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.
- Experiences of Max Wallack, who assumed a caregiver role for his grandmother when still in his pre-teens.
- Bob deMarco’s experiences as a caregiver.
- Speech by famous fantasy author, Terry Pratchett, regarding his diagnosis and how he continues to write bestsellers.
- Letter from US President Ronald Reagan, regarding his Alzheimer’s diagnosis.
More links where persons with dementia have shared their experiences and thoughts are available on our resources page, at Informational websites on dementia / caregiving->Voices of dementia patients. These help us understand and appreciate what persons with dementia undergo.
Alzheimer’s Association (USA) has a page that lists links to personal stories of dementia patients, caregivers, and Alzheimer’s advocates and champions. Read these personal stories on alz.org .
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 Nancy’s story here , a wife describes how people around her, even the doctor, did not realize that her husband had dementia. In Cara’s story , a daughter describes how she regrets that she was unable to tell her mother that she loved her. And in Pete’s story , a patient describes his memory losses and how they affect his emotions.
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?
Bob de Marco maintains an excellent resource for Alzheimer’s at Alzheimer’s Reading Room . He was also a caregiver for his mother, who had Alzheimer’s Disease, and his blog includes a number of entries where he shares his own experiences, experiments and thoughts as a caregiver.
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 continued to write, and wrote some bestsellers even after 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 Sir Pratchett’s speech . Sir Terry Pratchett continued to live an active life as a writer, writing books, and winning awards, coping with his diminishing function through multiple means, till he finally passed away in March 2015. Visit Terry Pratchett’s site for more, including some entries about his experiences with his Alzheimer’s.
The letter can be read here: President Ronald Reagan’s Letter to America Announcing he had Alzheimer’s Disease , November 5, 1994
Page/ post last updated on: February 4, 2017