In last year’s World Alzheimer’s Report, ADI looked at how dementia-related stigma is defined and how we can better understand it through its relation to power, stereotypes, prejudice and discrimination. Within the report, some of the expert essays and case studies examined this further by shedding light on the complexity of stigma.
Ruth Stone, Global Communications and Digital Manager, and Sue Baker, Director of Time to Change Global, contributed the case study, ‘Challenging stigma in mental health: What we’ve learnt over 10 years’. The piece looks at progress and continuing barriers for what is so well described as “the work of a generation”.
Ending mental health stigma is the work of a generation. I think that’s the most important thing we’ve learnt since starting Time to Change more than 10 years ago.
Stigma is deeply ingrained, through cultural norms, families, workplace culture, the media and even the words we speak. It is present at almost every level of society, which means our work takes time, perseverance, and a broad, flexible approach.
On 12 November 2018, ADI facilitated a seminar on Islamic values in dementia care at the World Innovation Summit for Health (WISH) 2018 in Doha, Qatar. ADI’s Asia Pacific Regional Director DY Suharya invited geriatrician Dr Heriawan and Amalia Fonk-Utomo, Chairperson for Stichting Alzheimer Indonesia Nederland, to present. It was a wonderful opportunity for us to spread global best practice in dementia care with a local relevance. In this blog, Dr Heriawan and Amalia share their thoughts on hosting this insightful seminar.
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”
When you’re fourteen years old, there’s a lot going on. Dealing with fluctuating hormones, emerging personalities and high school doesn’t leave time for much else. I was fourteen in 2003 when my Grandma first told us that my Grandpa was diagnosed with ‘semantic dementia’. She carefully explained that this is a special type of cognitive disorder where he would gradually lose the ability to do things like plan, make decisions and talk.
My Grandpa was a well-known teacher in Fergus, Ontario, Canada. His career path was one of the two stories he would always tell; “Did you know I was a teacher? It’s funny because I never wanted to be a teacher…”, he would say.
To generate extra income for their retirement, my grandparents operated a Christmas Tree Farm. They become well known and loved community figures. Grandpa would spend his days on his tractor in the fields, pruning and baling trees. They had planned to travel in their retirement as a reward for decades of hard work. We knew things would change the day he put water where oil is supposed to go in his chainsaw. It was scary for my Grandma.
My Grandma did a wonderful job accessing support and resources available to her, especially from the Waterloo-Wellington Alzheimer’s Society. My Grandpa did not enjoy attending Day Programs and Grandma hired personal support workers or asked family and friends to come stay with him. He would regularly greet guests and say with a sigh, “You know my brain’s no good anymore”. At first, I responded with a dismissive yet reassuring “I still love you”.Continue reading “A good decade”
My own personal experience of dementia began when my mother seemed to forget where she had put her things. Initially, we as a family assumed that this was simply a normal part of ageing, but gradually she started forgetting where she was and could not recognize the people around her, often repeating questions that we had already answered.
It was at this stage we realized that this was not a normal part of ageing, so we took her to various doctors for consultations, and she was diagnosed with Alzheimer’s disease. Dementia changed her personality completely, and we didn’t know what to do or how best to support her. It was and still is hard witnessing her decline. I would spend the whole day watching her walk from one room to another, not knowing what she wanted.
She didn’t want people to do things for her because throughout her life, she was someone who was highly organized both in her personal and professional life. She trained as a teacher, becoming a Headmistress and ﬁnally an Inspector. Her personal life was one of reﬁnement in her duties to her family and society. She was softly spoken, articulate, forgiving, and always ﬁnding good in others, seldom criticizing people; instead often invoking Allah to guide that individual. Continue reading “Support in Oman”