Dear Talking Point members,
My name is Lilian and I am a PhD candidate at the University of Edinburgh. My research project is about Alzheimers and its impact on families.
I am writing to you because many of you are family members that live with, care for and love people with Alzheimer’s.
My overarching research question is: How do relatives live with the ambiguity and uncertainty of dementia
I am interested in learning about how families work together to care for someone affected by Alzheimer’s or dementia, and what kinds of challenges you face. I have a specific interest in the difficulties of caring for a relative with memory loss, when shared memories are a crucial part of family relations. I also wish to learn what you think about tests for Alzheimer’s. My project also aims to find out how relatives and carers describe the disease, and what matters most to them.
I began to pursue research in Alzheimer’s during my undergraduate degree and wrote my Honors Thesis on Alzheimer’s for my first degree. When I was 17, my grandfather was diagnosed with Alzheimer’s, and my family and I cared for him until he passed away. During and after this experience, I became interested in Alzheimer’s beyond my personal experience.
I would greatly appreciate any feedback from anyone who is a relative of someone with dementia, and/or caring for someone with dementia about their experiences. I feel that people who are actually in these positions have incredibly important knowledge about Alzheimer's/dementia, and I wish to learn.
Some questions I have are:
When did you, or your loved one learn about the dementia diagnosis? Did you go the doctor because your suspected? What was the experience like for you?
Did you, or your loved one do any sort of 'test' for Alzheimer's or dementia? If you do, what did you think of it?
How have things changed in your family since the dementia started? What's more challenging? Has anything become easier? Or stayed normal?
Are there certain things that make you feel connected? or disconnected? How do you spend time as a family?
Where do you find strength in this experience? Do you think you've learned anything from dementia?
Thank you for reading this, I appreciate your insight.
Lilian
PhD Candidate, University of Edinburgh
My name is Lilian and I am a PhD candidate at the University of Edinburgh. My research project is about Alzheimers and its impact on families.
I am writing to you because many of you are family members that live with, care for and love people with Alzheimer’s.
My overarching research question is: How do relatives live with the ambiguity and uncertainty of dementia
I am interested in learning about how families work together to care for someone affected by Alzheimer’s or dementia, and what kinds of challenges you face. I have a specific interest in the difficulties of caring for a relative with memory loss, when shared memories are a crucial part of family relations. I also wish to learn what you think about tests for Alzheimer’s. My project also aims to find out how relatives and carers describe the disease, and what matters most to them.
I began to pursue research in Alzheimer’s during my undergraduate degree and wrote my Honors Thesis on Alzheimer’s for my first degree. When I was 17, my grandfather was diagnosed with Alzheimer’s, and my family and I cared for him until he passed away. During and after this experience, I became interested in Alzheimer’s beyond my personal experience.
I would greatly appreciate any feedback from anyone who is a relative of someone with dementia, and/or caring for someone with dementia about their experiences. I feel that people who are actually in these positions have incredibly important knowledge about Alzheimer's/dementia, and I wish to learn.
Some questions I have are:
When did you, or your loved one learn about the dementia diagnosis? Did you go the doctor because your suspected? What was the experience like for you?
Did you, or your loved one do any sort of 'test' for Alzheimer's or dementia? If you do, what did you think of it?
How have things changed in your family since the dementia started? What's more challenging? Has anything become easier? Or stayed normal?
Are there certain things that make you feel connected? or disconnected? How do you spend time as a family?
Where do you find strength in this experience? Do you think you've learned anything from dementia?
Thank you for reading this, I appreciate your insight.
Lilian
PhD Candidate, University of Edinburgh
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