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Selected voices from the rest of the world

A selection of patient and caregiver voices from other countries is offered here, so that we can experience both the universality of our situation, and the diversities because of cultures and support systems, which vary across countries.

Personal stories of many patients, caregivers, and dementia advocates

Alzheimer’s Association (USA) has a page that lists links to personal stories of dementia patients, caregivers, and Alzheimer’s advocates and champions. Click here to read these personal stories.

For example, in this story, a wife describes her husband’s dementia (early onset, at the age of 55) and her struggles to cope with it and support him through his bewilderment.  In this story here, a wife describes how people around her, even the doctor, did not realize that her husband had dementia.  In this story, a daughter describes how she regrets that she was unable to tell her mother that she loved her. And here, a patient describes his memory losses and how they affect his emotions.

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Experiences of Max Wallack, who assumed a caregiver role for his grandmother when still in his pre-teens

Max Wallack was six years old when his grandmother started slipping into dementia. Over the years, he naturally assumed a caregiver role. Now he blogs about his experiences, and also works to raise funds and spread awareness about Alzheimer’s and caregiving.

Read, for example, his blog entries about being a child caregiver: What is it like for a child to be an Alzheimer’s caregiver?  and Answers to Questions On Being a Young Alzheimer’s Caregiver and this entry on how one assumes a caregiver role: I Am Still the ONE

 Max describes challenges faced by caregivers (including the fluctuations in his grandmother’s behavior) here: Alzheimer’s Disease Patients Can Deceive Outsiders with Their Behavior and here: Was Great Grams an Escapist?

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Speech by famous fantasy author, Terry Pratchett, regarding his diagnosis and how he continues to write bestsellers

Sir Terry Pratchett, famous author of the Discworld series, was diagnosed with a rare form of Alzheimer’s at the age of 59 (early-onset). He continues to write, and has written two bestsellers since the diagnosis. Read the speech Terry made to the Alzheimer’s Research Trust Conference in the UK in 2008, where he donated $1 million to aid Alzheimer’s research: Terry Pratchett’s Alzheimer’s Speech in Full or see the video of the speech here. Visit his site for updates on what he continues to do.

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Letter from US President Ronald Reagan, regarding his Alzheimer’s diagnosis

The letter can be read here: President Ronald Reagan’s Letter to America Announcing he had Alzheimer’s Disease , November 5, 1994

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