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/