Wednesday, October 11, 2017

AlzAuthors: Philip D. Sloane, MD and The Alzheimer's Medical Advisor



By Philip D. Sloane, MD

I was six years into my medical training – a second year resident in family medicine – when I saw the first patient who I now know had Alzheimer’s disease. A middle-aged man brought her in, explaining that she was his mother and that the family was at wits end. His mother didn’t seem sick, he explained, but she couldn’t remember “anything,” made poor decisions, and would wander off and get lost if left alone. In the examining room, she wouldn’t sit down. From my limited history and examination, it was clear that she had a problem involving memory, judgment, and communication. This was not a little forgetfulness, it was a progressive problem that the family was struggling to understand and cope with. I asked my faculty preceptor what to do, and he had no idea. I still remember how helpless I felt, because something was so wrong and yet I had nothing to offer. It was 1977.

In the forty years since then, so much has changed and yet so little. Back then we called it senility and knew almost nothing about it; today we can talk at great length about the different cognitive disorders, of which Alzheimer’s disease is the most prominent, and about amyloid precursor protein, tau microfilaments, PET image studies, and so on. Back then it seemed rare; today it’s a leading cause of death and disability – widespread and widely recognized. But the impact on families hasn’t changed at all.

Since then, much of my career and life has focused on aging, Alzheimer’s disease and other dementias. I obtained certification in geriatric medicine; worked in nursing homes, assisted living and home care settings; authored 18 books, including a textbook of geriatric medicine; and conducted numerous research studies on Alzheimer’s care. My mother, who died at 98, and my father-in-law, who died at 87, both had cognitive disorders and died after a long period of illness. I developed training programs for doctors, nurses, nursing assistants, and other professional caregivers on diagnosis and management of persons with dementia. All of this was part of a general awakening among health professionals of the challenges family caregivers face providing day-to-day care of a loved one.

The Alzheimer’s Medical Advisor: A Caregiver’s Guide was written to help share with family caregivers the practical knowledge that has accumulated during the past 40 years. A major focus of the book is helping family caregivers know what to do when confronted with new or worsening symptoms – from medical problems like abdominal pain, cough, and diarrhea; to behavioral symptoms such as hitting, hollering, or refusing care; to more vague issues like not eating well. It also contains sections on working with the health care system, medications, watching for conditions such as pain and dehydration, and self-care advice for caregivers. An advisory group of nine family caregivers helped shape the book. Dozens of health professionals and students contributed background research, thanks in part to financial support from the National Institutes of Health. To make the book attractive and easy to read, we partnered with a nationally-prominent graphics designer. To field test an early version of the book, 50 family caregivers used it for six months and told us what they liked and what needed to be changed. Our final book was published in July of this year (2017) by Sunrise River Press. Feedback has been gratifyingly positive.

About the Author

Dr. Philip Sloane is the Elizabeth and Oscar Goodwin Distinguished Professor of Family Medicine at the University of North Carolina at Chapel Hill. Jointly certified in family medicine and geriatric medicine, he has served as medical director of a skilled nursing facility, medical director of an Alzheimer's Unit, national advisor on Alzheimer's care for a major nursing home chain, director of a nursing home teaching service, and physician and quality consultant to a Program of All-Inclusive Care for the Elderly. As a researcher, he’s conducted over 20 studies in nursing homes and assisted living, including the research that developed two award-winning training programs, Bathing without a Battle and Mouth Care Without a Battle. He was the recipient of the prestigious Pioneer Award from the national Alzheimer’s Association.

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Purchase The Alzheimer's Medical Advisor

The Alzheimer’s Medical Advisor (Sunrise River Press, 2017) is available from major retailers like Barnes & Noble and Amazon, and from the Sunrise River Press website.


Wednesday, October 4, 2017

Alz Authors: Niki Kapsambelis, The DeMoe Family, and "The Inheritance"



By Niki Kapsambelis


On a drizzly April day in 2009, I walked into a hotel suite in downtown Pittsburgh to meet members of a North Dakota family stricken with a rare genetic mutation that guarantees early-onset Alzheimer’s disease. 

My life changed profoundly that day. Up to that point, I knew precious little about Alzheimer’s. I was a journalist on assignment for the University of Pittsburgh, whose Alzheimer’s Disease Research Center had been studying the DeMoe family for a few years. I was stunned by the magnitude and extent of their courage. Here was a family straight out of middle America, committing itself across generations to serving as research subjects for the most baffling disease of this generation. What science had not been able to solve in more than a century, the DeMoes vowed to defeat – or die trying. 

Just as Alzheimer’s has been a formidable enemy hiding in plain sight, here now were its heroes, living next door in relative obscurity. Nobody knew what they were doing, save a few close friends. I wanted to change that. 

My book, The Inheritance, took five years to research. Not only did I track multiple branches of the family across different states, I also had to retrace the history of the disease from Alois Alzheimer’s discovery in 1906 to the human clinical trials of today. In the process, I met several brilliant people I now consider friends, and was awed by the depth of their commitment.

I also gained a family. The DeMoes were more than any journalist could ever hope for: honest, charming, forthright, and welcoming. Their trust in me was at times overwhelming, and I felt an acute sense of responsibility to be worthy of that trust and to tell their story as faithfully and completely as I could. Not all of the people who started this journey with me lived to see its conclusion, but I felt their presence keenly as I wrote. I was there for births, deaths, weddings, graduations, divorces, goodbyes and new beginnings. I celebrated with one young woman as she learned she did not carry the mutation, and I delivered the eulogies at two funerals for those who did.

As each surviving family member held the book in their hands, I sensed that my task was complete, but my journey was only beginning. Through the sacrifices of this family, I hope to educate the world about the public health crisis we all now face, and inspire them to come together to finish what the DeMoes – and others – have started.

About the Author


Niki Kapsambelis’ work has appeared in publications around the world, including the Washington PostLos Angeles TimesPeople, and the Associated Press. A native of Boston, she now lives in Pennsylvania. The Inheritance is her first book.


Connect with Niki Kapsambelis

Wednesday, September 27, 2017

AlzAuthors: World Alzheimer's Month eBook Sale & Giveaway!



September is World Alzheimer’s Month, the international campaign by Alzheimer's Disease International (ADI) to raise awareness and challenge the stigma that surrounds Alzheimer's and other dementias. In recognition of this event, AlzAuthors has put together an eBook sale and giveaway!

Starting today through September 30th you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children's literature. Many of our books are also available in paperback and audio, so check them out too.

Our books are written from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or more! – to help guide you on your own dementia journey.

Wednesday, September 20, 2017

AlzAuthors: Candy Abbott - I’ve Never Loved Him More: A Husband’s Alzheimer’s, A Wife’s Devotion




By Candy Abbott

“Mom,” my daughter Kim said, “You know you’re going to have to write a book about how you’re dealing with Dad.”


I recoiled at the thought. It was all I could do to get through each day of unknowns and added responsibilities. “No, hon. I have to live this before I can write about it. I have no energy to think about ministering to others right now. Maybe after it’s all over—maybe then, I could think about writing—but not while I’m dealing with all this raw emotion. I’m still finding my way.”

Wednesday, September 13, 2017

AlzAuthors: Christina Britton Conroy, author of "How to Have Fun With Your Aging Parents"


 
By Christina Britton Conroy
When I was twenty-seven, my sixty-year-old mother died of cancer. I was left to care for my temperamental, over-controlling, eighty-year-old father. While grieving for my mother, I was also angry with her for dying young. Taking care of her elderly husband was supposed to have been her job, not mine.

Dad was bored, lonely, and wanted me to come over daily. I was a full-time musical theatre performer struggling to build a career, find a husband, and a start a family of my own. An aging father did not fit into that equation.

We had never had fun together, and I didn’t know what to do with him. I finally figured out that the only thing he enjoyed was talking about himself. I didn’t know it, but reminiscing with him was the start of my work as a Creative Arts Therapist.

Monday, September 11, 2017

What I Read on My Summer Vacation, Part Two



Summer is my favorite season, and my favorite activity during summer is catching up on my reading. This time, I have an extra large stack of books to get through because I picked up 25 additional titles at Book Con, some of my favorite authors recently published, and a number of titles about Alzheimer's and dementia are on my list because I'm an administrator for the AlzAuthors website. Here I'll share a few of the books that made me think, made me laugh, and /or made me wish that I had written them.

Gone: A Girl, A Violin, a Life Unstrung, by Min Kym

Wednesday, September 6, 2017

AlzAuthors: Lori LaBey, founder of Alzheimer's Speaks




By Lori La Bey, founder of Alzheimer’s Speaks

I have to admit caring for my Mother with dementia was not on my bucket list. In fact, the possibility never crossed my mind. Dementia crept into our lives slowly. Its visits were spontaneous and behavior changes subtle, giving me the perfect excuse to live in denial.

Mom’s dementia symptoms began our thirty-year journey down the yellow brick road. We were off to see the Wizard. Yet along the way, I found I had the answers I needed: acceptance, forgiveness, compassion, and unconditional love. All were tools my Mother taught me growing up. I also needed to acknowledge and embrace our new lives. You see, dementia was not just my Mother’s disease. It was “our disease,” hers, mine, and everyone she encountered. I found each of us has a choice on how we are going to
live with dementia.