“Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly

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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”

Elevator pitch: A short story about the needs and hopes of Africa

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.

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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”

A good decade

Rebekah Churchyard, 27, speaks about her relationship with her Grandfather living with dementia, and her passion for new research as a member of the World Young Leaders in Dementia (WYLD).

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Rebekah with her grandfather in Ontario, Canada.

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”

Support in Oman

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”

Finding strength through support groups

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Alzheimer’s Association of Israel, or EMDA, is a non-profit organization founded by family members of people living with dementia, which aims to support these families. One of the services offered are caregiver support groups. Through the groups, carers can access information on the disease and how to deal with the health and social care systems.

The group sessions also provide an opportunity for caregivers to share their innermost thoughts and emotions in a supporting and understanding setting, receiving encouragement and drawing strength from one another. EMDA currently operates around 50 support groups throughout Israel that meet once a month, led by social workers or trained volunteers.

I attend meetings in Petah-Tikva. My father was diagnosed with dementia around three years ago. When it started, before his medication was balanced, I felt lost. I was looking for answers – how do I cope with this? What should I say? How should I respond? How does this affect my personal and family life?

I was looking for answers online and that’s when I came across EMDA’s support groups, who invited me to a meeting. It felt like I got to the right place at the right time. I learned how to accept this situation, how to take in any moment I had with my father, even when some moments were very difficult. There were also times, unfortunately only a few, when I could say: that was fun. I cherish these moments.

My father passed away 5 months ago. Yesterday I attended another support group meeting. I came, for the second time since my father’s passing, in order to feel a sense of closure. The first time was right after he passed away and my mother and youngest son came with me. I wanted them to share their feelings and to meet the people who were there with me for almost three years.

I first felt closure when my mother, overwhelmed with emotions, shared her point of view as a spouse of someone with dementia. My son, 18 years-old, had a strong bond with his grandfather. Despite my father’s disease and the deterioration in his condition in the last years, their relationship hasn’t ceased.

Yesterday, I personally felt a sense of closure and thanked the leaders of the support group who were there for me during this difficult time of my life. I wish to thank the leaders of the support group of the group in Petah-Tikva, especially Ruthie and Ilana, who were always there for me.


By Anat Aviv

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Contact your national Alzheimer association for details of support groups available in your area.

Melissa’s story

Melissa Chan

I was about 14 when my dad was diagnosed with early onset Alzheimer’s disease. The doctors attributed it to the belated emergence of effects from an accident he had when he was younger. For the next 10 years, I lived everyday seeing my father fight the disease and the family’s struggle to redefine normalcy, until he passed away in 2014.

I have a lot of respect for my mum. Raising three kids, holding down a job and being a caregiver was hard work. The disease really affected the entire family and it can suck you dry mentally, physically, emotionally and financially.

The illness was new to all of us and even my mum had a hard time trying to understand it, so it was difficult for her to educate us on it. As kids, 10 years ago, we had to get through understanding the illness on our own as it progressed. We weren’t taught this in school and there wasn’t anyone that came knocking on our doors to educate us. From understanding the diagnosis to coming to terms with it, learning on a daily basis what the disease does and what it robs from a person, balancing the caregiving with the urgent needs of the family, and simply experiencing the heartache of missing a person when he is right in front of you – it’s a lot to handle.

As we journeyed through my father’s battle with the disease, I could tell that my dad was struggling with a lot of confusion in the initial stages. My father used to be the navigator and driver for the family but one day he was caught in the crossroads and didn’t know which road to take, although it was a familiar route. Seeing that confusion and anger within him pained me. That was when I realised that he couldn’t do the things he could before.

He was also always fleeting between two states of mind, one of confusion and the other of clarity. There were times when I could tell that he knew he was losing his memory but was not able to do anything about it. And then there were times that he forgot that he was losing his memory and was thrown into confusion, lost and angry.

Losing him has made me think about the millions of other people who are affected by Alzheimer’s, who may not know what to do with their family members who have it; or feel helpless and hopeless in the long months and years of caring for someone who is slowly slipping away.

I wanted to draw from my experience to do something for him to live on in his memory. My faint memories of him were from a younger age and I never really got the chance to know him better as a person and as a father, before we had to finally let him go. Project We Forgot is partially a tribute to my father.

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It’s true that we can’t control this illness or fight against time, as much as we want to. But we don’t have to let it get the better of us. This is why I’ve been inspired to create this community to tackle the need for greater awareness and support – one that offers a younger and fresher take on the disease while focusing on the digital generation, to build a community of support and to let people know what Alzheimer’s truly is by humanising the disease.

As I build this, I often picture myself as a teen and imagine how much of a difference having such a community of support would have helped me and my siblings when we were going through my dad’s illness. I hope that this space will allow caregivers to find their place to identify and connect with other individuals who might understand what they are going through. And especially to the younger ones, for them to know that they are not alone, to know that it is ok to speak out about it, and to use their journey to inspire others.


By Melissa Chan, Founder of Project We Forgot

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