Books related to Alzheimer’s Disease

Books!

I suppose it is fine to read about things in email, as many of us do all the time these days!

But, some of us prefer to hold a book, and to that end, I thought it might be good to tell you about some books I have liked or that look relevant which deal with real stories about people with Alzheimer’s or dementia, or even stories about life and death. Yes, they are probably also on Kindle!

I have read some of these, not all.

Alzheimer’s books

Mom, Are You There? Finding a Path to Peace Through Alzheimer’s by Kathleen A. Negri Insights and lessons that can aid any caregiver in embracing the person with dementia in positive, healthy ways and in developing self-understanding.

Dementia: Living in the Memories of God, by Professor John Swinton. Professor Swinton uses his background in nursing, ministry, and healthcare chaplaincy to conduct research on the relationship between spirituality and disease. In Dementia: Living in the Memories of God, Swinton explores two main questions for people living with the disease: Who am I when I’ve forgotten who I am? and What does it mean to love God and be loved by Him when I have forgotten who God is? The book puts forth Swinton’s practical theology of dementia for caregivers, dementia patients, and others who offer them love, support, and guidance.

Still Alice by Lisa Genova Still Alice is a fictional story about the descent of a 50-year-old university professor diagnosed with younger-onset Alzheimer’s disease. The Association assisted author Lisa Genova with her research, which included interviews with several members of past Early Stage Advisory Groups. The Association is also featured prominently in the book’s plot. In addition, the Association worked with Genova to create the Still Alice discussion guide, specifically for people living with Alzheimer’s. The guide, the first of its kind, is intended to help people with the disease use Alice’s story to connect with their experience and explain it to others.

Learning to Speak Alzheimer’by Joanne Koenig Coste and Robert Butler 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. Learning to Speak Alzheimer’s also offers hundreds of practical tips, including how to · cope with the diagnosis and adjust to the disease’s progression · help the patient talk about the illness · face the issue of driving · make meals and bath times as pleasant as possible · adjust room design for the patient’s comfort · deal with wandering, paranoia, and aggression.

Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias by Amy Newmark With 101 encouraging and inspiring stories by others like you, this book is a source of support and encouragement throughout your caregiving journey.

The Forgetting By David Shenk. David Shenk’s prize-winning book is a scientific and literary description of Alzheimer’s and the research that is being done to find a cure. The Forgetting, Alzheimer’s: Portrait of an Epidemic is never boring, one feels in the hands of a caring expert. The British psychoanalyst and author Adam Phillips writes in his foreword: “This remarkable book will radically change our notions of looking after people and our assumptions about independence. Out of fear of mortality we have idealized health and youth and competence. The Forgetting reminds us, among many other things, that there is more to life than that.”

When It Gets Dark By Thomas DeBaggio. When it Gets Dark is essentially DeBaggio’s swan song. Although he lived eight years after the publication of this book, one can only imagine how painful the last years must have been for DeBaggio and his family as even in 2003 he was describing the terror, frustration, sadness and sometimes anger at his rapidly deteriorating mind. Although When it Gets Dark was written after DeBaggio’s Losing my Mind, it is more structured, and in chronological order, which is not the case with first book. DeBaggio expands on Losing my Mind, but also turns back to his past, recounting the early 1960s and 70s and his beginnings as an herb grower. DeBaggio was also a fisherman, and often used the language of fishing and horticulture to describe his daily battle: “My long-term memory is left battered; trying to find moments of the past is like fishing with a dull, rusting hook without bait.”

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Written by Nancy L. Mace and Peter V. Rabbins, The 36-Hour Day now is in its sixth edition. Completely revised and updated, this book has sold more than 3 million copies around the world and continues to be a top resource for those caring for people with Alzheimer’s disease and other forms of dementia. The 36-Hour Day guides family members and caregivers through coping with the challenges of dementia while addressing their personal needs and emotions.

The Alzheimer’s Action Plan: What You Need to Know – and What You Can Do – About Memory Problems, from Prevention to Early Intervention and Care by Dr. P. Murali Doraiswamy. Dr. Doraiswamy is a psychiatrist in the Duke Health system who serves as a brain health adviser for Men’s Health magazine and a health care expert panelist for The Wall Street Journal. He also co-authored The Alzheimer’s Action Plan with Lisa P. Gwyther and Tina Adler. This dementia book combines Dr. Doraiswamy’s medical insights with social worker Lisa P. Gwyther’s experience in working with families impacted by Alzheimer’s disease. Readers will understand how to determine whether their loved one’s memory loss is a symptom of Alzheimer’s and how to help her receive effective medical treatments as the disease progresses.

Dementia

What If It’s Not Alzheimer’s, A Guide to Dementia by John Trojanowski 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.

Alzheimer’s Disease and Other Dementias by Nataly Rubinstein Written by a licensed clinical social worker with twenty-five years of experience, this easy-to-read book will give you the resources to make informed decisions regarding the best possible care for you and your loved one.

A Caregiver’s Guide to Lewy Body Dementia by Helen Buell Whitworth MS BSN This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.

For caregivers

Activities to do with Your Parent who has Alzheimer’s Dementia by Judith A. Levy. She is an occupational therapist who became the daughter of an Alzheimer’s patient. In Activities to Do with Your Parent Who Has Alzheimer’s Dementia, Levy uses her personal and professional experiences to support readers who are in a similar situation. She shares activities that promote patients’ abilities to care for themselves, remain mobile, and continue to socialize. She also describes how to create an environment that supports parents with dementia. The book contains more than 50 activities, activity assessment forms, ideas for preventing caregiver burnout, and much more.

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers by Luciana Mitzkun’s. This guide for families caring for dementia patients provides an authentic look into managing symptoms, securing future care, and avoiding common mistakes as the disease progresses. Caregivers also will learn how to care for themselves while caring for their loved one, thanks to the concise information and meaningful anecdote included in the book. Busy caregivers appreciate the straightforward nature of Mitzkun’s writing.

Alzheimer’s Care: The Caregiver’s Guide to Understanding Alzheimer’s Disease & Best Practices to Care for People with Alzheimer’s & Dementia by Nancy J. Wiles. Alzheimer’s Care is a dementia book by Nancy J. Wiles that provides a look into Alzheimer’s for caregivers who want to know more about the signs and symptoms of the disease, how to help patients keep their memories for as long as possible, and much more. The book provides a comprehensive overview into dementia and Alzheimer’s and answers the questions caregivers have but aren’t sure how to ask when faced with caring for a loved one with the disease.

Intelligence

In Pursuit of Memory by Joseph Jebelli. It has become the salient fact of 21st-century life that, with an aging world population, Alzheimer’s will overtake cancer as the second leading cause of death after heart disease. We’re at a point, writes Joseph Jebelli, at which “almost everyone knows someone – a family member or friend – who has been affected.” Jebelli, a young British neuroscientist, has greater cause than many to make this claim. As a boy, he watched his grandfather acting strangely, before descending into the abyss of dementia in which he could no longer recognize his family. Jebelli’s testament, In Pursuit of Memory, is a moving, sober and forensic study of the past, present and future of Alzheimer’s from the point of view of a neurologist who has lived with the disease, at home and in the lab, from a very young age.

Curse of the High IQ by Aaron Clarey. Society, by statistical necessity, needs to focus on the majority. It needs to be built and designed for “the average.” Society, by moral necessity, also needs to focus on the disadvantaged and disabled. Helping those who cannot help themselves. But while the majority of society’s resources, attention, and infrastructure is dedicated to average or below-average intelligent people, little-to-none of it is paid to the abnormally intelligent. And while having a high IQ is an overall net benefit in life, being a statistical intellectual freak is not without its drawbacks. Welcome to the “Curse of the High IQ.”

Mortality

Being Mortal: Medicine and What Matters in the End by Atul Gawande. Like poet William Carlos Williams or The Man Who Mistook His Wife for a Hat author Oliver Sacks, Gawande is that rare soul who is as talented a writer as he is a doctor. In this call for a reevaluation of end-of-life care, he meditates on how to navigate age-related frailty and mortal illness so that not just the living, but the dying, can be comfortable.

On Death & Dying by Elisabeth Kübler-Ross. Ten years after her 2004 death, this new edition of Dr. Kübler-Ross’s definitive work was released, and it’s filled with her original insights about the psychological processes of dying as well as new resources for the ailing and their loved ones.

Enjoy!

Does Brain Exercise help reduce the risk of Alzheimer’s?

Does Brain Exercise help?

We read in a lot of places that exercising your brain can help prevent dementia.

Is that true? If so, what makes sense to try?

No one can say for certain that exercise can prevent or stop the progression of Alzheimer’s disease. Still, some are certain that it helps, and there is a complete industry of brain-related exercises. You can get apps, web pages, games, workbooks, foods, and more. Is it all about the money .. capitalizing on our fear of dementia? or, does it work?

First, if we think it does help, that is itself helpful. So, look at sites like these for apps and games … some of these aim for “wellness”, others for exercises for your brain and thinking skills…

And more! The NIH has a site too.

You can exercise your thinking, and that is always good.

And, here are some really good ideas for brain health from Consumer Health Digest. Also, from Every Day Health.

But, Can it help with Alzheimer’s?

Some researchers think so, based on this general theory … if cognition improves in people without dementia due to brain exercise, then it must be of some benefit to those who do. Here is an article on Brain Exercise from the Alzheimer’s Society in the UK. But, they also point out that there is no evidence that brain exercise delays Alzheimer’s disease.

The Alzheimer’s Association in the US says this: “At this time, there is no treatment to cure, delay or stop the progression of Alzheimer’s disease.”

My experience

Personally, I know that my ability to “think” diminished over the years. I didn’t notice it, but it was certainly apparent when I went to Law School. Now, I didn’t start until I was 51 … well after most lawyers get their start! But, the key here is that I thought I was in fine shape, mentally.

When I got to class, I realized I would have to read, and remember, hundreds of pages of information … every night! I hadn’t read hundreds of pages in one day for 30 years! It was a struggle to re-learn how to learn. And, it took the whole first semester.

The important point? I turned the corner, and was able to learn, and retain massive amounts of information. Which proves two things to me … one, certain skills I had before atrophied, and two, exercising those skills brought them back.

So, I am a believer that brain exercise helps. I’m not so sure about avoiding Alzheimer’s, but exercising your brain is a very good thing!

What about body exercise?

Oh, yes, one more cool thing … physical exercise can help your brain too!

You know you feel better when you have a little exercise in your daily routine. That has a known reason. But, if you exercise, it turns out that you are also repairing neurons through “neurogenesis”. Since Alzheimer’s disease and other dementia have as one process the destruction of neurons, it is possible that exercise can slow the progression. Active mice show more nerve regeneration than inactive ones. Hopefully, our brains act like the mice brains!

So, be active, both mentally AND physically!

Elder Abuse is a national problem

Why does mom have a black eye?  Is it elder abuse?  I work with many families in my practice.  A lot of them have a loved one with some sort of dementia. From time to time, I see behaviors that look a lot like elder abuse. I bet you do too.

Active Elder Abuse

Active elder abuse such as striking the elder (physical), or yelling at them (psychological), or stealing their debit card (financial) are the obvious events.  These should be reported and families should be on the lookout for this type of abuse.  Observe whenever the elder is visited by any family member.  Ask questions and don’t let “oh, I am fine, dear” be the only answer when you suspect some problem.  Dig deeper … your elder may need an advocate.

When the elder is ignored, is that elder abuse?  It may be if it leads to bed sores, falls that injure the elder, or worse.  What about simply their making bad decisions on their own because there is no one watching over them?  It is hard for a family to kow.  Is letting dad live on his own  “respectful distance” and allowing him the freedom to thrive?  When does it become a situation that is actively dangerous?  And, it is hard to know when to change gears from passive observation to an active role in protecting or managing the elder.

Competence is the real issue … does making a “bad” decision mean he is incompetent?  Does purchasing a minor repair for an outrageous sum of money rise to the level of incompetence of the elder or a criminal act by the seller?  Probably not.  Morally reprehensible maybe, but abuse?   That is a hard line to draw.

Resources

Here is a link to a resource from “Aging In Place”, a national organization that supports the needs of families and elders in the aging process.  It reminds us of the statistics and what you can do about elder abuse.  Most important is not to ignore it… too often that leads to worse things for the elder and their families. Never wait if you spot active elder abuse.

Here is another blog posting you can reference when you visit your elder .. not only during the holidays but every time you visit.  And here is a guide for visits to communities or their home.

Contact my office if you have questions about elder planning, legal documents, Wills and Trusts, or how to find resources to help you and your loved ones.  We are happy to help!

Elder Law – More than merely documents?

The world of aging is complex and you have a lot of decisions to make and an avalanche of information to process.  Your​ trusted advisors (you have some, right?) need to help you along the way.  This week, I was at lunch with a financial planner who was talking about meeting clients and closing sales.  My new friend was developing​ a vision for “relationship” planning.  When a planner, or an attorney, or anyone, has a “transactional” mindset, the process is pretty much how many clients and how many sales.  The client’s, or customer’s, needs can be lost too easily  in that process.

Instead, the better approach seems to be to connect with YOU, understand YOUR needs, and look at ways to work together to solve the current (and future) needs.  The best relationships we have are based on mutual trust and respect, and not on the sale.  Of course, the sale is important too, but it isn’t the starting point.

There is more than a document to your estate plan, more than a Will or a Trust.  There is more than the mere application for Medicaid.  Your child with disabilities is not just a Trust beneficiary.  You need to be heard.  You might want to talk about your fears in transition, or wonder if you are making the right decisions for your parents or your children.  You might have property that needs to be sold, but it is the family home … For these, and more, you need someone who will listen and work with you as your family addresses planning or crises.

What would you prefer to experience?  Merely documents, or caring professional advisors who coach you through the information and decisions?  Yes, we do prepare documents, sometimes a lot of them.  But, more importantly, we develop a plan.  And, it is YOUR plan, they are YOUR documents, and it is all for YOUR family.

Isn’t that a better relationship?

Call us today!

Your digital assets – What happens when you die?

Digital Assets is a term that describes those accounts you own on the internet with usernames and passwords.  For example, your email.  But, it might also include bank accounts, reward miles, and all the different kinds of social media, such as Facebook.​

So, what happens when you die?  Who “owns” all that stuff on the internet?  Well, the short answer is … it depends.  This PBS video interview gives you a nice overview of some of the issues: http://www.pbs.org/newshour/bb/happens-digital-presence-death/#.U8WCjWuwCTg.gmail

When our law office works with you or your loved ones to create an estate plan (including a will, advance directive, and various powers of attorney, and more), we ensure that your personal representative (executor) will have testamentary authority​ to handle your digital assets.  North Carolina does not have a specific law yet, so our wills are drafted broadly to offer the best transition​ of your digital assets.  Call us today.

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