Alzheimer's and Dementia 101: What You Need to Know to Protect Yourself and Your Family

By Alexandra Allred

In 2016, when both of Alexandra Allred's parents succombed to Alzheimer's and dementia, she stepped into the true nightmare of these terrible diseases. Her parents had kept secrets, were paranoid and combative. Allred had no idea that she was named Power of Attorney, nor had she any idea where her parents banked, how they paid bills or h

• Language: English
• Publisher: The Next Chapter Publishing
• Release date: Oct 4, 2019
• ISBN: 9781941398234

Alexandra Allred

Alexandra Allred's writing career began following a stint on the U.S. women's bobsled team. After being named "Athlete of the Year" by the United States Olympic Committee, she became an adventure writer. Allred brings her adrenaline-junkie style to her writing, leaving her audience laughing and always wanting more, more, more.

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Alzheimer’s and Dementia 101: The Very Quick Breakdown

of the Very Difficult Disease That Changes Our Lives;

What You Need to Know to Protect Yourself

and Your Family

By

Alexandra Allred, MS

Copyright © 2019

The right of Alexandra Allred to be identified as the author of this work has been asserted by her under Copyright Amendment (Moral Rights) Act

2019

This work is copyrighted. All rights are reserved. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced, copied, scanned, stored in a retrieval system, recorded or transmitted, in any form or by any means, without the prior written permission of the publisher.

13 Able

[e-mail]

Texas

Paperback ISBN – 13: 978-1-941398-21-0

E-book ISBN - 13: 978-1-941398-23-4

Cover image and design by: 13Able

All rights reserved.

Acknowledgements

To professional caregivers everywhere: You are true angels on earth. To our own angels, Norma, Yaya, Jeanette, Kamal, the amazing Marias, Rose, Freddie, Mary, and countless others who blessed our family – thank you. Your professionalism almost matched your caring and loving natures, which are immeasurable.

Dedication

To Marc and Karen Powe, our parents who sacrificed so much for their nation and, like all of those stricken with dementia, never deserved this. In your honor, we fight for a cure.

Table of Contents

Title

Copyright

Acknowledgments

Dedication

Chapter One: You Notice A Change

Chapter Two: When It is NOT a Normal Part of Ageing

Chapter Three: The Difference Between Alzheimer’s and Dementia

Chapter Four: How to Talk to A Loved One about Your Concerns

Chapter Five: Taking Away the Car Keys (and Other Forms of Independence)

Chapter Six: Why Seniors are So Easy to Scam

Chapter Seven: Respecting the Disease & Your Loved One

Chapter Eight: The Virtual Tour of Dementia

Chapter Nine: What to Do When You Think You Might Have Dementia

Chapter Ten: Look Before You Trust: Will vs. Trusts

Chapter Eleven: Ten Ways You May Obtain Power of Attorney/Legal Guardianship (and the Five Things You Should and Should NOT Do As POA)

Chapter Twelve: The Power of Transparency: Elder Abuse, Financial Theft & Your Loved One

Chapter Thirteen: What is Long-Term Care?

Chapter Fourteen: Ten People or Organizations to Speak with Before Considering At-Home Care

Chapter Fifteen: Your Caregivers Are Your New Family

Chapter Sixteen: The Memory Care Move (and Move-In Day): What They Don’t Tell You

Chapter Seventeen: The Everything File: What You Must Do Today

Chapter Eighteen: What We Must Do for Tomorrow: Let’s Change Some Laws

Chapter Nineteen: Millennials: The Good News, The Bad News

Chapter Twenty: An Open Letter: Please Help! I’m Moving My Mom Today

Resources

References

Chapter One

You Notice A Change

Just the word ‘dementia’ is frightening. But when a person fears he or she might be inflicted, rare is the person who notices a change within him or herself and reaches out for professional help. In fact, it is most typically a spouse, grown child or friend who takes a loved one to see a doctor. Even after receiving a diagnosis of Alzheimer’s or dementia, denial is so strong that, at least initially, it becomes a bigger problem than the disease itself.

One reason for this is simple. Those diagnosed with Alzheimer’s or dementia may not remember they have a problem from one moment to the next. How can you address a problem you do not know or believe exists?

Fear is another reason to resist change. Many people experiencing early signs of dementia or Alzheimer’s fear losing their home, their way of life, and their independence so fiercely that they try to keep the disease a secret.

Greater than fear or forgetfulness, however, is the reality that your loved one has a condition called anosognosia. In particular, studies found that 77% of people with Alzheimer’s, some forms of dementia or who have suffered a traumatic brain injury, will suffer from anosognosia, which prevents the person from understanding there is a problem (1).

Anosognosia can change or damage a part of the brain that affects the ability for a person to assess or recognize their own illness. It is why we often see this with head injuries. The frontal lobe, which involves critical thinking, problem solving and social interactions, to name a few, is compromised. Imagine, then, telling a loved one they suffer from dementia, Alzheimer’s or some kind of memory loss when they truly believe they are completely healthy.

Common complaints from family members are:

My father was driving, jumped a curb and plowed into a mailbox. Even when we showed him the damage to the car, he completely denies it!

Our mom nearly burned the entire house down and acts like nothing happened!

He gave away money to a scam and when I asked about it, he got mad at me for asking.

Those who suffer with anosognosia may struggle with day to day activities but will insist there are no problems, even refusing medical treatment when needed. For friends and family members, this can be incredibly frustrating but you must know it is not purposeful. No matter how deliberate it may feel, it is not.

Signs to look for if you believe a loved one may be suffering from dementia with anosognosia are:

- Inability to maintain the household, a daily schedule

- Displaying erratic behaviors with finances

- Interrupting conversations, particularly off-topic

- Difficulty in keeping up with personal hygiene

- Confusion about money and bills

- Increasingly secretive and/or paranoid

- Confusing facts, particularly about their own past

- Making excuses for unusual behaviors or events

- Unwillingness or inability to leave the house

It is important to exercise great (almost exhaustive) patience. Know that none of this behavior is conscious or intentional but it must be addressed. The following pages will help guide you in providing more positive, encouraging communication. It is critical that your loved one is a participant, in whatever capacity, in his or her own long-term care.

Finding a way to gracefully restructure homelife and personal/professional responsibilities in a way that does not diminish or humiliate your loved one but ensure greater personal, medical, financial and emotional security is the ultimate goal.

Chapter Two

When it is NOT a Normal Part of Ageing: Senior Moment vs Dementia

From greeting cards to one-line zingers in a comedy sketch, having a senior moment is most often portrayed as a temporary mental lapse that we all have yet is somehow more humorous when it is the result of senior age. In real life, however, without the snappy comebacks or built-in laugh-tracks, that lapse of recall can be worrisome. The irony is that because dementia is so frightening, many possible sufferers deny the signs while just as many might overreact to that ‘senior moment’ for fear of greater problems than ‘where did I put my car keys.’

For Linda Dean Miley, a former marketing and advertising executive, her quick wit and remarkable memory were essential for her business. Always on the go, always on to the next project, she became acutely aware of some memory issues following a health scare. It began with misplaced car keys but when she was unable to find her car one day, I thought, is this the beginning? Her grandmother had died of Alzheimer’s so Miley began researching.

As we age, there is natural deterioration of the brain, says Dr. Mark Pippenger, Behavioral Neurologist at Walker Memory Center and associate professor in UAMS College of Medicine Department of Neurology. The question, however, is which may be a sign of natural deterioration, which may be dementia?

Dementia vs. Senior Moment

Who hasn’t lost their car keys, asks Pippenger. The key is whether it [the forgetfulness] impacts function. Are these impairments or changes that interfere with daily life? Pippenger says that there are certain ways to discern the difference. Most people will walk into a room and suddenly wonder, ‘why did I just walk in here?’ while the real red flag is when someone walks into a room and does not recognize his or her own kitchen.

What Pippenger calls the aging of America, the increase of the senior population, naturally raises the number of dementia cases. But we know from our clinical work that there are many people who are not diagnosed. As we talk about the disease that robs us of our memory, Pippenger says that dementia does initially affect memory but there are other impairments that can be signs of the disease. Trouble with visual and spatial relationships, language and/or executive function, not being able to figure out how to do things they have done their entire lives, can all affect thinking ability and behavior. The real