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Summary
Summary
For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.
How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of--and find renewed hope in--surprising expressions of selfhood despite the challenges of cognitive decline.
In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:
* understanding the experience of dementia
* noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
* perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
* how to communicate optimally and use language effectively
* the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
* the value of trained "dementia companion" dogs
At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.
Author Notes
Stephen G. Post is the director of the Center for Medical Humanities, Compassionate Care, and Bioethics at the Renaissance School of Medicine at Stony Brook University. He is the author of The Moral Challenge of Alzheimer Disease:
Reviews (1)
Library Journal Review
Post (Ctr. for Medical Humanities, Compassionate Care, and Bioethics, SUNY Stony Brook) argues that Western society places too much value on a person's cognitive abilities and too little value on their personality and humanity, which has negative consequences for the lives of people with Alzheimer's or other dementia (a group for whom he uses the term "deeply forgetful people" throughout this book). Post's book proposes a new paradigm of ethical caregiving for deeply forgetful people, with practical aids for their caregivers. For instance, he discusses preemptive physician-assisted dying for people with dementia; Post is against this practice and provides thoughtful reasoning for his position. He also deplores the medicalization of end-of-life care and stresses the importance of establishing advance medical directives and durable powers of attorney while the deeply forgetful person is still able to express their wishes. Post contends that the purpose of caregiving is to preserve the dignity of the person being cared for, and that the only requirement for being treated with dignity is consciousness. Post emphasizes that the ethics of care do not demand self-sacrifice of the caregiver; the book concludes with a caregiver resilience program called "Meeting Alzheimer's: Learning to Communicate and Connect." VERDICT Essential reading for all caregivers, family, and healthcare providers of deeply forgetful people.--Rachel Owens
Table of Contents
| Preface | p. xiii |
| 1 In Praise of Caregivers and Dignity | p. 1 |
| The Ultimate Reality of Human Interdependence | p. 4 |
| Seekers of Deeper Justice | p. 4 |
| Learn First from the Caregiver | p. 7 |
| Noticing Human Dignity | p. 8 |
| "Deeply Forgetful People" | p. 9 |
| Words of De-dignification | p. 10 |
| Connecting with Art and Music | p. 11 |
| Three Cultures of Dignity | p. 12 |
| The Confucian Approach in China and Japan | p. 13 |
| Love at Work in Poverty: Leo and Sister May | p. 15 |
| An Ethics of Care | p. 18 |
| Caregiver Questions as Alzheimer's Unfolds | p. 19 |
| 2 Hope in Caring for Deeply Forgetful People | |
| Why It Matters and Where to Find It | p. 21 |
| Hope in Faith: Caregiver Orien Reid | p. 22 |
| Hope in the Biomedical Model | p. 28 |
| Hope in Being Open to Surprises | p. 31 |
| Hope in Man's Best Friend: The Alzheimer's Service Dog | p. 33 |
| Hope in Twelve Aspects of the Enduring Self | p. 36 |
| Hope in the Moments of Joy | p. 44 |
| Conclusions | p. 48 |
| 3 Answers to Sixteen Questions Caregivers Ask from Diagnosis to Dying | p. 51 |
| Alzheimer's as a Cause of "Dementia" | p. 53 |
| Answers to Sixteen Questions | p. 55 |
| Q1 Should we break the news to Grandma? | p. 56 |
| Q2 How quickly will I decline? | p. 63 |
| Q3 Are there really any effective drugs to stop this disease? | p. 65 |
| Q4 Can tender loving care make a difference or is it all just biological? | p. 72 |
| Q5 Should we tell other people about my diagnosis? | p. 74 |
| Q6 Will "I" still be there, more or less, despite the silence or confusion? | p. 75 |
| Q7 Will I "suffer"? | p. 78 |
| Q8 Do I really want to continue to treat my heart failure or diabetes or dialysis or cancer as this disease unfolds? | p. 80 |
| Q9 Will I be a burden to those who take care of me? | p. 81 |
| Q10 Is genetic testing a good idea? | p. 83 |
| Q11 Should I file a living will or a durable power of attorney for health care? | p. 85 |
| Q12 Will my remaining ability to make choices be respected? | p. 87 |
| Q13 Will I be physically or chemically restrained? | p. 90 |
| Q14 Can I drive? | p. 93 |
| Q15 Should I participate in research? | p. 96 |
| Q16 Can I avoid technology and tubes so I can just die naturally? | p. 98 |
| Conclusions | p. 107 |
| 4 The Seventeenth Question: Preemptive Physician-Assisted Suicide (PPAS) for Alzheimer's Disease | |
| A Caution | p. 109 |
| Two Cases of PPAS | p. 110 |
| Grandma J | p. 111 |
| Janet Adkins and Dr. Kevorkian | p. 113 |
| Sources of Ambivalence: Five Reasons to Question PPAS | p. 115 |
| Reason One: Do you know how this disease will progress? | p. 117 |
| Reason Two: What kind of legacy is left behind? | p. 118 |
| Reason Three: What about interdependence? | p. 119 |
| Reason Four: Can we learn to notice the expressions of selfhood? | p. 120 |
| Reason Five: Isn't hospice good enough? | p. 121 |
| Why Not Legalize PPAS in the United States? | p. 121 |
| Caution One: Will PPAS diminish social commitment to long-term care? | p. 123 |
| Caution Two: Will PPAS spill over into other "nonterminal" illness categories? | p. 124 |
| Caution Three: Is there a risk of going from voluntary to nonvoluntary PPAS and even euthanasia? | p. 127 |
| Conclusions | p. 128 |
| 5 A Caregiver's Ethical Purpose | |
| Preserving Dignity, Ten Manifestations of Care, and Respect for the Whole Story of a Life | p. 130 |
| Dignity | p. 130 |
| Four Stories of Enduring Dignity | p. 132 |
| Jim's Glorious Twig | p. 132 |
| Jan's Awesome New Snowflakes | p. 133 |
| Ruth's Deep Gratitude | p. 136 |
| Clint's Cowboy Hat | p. 137 |
| Acting against Indignity and Humiliation | p. 138 |
| The Nazi Doctors and the Perils of Forgetfulness | p. 138 |
| The Stark Humiliation of Mrs. H | p. 139 |
| Dignity in the Parking Lot | p. 141 |
| The Circle of Care: Ten Manifestations | p. 142 |
| The Way of Celebration | p. 144 |
| The Way of Helping | p. 145 |
| The Way of Forgiveness | p. 146 |
| The Way of Carefrontation | p. 146 |
| The Way of Mirth | p. 146 |
| The Way of Respect | p. 147 |
| The Way of Attentive Listening | p. 148 |
| The Way of Compassion | p. 149 |
| The Way of Loyalty | p. 150 |
| The Way of Creativity | p. 152 |
| Respect for the Whole Story of a Life | p. 152 |
| The Example of Sexual Intimacy and Integrity | p. 154 |
| Additional Core Values in Caregiver Ethics | p. 158 |
| Breaking Free from Hypercognitive Personhood | p. 162 |
| Is a Deeply Forgetful Person a Person? Yes. | p. 166 |
| Caring Communication | p. 167 |
| Can We Learn to Communicate? | p. 169 |
| Conclusions | p. 171 |
| 6 Respecting the Preferences of Deeply Forgetful People in Health Care and Research | p. 173 |
| Everyday Preferences | p. 174 |
| Health Care Decisions | p. 175 |
| Reconceptualization: Compassionate Autonomy | p. 181 |
| See a Lawyer | p. 183 |
| Research Ethics | p. 188 |
| 7 "Is Grandma Still There?" | |
| The Mystery of Continuing Self-Identity | p. 191 |
| "Paradoxical" or "Terminal" Lucidity | p. 193 |
| On Spirituality | p. 195 |
| A Trip to Bangalore | p. 197 |
| Fifteen Focus Groups | p. 198 |
| A Speculative Model of Continuing Selfhood | p. 201 |
| The Continuing Mystery of Autobiographical Memory | p. 203 |
| Consciousness as the Ground of Personhood and Dignity | p. 206 |
| Human Consciousness and Post-Materialism | p. 207 |
| Hope in Deep Self-identity | p. 208 |
| A Pastoral Conclusion | p. 209 |
| An Epilogue: North Wind | p. 211 |
| A Caregiver Resilience Program Meeting Alzheimer's | p. 221 |
| References | p. 241 |
| Acknowledgments | p. 255 |
| Index | p. 259 |
