Welcome to the course
Welcome to the course. Over the next four weeks we hope to give you a unique insight into dementia through the stories, symptoms and science behind four less common diagnoses.
Each week you’ll hear from people affected by dementia and leading experts to learn about these less common forms of dementia from a personal and clinical perspective. You’ll also learn about current research projects taking place at UCL and we’ll explain how understanding these lesser-known forms can provide a useful perspective on more common types of dementia.
Four weeks, four topics
Each week will explore a different form of dementia, and will start with a short introduction from one of the experts interviewed about the topic.
This week we’ll explore the challenges that face families affected by familial Alzheimer’s disease, where the condition runs in the family and often starts at a young age. You’ll hear more in the introduction from Dr Susie Henley in the next step.
In Week 2 we’ll investigate the particular challenges for diagnosis and care for people with behavioural variant frontotemporal dementia.
Week 3 will cover dementia with Lewy bodies, where hallucinations and fluctuations in symptoms over time are particularly common.
Finally in Week 4 we’ll look at posterior cortical atrophy in which the brain’s processing of visual information is impaired.
We recognise that different people are ready to hear different information about dementia at different times, and in a few places in the course we discuss what can happen in the later and end stages of dementia. We’ve tried to mark these steps ‘sensitive’ so that you may skip these steps if you prefer.
Learning from each other
Already in the welcome discussion we’ve seen a wealth of knowledge and experience amongst the learners signed up for this course. We hope that the comments section beside each step will be a valuable place for you to share your experience and ask and answer questions, so that we learn from each other as well as from the content in the course.
Where to find help
Please note that the course material should not be used as a source of individual medical advice or as a means of making individual medical decisions. Any medical decisions should be taken in discussion with an appropriate health care professional. The educators and contributors to this course cannot offer medical advice and any requests for advice will unfortunately not be answered.
If you have concerns or are looking for care and support, we recommend that you discuss this with your GP. The following organisations in the UK may also be helpful:
• Alzheimer’s Society helpline
• Dementia UK helpline
• For information about research: Alzheimer’s Research UK infoline
• For information about six rarer forms of dementia (fAD, FTD, fFTD, PPA, PCA, DLB): Rare Dementia Support
We hope you find the course interesting and informative, and look forward to introducing you to all the experts on the course, and the people affected by dementia who are sharing their experience.
Research into dementia knowledge and attitudes
We are inviting everyone working through this course to complete a series of optional surveys. The surveys form part of a UCL research study examining the effects of The Many Faces of Dementia on dementia knowledge and attitudes. Increasing knowledge and changing attitudes to dementia has been identified by Alzheimer’s Disease International as very important in improving dementia care globally. Your feedback will help us to find out whether this course increases knowledge and changes attitudes to rarer dementias and can thus contribute to global dementia care.
The study will last for four months. We will ask you to complete three anonymous surveys: before you begin the course, as you complete the course, and two months after course completion. Each of these three questionnaires will take approximately 15 minute to complete. This pre survey must be completed before you start the course. On this basis it will close on 2nd February 2020.
Your response will not be linked to your FutureLearn identity or your course activity. Summarised findings will contribute to the broader literature and likely be published in an academic journal. All data collected during this study, will be stored and handled according to the UCL Research Participant Privacy Notice and researchers will work with anonymised datasets.
Please note that this is an independent research study carried out by UCL and your participation is subject to the University’s own policies and terms. FutureLearn takes no responsibility for the contents or the consequences of your participation in this study. Your participation in the research has no effect on your course progress, marks or FutureLearn profile.
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