Many people regard dementia as a fate worse than death, in large part because it strikes at the essence of our humanity — our memories, identity, and relationships with others. Unlike diseases that primarily afflict the body, dementia erodes the mind, leading to a gradual fragmentation and loss of self and autonomy.
The burden of this disease on caregivers also cannot be understated. Not only does dementia require comprehensive, long term care that addresses the afflicted individual’s cognitive, behavioral, and physical issues; witnessing a loved one's slow and irreversible decline often exerts an immense emotional toll on the caregiver. Additionally, the pervasive stigma and isolation associated with dementia can leave caregivers feeling unsupported and alone.
Our guest on this episode is Dasha Kiper, a clinical psychologist who works with caregivers to people with dementia. She's the author of Travelers to Unimaginable Lands: Stories of Dementia, The Caregiver, and the Human Brain (2023). The book explores the complex relationship between caregivers and dementia patients, which are frequently rife with heartbreak, guilt, frustration, helplessness and shame. Over the course of our conversation, Dasha shares her transformative personal experiences working as a caregiver, why caregivers deserve more empathy and understanding, ethical dilemmas over medical interventions and patient autonomy, navigating the distorted reality in the mind of a dementia patient, coping strategies for caregivers and healthcare professionals, and more.
In this episode, you’ll hear about:
3:13 - How Dasha “stumbled” into working as a live-in caregiver for a dementia patient while still in school
4:44 - How serving as a caregiver for a dementia patient shaped Dasha’s views of neurological illness
10:23 - Managing the “loss of shared reality” that often occurs between the caregiver and the dementia patient
23:45 - The added emotional toll that dementia can take on family members
32:46 - What human dignity means in the context of dementia care
36:55 - Fostering self-compassion as a clinician or caregiver by connecting with community
49:16 - Dasha’s advice for finding community support if you are a family caregiver
Dasha Kiper is the author of Travelers to Unimaginable Lands: Stories of Dementia The Caregiver and the Human Brain (2023).
Past episodes and works discussed in this episode:
Episode 62: Navigating my Father’s Alzheimer’s as a Doctor | Sandeep Jauhar, MD
My Father’s Brain: Life in the Shadow of Alzheimer’s by Sandeep Jauhar, MD
Visit our website www.TheDoctorsArt.com where you can find transcripts of all episodes.
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The Doctor's Art