As a caregiver, you will always have questions. What expectations should I have of the person I’m caring for? How can I make our home safer for them? Why does my care partner become more agitated in the evening?

We provide answers to questions like these at educational events we hold in Sonoma Valley. Some of the events, like the four-hour Caring for A Loved One with Memory Loss, are Alzheimer’s Association programs. Others will be developed by us.

The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline

by Dale Bredesen. M.D.

Everyone knows someone who has survived cancer, but until now no one knows anyone who has survived Alzheimer’s Disease.

In this paradigm shifting book, Dale Bredesen, MD, offers real hope to anyone looking to prevent and even reverse Alzheimer’s Disease and cognitive decline. Revealing that AD is not one condition, as it is currently treated, but three, The End of Alzheimer’s outlines 36 metabolic factors (micronutrients, hormone levels, sleep) that can trigger “downsizing” in the brain. The protocol shows us how to rebalance these factors using lifestyle modifications like taking B12, eliminating gluten, or improving oral hygiene.

The results are impressive. Of the first ten patients on the protocol, nine displayed significant improvement with 3-6 months; since then the protocol has yielded similar results with hundreds more. Now, The End of Alzheimer’s brings new hope to a broad audience of patients, caregivers, physicians, and treatment centers with a fascinating look inside the science and a complete step-by-step plan that fundamentally changes how we treat and even think about AD.

Copies available through Sonoma County Library System:
29 books, 2 ebooks, 2 Audiobooks

Amazon Link: The End of Alzheimer’s

The XX Brain: The Groundbreaking Science Empowering Women to Maximize Cognitive Health and Prevent Alzheimer’s Disease

by Lisa Mosconi and Maria Shriver

The first book to address cognitive enhancement and Alzheimer’s prevention specifically in women–and to frame brain health as an essential component of Women’s Health.

In this revolutionary book, Dr. Lisa Mosconi, director of the Women’s Brain Initiative at Weill Cornell Medical College, provides women with the first plan to address the unique risks of the female brain.

Until now, medical research has focused on “bikini medicine,” assuming that women are essentially men with breasts and tubes. Yet women are far more likely than men to suffer from anxiety, depression, migraines, brain injuries, and strokes. They are also twice as likely to end their lives suffering from Alzheimer’s disease, even when their longer lifespans are taken into account. But in the past, the female brain has received astonishingly little attention and was rarely studied by medical researchers– resulting in a wealth of misinformation about women’s health.

The XX Brain confronts this crisis by revealing how the two powerful X chromosomes that distinguish women from men impact the brain first and foremost and by focusing on a key brain-protective hormone: estrogen.

Taking on all aspects of women’s health, including brain fog, memory lapses, depression, stress, insomnia, hormonal imbalances, and the increased risk of dementia, Dr. Mosconi introduces cutting-edge, evidence-based approaches to protecting the female brain, including a specific diet proven to work for women, strategies to reduce stress, and useful tips for restorative sleep. She also examines the controversy about soy and hormonal replacement therapy, takes on the perils of environmental toxins, and examines the role of our microbiome. Perhaps best of all, she makes clear that it is never too late to take care of yourself.

The XX Brain is a rallying cry for women to have full access to information regarding what is going on in their brains and bodies as well as a roadmap for the path to optimal, lifelong brain health.

Copies available through Sonoma County Library System:
1 book

Amazon Link: The XX Brain

The Alzheimer’s Prevention and Treatment Diet

by Richard S. Isaacson, MD

Alzheimer’s disease (AD) is a type of dementia that can be very hard on both the patient and the caregiver. Currently, five million Americans have been diagnosed with AD―and that number is likely to triple by 2050. While the cause of Alzheimer’s disease is still a mystery, new research has increased our knowledge of certain aspects of the disease. Perhaps most significant, studies show that proper diet may make a real difference, not only in slowing the progression of AD, but also in preventing it. In this groundbreaking book, a notable expert on Alzheimer’s disease has teamed up with a leading researcher of nutrition to create a unique guide to understanding and managing this serious condition. The Alzheimer’s Prevention and Treatment Diet outlines a cutting-edge nutritional program that will be of interest both to Alzheimer’s patients and to anybody who wants to maintain optimal memory and mental agility for years to come.

Copies available through Sonoma County Library System:
2 books

Amazon Link: The Alzheimer’s Prevention and Treatment Diet

Self-Help for Caregivers: Reduce stress and improve life using a modern version of the ancient I Ching

by Willy Norup

Written by Sonoma native Willy Norup, Self-Help for Caregivers is a modern interpretation of the wisdom in the ancient I Ching as seen from a caregiver’s point of view. It is a wise and helpful daily companion for enhancing the quality of life for family and professional caregivers. In a few minutes—making use of the power of synchronicity—you will be able to receive meaningful and concise answers to any deep-felt questions about what is happening in your caregiver life and what is likely to hap-pen in the future. It will help you change your life as a caregiver from a stressful burden to an enriching blessing with hope for the future. You will be inspired to maintain an active and fulfilling personal life while dealing compassionately and effectively with seemingly endless and draining chores and challenges of caregiving.

Copies available through Sonoma County Library System.

Amazon Link: Self-Help for Caregivers: Reduce stress and improve life using a modern version of the ancient I Ching

If you have books on brain health or cognitive enhancement that you would recommend, please email your suggestions to info@carepartnersinitiative.org.

Creative Care: A Revolutionary Approach to Dementia and Elder Care

In Creative Care, Anne Basting lays the groundwork for a widespread transformation in our approach to elder care and uses compelling, touching stories to inspire and guide us all—family, friends, and health professionals—in how to connect and interact with those living with dementia.

A MacArthur Genius Grant recipient, Basting tells the story of how she pioneered a radical change in how we interact with our older loved ones. Now used around the world, this proven method has brought light and joy to the lives of elders—and those who care for them. Here, for the first time, everyone can learn these methods. Early in her career, Basting noticed a problem: today’s elderly—especially those experiencing dementia and Alzheimer’s— are often isolated in nursing homes or segregated in elder-care settings, making the final years of life feel lonely and devoid of meaning. To alleviate their sense of aloneness, Basting developed a radical approach that combines methods from the world of theater and improvisation with evidence-based therapies that connect people using their own creativity and imagination.

Rooted in twenty-five years of research, these new techniques draw on core creative exercises—such as “Yes, and . . .” and “Beautiful Questions.” This approach fosters storytelling and active listening, allowing elders to freely share ideas and stories without worrying about getting the details “correct.” Basting’s research has shown that these practices stimulate the brain and awaken the imagination to add wonder and awe to patients’ daily lives—and provide them a means of connection, both with the world and with those caring for them. Creative Care promises to bring light and hope to a community that needs it most.

Copies available through Sonoma County Library System:
4 books, eBook

Amazon Link: Creative Care

Reclaiming Joy Together: Building a Volunteer Community of Real Hope for Those with Dementia

There is a friendship revolution happening in dementia care across the country.

Since the birth of the Respite Ministry in 2012 at a southern church in Montgomery, Alabama, their outreach to friends and neighbors living with dementia has been innovative and all welcoming. Originally a faith-born ministry, Respite’s place in the community and now the world has been an open-arms embrace—a great welcoming to friends, neighbors, and strangers of any ethnicity or faith who are living with dementia of any variety.

Respite is mainly staffed with volunteers. Director Daphne Johnston calls these volunteers the forerunners in dementia care the force that drives this friendship revolution. “In the Respite care environment everyone is a volunteer. Everyone needs help. Everyone is needy because he or she needs to either receive help or give help.”

Daphne Johnston knows that “Volunteers make a Respite community thrive in any locale. It is an adaptable model that can be tailored to your community and fit your resources and gifts. This book Reclaiming Joy Together is the current summary of what we at Respite have learned, become, and it explains our vision for the future. The model is now replicated in 17 other Respite programs with modifications for their own local neighborhood. Different names are chosen by each community, but the core values of volunteer Respite are all guided by one driving purpose: to come alongside others who need the help of neighbors and new friends.”

Amazon link: Reclaiming Joy Together

The 36-Hour Day: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss

Through five editions, The 36-Hour Day has been an essential resource for families who love and care for people with Alzheimer disease. Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs. Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new information on
• devices to make life simpler and safer for people who have dementia
• strategies for delaying behavioral and neuropsychiatric symptoms
• changes in Medicare and other health care insurance laws
• palliative care, hospice care, durable power of attorney, and guardianship
• dementia due to traumatic brain injury
• choosing a residential care facility
• support groups for caregivers, friends, and family members

The central idea underlying the book―that much can be done to improve the lives of people with dementia and of those caring for them―remains the same. The 36-Hour Day is the definitive dementia care guide.

Copies available through Sonoma County Library System:
13 Books

Amazon Link: The 36-Hour Day: The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss

Caring for a Loved One with Dementia: A Mindfulness-Based Guide for Reducing Stress and Making the Best of Your Journey Together

Caring for a Loved One with Dementia is a unique and compassionate guide that offers an effective mindfulness-based dementia care (MBDC) program to help you meet your own needs and lower stress levels while caring for your loved one.

If you’re caring for a loved one with dementia, you know firsthand the challenge of providing care while maintaining your own well-being. Caring for a Loved One with Dementia offers a compassionate and effective mindfulness-based dementia care (MBDC) guide to help you reduce stress, stay balanced, and bring ease into your interactions with the person with dementia.

In this book, you’ll learn how to approach caring with calm, centered presence; respond to your loved one with compassion; and maintain authentic communication, even in the absence of words. Most importantly, you’ll discover ways to manage the grief, anger, depression, and other emotions often associated with dementia care, so you can find strength and meaning in each moment you spend with your loved one.

Copies available through Sonoma County Library System:
2 books, 1 ebook

Amazon Link: Caring for a Loved One with Dementia

Keeping Love Alive as Memories Fade: The 5 Love Languages and the Alzheimer’s Journey

by Debbie Barr

Across America and around the world, the five love languages have revitalized relationships and saved marriages from the brink of disaster. Can they also help individuals, couples, and families cope with the devastating diagnosis of Alzheimer’s disease (AD)?
Coauthors Chapman, Shaw, and Barr give a resounding yes. Their innovative application of the five love languages creates an entirely new way to touch the lives of the five million Americans who have Alzheimer’s, as well as their fifteen million caregivers. At its heart, this book is about how love gently lifts a corner of dementia’s dark curtain to cultivate an emotional connection amid memory loss.
This collaborative, groundbreaking work between a healthcare professional, caregiver, and relationship expert will: Provide an overview of the love languages and Alzheimer’s disease, correlate the love languages with the developments of the stages of AD, discuss how both the caregiver and care receiver can apply the love languages, address the challenges and stresses of the caregiver journey, offer personal stories and case studies about maintaining emotional intimacy amidst AD. Keeping Love Alive as Memories Fade is heartfelt and easy to apply, providing gentle, focused help for those feeling overwhelmed by the relational toll of Alzheimer’s. Its principles have already helped hundreds of families, and it can help yours, too.

Copies available through Sonoma County Library System:
1 Audiobook

Amazon Link: Keeping Love Alive

Alzheimer’s Disease – Music Activities for Caregivers – How to Integrate Movement Therapy and Touch Therapy to Ease the Disease – An Elderly Care Professional’s Guide

by Kathleen Downey

This is the only book written for caregivers and professionals about Alzheimer’s disease that explains how caregivers can implement the therapeutic interventions of music, movement and touch to significantly improve behavior, decrease depression and improve quality of life.

Kathleen Downey writes poignantly about the emotional, heartwarming experiences of thousands of men and women that she has touched with her compassionate approach to dementia care. These simple, therapeutic interventions will assist you, the caregiver, in providing meaningful experiences for people with Alzheimer’s disease. This book will give you inspiration, encouragement and insight.

The non-pharmacological, cost effective, no side effect remedies of music, movement and touch that Kathleen has been successfully using since 2001, can be experienced immediately. Follow her psycho-social approach and you’ll be using the valuable tools she suggests with successful results. She advocates the need for human connection, compassion and being present with memory impaired people to enhance their well being.

The inspiring stories and informative facts in this dementia care guide will give the answers to your questions, “What can I do to decrease wandering and agitation?”, “How can I reduce the stress and frustration in my own life?” and “How can I encourage them to engage in their passions once again so that they can experience real quality of life?”

Copies available through Sonoma County Library System.

Amazon Link: Alzheimer’s Disease – Music Activities for Caregivers

The Best Friends Approach to Dementia Care

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. Become familiar with: The building blocks of the approach, including the Dementia Bill of Rights and the concept of relationship-centered care The core tenets of Best Friends: the Life Story, skilled communication, and caregiving Knack New approaches to minimizing challenging behaviors and to creating activities that produce true engagement How to use Best Friends in a variety of care settings Effective ways to involve families and volunteers An approach that’s embraced around the world! Make each day reassuring, enjoyable, and secure for the people in your care with this simple, compassionate approach to dementia care.

Copies available through Sonoma County Library System: None currently. Requested.

Amazon link: The Best Friends Approach to Dementia Care

If you have books on caregiving that you would recommend, please email your suggestions to info@carepartnersinitiative.org

The Small Guide to Alzheimer’s Disease

by Small Gary MD

From New York Times bestselling author and expert on neuroscience, memory, Alzheimer’s Disease and dementia,  The Small Guide to Alzheimer’s Disease provides a comprehensive overview of Alzheimer’s Disease, dementia, and related disorders — along with the latest treatment solutions from conventional and alternative therapies to new scientific discoveries, lifestyle changes and interventions.

Alzheimer’s Disease and related dementia illnesses are among the most frightening diagnoses in the US, affecting nearly six million adult Americans. This accessible guide starts with providing readers with an overview of Alzheimer’s Disease and dementia: what it is, who gets it, how to recognize it, major causes (genetics, environment, etc.). Dr. Gary Small is also the bestselling author of The Memory Bible and The Memory Prescription, as well as Director of the UCLA Longevity Center.

Copies available through Sonoma County Library System:
6 books

Amazon Link: The Small Guide to Alzheimer’s Disease 

Contented Dementia

by Oliver James

A groundbreaking and practical method for managing dementia that will allow both sufferer and carer to maintain the highest possible quality of life, throughout every stage of Alzheimer’s

Dementia is a little-understood and currently incurable illness, but this guide shows how much can be done to maximize the quality of life for people with the condition. A person with dementia will experience random and increasingly frequent memory blanks relating to recent events; feelings, however, remain intact, as do memories of past events, and both can be used in a special way to substitute for more recent information that has been lost. The SPECAL method (Specialized Early Care for Alzheimer’s) outlined in this book works by creating links between past memories and the routine activities of daily life in the present. Drawing on real-life examples and user-friendly, tried-and-tested methods, this lifesaver provides essential information and guidance for carers, relatives, and professionals.

Copies available through Sonoma County Library System:
1 Book

Amazon Link: Contented Dementia

If you have books on dementia that you would recommend, please email your suggestions to info@carepartnersinitiative.org

Alzheimer’s Disease Facts and Figures, an annual report released by the Alzheimer’s Association®, reveals the burden of Alzheimer’s and dementia on individuals, caregivers, government and the nation’s health care system.

The accompanying Special Report examines the experiences, exposure, training and attitudes related to dementia care among primary care physicians and others.

This infographic highlights key statistics and trends:

CDC – Important Facts about Falls

Each year, millions of older people—those 65 and older—fall. In fact, more than one out of four older people falls each year, but less than half tell their doctor. Falling once doubles your chances of falling again.

This article explores:

  • Why falls are serious and costly
  • What can happen after a fall
  • What conditions make you more likely to fall
  • What you can do to prevent falls

Read the full article here.

Alzheimer’s Association Home Safety Checklist

Individuals living with Alzheimer’s disease and other dementias are at increased risk for injury or harm in certain areas of the home. As the disease progresses, they may become unaware of the dangers that exist. Consider taking the following precautions to create a safe environment, which may prevent dangerous situations from occurring and help maximize the person’s independence for as long as possible.

Download the PDF here.

CDC Home Fall Prevention Checklist for Older Adults

The CDC also produces a useful checklist to find and fix hazards in your home.

Download the PDF here.

On May 2, 2020 we produced a newsletter on this topic that contains our recommendations for making homes safer for individuals experiencing cognitive decline. You can access it here.

Reduce Your Risk of Falling

Learn why “I’ve fallen and I can’t get up” is no joke. Dot Boyd, Senior Safety Specialist and Bill Essert, Certified Aging in Place Specialist explain why falls happen and what to do in your home to minimize the risks of falling.

This presentation explores:

  • Who tends to fall and why
  • What increases your risk of falling
  • What you can do to reduce your risk of falling
  • Safety checklists
  • Tools and resources to preserve your independence

View the PDF version of the presentation here.
View the Video here.

Falls Prevention in People with Dementia – UCLA Health

Dr. David Ganz discusses the best ways to prevent falls in older people, with a particular focus on people with dementia. This talk is especially intended for caregivers who are concerned about their loved one’s risk of falls and fall-related injuries.

What is a clinical trial?

Clinical trials are research studies performed in people that are aimed at evaluating a medical, surgical, or behavioral intervention. They are the primary way that researchers find out if a new treatment, like a new drug or diet or medical device (for example, a pacemaker) is safe and effective. Often a clinical trial is used to learn if a new treatment is more effective and/or has less harmful side effects than the standard treatment.

Other clinical trials test ways to find a disease early, sometimes before there are symptoms. Still others test ways to prevent a health problem. A clinical trial may also look at how to make life better for people living with a life-threatening disease or a chronic health problem. Clinical trials sometimes study the role of caregivers or support groups.

Before the U.S. Food and Drug Administration (FDA) approves a clinical trial to begin, scientists perform laboratory tests and studies in animals to test a potential therapy’s safety and efficacy. If these studies show favorable results, the FDA gives approval for the intervention to be tested in humans.

How might I find a clinical trial?

The most comprehensive list of clinical trials can be found at ClinicalTrials.gov. This is a free service of the National Institutes of Health (NIH) and is maintained by the National Library of Medicine (NLM).

The ClinicalTrials.gov website provides current information about clinical research studies to patients, their families and caregivers, health care professionals, and the public. Each study record includes a summary of the study protocol, including the purpose, recruitment status, and eligibility criteria. Study locations and specific contact information are listed to assist with enrollment. Information on ClinicalTrials.gov is provided and updated by the sponsor or principal investigator of the clinical study.

The Find Studies section of the site includes different options for finding studies, along with instructions on how to find the studies you are looking for and how to read study records.

ClinicalTrials.gov is updated daily. Please check the site frequently for new information.  As of March 22, there are 266 Alzheimer’s Disease trials in the US (63 in California, 16 in San Francisco, 6 in Sacramento) that are or soon will be recruiting and enrolling qualified participants.

In addition, the Alzheimer’s Association supports TrialMatch® which is a free, easy-to-use clinical studies matching service that generates customized lists of studies based on user-provided information. You can easily see what studies you may qualify for. The continually updated database contains more than 250 studies, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted at sites across the country and online.

Before participating in any clinical trial, talk to your health care provider and learn about the risks and potential benefits.

The challenge

Recruiting trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer’s treatments. Individuals with dementia, caregivers and healthy volunteers are all urgently needed to participate in clinical trials focused on Alzheimer’s and other dementias. In particular women, who are at higher risk of Alzheimer’s and traditionally under represented in clinical research, are needed participants. In fact, The Women’s Alzheimer’s Movement exists for just this reason.

Retention of participants after enrollment is also a challenge as distance from the medical center, health and mobility challenges, and economic concerns contribute to a high dropout rate. This is particularly true for older adults. For example, Hawthorne Effect is addressing this challenge by moving clinical trial screening and follow up out of the clinic and into the home. Remote and telemedicine visits are gaining momentum and being accelerated by COVID-19, so assume your participation can be enabled if you meet enrollment qualifications.

Are there ways to contribute to Alzheimer’s research without participating in a trial?

If you are 18 years or over, you can help the Brain Health Registry speed up the discovery of treatments for Alzheimer’s, Parkinson’s, depression, PTSD and other brain disorders. BHR is building a large pool of potential participants in clinical trials. The brain tests and questionnaires that they administer to participants annually can help identify those that might benefit from potential diagnostic tools or therapies.  Having a pre-screened applicant pool can take years off trials by reducing trial enrollment time and associated costs. In addition, if clinical trials enroll participants from the BHR, the scientific team may be able to see changes in brain functioning that occurred before the trial began. This longitudinal data improves the quality of research. When trials are faster, better, and less expensive, more research can be conducted, hopefully leading to faster breakthroughs. If you are interested in registering, use this link.

The Alzheimer Prevention Trials (APT) Webstudy is another online registry designed to accelerate enrollment for Alzheimer’s disease clinical trials by identifying and tracking individuals who may be at higher risk for developing Alzheimer’s dementia. The APT Webstudy monitors participants through regular online memory testing, which they can do from the comfort and convenience of their own home and then matches them to Alzheimer’s disease prevention trials that they might consider. The APT Webstudy does not require participants to take medication and is not a clinical trial itself; it’s what we call an “observational” study, meaning we look at (or observe) changes over time in measures of memory function. If you are interested in registering or learning more, use this link.

Where can I learn more?

In addition, being patient is a trusted website that presents the latest news on Alzheimer’s and brain health research. Register here to receive their weekly newsletter.

CarePartners is a growing one-stop resource for those who take care of dementia patients, with a hotline, free support groups, day programs and workshops.
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CarePartners Initiative is doing what the government can’t: helping to make sense of memory care from insurance to feelings of isolation.
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