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).

Diagnosis and support

I saw my GP who requested blood tests and when I went back a week later she did some cognitive testing and told me that she was referring me to Neurology as I had probable Alzheimer’s.

I saw the Neurologist 3 months later and after doing additional cognitive testing she agreed with the GP and over the next 6 months I had more blood tests, scans and Neuropsychological testing.

In March 2017, I was given the diagnosis of Early Onset Alzheimer’s and Frontotemporal Disease followed by two leaflets about Dementia, and some information about research. I was told I could no longer drive and given the advice to make my will and Power of Attorney.

It was the beginning of what Kate Swaffer, CEO and co-founder of Dementia Alliance International (DAI) describes as “Prescribed Disengagement“. To be fair to my Neurologist she was having to diagnose patients on her own due to funding cuts.

Since my diagnosis, I have had no support or services and I do not qualify for benefits because “I don’t look like I have Dementia”.

I now know that these issues contravene my rights under the United Nations Conventions and national discrimination law.

Some advice

Don’t sit at home like I did. It wasn’t until I attended the course “A Good Life with Dementia” that I began to live my life with Dementia.

With people like myself being diagnosed at an earlier age, you can continue to live your life after your diagnosis, within the reducing limits of your diagnosis.

The single most important thing that healthcare professionals can do for a person diagnosed with Dementia and their care-partner is to enable them. This means putting them in touch with post-diagnosis support, services, rehabilitation, research participation and benefits. These services, unfortunately, are not available in every country. I firmly believe that these things enable people diagnosed with Dementia to slow the progress of the disease. I therefore support Alzheimer Disease International’ (ADI)’s call to increase funding for research in: basic science, care improvements, prevention and risk reduction, drug development and public health.

September is World Alzheimer’s Month. For me, this is a time to raise awareness and make people aware that you can live well with dementia. You don’t have to accept the “Prescribed Disengagement” so often pushed by healthcare professionals.

World Alzheimer Report 2018

When I started doing research, it got me out of the house and engaging with others, you could see it as an activity. I have taken part in about 12 Research Studies this year and I have never been coerced into taking part.

Research doesn’t just involve taking tablets or injections, I have done research about signs, post-diagnosis support, social media and many other non-medical studies.

For me research is an important legacy that I can leave behind for my children, grandchildren and those that follow them.

I hope that ADI’s World Alzheimer Report will help to dispel some of the misconceptions surrounding research, and increase attention and funding of dementia globally.

About ADI

Alzheimer’s Disease International (ADI) is the international federation of Alzheimer associations throughout the world. Each of our 94 members is a non-profit Alzheimer association supporting people with dementia and their families. ADI’s mission is to strengthen and support Alzheimer associations, to raise awareness about dementia worldwide, to make dementia a global health priority, to empower people with dementia and their care partners, and to increase investment in dementia research.

Find out more at: https://www.alz.co.uk/

About DAI

Dementia Alliance International (DAI) is a collaboration of like-minded individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia.

Find out more at: https://www.dementiaallianceinternational.org/

About World Alzheimer’s Month

World Alzheimer’s Month is the international campaign by Alzheimer’s Disease International (ADI) every September to raise awareness and challenge the stigma that surrounds dementia. World Alzheimer’s Month was launched in 2012. World Alzheimer’s Day is on 21 September each year.

All over the world people are helping spread these messages through thousands of activities. Join the World Alzheimer’s Month campaign by using the hashtags #WorldAlzMonth and #Every3seconds and visiting https://www.worldalzmonth.org/ to get involved.

About the World Alzheimer’s Report 2018

ADI’s report, ‘The State of the art of dementia research: New frontiers’, takes a novel approach, focusing on what the leading lights in dementia research perceive to be the biggest areas of hope and difficulties in dementia research. ADI commissioned a broadcast journalist Christina Patterson to interview 21 leading researchers from nine countries and write the report.

Read the report at: www.alz.co.uk/worldreport2018.

Read Howard Gordon’s blog series at: https://whenthefoglifts.blog/

“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”

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).

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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”

Alzheimer community between disappointment and hope regarding drug development at CTAD conference 2016

clinical-1Almost 50 million people worldwide now have dementia, and it is estimated that 60-70% of them are living with Alzheimer’s disease. There have been no new drugs approved for the treatment of Alzheimer’s since 2003 and the community of people with dementia and their families, researchers, clinicians and Alzheimer associations globally are eagerly looking for some good news. The International Congress on Clinical Trials for Alzheimer’s Disease (CTAD) is always a good place to get an overview of what is in the pipeline and the 9th CTAD took place last week in the city of San Diego in South California, USA.

There are a number of possible new treatments being developed for which people have high expectations. Eli Lilly and Company reported two weeks ago that the results in a second phase III trial of solanezumab were negative. Lilly used the conference to present the data of the study in more detail and this was followed by a panel discussion between experts.

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Results of the phase III trial of Solanezumab announced at the 9th CTAD Congress in 2016 showed limited effect when measured against a placebo.

Data from the study showed that participants who used the medication showed a slight improvement on a number of measures compared to those that received a placebo, but the difference was not big enough to be significant. That means that the result of the study was negative and Lilly will not put solanezumab forward for approval.

The mood at the conference was of high disappointment, but at the same time not giving up for the future.

Lilly deserved credit from the audience for the sober and honest way the data was presented. The scientific community will now further debate what these results indicate for the directions to take the search  for a cure for dementia including Alzheimer’s Disease. The mood at the conference was of disappointment, but at the same time of not giving up for the future.

However, there was some more positive news as well … Continue reading “Alzheimer community between disappointment and hope regarding drug development at CTAD conference 2016”