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Why this book?
Alzheimer's Disease is not merely forgetting where the car keys were placed or forgetting the name of a distant relative. Doctors know of many signs and symptoms that can sound the alarm something is wrong. These signs are likely making you concerned too. Perhaps your loved one is having problems in 'thinking and remembering'? Some examples are: making repeated mistakes with finances like forgetting to pay bills, erratic spending behavior, multiple minor car accidents, rapid mood swings, sudden unprovoked irritability or joyfulness, forgetting daily needed chores, the progressive inability to learn new things. These ARE SOME OF THE SIGNS that a person's cognitive behavior - or how the brain is supposed to work - is failing. These are the triggers it is time for a doctor visit. Some of these signs can be warnings of a reversible neurological disease, or maybe, Alzheimer's dementia. Once you have learned you or a loved one has Alzheimer's or a related dementia - you will soon come to understand - this disease is about losing everything that ever made you who you are. It is about having your rights to decide for yourself, your ability to drive, and other similar freedoms and customary activities, slowly become impossible. It is about the way you want to be treated as a human being, and how you wish to be remembered by loved ones. It is about protecting your personal dignity. It is about your vanishing mind.

Care giving is at the heart of Alzheimer's disease. It is not a disease to be tackled alone. The decline in health is not like any other disease. As the disease progresses from early to late stage, the decline can take years. Eventually, all individuals that progress to advanced dementia will lose total privacy and need the assistance of a caregiver. It is the caregiver that will need to help with cooking, paying bills, shopping, driving, and the activities of daily living like getting dressed, eating, and grooming. Each stage of the disease has challenges to confront and having help is necessary. Knowledge helps you create and maintain the best quality of life.

Dr. ZoŽ A. Lewis has cared for her patients and their families dealing with Alzheimer's for nearly two decades. What sets her apart from others in this crowded and ever growing field of Alzheimer's "experts", is her comprehensive experience as a medical doctor with skills to deliver seamless continuity of care. This is the kind of care that stretches across the broad spectrum of each individuals needs. As a hospitalist, the acute care hospital-based doctor, she manages Alzheimer's patients when they are sick enough to require hospitalization. In her role as a primary care physician, each office visit is an opportunity to screen and quickly diagnose dementia. Finally, with years working in long term care facilities and nursing homes as a hospice medical director, her emphasis is optimizing quality of life for those with advancing dementia. The National Hospice and Palliative Care Organization, The National Council on Aging, The American Society on Aging, and the National Alzheimer's Association have recognized her books and her contributions to the field of hospice care and advanced dementia. Dr. Lewis is a recognized expert in the field and has appeared nationally as a speaker on quality of life for those with end-stage dementia. As the Corporate Medical Director of Beacon Hospice and Palliative Care, Inc. in Boston, Massachusetts she lead the initiative and co-developed a program using art and music therapy and gentle touch as part of hospice care to deliver compassionate care. Dementia Caring Guide


Working with patients and their families from the earliest phase of suspicion of Alzheimer's and other memory-loss illnesses, through the challenging years of steady decline, standing alongside family as they brace for and face the heartbreaking final months, then hours, is the definition of continuity of care. This experience is what Dr. ZoŽ shares with readers in "I hope they know".




"I wrote the book, 'I hope they know'-
because I knew what caregivers and patients needed to know at the moment they heard the word 'dementia', as well as for those in nursing homes struggling with the end of their life. It was their inability to speak even one word, or swallow food and water that grabbed my heart and moved me to action.



The saddest reality I have witnessed occurs when family members and loved ones stand by
helplessly and watch the relentless transformation of a vanishing mind, to the end of
a life with Alzheimer's. I am motivated to make a difference.
I saw a need to protect human rights.



If you don't know there are solutions to these common problems with Alzheimer's - then you can find help with 'I hope they know....'

1. Weight loss and dehydration. Discover what is the best diet and nutrition for those with Alzheimer's disease.

2. Safety and falling. When is it time for nursing home placement and 24/7 custodial care.

3. Tube feeding. The religious and scientific reasoning for or against tube feeding to maintain hydration and nutrition.

4. Hyper sexuality and masturbation. How to deal with male and female hyper sexuality that can come with moderate and advancing stages of dementia. This is not behavior that should be ignored or joked about.

5. Caregiver anger. Coping skills and learning how to curb inevitable frustration. Stress management techniques that work.

6. Caregiver burnout. Take the evidence-based self test and find out before your own health crisis.

7. Screaming, wandering and sun downing. How and when to use art, music and gentle touch for calming instead of sedatives.

8. Newest Technology. Devices for the home to keep you and your loved one safe.

9. Dangerous drivers. 30 signs from the National Highway Traffic Safety Administration on when it is time to stop driving and how to take away the car keys.

10. Nonsense speech. What is Alzheimer's speak and how to 'redirect' attention of those with dementia.


Alzheimer's Organizations

The National Institute on Aging
www.nia.nih.gov


Alzheimer's Disease Education and Referral Center
(800) 438-4380
www.nia.nih.gov/alzheimers


The Alzheimer's Association
24/7 help line

(800) 272-3900
www.alz.org


The Alzheimer's Research Foundation
(877) 427-0220 www.alzheimers-research.org
The National Alzheimer's Coordination Center Internet Database
www.alz.washington.edu


The Alzheimer's Foundation of America
(866) 232-8484
www.alzfdn.org


Fischer Center for Alzheimer's Research
Foundation
(800) ALZINFO
www.alzinfo.org



International Organizations

Alzheimer's Society United Kingdom
www.alzheimers.org.uk

Alzheimer's Disease International (ADI)
www.alz.co.uk


Dementia and Patient's Rights Blogs

Alzheimer's Reading Room:
A resource of news and advice for holding healthcare organizations accountable.

Estate Plan And Asset Protection: Offers legal assistance from lawyers for protecting Alzheimer's patient's estates.

Elder Law Answers: A blog dealing with Alzheimer's patients and elder law.

Nursing Home Abuse Blog: Written by a lawyer who advocates for patient's rights. Gives insights into details that caregivers can look for when selecting a nursing home.

Nursing Home Abuse Lawyer Blog: Terry Law Firm, LLC covers a wide variety of abuses that occur in nursing homes.

Our Parents: A concise look at selecting appropriate nursing homes for Alzheimer's patients.

Slutsky Elder Law Blog: A look at a variety of legal issues and strategies for serving elders with or without Alzheimer's Disease.

The Caregiver's Voice: Offers ways to help prevent nursing home abuses for Alzheimer's patients.










Wonderful! Should be in every household that deals with
Alzheimer's Disease.

Jacqueline Hertz, Miami, Florida





A holistic reference that may help
reduce symptoms and improve functioning and quality of life.
National Hospice and Palliative Care Organization, Dr. Lin Noyes Simon





Dr. Lewis is a people person, a natural born teacher. Her genius is that she can take a complicated topic, strip it to basics, share her knowledge as a clinician and her gifts as an educator. A book for anyone, on any level.
Pastor Malcolm Armstrong,
Jacksonville, Florida






“Kudos to Dr. Zoë A. Lewis for including a chapter on music therapy in her book on Alzheimer’s disease and for using world renowned Dr. Suzanne Hanser as the author.”
Professor Isabelle Frohne-Hagemann
Co-founder of the Institute for Music, Imagery and Therapy (IMIT)
Berlin, Germany






“As the caregiver for two parents with dementia, I found the book a delight and a comfort. Her work with dementia in the end-stages is amongst the most skillful I am aware of.”

Joseph Karpicz, M.D.
North Shore Medical Center,
Salem, Massachusetts






“This book will lead the reader to a compassionate understanding of this population.”
Author of ‘Comfort Touch Massage for the Elderly and the Ill’
Mary Kathleen Rose



All Contents Copyright © 2011 Zoë A. Lewis, M.D.

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