A Handbook for Care Partners of People with Dementia

I Care is a comprehensive book that offers a greater understanding of how to manage the difficulties of Alzheimer’s disease and related dementias. I only wish this book was available when I was caring for my mother, Rita Hayworth, who suffered from Alzheimer’s disease.”  – Princess Yasmin Aga Khan, President, Alzheimer Disease International

“I Care is just what the health care community has been waiting for to fill the void for people caring for a loved one with Alzheimer’s or a related dementia.” – Dr Stephen Jones, Specialty Geriatric Medicine, Greenwich Hospital, CT

anonymous: My husband has alzheimers or some form of dementia and I’ve read lots of material and this is by far the best. It’s simple, well said, and to the point.

by Donna Phelan: This remarkable book is a must read for professionals or families who have a loved one with Alzheimer’s! Very informative, practical and easy to read. Great tips for care management and an inspiring outlook to encourage the care partner.

by Sr. Margaret Kelly: This little book is a powerful source for family members’ dealing with a love one with Alzheimer’s. It helps one to understand the deficits related to Alzheimer’s disease and the effects on the person with memory loss as well as the family. The information given in” The Brain 101″ gives a clear explanation of how the brain functions in laymen’s terms. The word “partnering” expresses what is needed for the love one and the family. Actual experiences in the book has given a practical applications of how some people have related with the person living with Alzheimer’s. I personally have seen the benefits of what is written in this book as well as the changes that are taking place with our elders and staff in our nursing home. Kudos goes to Kerry Mills and Jennifer Bush for sharing their knowledge and experience with all who have this need.

by Judy Rosenblatt: This is the book I will give to my daughters if signs of dementia start creeping up on me (at 84 I know the risk is rising). Here they will find a full range of practical advice and resource information. But the book’s special value lies in its eloquent demonstration of how people with dementia can be partners in their own care, if given the opportunity. Just how to do this is clearly spelled out in moving real life examples that, without glossing over the difficulties, open the way to a richer, more positive experience than most families hit by dementia are likely to foresee. This book is an attitudinal game changer. Knowing that it exists is a great relief to me.

anonymous: For those caring for a relative or friend with Alzheimer’s Disease or dementia, this book is indispensable. It provides the most clear, concise and helpful advice out there for how to retain the warmth of your connection with your loved one, and for helping them with kindness and patience and even the good humor they can always appreciate. The authors explain all of the physical and psychological manifestations of dementia. They share a wealth of experience and knowledge without wasting your time. After reading this book, you may comprehend your road ahead better and sense that your journey is actually manageable.

by Marvin Zats: I would argue that only someone who has been a caregiver for a loved one with dementia can truly appreciate the depth and breathe of I Care. Not only from the help in addressing the needs of an individual with dementia but possibly even more important, for how it addresses the needs of the caregiver/family as well. I would have significantly benefited from its wisdom and perception if it had been available for me in some trying years. There are a myriad of books out there which address similar topics and needs. But I Care is far and away the best!

by N. Watt: As another reviewer says, nobody can possibly know what it’s like to know and love someone afflicted with this disease unless they’ve been there. Not only do the authors provide real practical advice and insight, they do something even more valuable: help us look at those with memory loss in an entirely fresh light. Somehow this handbook makes the scariest of illnesses less scary thereby making life much better for the cared for and caregiver alike.

by Tony Buccheri: Having worked in the elder care industry for many years, as well as my personal experience of being a caregiver to my father who suffered from Alzheimer’s, I can honestly say that I Care provides you with the tools and the knowledge to make your life easier and more rewarding if you’re currently caring for a loved one with Alzheimer’s. The book offers a comprehensive approach to teaching you how to care for and communicate with someone who has Alzheimer’s, ensure they have a safe environment, as well as how to care for yourself. I Care is a must read for anyone whose life is currently being affected by Alzheimer’s, and healthcare and elder care professionals who work with Alzheimer’s patients. Kerry and Jennifer hit it out of the park with this book!

by Michelle Schimitsch: I have been in the Older Adult industry for 15 years and I have also been a part-time caregiver for my mother-in-law who is living with Alzheimer’s disease. I can honestly say I have never read a more practical, inspiring, and applicable book for anyone whose lives have been touched with Dementia. This book finally explains how to be of help, how to partner with your loved one who has Dementia, and how to avoid agitations now and in the future that probably will, not may, arise. But the best part is how to get help with your view, attitude, and perception of what your loved one can still do, not what they can not do. I laughed, I cried, and I could not put the book down! As one who personally has witnessed family members not knowing at all how to interact with their loved one with Dementia, I only wish this book was available six years ago! If it is ourselves with the disease, this book speaks volumes about dignity and respect. There is still many things we don’t know about Alzheimer’s, but, this book explains what is known, what does work, and what is useful for all in our daily lives. Strong endorsement.

by Sandy Portnoy: I care is an amazing and informative book. I found it to be easy to understand with step by step ideas in understanding not just the person who has Alzheimer’s but their families as well. I myself being trained by the best (Kerry) found myself unable to put the book down. I completely read through the book in a week-end. While reading the heartwarming stories directly from the families involved, I found myself pulled right in and felt a big part of understanding what the families went through with their loved one’s and realized just how much this book helped the families understand how to care for someone who has Alzheimer’s and how to keep them safe and engaged. I learned that life does not end for the person diagnosed with Alzheimer’s. I learned from I Care that it is a new beginning with different likes and dislikes to discover. I feel I Care’s step by step approach allowed families to understand just what their loved one is going through, giving different strategies to help all concerned, and how I Care allowed for the families to live a happy life together and to be make new and enjoyable memories together. i would highly recommend reading I Care.

by Barbara: I Care is an amazing book. It examines Alzheimer’s Disease and other dementias, explains physiological changes in the brain in easy to understand language, and offers plain and simple suggestions regarding how to deal with all kinds of dementias from early onset through further development. The authors cover every element of caregiving, including tips on how to keep the home safe for the person with dementia, how to care for oneself as the caregiver, and a myriad of suggestions on how to care for the person with dementia. They also include research resources, and helpful sample charts and checklists in the back of the book. But my favorite thing about this book is that it is so down to earth, so easy to read and so compassionate, both for the caregiver and the care partner, that I think it should be required reading for all older adults and children of aging adults, whether or not symptoms are present, just to be informed about dementia in general. It is a fascinating read, and my hat is off to Kerry Mills and Jennifer Brush for a wonderful helping tool.

by Linda Joseph: I am not a care giver to someone with dementia but I encounter plenty of people with dementia and this information was invaluable in learning how to best interact. If you are a care partner then this info is essential!

This book is not just informative, it is also very practical.
– You want to know how to make your home safe
– How to deal with memory loss and repetitive questions
– How to treat them with respect and build up

If you live with a loved one with dementia and get frustrated easily – get this book!

by Martha Stettinius: According to the authors, a “care partner” is someone who receives as well as gives care and affection. While care “giving” can seem one-sided (and never-ending), a care “partnership” is reciprocal and rewarding. “When someone helps care for someone else, we call him or her a caregiver. This is a natural title and one we all understand; however…this title implies that there is nothing left for the person with dementia to contribute.”

Too often we assume as caregivers that a person with dementia is “gone” or incompetent. A person living with dementia is still “here,” still capable of experiencing a full range of emotions, needs, likes and dislikes. They can usually continue to make some decisions in the early stages of dementia, and then, through the final stages of dementia, share love and affection, even if it’s just holding hands or offering a hug or a smile.

Care partners learn, over time, how to support their loved one as a whole human being, not as a dementia “patient.” Care partners also learn—and this is no small thing—to pay attention to their own needs, to care for themselves. The one-sided nature of care “giving” can encourage people to become martyrs and do too much, while care partnerships encourage people to balance their partners’ needs with their own.

“I Care” includes many well-written stories by people who see themselves as care partners. These anecdotes are some of the best parts of the book. One husband of a woman with Alzheimer’s, for example, writes that “dementia has not robbed” his wife “of her personality, and it has not robbed us of each other. We have simply become partners.” His explanation of how they became care partners is quite moving.

Elsewhere in the book Brush and Mills share excellent tips about how to communicate with a person with dementia, find meaningful activities, and encourage socialization. One of my favorite parts is a sample letter in which a care partner writes to her husband’s friends, reassuring them that they are still a vital part of her and her husband’s life, and encouraging them to continue to visit.

Much of the dementia care information in “I Care,” such as tips for making your home safer for a person with dementia, can be found in other guides, but the authors bring a certain hopefulness and lightness of spirit, and specific clinical observations of care partnerships, that make their book unique.

If you have been diagnosed with dementia, care for a person with dementia, or work with people with dementia, “I Care” is one of the best descriptions you will find of care partnerships, and essential reading.
–author, “Inside the Dementia Epidemic: A Daughter’s Memoir”

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