Dr Jennifer Bute: A Journey of Hope

On World Alzheimer’s Day 2018, ADI released the World Alzheimer Report 2018: The state of the art of dementia research: New frontiers, addressing key questions in dementia research, relating to: basic science, diagnosis, drug discovery, risk reduction, epidemiology and care. Dr Jennifer Bute, a former General Practitioner (GP) who was diagnosed with dementia, is one of the contributors to this year’s report. Here is her story in her own words. Continue reading “Dr Jennifer Bute: A Journey of Hope”

Howard Gordon shares his experiences of early onset dementia and offers advice during World Alzheimer’s Month

Howard Gordon, member of Dementia Alliance International, Action Group

I started to notice changes around the beginning of 2014. I was working at the local Hospital and I began to forget regular tasks. I would go to the clinic room or kitchen and forget what I went there for. Knowing the time, day and date became an issue and I was getting lost around the Hospital. I began to get lost in other familiar places and would cross roads without looking or noticing until I had got to the other side.

Although I had received Dementia training and experience caring for people living with Dementia for 15 years, I put it down to turning 50 and it wasn’t until I saw a television programme about Chris Roberts, who himself was diagnosed with dementia at 50, that alarm bells rang and I went to my GP (general doctor). Continue reading “Howard Gordon shares his experiences of early onset dementia and offers advice during World Alzheimer’s Month”

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

side-event_may-18_34-e1528198002711.jpg

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.

Paola_headshot

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”

Why a Global Action Plan on dementia is so important

Originally published 19 December on the Biomed Central Network.

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”

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).

24-carer-story-1
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”