Resources

Books

For Those Living With Dementia


From the Corner Office to Alzheimer's

By: Michael Ellenbogen

Imagine having a mysterious illness take over your mind. Over the next 10 years, you try to navigate a health care and social system that is not equipped to address what is happening to you. As you slowly lose your ability to think and remember, you have to try to hide the losses to protect you and your family financially. You encounter doctors who are at best baffled, and order a series of nonspecific, redundant, and uninformative studies.  If you want to know what it is like to walk in the shoes of one person with Alzheimer’s, read this book, whether you are a patient, care partner, doctor, or other health provider. It is raw and scary, as well as inspiring, given the self-disclosure. As well as describing, sometimes painfully and in harrowing detail, what we are doing wrong, it can tell us a great deal about what we need to do differently going forward.. Every individual with an illness like Alzheimer’s deserves a prompt, thorough, empathic, and well-informed evaluation. Every family needs and deserves support. Every reasonable research question should be pursued.


I Still Enjoy a Good Laugh - A Guide for the Journey Through Alzheimer's Disease

By: Sharon Gregoire, OTR/L

This unique workbook provides a heartwarming and gentle place for people diagnosed with Alzheimer's Disease to record their hopes, fears, wishes and preferences about the future as a means of preserving a sense of self when faced with the master thief of identity. Using her personal and professional experiences with Alzheimer's Disease, Sharon Gregoire, an Occupational Therapist, guides the reader to understand that there is still joy, personal growth, and meaningful participation in life after diagnosis.


References to Work with Teepa Snow


Clergy Guide to Dementia

By:  Linn Possell & Teepa Snow, MS, OTR/L, FAOTA

What do we believe about dementia? What we believe and what we know about dementia influences how we respond to individuals living with dementia. This guide was written to help clergy understand some of the issues that individuals face when living with dementia due to the degenerative process in the brain in hopes that with this information, they will feel empowered to help individuals affected. It is my hope that with this knowledge clergy will be able to guide their congregations away from fear and toward peace in realizing that while the body may be affected, the spirit continues to be whole and beautiful just as God created it.


Alzheimer's:  A Broken Brain

By Richard, M. Tuscaloosa

These simple pictures and short text are great visual cues to understanding why people do what they do. Created by the University of Alabama Dementia Education and Training Program.


The Comfort of Home: A Complete Guide for Caregivers

By: Maria M. Meyer & R.N. Paula Derr

Burnout — the complete drain of physical, spiritual, and emotional reserves — occurs when a caregiver slips into exhaustion or depression. More and more frequently, the responsibility of caring for the chronically ill child, the disabled spouse, or the aging parent falls on a family member. From the decision to be a caregiver to dealing with day-to-day activities, this guide provides help with every aspect of home care. Also included in this edition are a checklist of tasks, a chapter on self-care and avoiding caregiver burnout, a glossary, and list of helpful resources.


Let's Talk Dementia:  A Caregiver's Guide

By: Carol Howell

For a daughter to take on the challenges of dementia care for her mom, Carol has gone above and beyond and offers support, knowledge, and humor for others who find themselves in this situation. In her book, Let’s Talk Dementia, Carol Howell has written a user-friendly resource to help family members and friends better appreciate the impact of dementia for the person living with it AND for those trying to offer support and help. To create this resource, Carol did more than just reflect on her journey with her mom through this condition. She also decided to become a SKILLED caregiver and knowledgeable partner for her mom, AND she became an useful resource for others. Carol shares her experiences, adds her developed knowledge and skill, and then injects moments to pause, to step back, to breathe, and to laugh. She adds in simple, positive humorous pieces that may help others take, what can be an overwhelming sense of frustration and loss and turn the situation around to see the ‘funny side’, the lighter note, the other road to travel.


Person Centered Care


Dementia Beyond Drugs: Changing the Culture of Care, Second Edition

By: G. Allen Power, MD

Revolutionize the way you provide dementia care with this empowering guide to achieving culture change.

Reducing the use of psychotropic drugs in the symptomatic treatment of dementia is key to successfully implementing compassionate, person-centered practices in your organization and this book shows clearly why and how it can be done. The revised second edition of this award-winning resource introduces new research, language, and examples to reinforce the core message that antipsychotic medications are not the solution to ease the distress experienced by individuals living with dementia. Outlined here is the information and inspiration you need to provide alternative solutions for individualized support and care.


Best Friends Approach to Dementia Care, Second Edition

by Virginia Bell, M.S.W. and David Troxel, M.P.H.

Successfully implement this relationship-centered approach to dementia care that builds on the essential elements of friendship—respect, empathy, support, trust, and humor.

For decades the acclaimed Best Friends™ approach has been widely recognized for helping people with Alzheimer’s and other dementias experience meaningful engagement and dignity in all aspects of their lives. In this completely revised and expanded second edition, care partners learn how to apply the core principles of the approach through practical tips and instructive examples of Best Friends in action. An all-new section also provides a roadmap for creating and sustaining a Best Friends program.


The Mindful Caregiver:  Finding Ease in the Caregiving Journey

By: Nancy Kriseman

Caregiving can be enormously challenging, terrifically rewarding, and potentially draining. Caregivers often wonder how they will navigate the tumultuous waters of caregiving and not lose themselves completely. The Mindful Caregiver highlights two major approaches to help transform the journey: adopting a practice of mindfulness, which helps caregivers become more self-aware and fully present with the person with whom they are caring, and honoring “the spirit-side” of caregiving which offers new ways of connecting to one another. These approaches take into account not just the needs of the care recipient, but also the needs of the caregiver and other people in his/her life.
 


I'm Still Here: A New Philosophy of Alzheimer's Care

By: John Zeisel

There currently is no cure for Alzheimer’s disease— though it can be treated. For the last fifteen years, John Zeisel, Ph.D. has spearheaded a movement to treat Alzheimer’s non-pharmacologically by focusing on the mind’s strengths. A revolutionary new approach to Alzheimer’s care, focusing on a patient’s strengths to maintain connections with others and the world.


Alzheimer's A to Z: A Quick-Reference Guide

By: Jyette Lokvig & John Becker

When you care for someone with dementia, finding ways to meet your own needs as well as those of the person for whom you care is a daily challenge that raises questions on a range of topics. This book combines the medical expertise of a doctor with practical wisdom of an experienced caregiver into an easily accessible guide, a constant and faithful companion for anyone working with dementia.

Alzheimer's A to Z is organized like an encyclopedia, in a convenient alphabetical format that allows you to find the information you need when you need it. Practical entries treat subjects like dressing, transporting, and talking with people with Alzheimer's. Discussions of medical and neurological aspects of the disease treat topics like the functions of short and long-term memory systems. Psychological entries explore emotional and communication issues related to Alzheimer's care. Each entry is engagingly written in direct, uncomplicated language that makes even difficult concepts easy to understand. The tone of the book is positive and constructive, making it as easy to give as it is to read.


Alzheimer's: A Beautiful Spirit Celebrated

By: Linn Possell

When my mother was diagnosed with dementia, my life changed for the better! My life became richer, more complete and filled with joy as I watched the triumph of my mother's spirit. Dementia may have affected her physically but it could not touch her beautiful spirit. What is eternal about our life is not our physical experience but our spiritual essence and therefore the depth of our relationship grew into something more than I ever could have imagined. Life with someone who has Alzheimer's and dementia can be a celebration and an important time. This disease will either be a source of suffering or a source of joy depending on whether we connect with our spirit and the spirit of those around us. It is our choice.


There's Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer's

By: Michael Castleman, Matthew Naythons, Dolores Gallagher-Thompson

In recent years, remarkable progress has been made in treating, managing, and preventing dementia. With information about the latest medical advances, coping strategies for caregivers, and affecting accounts from families dealing with this disease, There's Still a Person in There presents a new understanding of Alzheimer's-one that is optimistic, courageous, and comforting. "One of the best sources of help for Alzheimer's since...The 36-Hour Day. An absolute standout."-Kirkus


Caregiving With Strength

By:  Eleanor Silverberg, BA Psych, MSW, RSW

Caregiving with Strength was written for family care providers of adults with chronic, progressive illness and the professionals who service them. Awareness is raised about the loss and grief experienced due to the illness and its impact on caregiving behavior. As a social worker, coach and grief specialist, Eleanor Silverberg transports readers into a personal development cocoon, offering content for reflective thought to encourage personal growth. The elements of a strength-building regimen are presented, focusing on the grief facilitation element, as it is interconnected with the other strength-building elements. The grief is also portrayed as a powerful resource for personal transformation using an innovative approach that Eleanor developed specifically for caregivers to address their losses. By providing tools, insightful information, and caregiver anecdotes, a window of opportunity is opened, welcoming transformation that leads to enhanced resiliency and growth. Ultimately the caregivers benefit as well as the recipients of their care. 


Personal Experience & Stories


Pathways: A Guidebook for Dementia & Alzheimer's Family Caregivers

By: Kae Hammond

If you are caring for someone with Alzheimer's Disease or Related Dementias, Pathways: A Guidebook for Dementia & Alzheimer's Family Caregivers will be your lifeline. Written with passion, compassion and honesty, the Pathways guidebook is a must-read written by a caregiver just like you who understands the inordinate challenges of caring for a diagnosed loved one.


A Funny Thing Happened on My Way to the Dementia Ward: Memoir of A Male CNA

By: Charles Schoenfeld

Remarkable insights about skilled nursing care from an insider! This married father of four retires, studies, then becomes a CNA. A must-read for every family struggling with the idea of moving a loved one into a nursing home. Charles writes about his friends, both those he works with and those he cares for, detailing the raw needs of basic care, compassion, understanding, and human touch that those with dementia are often living with. It is clear that he also truly sees the intelligence, wit, and personality of the people he has came to know so well. His experiences tell a story that often sounds like fiction, but for those who already know Alzheimer’s Disease, it is a story that both breaks your heart and fills it with love.


Coach Broyles Playbook for Alzheimer's Caregivers

By: Frank Broyles

My name is Frank Broyles, Athletic Director Emeritus for the University of Arkansas Razorbacks. Much like you, my life has been touched by Alzheimer’s Disease. When my wife, Barbara, was diagnosed with Alzheimer’s, we didn’t know much about the disease or the impact it would have on our lives. What I did know was that Alzheimer’s was not going to destroy our love for life. Our family came together and decided to focus on what we did have instead of what we didn’t have.


Alzheimer's Days Gone By:For Those Caring For Their Loved Ones

By: Deanna Lueckenotte, LBSW, CALM, LNFA

This book is designed to be an easy read for all dealing with someone with Alzheimer's; from the caregiver in the personal home to professional caregivers working in the long term care setting. It includes an overview of dementias as well as ways to cope with behaviors.  Communication is also an important aspect covered. Research updates as well as possible resources for the caregiver are included. Activities of daily living and a lifestyle enhancement program are featured. A brief section on the medical side is included but again this book is not designed from the clinical prospective and its focus is toward helping caregivers cope with their current situation of taking care of someone with Alzheimer's. Short summaries of caregivers that found their "light in the tunnel" are included as the last chapter. The first chapter is about taking care of your self because the caregiver will find it a difficult feat to continue to care for someone with Alzheimer's if taking care of themselves is not a priority. The overall goal of the book is to give the caregiver a compass or light to help through the day to day care of the person with Alzheimer's.


Susie and Me Days: Joy in the Shadow of Dementia

By: Susan L. Garbett

This candid, intimate, and self-reflective account brings to life the relationship between a father and daughter as they journey through the murky haze of dementia. The story vividly describes for families and caregivers the everyday challenges and stresses they may encounter. It provides practical strategies and personal interventions that open pathways to joyful, rewarding experiences and discoveries that preserve dignity and enhance the patient's and caregiver's quality of life.


Dementias Other Than Alzheimer's


Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia

By: Helen Buell Whitworth and James A. Whitworth 

Lewy Body Dementia (LBD) can start with or without Parkinson’s. Some symptoms, including those often treated with antipsychotic and anti-anxiety drugs, can appear before cognitive symptoms. As the disorder advances, a sensitivity to these drugs becomes more and more likely. Fortunately, there are a multitude of alternative therapies and techniques that can help. The Whitworth's newest book, Managing Cognitive Issues, is printed in large text and easy-to-read language. It describes LBD and its early symptoms and addresses all of those non-motor symptoms that are so distressing to deal with and so hard to treat. It has a large chapter about drug sensitivity, a section that describes a variety of alternative treatments and techniques and a 13-page list of resources, including links to several lists of drugs most likely to be troublesome.


A Caregiver’s Guide to Lewy Body Dementia

By: Helen Buell Whitworth and James A. Whitworth 

Lewy Body Dementia (LBD) is often confused with Alzheimer’s or Parkinson’s. However, it has many other symptoms, such as drug sensitivities, mood disorders and hallucinations. Families often find these more difficult to deal with than the dementia itself. A Caregiver’s Guide to Lewy Body Dementia uses everyday language and personal experiences to present a comprehensive view of this disorder and how to deal with it. This easy-to-read book received a 2012 Caregiver Friendly Award from Today's Caregiver Magazine and has over 90 five-star reviews on Amazon. 


What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia

By: Gary & Lisa Radin

Although the public most often associates dementia with Alzheimer’s disease, the medical profession now distinguishes various types of "other" dementias. This book is the first comprehensive guide dealing with frontotemporal dementia (FTD), one of the largest groups of non-Alzheimer’s dementias. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD sufferers.


Fiction Books Relating to the Dementia Experience


Preston

By: Terry Leeder

Something is not quite right. Preston has dealt with all sorts of difficult situations, but can he deal with this one? What is it like to have to cope with the gradual disappearance of all the abilities you have valued your entire life? We see through Preston's eyes as he copes with all the wrenching changes in his body and mind, and as he describes what he thinks and feels. But the story he tells is also a story of love, the love of two married people for each other, a love that is tested by a disease that changes Preston in the most profound way imaginable.


Left Neglected

By: Lisa Genova

Sarah Nickerson, like any other working mom, is busy trying to have it all. One morning while racing to work and distracted by her cell phone, she looks away from the road for one second too long. In that blink of an eye, all the rapidly moving parts of her over-scheduled life come to a screeching halt. After a brain injury steals her awareness of everything on her left side, Sarah must retrain her mind to perceive the world as a whole. In so doing, she also learns how to pay attention to the people and parts of her life that matter most.  In this powerful and poignant New York Times bestseller, Lisa Genova explores what can happen when we are forced to change our perception of everything around us. Left Neglected is an unforgettable story about finding abundance in the most difficult of circumstances, learning to pay attention to the details, and nourishing what truly matters.


Still Alice

By: Lisa Genova

Still Alice is a compelling debut novel about a 50-year-old woman's sudden descent into early onset Alzheimer's disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University. Alice Howland, happily married with three grown children and a house on the Cape, is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer's disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away.


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Positive Approach to Care

Teepa Snow’s philosophy and education is reflective of her life-long journey professionally caring for and personally living with various forms of dementia. This person-centered approach evolved to meet the complex and unique needs of individuals using effective and structured technique. Teepa and her company strive to grow appreciation of differences that will lead to better care and support of those living with changing abilities.