Offering Comfort and Dignity to Deeply Forgetful People with Stephen G. Post, Ph.D.

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The family of caregivers of those who are cognitively impaired are our true unsung heroes. Often without respite nor compensation they serve those who have an Alzheimer’s diagnosis and other forms of dementia. Alzheimer’s can also have a component of early onset but most diagnoses show up as we get older. Research indicates that Americans are more afraid of getting Alzheimer’s disease than they are of dying. As our population ages, there is an ethical aspect to these cognitive illnesses that has been neglected in the United States. In this culture, with its emphasis on hyper-cognitive power and productivity, we can, hopefully, begin to acknowledge the equal moral status of people with physical and cognitive disabilities and not dismiss the consciousness and awareness of an individual with dementia as someone less significant than that of someone who is more lucid of mind. And, we can better support those who support this growing population. This deep dialogue includes the challenges of what Stephen G. Post calls “Deeply Forgetful People” and how we may better meet them. He says, “I'm a true believer in offering dignity and comfort to those in cognitive decline… There are no great drugs out there. Not even good drugs out there for the treatment of Alzheimer's disease. However, if you provide people with access to music that relates to their life journey they're better over the course of the day, they don't have to use so many medications for aggression and other behavioral difficulties. It cuts it down by about 50%. Also, their caregivers are inspired. They say, ‘you know what, they're not gone. They're not a husk. They're just hidden. They're opaque. But they're there.’ And that's a beautiful thing.” (hosted by Justine Willis Toms) 

Bio

Stephen G. Post, Ph.D. is among a handful of individuals awarded the National Distinguished Service Award from the National Alzheimer’s Association. In 2001 he founded The Institute for Research on Unlimited Love, which researches and distributes knowledge on kindness, giving and spirituality. Post served as a co-chair of the United Nations Population Fund Conference on Spirituality and Global Transformation. He’s a professor in the Department of Preventative Medicine at Stony Brook University and founder and director of the Stony Brook Center for Medical Humanities, Compassionate Care and Bioethics.

Stephen G. Post, Ph.D. is the author of: 

• Why Good Things Happen to Good People: How to Live Longer, Healthier, Happier Life by the Simple Act of Giving (Broadway Books 2008)
• The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying (Johns Hopkins University Press, 2^nd edition 2000)
• God and Love on Route 80: The Hidden Mystery of Human Connectedness (Mango 2019)
• Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease (Johns Hopkins University Press 2022) 

To learn more about the work of Stephen G. Post, Ph.D. go to www.stephengpost.com.

Topics explored in this dialogue include:

• How Western culture disfavors those who are cognitively challenged
• What is the difference between assisted oral feeding of someone with dementia versus oral feeding
• What is the truth about mind over matter
• What is memory and where is it stored
• What is the difference between habitual memories, narrative memories, and Akashic memory
• Why Post uses the term “deeply forgetful people” rather than dementia
• What is the difference between paradoxical lucidity and terminal lucidity
• What are the kinds of questions to avoid asking of deeply forgetful people
• Why we should not be frustrated and should have patience when a person keeps asking the same question over and over
• Why we should shift a greater portion of our large governmental funding of pharmaceutical research into the care of Deeply Forgetful People
• How music therapy, singing, and comfort dogs are very effective in the care of Deeply Forgetful People
• Why more funding should be applied to those who have 24/7 care of their loved ones with cognitive challenges
• What is the Good Samaritan Project in Canada that covers long-term care and hospice for people in cognitive decline
• What does Post say about feeding tubes versus assisted oral feeding for those in cognitive decline
• What does Post say about stopping treatments of those in severe cognitive decline who have diabetes, heart disease, are on dialysis, or have cancer
• What is a living will and why a family member may not be the best person to be assigned with our durable power of attorney
• What is the state of nursing home staffing in the United States
• Why hospice care is advisable and doesn’t mean we are resigning ourselves to a death warrant
• Why having a yes to every no is important when working with someone with declining cognition as they lose more and more of their freedoms
• How we can become much less fearful of cognitive decline when we have access to those who care about us and who understand the disease of such decline
• Who can we turn to when we don’t have family as we become cognitively challenged
• What does Post have to say about assisted suicide 

Host: Justine Willis Toms   Interview Date: 8/19/2022   Program Number: 3768

Music Playlist

From Album:  Fresh Impressions
Artist: Georgia Kelly (with Stephen Kindler, violin)

Opening Essay: Track 01: Sicilienne
Music Break 1: Track 02 - Gnossienne #5
Music Break 2: Track 03 - Giverny (jiverne)
Music Break 3: Track 09 - Pastorale d'éte