around 19% of the population is aged over 60, but in just 15 years’ time this will rise to 30%. Cuba is a middle income country, but has health indicators similar to those in high income countries, and a life expectancy at birth of 78 years.
As a result of the rapid aging of the Cuban population, it is estimated that the number of people living with dementia, currently standing at around 150,000, is expected to double by the year 2030. During the next 30 years, we expect there will be a tenfold increase in the demand for long-term care for people living with dementia.
Over the past 8 years, SCUAL have participated in a national program to assist people who are living with a disability, and to promote early diagnosis of dementia and risk reduction programmes. To date, more than 40,000 people over the age of 65 have taken part. The programme also helps to support families and training for health professionals. SCUAL collaborated to develop an intervention program called ‘Helping carers to care’, which provides basic education about dementia and specific training on managing behaviours.
SCUAL also participates in the work of the 10/66 Dementia Research Project, a network of over 100 active researchers from more than 30 low and middle income countries who are studying the prevalence and impact of dementia. In Cuba, more than 3,000 participants have been interviewed so far. SCUAL is now supporting a new project by the 10/66 team, to help understand changes in prevalence and incidence over a 10 year timeframe. The project also focuses on the social impact of dementia and how best to identify underlying risk factors and implement care packages.
The Cuban’s National Dementia Strategy has been developed by SCUAL in partnership with the Ministry of Public Health, working together with researchers from several fields and with families and caregivers of people living with dementia. The plan has recommended that the strategy focus on increasing awareness, developing support services, promoting early diagnosis and risk reduction, quality assessment and implementing good clinical practice guidelines. It also asserts that there should be an increase in the availability of specialists in primary healthcare and in investment into dementia research.
SCUAL undertakes a wide variety of activities to help improve awareness about dementia in Cuba, including an annual conference and a campaign for World Alzheimer’s Month and the World Alzheimer Report, including an annual Memory Walk on September 21, World Alzheimer’s Day.
In 2011, Cuba was also the venue of the Iberoamerican Congress on Alzheimer’s Disease, one of ADI’s regional meetings, where 500 attendances from Latin America, Spain and other countries came together to discuss how to improve the lives of people with dementia in the region.
In spite of the complexity of transportation and numerous flight changes, most of us managed to make our way to the regional meeting and much was achieved, including the amendment of the Regional Meeting Guidelines which will now be put to the ADI Board for approval. Member associations also renewed their commitment to use the ‘Strong Association Framework’ and volunteered to conduct a self-assessment and report of this at the 19th ADI Regional Conference in New Zealand next year. There was also continued support for approaching the Asia Pacific region in sub-regions (South Asia, East Asia, Southeast Asia and Oceania).
Once the conference began on the 19th November, the days were filled with eloquent speakers, abundant food and high quality entertainment in the evenings.
Kate Swaffer, Co-chair of Dementia Alliance International enlightened the audience on what dementia-friendly means to a person living with dementia. Kate was joined by Noriyo Washizu from Japan who told us about Uji, a dementia-friendly city, and Liyu Tang who talked about dementia-friendly stores and churches in Taiwan, where special prayers are offered to people affected by dementia on World Alzheimer’s Day. Meera Pattabiraman from India shared the news about the success of Dementia Guides in Cochin and the new Dementia Friends initiative across India. Jason Foo told the audience about the bottom up approach towards defining a dementia-friendly Singapore with various stakeholder groups, while DY Suharya shared the news that the Indonesian government has announced its support of making Jakarta an Elderly and Dementia friendly city. This passionate group was moderated by ADI Chair Glenn Rees who kicked off the session by explaining that dementia friendly communities have two different but complementary objectives:
To reduce stigma and raise awareness: the lived model
To empower people living with dementia: the right to respect and make decisions
We learnt a lot about the progress of the various countries in building dementia friendly communities, their cultural differences and how they are using innovative approaches. Looking around the room, I knew that I was already surrounded by an inspired audience.
Francis Wong, Regional Director, Asia Pacific Regional Office of ADI
The 18th Asia Pacific Regional Conference of Alzheimer’s Disease International and 37th Annual Convention of the Philippine Neurological Association was jointly held with the theme ‘From Lab to Home: Alzheimer’s Disease in the 21st Century’. Delegates from across the region met in Manila, which produced a unique consolidation of ideas with one common thread, the desire to move forward.
My personal experience of the conference was exhilarating and interesting. I could identify with some situations in other Asian countries, particularly challenges relating to cultural differences and social stigma, which remains a big problem. On a more positive note, I was pleased to meet members of the ADI family, and catch up with some who I had already met at other conferences. These events are vital to exchange ideas, plan for the future and they provide crucial opportunities to share best practice and learn from one another. I have lots of ideas to take back to Mumbai.
I was delighted when one of the plenary speakers mentioned my poster, ‘Alternative Therapies with Special Emphasis on Yoga’ and I was also pleased to do a presentation on the Dementia India Report (2010). We have a vision of making India dementia friendly, and although we are still a long way off, I pray that in time we can make this dream a reality.
The conference programme featured a range of topics, balancing medical and research based discussions with sessions on holistic and alternative therapies. I learnt a lot in these workshops, as I’m sure did many of my colleagues. Through a no holds barred approach, many of the sessions saw speakers express their personal experiences of dementia unconditionally and lovingly. After all, what does ‘dementia-friendly’ actually mean? Is it not love, compassion and empathy? I think Florence Nightingale would be truly happy to know so many people had come together at this conference. How sweet this music sounds.
I’d like to thank Corrie Martinez from the Alzheimer’s Disease Association of the Philippines and Francis Wong, Regional Director for ADI, who did a great job looking after everyone. And I cannot sign off with a special mention of the Fellowship Dinner, with its colourful ambience and bamboo dancing!
All good things must come to an end. With a great balance for both body and mind (my weakness for yoga!) and having absorbed lots of new information and ideas, I returned home with great experiences and fond memories. I can’t wait for the next conference in Budapest.
We’re pleased to launch our brand new blog, a space for news, features, interviews and lots more. We’ll be featuring guest posts from people affected by dementia all over the world and from our network of Alzheimer associations – from Argentina to Zimbabwe.
Across the world, there is a growing awareness about dementia, but stigma and misinformation remain significant barriers to making the world a better place for people living with the disease.
2 out of 3 people globally believe there is little or no understanding of dementia in their countries, so it’s essential we work together to educate ourselves and our communities to dispel lingering myths about dementia. We hope that the posts featured on this blog can go some way to helping challenge this stigma and get people talking about dementia.
Our first post will be coming up very shortly, but in the meantime, check out this video which explores the global impact of dementia.