Sandeep Jauhar's memoir explains how Alzheimer's works – and how it affected his dad
Sep 27, 2023
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Sandeep Jauhar, physician and author of My Father's Brain, shares his personal journey of caring for his father with dementia and explores the challenges of understanding and caring for loved ones with Alzheimer's. He discusses the difficulties faced by caregivers and the lack of support and resources available. Additionally, he delves into the moral dilemma of end-of-life care and highlights the cultural importance of finding culturally competent caregivers.
Understanding the cultural context of caregiving for aging loved ones is crucial for their safety.
Dementia caregivers lack sufficient support and resources, highlighting the need for improved government funding and innovative care models.
Deep dives
Recognizing the Signs of Dementia
The author, Sandeep Johar, discusses his book 'My Father's Brain', recounting his experiences as a caregiver for his father who suffered from dementia. He shares the initial signs of memory loss, such as forgetting lunch and important codes. While memory loss is common as people age, Johar recognized that his father's memory loss was more severe. As a cardiologist, Johar realized that understanding what was happening in his father's brain would help him cope with the frustrations and emotional challenges of caregiving.
Dealing with the Ugly Side of Caregiving
Johar delves into the raw and sometimes disturbing aspects of caregiving for a loved one with dementia. He shares an example of his father's violent outbursts, throwing orange juice at a caregiver and attempting to hit her with a wire hanger. Johar initially believed in being honest and upfront with his father, but later realized that bending the truth and validating his father's reality was more compassionate. He explores the tension between truth-telling and maintaining dignity in caregiving.
Challenges and Help for Caregivers
Johar highlights the lack of support and resources available for dementia caregivers. He emphasizes that dementia is an epidemic affecting millions of families and that the government funding for dementia care is insufficient. Sharing his global research, Johar mentions a dementia village in the Netherlands that offers autonomy and support for individuals with dementia. He suggests that similar models could work in the United States. Johar acknowledges the ethical dilemma he faced regarding end-of-life decisions for his father and reflects on finding moments of pleasure amid cognitive impairment.
As a physician, Sandeep Jauhar had a certain understanding of Alzheimer's. Then, when the disease was impacting his own father, more and more questions, confusion, and frustrations arose. In his new memoir, My Father's Brain, Jauhar describes how his immigrant family grappled with his father's new reality. He tells Here & Now's Deepa Fernandes how difficult and exhausting it can be to allocate the resources that it takes to care for an aging loved one, and how cultural context can play a huge role in their safety.