On Thursday, January 15, 2015, the Ann W. Caldwell President’s Lecture featured Greg O’Brien, a patient with early-onset Alzheimer’s disease and his team of family and clinicians. After describing their perspective on caring for someone with dementia, the panel answered questions from the audience of second-year graduate students.
The video captures the poignant, often funny, and sometimes sorrowful conversation. Because time did not allow the moderator to pose all the student questions, I have included them here in hopes of continuing the discussion.
Questions for Greg:
- What was the first symptom of Alzheimer’s that you noticed? What did you attribute this symptom to at first?
- What strategies do you use to orient to the 5 W’s every morning? What kind of compensatory strategies do you find most useful?
- How does it feel to listen about the same thing over and over or even being questioned about the disease?
- What does it take to get reoriented in a moment of confusion? I am wondering how reorientation during “off moments” goes?
- It seems that the confusion comes in almost conscious waves, how do you handle this and is there any sort of build up/predictability?
- How often do you find yourself “going to Pluto” and does it happen at certain times of day?
- Do you find that there is a period of time in your life that memories are easier to remember (e.g. childhood versus more recent)?
- What outpatient therapies/services do you currently partake in?
- As a patient and family member how has a multidisciplinary care team been helpful to you?
- Have you tapped into resources beyond your very loving and supportive family to help support you through this challenging time? If so, what resources and how were you directed to them?
- Have you experienced stigma?
- Are you glad you knew about AD before your disease progressed (i.e. would you recommend people getting tested)?
- What is one of the best/most rewarding or joyful thing to have happened to you since being diagnosed with Alzheimer’s (that wouldn’t have happened if not living with the disease)?
- How do you manage to write a book? Are there any strategies you adapted to for it?
- At some point, end of life planning is both inevitable, but responsible. How have you navigated these channels?
- How do you balance your personal needs with the needs of your dad?
- What were some of the small changes you noticed in your dad before the diagnosis of Alzheimer’s?
- How do you deal with this stress in front of him (especially while he is in the unaware phase)?
To the health professionals:
Disease progression and treatment
- You said Alzheimer’s is the sixth leading cause of death in the U.S. What exactly is it that makes it so deadly? What are the mechanisms of death?
- How much time do patients live after onset?
- What treatment has shown to be effective in halting the disease from progressing?
- What are your thoughts on the new research from Stanford about Alzheimer’s treatment?
- Why are hallucinations part of dementia?
- Do you know of any research or programs that use dance or movement as a therapeutic activity for patients with AD? It has been shown effective in PD and children with developmental disabilities.
- What is the role of speech-language pathologists in treating AD patients?
- How much scope do PTs have in this disease course?
- Can you tell us more about the techniques that you use to tap into the memories of patients with AD while working with them?
- Can the SLP please give some examples of the therapies you have done with people with Alzheimer’s?
- How can healthcare professionals best support family members and caregivers during this process?
- How do you respond to a family member thinking people from the past are still alive?
To Dr. Conant:
- Do you feel Mr. O’Brien’s dedication to writing his book has had an effect, positive or otherwise, on the progression of his disease?
- How did/do you break news like Alzheimer’s to a patient and their family?