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Dementia Resources and Support

Journeying Together

Dementia Resources and Support Center

Welcome Caregivers!  Equipping You with Tools, Insight, and Community to Navigate the Dementia Journey

Dementia Caregiver

Welcome
Caregives

his resource page is FREE and here to assist you in your journey of caring for someone with dementia. However, we know there are many other helpful resources out there waiting to be discovered. That's where you come in!

We invite you to share any additional resources you've found valuable. Whether it's a website, support group, or informational material, your input can make a difference. Together, we can expand this repository of knowledge and support, ensuring no caregiver faces dementia alone.

Please feel free to forward any resources you think should be included via email at bhuelat211@gmail.com. Your contributions will help us build a stronger, more comprehensive resource hub for caregivers everywhere.

Dementia Caregivers

Top Tips for Caregiving

Welcome to "Top Tips for Caregiving"! These concise tip sheets offer 10 key best practices across various caregiving needs, from technology interventions to managing caregiver guilt. Each sheet provides actionable strategies to empower caregivers, ensuring they can provide optimal care while prioritizing their own well-being. Explore these tips for clarity, comfort, and confidence on your caregiving journey.

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01

10 Key Strategies to Manage Caregiver Guilt

02

Top 10 Considerations for Transition to Care Facilities

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03

Top 10 Sensory Engagement Interventions

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04

Top 10 Safety Tips for Dementia Caregiving

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My Favorite Books for
Dementia Support

I've curated this collection with caregivers like you in mind, hoping that these books will provide comfort, encouragement, and guidance as you navigate the ups and downs of dementia caregiving. Whether you're seeking reassurance, practical tips, or simply a moment of solace, I believe you'll find something meaningful within these pages.

Taming the Chaos of Dementia: A Caregiver's Guide to Interventions that Make a Difference

Taming the Chaos of Dementia, Huelat, B and Pochron, S. (2023)

Rowman and Littlefield. 

Barbara Huelat explores options in human engagement, the experience of destinations, positive distractions, familiar settings, furnishings, light, color, technology, nature, and the emotion of the senses. She offers design interventions that support the family caregivers in functional and emotional outcomes. No cure exists for dementia, but the tips, tools, strategies and suggestions include here provide tools for caregivers and those with dementia to make the experience more comfortable and calm.

Learning to Speak Alzheimers

Houghton Miffin Harcourt Publishing Co.

Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between care partners and patients and has proven successful with thousands of people living with dementia.

Caring Spirit

 

Convent Books. 

Caring for the Spirit of the Family Caregiver: Forty Days of Reflections to Strengthen and Encourage

Keeping Love Alive

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.

When Caregiving Calls

Rivertown's Books.

Caring for a parent, spouse, or relative who cannot care for themselves due to age, infirmity, or illness is one of the noblest human activities. It's also one of the most stressful, posing challenges that can be painful, confusing, frustrating, and deeply rewarding-sometimes all at once. When Caregiving Calls is an invitation to a deep conversation about caregiving and its meaning for you. 

Creative Care

Harper One

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.

Floating in the Deep End

Liveright Publishing Corp.

With the heartfelt prose of a loving daughter, Patti Davis provides a life raft for the caregivers of Alzheimer’s patients.

“For the decade of my father’s illness, I felt as if I was floating in the deep end, tossed by waves, carried by currents, but not drowning,” writes Patti Davis in this searingly honest and deeply moving account of the challenges involved in taking care of someone stricken with Alzheimer’s.

Memory Cafe

Endless Circle Press.

The ultimate guide to starting and succeeding with an Alzheimer's or memory café, the most innovative project to support people living with dementia and their caregivers. A café meets once or twice a month for a break from the pressure of living with or caring for someone with dementia. It offers everyone a time and place for everyone to leave the disorder and share something positive. This book describes numerous different cafés, whose leaders share their experiences, ideas and suggestions.

36 Hour Day

The 36-hour Day

Mace, Nancy and Rabins (2021)

Johns. Hopkins Press.

For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer's, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care. Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the disease, it is widely considered to be the most detailed and trusted book available.

Dementia Prevention

Emily Clionsky, MD, and Mitchell Clionsky, PhD, are a physician and neuropsychologist couple who have cared for their own parents with dementia, created a test used by doctors to measure cognitive function, and treated more than 25,000 patients with cognitive impairment. In Dementia Prevention, they combine the most current scientific findings about Alzheimer's disease and other dementias with their experience to present a practical guide that empowers you to improve your brain's future.

I'm Still Here

I'm Still Here

Zeisel, John, (2009)

Penguin Group.

"I'm Still Here is a much-needed, glass-half-full look at Alzheimer's that shows how to connect with someone through the fog of dementia and build a relationship with the person within." In I'm Still Here, Zeisel outlines his approach - which is used in his groundbreaking residential treatment centers - and demonstrates how people can incorporate it into their relationships with those who have Alzheimer's

Brain Under Siege

Ben Bella Books.

Weiner links the brain to a crime scene, showing readers how "clues" point to causes and suggests paths to a cure. He takes readers on a journey through the latest technological advances, exploring which routes of investigation have gone cold and which have led to breakthroughs.

Communication Problems from Brain Injury and Disease

Johns Hopkins University Press.

An all-in-one guide for helping caregivers of individuals with brain injury or degenerative disease to address speech, language, voice, memory, and swallowing impairment and to distinguish these problem areas from healthy aging. Advances in science mean that people are more likely to survive a stroke or live for many years after being diagnosed with a degenerative disease such as Parkinson's. But the communication deficits that often accompany a brain injury or chronic neurologic condition—including problems with speech, language, voice, memory, and/or swallowing—can severely impact quality of life.

Alzheimer's from the Inside Out

Health Professional Press.

Receiving a diagnosis of Alzheimer's disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated?

Don't Rain on My Parade

Cimarron International LCC.

Don't Rain On My Parade addresses a crucial question in an aging world with over 20 million people globally are diagnosed with Alzheimer's and other types of dementia each year. If you have dementia, how can you plan to "live a full life" as an independent, adult being? A life that is complete and filled will thousands of positive moments. The book is a "how to" based on research, psychology, and the stories of many heroes living fully with dementia and shouting out their experiences and needs in books and blogs. It offers a positive, person-centered approach to Alzheimer's written directly to people in the early- and mid-stages (and their associated family, caregivers, and friends). It offers communication, living with hope, dealing with anger, humor, preserving a personal history and many more ideas to support living intentionally, independently and happily.

Spectrum of Hope

Workman Publishing.

Imagine finding a glimmer of good news in a diagnosis of Alzheimer’s. And imagine how that would change the outlook of the 5 million Americans who suffer from Alzheimer’s disease and other dementias, not to mention their families, loved ones, and caretakers. A neurologist who’s been specializing in dementia and memory loss for more than 20 years, Dr. Gayatri Devi rewrites the story of Alzheimer’s by defining it as a spectrum disorder—like autism, Alzheimer’s is a disease that affects different people differently. She encourages people who are worried about memory impairment to seek a diagnosis, because early treatment will enable doctors and caregivers to manage the disease more effectively through drugs and other therapies.

Dementia Fiendly Communities

Jessica Kingsley Publishers.

This book offers an overview of the dementia-friendly communities movement, showing the many benefits of this approach. It describes community initiatives from across the globe, such as Dementia Friends, memory cafes, and creative engagement with the arts through organizations like TimeSlips. This compassionate book tells another story about dementia, away from negative stereotypes. This alternative approach claims people can retain a sense of dignity, hold onto hope, sustain meaningful relationships, and live with a sense of purpose with support from their communities.

Living Your Best with Early-Stage Alzheimer's

Sunrise River Press

Recent medical advances have made it possible to diagnose Alzheimer's when symptoms are mild and new drugs are under investigation to help slow progression of the disease. Today, when a person is diagnosed, they may have many years ahead with only mild symptoms. The result is that a growing number of people with early-stage Alzheimer's are seeking information about how to take charge of their lives, manage symptoms, and cope effectively with the disease.

What the Hell Happened to My Brain?

Jessica Kingsley Publishers.

Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media's role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.

Dementia Beyond Disease

From the internationally acclaimed author of the groundbreaking and award-winning book Dementia Beyond Drugs comes another eye-opening exploration of how to improve the lives of people with dementia and those who care for them. In this revised edition—including updated facts, studies, and terminology—Dr. G. Allen Power demonstrates how to achieve sustainable success in dementia care by changing the caregiving lens to focus on well-being and the ways in which it can be enhanced in people living with dementia.

Dementia Friendly Communities

Jessica Kingsley Publishers.

This book offers an overview of the dementia-friendly communities movement, showing the many benefits of this approach. It describes community initiatives from across the globe, such as Dementia Friends, memory cafes, and creative engagement with the arts through organizations like TimeSlips. This compassionate book tells another story about dementia, away from negative stereotypes. This alternative approach claims people can retain a sense of dignity, hold onto hope, sustain meaningful relationships, and live with a sense of purpose with support from their communities.

Dementia Caregiver Support 

Dementia Caregriver's Support

Support Groups

These caregiver support groups offer a safe and supportive environment where you can connect with others who understand what you're going through.

Whether you need a listening ear, practical advice, or simply a place to share your experiences, these groups are here to offer empathy, encouragement, and understanding.

Organizations on Dementia and Aging Support

Dementia Caregiver Support

Below, you'll find a curated selection of organizations dedicated to helping caregivers navigate the challenges of caring for loved ones with dementia. These organizations specialize in various aspects of caregiving, including emotional support, education, financial assistance, respite care, and more. Whether you're seeking information, guidance, or practical assistance, these organizations are here to help lighten the load and provide valuable support along your caregiving journey.

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