Introduction to Week 1
In this video Dr Susie Henley, Clinical Psychologist, introduces week 1 of The Many Faces of Dementia, focusing on familial Alzheimer's disease
Welcome to week one of the course. This week we’re looking at familial Alzheimer’s disease, known as fAD a rare condition in which a single faulty gene is passed down through a family and causes dementia often starting at a young age. What’s it like to live in a family that has this gene and how can research involving people with fAD transform our understanding of Alzheimer’s disease. Before we get started we’ll explain what dementia and Alzheimer’s disease are and why they’re important global issues.
We’ll introduce the less common forms of dementia that we’re covering in this course and explain why understanding these often under recognized forms is important in our efforts to better care and develop cures for people with all kinds of dementia. To learn about familial Alzheimer’s disease we will be following the story of Carol and her husband Stuart who played a critical role in the first discovery of a gene that causes the disease and we’ll hear from John Hardy and Martin Rossor world-renowned scientists who made this discovery.
When we realized that we should analyze families one at a time we immediately or fairly immediately realized that the amyloid gene was inherited with the disease in Carol’s family and then we sequenced the amyloid gene in the family and found a mutation and that was the first known cause of Alzheimer’s disease. The finding of genes causing fAD led to a new theory of how Alzheimer’s starts in the brain and development of new treatments that aim to slow or stop the disease rather than just alleviate symptoms. We’ll learn about a groundbreaking international trial to test these treatments from UK Chief Investigator Cath Mummery.
DIAN-TU trial is really exciting this is the first in the world study trying to prevent people developing Alzheimer’s. We also look at diagnosis prognosis and current treatments and the similarities and differences between this rare genetic form and more common forms of Alzheimer’s disease. From Carol’s husband Stuart we’ll learn about the changes brought about by living with Alzheimer’s as well as the additional challenges when living with this familial form. You can’t really think about the future because if you did you would you would miss the present. I need to each squeeze out of every moment of every day the best I can of the time I’ve got with Carol while she’s here.
We hope you’ll enjoy taking part in discussions this week and we look forward to hearing your thoughts about fAD and clinical trials.
Dr Susie Henley, a Clinical Psychologist at the Dementia Research Centre (UCL Institute of Neurology) describes what we’ll cover in Week 1, including:
- Interviews with Carol and her husband Stuart who played a critical role in the first discovery of a gene causing familial Alzheimer’s disease
- Interviews with world-renowned scientists John Hardy and Martin Rossor
- How genetic factors contribute to Alzheimer’s disease
- The groundbreaking DIAN-TU treatment trial
- Support for children who have a parent with Alzheimer’s disease
Dementia is a very wide topic and we all come to it with different knowledge and experience. There are people with all kinds of life experiences taking this course. Are there learners with any particular backgrounds that you hope to learn from?
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