Carol J. Farran, PhD, RN, MSN, FAAN

Carol J. Farran, PhD, RN, MSN, FAAN
  • Professor, Adult Health and Gerontological Nursing, Rush University College of Nursing, Chicago, IL
  • Researcher and Principal Investigator at the Rush University Alzheimer’s Disease Center/Rush Institute for Healthy Aging
  • Rush University Nurses Alumni Association Endowed Chair in Health and the Aging Process
  • Author, Hope and Hopelessness (1995)
  • International speaker and presenter

Dr. Farran’s multidisciplinary research has focused on geropsychiatric issues in community and inpatient settings, as well as interventions with older adults and family caregivers of persons with Alzheimer’s disease and related dementias. She has also written on Hope and Hopelessness, 1995, Sage Publications, as well as on “Finding Meaning through Caregiving.” Throughout her research career she has collaborated with co-investigators from the Rush Alzheimer’s Disease Center, Rush Health and Aging, and Rush Institute for Healthy Aging. She has received notable honors for this work from the American Academy of Nursing Raise the Voice Edge Runner; the John A. Hartford Foundation/MNRS Award for Leadership in Geriatric Nursing Research; the NIH for the Plain Language/Clear Communications Gold Award for the booklet on Caring for a Person with Alzheimer’s Disease; and the Rosalynn Carter Leadership in Caregiving Award, as a Co-Recipient with Robyn Golden.

Looking back to the late 80’s, I now recall conversations with Carol, a friend and colleague from early career days. By this time, she was a researcher at the Rush University Alzheimer’s Disease Center.  The conversations which were to leave a special impression were those about her research on “Hope and Hopelessness.” In reflection, I now believe that her research, combined with my interest in holistic health, influenced me a decade later at the time of Mother’s diagnosis.

From somewhere deep within, I drew upon a conviction that we did not need to surrender to the culture of fear surrounding this dreaded diagnosis. In part, this would be attributed, I now believe, to knowing about Carol’s body of work – and then choosing between hope and hopelessness at a time when Alzheimer’s Disease was accepted by our culture as a hopeless diagnosis.

Bill Thomas, MD

Bill Thomas, MD
  • Physician, Harvard-educated activist geriatrician
  • Author and international authority on geriatric medicine and eldercare
  • Professor of Aging Studies and Distinguished Fellow at UMBC’s Erickson School, Baltimore, MD
  • Co-founder – Eden Alternative; Visionary Spirit – Changing Aging; Founder – Green House Movement
  • AARP Visiting Scholar
  • “One of America’s top 10 innovators,” The Wall Street Journal
  • Websites:  www.edenalt.org
    changingaging.org
    www.thegreenhouseproject.org

Author, entrepreneur, musician, teacher, farmer and physician, Dr. Thomas’s wide-ranging work explores human aging. Named by The Wall Street Journal as one of the top ten Americans shaping aging, Dr. Thomas is internationally known for his health care system innovations. A Harvard graduate, he is the founder of a global non-profit, The Eden Alternative, and creator of The Green House Project, radical new approaches to reform long term care. Dr. Thomas also developed the Senior ER model of care and is now working to transform the acute care services provided to elders. He appeared in the Sundance award-winning documentary Alive Inside. He is creator of a national non-fiction theater roadshow called the Age of Disruption Tour. The tour is inspired by his book, Second Wind: Navigating the Passage to a Slower, Deeper and More Connected Life.

A voice for change, Dr. Thomas was featured in the very first regional Alzheimer’s Association publication, Spring 1999 issue, which I received after returning to my hometown. His message about the Eden Alternative felt so validating of the alternative path upon which we had embarked. It was a moment which resonated.

I attempted to locate an Eden facility in our area, but the Eden Alternative movement had been founded only five years earlier. Learning that this pioneer movement to transform eldercare was being led by a passionate physician was timely – and would continue to inspire the days ahead.

Since the early days of the movement, Dr. Thomas has also developed Eden at Home in which the needs of caregivers are also seen as the needs of care receivers. He advocates for the well-being of the whole “care partnership” and for empowering the care partner team.

His vision is to eliminate loneliness, helplessness, and boredom. In addition, Dr. Thomas seeks to end ageism – across the age spectrum – with a focus on what one is capable of doing, regardless of life-stage.

Andrew Weil, MD

Andrew Weil, MD

Dr. Weil is a physician, author of many books, and leader of the Integrative Medicine movement. His early medical practice focused on natural and preventive medicine and diagnosis. In his book, Health and Healing: The Philosophy of Integrative Medicine (1983), he defined “integrative medicine” as the practice of alternative medicine with conventional medical practice being used for health crisis intervention. Emphasizing nutrition, exercise and stress reduction to maintain the body’s natural healing systems, he supports the use of conventional medicine for more radical intervention in the event of health crises.

The Arizona Center for Integrative Medicine has trained hundreds of physicians, physician assistants and nurse practitioners in integrative medicine. Integrative medicine programs have now been established at many leading institutions, including the Mayo Clinic, Georgetown, Duke, Columbia University, and Harvard Medical School. He is recognized as an authority for his views on leading a healthy lifestyle, his philosophy of healthy aging, and his critique of the future of medicine and health care.

Dr. Weil’s books had been given as gifts among immediate family members for a few years. Featured as the “alternative health guru” in the 2005 Time  cover story, Dr. Weil’s “Ten Wellness Tips” were listed in a small inset within the article.

#10 on the list was to “keep fresh flowers in the home for their beauty, fragrance, and the lift they give our spirits.” We were already familiar with the “lift” one receives – from the days when Bets, a younger sister, and I threw open the windows of the old farmhouse and brought in bouquets of flowers from the yard and garden.

Finding flowers on a “wellness list” prompted me to sign up for his e-newsletter, and we began adding his recipes to our growing collection.

By 2006, we knew that Dr. Weil recommended an anti-inflammatory nutritional approach for Alzheimer’s. So when he suggested in an e-newsletter that his readers “detoxify” kitchen cabinets of sugar, flour, and processed foods, we were more than ready to take this step.

We pulled out a bushel basket and began removing these items from the shelves. When we finished, the basket was full – and we have never looked back. We were left with an anti-inflammatory nutritional approach for which we found delicious recipes for Barbara, one of our very special caregivers who was a wonderful cook.

It became a sustainable nutritional approach – one maintained to the present time. It has never felt like a diet. Instead it became, for me, a “nutritional lifestyle.”

Harvey Max Chochinov, MD, PhD, FRSC

Harvey Max Chochinov, MD, PhD, FRSC

Dr. Harvey Max Chochinov has been doing palliative care research since 1990 with funding support from local, provincial and national granting agencies. His work has explored various psychiatric dimensions of palliative medicine, such as depression, desire for death, will to live and dignity at the end of life. He has been a guest lecturer in most major academic institutions throughout Canada and United States; he has also lectured in South America, New Zealand, Australia, Europe, Cuba, Israel, China, Singapore, Taiwan and Japan. He is the only psychiatrist in Canada to be designated as a Soros Faculty Scholar, Project on Death in America. He is a recipient of the Queen’s Golden Jubilee Medal and his province’s highest honor, the Order of Manitoba, for his work in palliative care. In addition to over 200 publications, he is the Co-Editor of the Handbook of Psychiatry in Palliative Medicine, published by Oxford University Press, and the Journal Palliative and Support Care, published by Cambridge University Press.

One of my mantras in the early days of our move to the ranch was “It’s about dignity.” Those early days were fresh and fragile as I was very conscious of the milieu being created – while new patterns of care were being established. This environment would be about dignity for Mother and Dad.

It was before the days of Google and Yahoo when I searched on-line for “dignity for elders” to see what wisdom might be accessed through the still-new “www.” The results included an on-line article on “Dignity Therapy,” my introduction to the work of Dr. Chochinov.

His research has validated the importance of this spiritual intervention at the end of life. His work provides a method for promoting a healing transition during this life-stage, at a time when many would believe that “nothing more can be done” for the loved one.

Learning about Dr. Chochinov’s research helped me appreciate what was happening every time I saw Dad opening his “life resume.” Silently reading it again, then taking a deep breath, and appearing to relax – he would return it to its special place in his end table. In one of those private moments, I overheard him quietly and peacefully say to Mother, “We did the best we could with what we had.”

Unprompted, Mother would sometimes stand to happily read her wonderful autobiography – oratorically and repeatedly to everyone within hearing distance. She would finish her reading in an upbeat state of mind which exuded joy and a feeling of accomplishment. I believe her sense of accomplishment came not only from her “delivery” but also from her story – a life well-lived.

The value of Mother’s autobiography and Dad’s “life resume” at this time in their lives was simply priceless. Both of these legacy documents had been completed by the time “Dignity Therapy” came into my awareness via the internet search.

The approach utilized by Dr. Chochinov in “Dignity Therapy” is for clinicians, hospice, palliative care professionals, and those in the helping professions. The title of Dr. Chochinov’s book is Dignity Therapy: Final Words for Final Days.

Stephanie Mayercik, RN, BSN, MS

Stephanie Mayercik, RN, BSN, MS
  • Executive Director, Harbor Light Hospice
  • Nursing Director, Summa Health System; Former Director of Clinical Services, Charter Mental Health Hospital
  • Nurse Manager, United States Air Force
  • MS, University of Notre Dame; BSN, Creighton University; RN, Akron City Hospital School of Nursing

Stephanie’s most recent employment prior to retirement was serving as Executive Director of a free-standing hospice. Previous employment includes nursing administration positions with multi-hospital systems in Indiana and Ohio. In addition, she has served as primary caregiver for her own aging parents as well as the parents of Michael, her spouse, now deceased.

In 2003, we were many miles apart but still in touch – two decades after having worked together in a Chicago-area hospital. Between friends, I was telling her about Dad’s physical care. He was a large man who had become quite weak. By this time, I was frequently helping my 200-pound father to get back on his feet after a growing number of falls.

On weekdays, we had an excellent team of caregivers we called “The Dream Team,” each with unique talents, making a unique contribution. We had not qualified for any home health services which would have provided weekend respite and/or weekday financial relief.

I talked at length about Dad’s needs and level of functioning before Stephanie responded with an observation I was not expecting. I had not considered that we were even close to meeting criteria for hospice admission. Thus, I had very mixed feelings.

She was by this time the Executive Director of a hospice organization in the Chicago area. I learned from her that if an individual with dementia met a set of admission criteria in compliance with Medicare regulations, the cost of hospice visits would be covered by Medicare.

I wanted the best care for Dad. If we were to qualify, why would we not accept it? Additional support would help to make him more comfortable while providing reassurance that we were doing everything we could for him.

Steph provided a local number for me to call to request an evaluation in our home. The hospice RN who did the evaluation then spoke with Dad’s physician to discuss her assessment and to make him aware that Dad met the admission criteria. When the physician agreed to the admission, the hospice support began within a couple days.

As it turned out, Dad received hospice care for 18 months until his death in 2005. These months became a sacred period in our time together. Susan Mazur, CNA, who came for Dad’s bath gave him the ultimate in care and made him feel like a new man in every visit. It was such a positive experience for him and for every person present – whenever she arrived to make him look and feel beautiful.

Dad and Susan had a very special relationship, due to her skillful care – a bath, grooming, fluffing and puffing – never rushed, it seemed. The entire hospice team, including an RN, social worker, and chaplain, visited with Dad and Mother on a regular basis.

We were also provided with supplies and equipment, including a wheelchair – which, by that time, we were ALL ready to accept.

In our friendship of many years, Stephanie’s gifts included her finely-tuned listening skills, abundant practical wisdom, and a sense of humor. Whatever would “the ranchers” have done if she had not stopped to listen at that significant moment?  It led to the best possible outcome – the ultimate in care.

The general public is often not aware of hospice, since it is still a relatively young movement. My decision to write about this personal experience is based on my belief that everyone deserves the kind of care in their final days which Dad received in his. For more information about hospice, click here.

Peter Whitehouse, MD, PhD (Psychology) and MA (Bioethics)

Peter Whitehouse, MD, PhD (Psychology) and MA (Bioethics)

Dr. Whitehouse trained at Brown and Johns Hopkins Universities. He is currently a Professor at Case Western Reserve University and University of Toronto and an internationally-known Alzheimer’s expert. A geriatric neurologist, cognitive neuroscientist, and bioethicist, Dr. Whitehouse is the founder of the University Alzheimer Center (now the University Brain Health and Memory Center) at Case Western Reserve University and University Hospitals Case Medical Center. A pioneer in understanding how the brain is affected by what he “used to call Alzheimer’s disease,” his recent work includes ethics, integrative health care, and quality of life. With his wife, Catherine, he co-founded The Intergenerational School in Cleveland. He and co-author, Dr. Daniel George, wrote their book and created the website in order for our community to “re-imagine new approaches to brain aging.”

Juggling work responsibilities and caregiver responsibilities on a busy summer day, I missed an interstate exit while en route to a dental appointment. After correcting course, which created additional travel moments, I turned on an NPR interview and heard the voice of Dr. Peter Whitehouse on this brilliant, sunny day – at just one of those moments which totally resonated.

The interview was about the recent publication of The Myth of Alzheimer’s. The conversation of the moment was on “music and Alzheimer’s.”  Music had been a daily staple at the ranch since our early days together, and, even at this point, very little media attention was being given to its importance in relationship to Alzheimer’s. I was elated to hear about this publication – which Amazon delivered to our door on the following day.

Later that summer, I had the opportunity to meet with Dr. Whitehouse and Dr. George in Cleveland and visit The Intergenerational School, founded by Peter and his wife, Catherine. The school is an internationally-recognized public school “committed to enhancing lifelong cognitive vitality.”

The authors are prominent scientists helping to humanize the way we think about brain aging. The book is pragmatic, humane, and compassionate. Regarded as a landmark publication, this carefully researched book is for policy makers, researchers, physicians, clinicians, caregivers, families.

Daniel George, PhD, MSc

Daniel George, PhD, MSc

Dr. George is an Associate Professor in The College of Medicine at The Penn State University. He earned his M.Sc and Ph.D in Medical Anthropology from Oxford University in England. He graduated summa cum laude and phi beta kappa, earning his B.A. in English and Philosophy from The College of Wooster (OH). He is co-author of The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis.  The book has been translated into German, French, Italian, and Japanese. Dr. George is an artist and musician who plays the guitar, piano, and ukulele. He and Dr. Whitehouse have been friends and colleagues since 2004.

Juggling work responsibilities and caregiver responsibilities on a busy summer day, I missed an interstate exit while en route to a dental appointment. After correcting course, which created additional travel moments, I happened to turn on an NPR interview and heard the voice of Dr. Peter Whitehouse on this brilliant, sunny day – at just one of those moments which totally resonated.

The interview was about the recent publication of The Myth of Alzheimer’s. The conversation of the moment was on “music and Alzheimer’s.”  Music had been a daily staple at the ranch since our early days together, and, even at this point, very little media attention was being given to its importance in relationship to Alzheimer’s. I was elated to hear about this publication – which Amazon delivered to our door on the following day.

Later that summer, I had the opportunity to meet with Dr. Whitehouse and Dr. George in Cleveland and visit The Intergenerational School, founded by Peter and his wife, Catherine. The school is an internationally-recognized public school “committed to enhancing lifelong cognitive vitality.”

The authors are prominent scientists helping to humanize the way we think about brain aging. The book is pragmatic, humane, and compassionate. Regarded as a landmark publication, this carefully researched book is for policy makers, researchers, physicians, clinicians, caregivers, and families.

 

Al Power, MD, FACP

Al Power, MD, FACP
  • Schlegel Chair in Aging and Dementia Innovation at the Schlegel-U. Waterloo Research Institute for Aging in Ontario, Canada
  • Board-certified internist and geriatrician, Clinical Associate Professor of Medicine at the University of Rochester, New York
  • International medical educator and consultant on dementia, culture change and elder care
  • Author, Dementia Beyond Drugs: Changing the Culture of Care – Second Edition (2017). “2010 Book of the Year Award” from the American Journal of Nursing and “2011 Merit Award” from National Mature Media
  • Author, Dementia Beyond Disease: Enhancing Well-Being – Revised Edition (2017)
  • Certified Eden Alternative® Educator; blog contributor to www.changingaging.org
  • Board member, Dementia Action Alliance
  • Accomplished musician and songwriter with three recordings: His song of elder autonomy, “If You Don’t Mind” – performed by Peter, Paul, and Mary; “I’ll Love You Forever” – used by Walter Cronkite in a 1995 Discovery Channel documentary on American families
  • Website: www.alpower.net

As an international educator, Dr. Power is a strong advocate for the restoration of dignity and comfort while helping those living with dementia to flourish. He is the author of two recent books, including Dementia Beyond Drugs: Changing the Culture of Care – Second Edition (2017) and Dementia Beyond Disease: Enhancing Well-Being – Revised Edition (2017). His publications offer humanistic models of care not only for those living with dementia but also for those who care for them. He discusses the shift from institutionalization to “deinstitutionalizing care environments” and asks, “Can we achieve drug-free care?” As educator and activist, he maintains a non-stop international travel schedule, speaking out for changing the culture of dementia care.

Dr. Power’s books are recommended for dementia caregivers, families, and all who are involved in the care of a person with dementia. These empowering books validated what we had personally witnessed while caring for Dad and Mother in their final days.

From 2003 to 2005, Dad had an extraordinary 18-month hospice experience at home – during which time, he was almost completely med-free, taking only a heart medication.

In 2010, the year in which Dr. Power’s first book was published, Mother was accepted for admission to a nursing home at a time when it appeared there were no alternatives for her care. However, when I was informed three weeks after her admission that she could no longer swallow and had stopped eating, I employed some additional caregiver assistance until my shoulder injury was fully mended.

We thought we were bringing her home to spend her final days in familiar and comfortable surroundings. Would we be able to move her from the car into the house? The condition in which she was found on a daily basis in the nursing home had declined rapidly to the point of finding her immobile.

She clapped joyfully when she saw the RAV pulled up to the canopy. She hugged a dear caregiver in the backseat all the way home, quickly walked – mostly unassisted – from the car into the kitchen, sank into her cushion at the table, and said, “This is good.”  She ate heartily until the day before she died thirteen months later.

What was her state of well-being in the subsequent final months? She continued to communicate expressively – mostly non-verbally. When communicating verbally, it was most often in song. She loved unconditionally, inspired us to the heavens and back – and, all the while, she never stopped teaching. From a daughter’s perspective as witness, it appeared she was fulfilling her mission.

Roshi Joan Halifax, PhD

Roshi Joan Halifax, PhD

Dr. Halifax is a master teacher, pioneer in end-of-life care, and author of Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death (2009). She works with dying people and their families and teaches health care professionals and family caregivers the psycho-social, ethical and spiritual aspects of care of the dying. She has lectured on the subject of death and dying at many academic institutions, including Harvard Divinity School and Harvard Medical School, Georgetown Medical School, University of Virginia Medical School, Duke University Medical School, University of Connecticut Medical School, among many others. She has been active in environmental work for many years.

It was one year after Dad’s 2005 death. With carefully-laid plans for continuing to provide a nurturing environment for Mother’s care, I traveled with a healthcare group to China and Tibet. Our group was led by Dr. Cynda Rushton, Professor of Clinical Ethics, Johns Hopkins School of Nursing, and Visiting Scholar at Upaya Zen Center.

By this time, Roshi Joan was a media figure and recognized as a pioneer in end-of-life care. It was through Cynda that we learned more about Roshi Joan’s pioneering work and near-future programs being offered at Upaya.

Her 2009 book, Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death, is for people of all faiths. A practical guidebook about the power of the dying process, it includes ways in which to approach death without fear. From a personal perspective, it helped in preparing for our precious Mother to “conduct her own final choral performance.”

 

Riane Eisler, JD, PhD (h)

Riane Eisler, JD, PhD (h)

Riane Eisler’s book, The Chalice and the Blade: Our History, Our Future is considered a classic. In The Real Wealth of Nations, she calls for a more “Caring Economy” which gives “visibility and value to the most essential human work: the work of caring for people and for our natural environment.” Her newest book, Nurturing Our Humanity: How Domination and Partnership Shape Our Brains, Lives, and Future, coauthored with anthropologist, Douglas Fry, PhD, shows how to construct a more equitable, sustainable, and less violent world based on partnership rather than domination. Her pioneering work in human rights has expanded the focus of international organizations to include the rights of women and children. She has been designated as one of 20 “Great Peacemakers,” all being international leaders who have made major contributions to world peace. Among the other 19 are Mahatma Gandhi, Martin Luther King, Jr., Mother Teresa, the Dalai Lama, Jane Goodall, Jacques Cousteau, King Hussein of Jordan, Walter Cronkite, and Archbishop Desmond Tutu.

I first read The Chalice and the Blade when it was published in 1987. In June 2010, when I learned that Riane Eisler and Marianne Williamson would be headlining a women’s summit in an international teleconference with thousands of participants from around the globe, Mother and I sat close to the kitchen table for this internet presentation and listened together. We both knew that something very important was taking place. It would surely create a global shift!

I enrolled in Dr. Eisler’s first offering for “Conversation Leaders” in 2011, but when Mother became bedfast that year, I withdrew from the course and was able to complete the certification upon returning to Chicago.

Her webinar programs encourage dialogue on how we can work together to create a more Caring Economy. If you are interested in learning more about this work, we invite you to follow future posts about opportunities for involvement.  These will be found in the Community section of this e-magazine.

For additional information about Riane Eisler, click here.

The Honorable Richard Taylor, PhD

The Honorable Richard Taylor, PhD

Richard Taylor Biography –
Richard Taylor Ph.D. (2012).
Retrieved November 30, 2014, from his website.

Richard Taylor, Ph.D., lived for well over a decade with the diagnosis of dementia, probably of the Alzheimer’s type. Speaking and writing about what it is like to live with this condition became the new purpose of his life. He is remembered as an activist dedicated to breaking down the stigmas of dementia and age, while inspiring and encouraging others to “Stand Up and Speak Out.” He was a champion of new empowering ways to relate to people in the various stages of the disease and to elders in our society.

To contribute to the Richard Taylor, PhD, Memorial Fund, please continue here

My initial contact with Richard was an invitation to be a Guest Contributor for our physician blog. “I have just received my first e-newsletter from you. By way of introduction, I have known about your work from Facebook posts by Dr. Al Power, Dr. Danny George and others.” I was humbled by Richard’s generous response. In addition to contributing to the physician blog, he had also offered to write for a new project which I shared with him. It would be called ABeautifulVoice.org – and, at that time, had barely landed on the drawing board. He was profuse in his generosity with platforms that would channel his ideas. We shared a strong affinity in our belief that, if we combine our efforts, we can only become a stronger voice for change. Richard helped to change the conversation around the globe and continues to be a source of great inspiration – to Stand Up and Speak Out.

John Swinton, PhD, BD, RMN, RNMD

John Swinton, PhD, BD, RMN, RNMD

Dr. Swinton is author, noted scholar and pastoral theologian. As Founding Director, Centre for Spirituality, Health, and Disability, he has a background in nursing and mental health chaplaincy. He has researched and published extensively within the area of mental health, spirituality and human well-being and the theology of disability.

Under his leadership, The Centre for Ministry Studies was established in 2014. It is an interdenominational centre seeking to work with all traditions to facilitate education and research for both lay and ordained people.

Looking back, I now regard my undergrad religion professors as being among my most outstanding teachers. Mother would also have been deeply influenced by her undergrad religion professors – in some of the same classrooms on the same college campus.

Many years later at the ranch, I wondered what effect her diagnosis would have upon her faith. I witnessed her connection to the country roads and familiar farms as we drove to her church, a drive which she would have taken on a regular basis for a lifetime. I saw first-hand how she was at her best, greeting and being greeted by her church family. The eldest daughter of a Mennonite minister, she always had a special greeting for the minister who delivered the message. But singing sacred music at the piano back at the ranch always seemed to be the ultimate in the expression of her faith during these final years together.

It was not until 2018 that I came across the book title, Living in the Memories of God. I was certain that, at some level, this described my mother’s experience: “defined by God’s memory.”

Teachers, preachers, and influencers

As I perused Dr. Swinton’s book, I came across some familiar names, which drew in my attention. During my early years at the ranch, I had made every attempt to return to Fourth Presbyterian Church in Chicago on a monthly basis.

The minister, Dr. John Buchanan, regarded as an influential theologian of his generation, also served as editor and publisher of The Christian Century. While at the ranch, I subscribed. During my later years as a caregiver, when unable to attend services, I liked reading his editorials and found the publication contained articles both challenging and stimulating. It was not unusual to find a reference to a Mennonite theologian, as well as Mennonite writers whose names I recognized.

Preaching on several occasions when I was able to attend was Dr. Buchanan’s friend, Dr. Walter Brueggemann, considered to be a premier Old Testament scholar. Among the most profound moments in my adult church life was sitting in the front row of the large Gothic sanctuary when he spoke – just after my father’s death. He is referenced with some frequency in Dr. Swinton’s book.

Another familiar name referenced in Dr. Swinton’s text is Dr. James Ellor whom I knew from the period in the mid-80’s during which I served as adjunct faculty at the university where he was then employed in the Chicago area. His work with Alzheimer’s has added the dimension of “soul care.”

Hospice at the ranch

During the hospice experience for both Dad and Mother, we became well-acquainted with hospice chaplain, Ron Little, for whom we all held a deep affinity and appreciation. He became like a family member and was greeted by Mother and Dad like a son. He helped to brighten their days – via unscripted, unconventional and priceless means – including humor – an excellent prescription for their time together.

Following the months – and years – of hospice care for both parents, I explored possible admission to seminary. While I was packing up to return to my condo in the city, I was speaking with a number of admissions offices in the Chicago area. My home was just a 20-minute drive from several seminary programs.

“Hospice Chaplain.” It was a role I explored for a period of time as a potential next-step – away from the ranch and into the future. The visualization fit me in many ways, I thought, as I explored a number of other possibilities which also offered meaning, purpose, and the potential for life-long learning in my spiritual quest.

Certain to become a classic: Dementia – Living in the Memories of God

I began reading in late 2018, initially drawn to Dr. Swinton’s book due to the focus of this e-magazine – the higher-level needs of the person living with dementia. The book did not fail to challenge me as a lay person. Similar in my response to the work of other “Influencers” included in this e-magazine, it resonated deeply for me, validating our experience at the ranch – at exactly the right time in my quest. I read it in small bites and digested it slowly over the period of several weeks.

And now, I wonder. That feeling of walking on “sacred ground” while being with Mother in her final days – was it a nexus to her experience of “living in the memories of God”?

Having “come in close” to be with her – which allowed me to hear her voice and witness her dignity, enduring love, and patience – helped me find meaning in every page and paragraph of this well-researched book.

The book is an important work for those interfacing – in any role – with dementia care. It is sure to become a classic.

Kate Swaffer, MSc, BPsych, BA, Retired Nurse

The Honorable Richard Taylor, PhD

Rights and Disability activist diagnosed with younger onset dementia in 2008

  • Author, What the hell happened to my brain? Living beyond dementia (2016) and Diagnosed with Alzheimer’s or Another Dementia (2016), plus two poetry books, and countless journal articles, media appearances and interviews, publications, and blogs.  
  • Co-founder, Chair, and CEO, Dementia Alliance International (DAI), the global voice of people with dementia
  • Australian of the Year in South Australia, 2017
  • Australian 100 Women Of Influence, Global Leader, 2018
  • Keynote speaker at the World Health Organization and frequent keynote speaker at international conferences
  • Leading global campaigner demanding human rights and disability rights for people with dementia and people in aged care
  • Academic degrees: MS, Dementia Care (Distinction), 2014; Bachelor of Psychology, 2010; Bachelor of Arts, (Writing and Creative Communication), 2009; Graduate Diploma in Grief Counseling
  • The focus of Kate’s uncompleted doctoral work, and other research projects includes Dementia as a Disability, Disability Rights, Human and Legal Rights, Stigma, Quality of Life, the Public Discourse of Dementia and the Power of Language.
  • Websites:  Creating Life with Words: Inspiration, Love and truth, Dementia Alliance International

Kate Swaffer is a humanitarian and international campaigner for disability and dementia rights, a highly published author and poet, and the Chair, CEO, and a co-founder of Dementia Alliance International. Kate has played a significant role in reframing dementia as a disability and the new narrative of dementia. She advocates for human and legal rights for all people with dementia and older persons, including equal access to the CRPD. She is an elected board member of Alzheimer’s Disease International, a past elected member of the World Dementia Council, and an Ambassador for Step Up For Dementia Research in Australia. Kate is also an Honorary Associate Fellow in the Faculty of Science, Medicine and Health, University of Wollongong, an International Fellow at the England Centre for Practice Development, Canterbury Christ Church University, and a Fellow of the Royal Society for the encouragement of Arts, Manufactures and Commerce (RSA).

Kate is the first person living with a diagnosis of dementia to give an invited keynote speech at an agency of the United Nations, the World Health Organisation (WHO), representing Dementia Alliance International. The presentation was for the WHO First Ministerial Conference on Dementia in March 2015. 

She demanded human rights access to the Convention on the Rights of Persons with Disabilities (CRPD) for all people with dementia, and a balance in research between care and cure on the global stage. These demands were included in the WHO Final Call to Action, and human rights were included in the WHO Global Action Plan on the Public Health Response to Dementia 2017-2025, adopted at the World Health Assembly in May 2017.

Kate began her career working as a nurse in dementia and aged care for 25 years, and then operating theatres. She is also a retired chef having run her own hospitality businesses for ten years.

How does one person change the public discourse? Perhaps it’s Kate’s ability to articulate the message in a way which no one before her has done. Perhaps it’s her incredible work ethic or her ability to get in front of the right audience. Perhaps it’s her ability to inspire others with a message meant precisely for these times. Whatever the essence of her many accomplishments, Kate’s contributions as an influential activist for human rights in aged and dementia care are totally inspiring by every standard.

It was in 2011 – the year of Mother’s death – that I became aware of Kate’s activism following her own diagnosis. Even at this late date in the ranch timeline, the low bar of acceptable standards in dementia care had continued to drive my personal dedication to provide “a place for Miss Ethel.”

From an early point, this began quite naturally as a spiritual quest to devote attention to Miss Ethel’s higher level needs. Over two decades later, the higher level needs – the soul care needs – of the person living with dementia would become the premise for ABeautifulVoice.org. Thus, I have had an abiding interest in Kate’s story.

Kate has been a pioneer, a human rights activist in dementia care, and a model of leadership in the international dementia community. To help shape the future, we need to hear her voice. It resonates with a message for change. The “old narratives” must be challenged. The conventional storyline must be replaced by “new narratives.” What the world needs now is responsible action.

Having a magnanimous spirit in creating the new narrative for these days, she is a welcome addition to this group of esteemed Influencers.

Sources:

Carol Farran Biography – Advance Health Solutions, LLC. (2014). Retrieved September 27, 2014, from
http://www.advancehealthsolutions.com/farran/

Bill Thomas Biography – Premiere Speakers Bureau. (2014). Retrieved September 27, 2014, from
http://premierespeakers.com/dr_bill_thomas/bio

Andrew Weil Biography – Academy of Achievement. (2010). Retrieved September 27, 2014, from
http://www.achievement.org/autodoc/page/wei1bio-1

Harvey Max Chochinov Biography – University of Manitoba Faculty of Medicine. (2014).
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http://umanitoba.ca/faculties/medicine/units/psychiatry/research/about_harvey_chochinov.html

Peter Whitehouse Biography – The Myth of Alzheimer’s. (2014). Retrieved September 27, 2014, from
http://www.themythofalzheimrs.com/authors.html

Daniel George Biography – Penn State Profiles. (2014). Retrieved September 27, 2014, from
https://profiles.psu.edu/profiles/display/112944

Allen Power Biography –  2014 G. Allen Power. (2014). Retrieved September 28, 2014, from
http://www.alpower.net/gallenpower_bio.htm

Roshi Joan Halifax Biography – Upaya Zen Center. (2016). Retrieved June 25, 2016, from
https://www.upaya.org/about/roshi/

Riane Eisler Biography – Riane Eisler (2014). Retrieved September 28, 2014, from
www.rianeeisler.com

Richard Taylor Biography  (2012). Retrieved November 30, 2014, from his website.

John Swinton Biography – The University of Aberdeen, Scotland. (2018). Retrieved December 27, 2018, from
https://www.abdn.ac.uk/sdhp/profiles/j.swinton

Kate Swaffer https://kateswaffer.files.wordpress.com/2020/07/kate-swaffer_cv_july-2020.pdf