The first-hand experiences of dementia diagnosis

People living with dementia and carers from all over the world have shared their experience of the journey to diagnosis for this year's World Alzheimer's Month campaign.

In collaboration with ADI Alzheimer and dementia associations and supported by Dementia Alliance International (DAI), people living with dementia and carers from all around the world have recorded and shared their experience of receiving a dementia diagnosis, for this year’s World Alzheimer’s Month.
In this series of videos, which we will be sharing acrosss our Twitter and Facebook channel throughout September, similar themes occur: good practice and what worked well, what should have been done better, the need for better information and signposting at the time of diagnosis, and the importance of follow up.

There are two things I would recommend when doctors are diagnosing. One is to give the patient hope. A simple comment like “it is possible to live a meaningful life for some time to come” and encouraging us to be all we can be, despite coming challenges. The other is a referral to the Alzheimer’s Society. Whether you know it or not medical community, the Society takes a huge load off your shoulders by proactively answering questions you are often inundated with. – Roger Marple (Canada)

This year’s campaign, ‘Know Dementia, Know Alzheimer’s‘, aims to shine a light on the warning signs of dementia and the importance of a timely diagnosis. The World Alzheimer’s Report 2021, ‘Journey through the diagnosis of Dementia‘, will be on the same topic and raises some important and challenging questions for healthcare systems, governments, policy makers, care managers and researchers, including how the system can, and must, be improved. 

However, improving the diagnosis process is not something which can happen without the voice and involvement of people living with dementia and their carers.

To that end, we have encouraged people to share videos of their experience of the journey to a diagnosis,  revealing how they felt when they first received a diagnosis, what their healthcare professional did well, what they could have done better, their frustrations with the process, what could have been done differently and if appropriate at the end of each testimony, the importance of receiving a diagnosis to begin planning and receive support.

Following the call to share their stories, people living with dementia or their carers responded in phenomenal numbers from all areas of the globe, each one documenting the lived experience of a diagnosis from the perspective of the individual. The videos will be showcased on social media during World Alzheimer’s Month, as well as feature prominently in the World Alzheimer Report, in the hope that these experiences can help to raise awareness, encourage anyone concerned to seek more information, advice and support and ultimately, improve the experience of receiving a diagnosis for all.

ADI would like to extend our warmest gratitude to all those people who contributed to or aided in the collection of these valuable testimonies.

Watch the series of videos

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