Six Steps to Managing Alzheimer’s Disease and Dementia
A Guide for Families
ANDREW E. BUDSON, MD
Neurology Service, Section of Cognitive & Behavioral Neurology, & Center for Translational Cognitive Neuroscience, Veterans Affairs Boston Healthcare System
Alzheimer’s Disease Research Center & Department of Neurology, Boston University School of Medicine
Division of Cognitive & Behavioral Neurology, Department of Neurology, Brigham and Women’s Hospital Harvard Medical School Boston, MA
Boston Center for Memory Newton, MA
MAUREEN K. O’CONNOR, PSYD
Psychology Service, Section of Neuropsychology, Bedford Veterans Affairs Hospital Bedford, MA
Alzheimer’s Disease Research Center & Department of Neurology, Boston University School of Medicine Boston, MA
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Library of Congress Cataloging-in-Publication Data
Names: Budson, Andrew E., author. | O’Connor, Maureen K., author. Title: Six steps to managing Alzheimer’s disease and dementia : a guide for families / Andrew E. Budson, M.D., and Maureen K. O’Connor, PsyD Description: New York, NY : Oxford University Press, [2022] | Includes bibliographical references and index. Identifiers: LCCN 2020048282 (print) | LCCN 2020048283 (ebook) | ISBN 9780190098124 (hardback) | ISBN 9780190099909
LC record available at https://lccn.loc.gov/2020048282
LC ebook record available at https://lccn.loc.gov/2020048283
DOI: 10.1093/med/9780190098124.001.0001
This material is not intended to be, and should not be considered, a substitute for medical or other professional advice. Treatment for the conditions described in this material is highly dependent on the individual circumstances. And, while this material is designed to offer accurate information with respect to the subject matter covered and to be current as of the time it was written, research and knowledge about medical and health issues is constantly evolving and dose schedules for medications are being revised continually, with new side effects recognized and accounted for regularly. Readers must therefore always check the product information and clinical procedures with the most up-to-date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulation. The publisher and the authors make no representations or warranties to readers, express or implied, as to the accuracy or completeness of this material. Without limiting the foregoing, the publisher and the authors make no representations or warranties as to the accuracy or efficacy of the drug dosages mentioned in the material. The authors and the publisher do not accept, and expressly disclaim, any responsibility for any liability, loss, or risk that may be claimed or incurred as a consequence of the use and/ or application of any of the contents of this material.
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Preface
“I always thought I had a lot of patience, but if he asks me what we are doing today one more time, I think I will scream.”
“I love my wife but I have no time for myself—I haven’t been able to go to the gym or visit my friends or even see my doctor.”
“He wants to drive but I don’t know if it’s safe.”
“I’ve never fooled around in my life and now, at age 83, my wife is accusing me of having an affair.”
“It’s happening every evening now—she keeps saying that she needs to go ‘home,’ but we already are home.”
“He won’t use his walker and I’m afraid he’s going to fall.”
“I don’t mind cleaning up when she doesn’t make it to the bathroom, but now she’s fighting me when I try to get her washed up.”
“When I came home from the hairdresser he asked me who I was—he really didn’t recognize me.”
“Yesterday I found a pan burning on the stove, so now I can’t leave her alone anymore.”
Do some of these experiences sound familiar?
Do you find that just when you’ve solved one problem, another problem pops up and you’re back to square one?
Do you feel that no one could possibly cope with all the problems you’re dealing with?
Do you find it frustrating that no one really understands what you’re going through?
Is your own health beginning to suffer?
Do you want to understand what causes dementia and how to manage all the issues that go with it?
Are you worried that some of the medications being given are actually making things worse?
Would you like to learn what medications can be used to make things better?
Would you like to learn new ways to sustain your relationship with your loved one?
Are you feeling so tired that sometimes you wish it could all just be over?
If you answered “yes” to any of these questions, this book was written for you. We can help you. Caring for someone with Alzheimer’s disease or another dementia can be one of the most frustrating, exhausting, and heartbreaking activities that one can do—but it can also be fulfilling and rewarding. We will show you how to be a better care partner and caregiver. In these pages we explain why different problems and behaviors arise, and how to manage them when they do. We review which medications are helpful—and which are likely to make things worse. We explain how to care for yourself, and why that is so important for both you and your loved one. We can show you how to sustain your relationship with your loved one and how to plan for the future.
In our practices as a neurologist and a neuropsychologist, we have worked with several thousand families who are struggling with dementia, just like you. We give them tips for communication to diffuse tense situations. We explain why their loved ones may have false memories, hallucinate, not recognize them, or think they have been replaced by an imposter. We also help them deal with tremors, falls, wandering, agitation,
aggression, and incontinence. This book provides us with the opportunity to tell you about these and other topics, in six straightforward steps.
Lastly, some of you might wonder how this book differs from our prior one, Seven Steps to Managing Your Memory: What’s Normal, What’s Not, and What to Do About It. In a very real sense, this book is the sequel to that one. Seven Steps to Managing Your Memory focuses on the older individual who is concerned about minor memory problems and either is aging normally, has mild cognitive impairment, or has just the very beginnings of Alzheimer’s disease or another dementia. It discusses in great detail how to distinguish the changes in normal aging from those of Alzheimer’s disease, what the doctor should do for the evaluation, what treatments are available for mild memory problems (as well as the depression and anxiety that often accompany them), how to optimize brain health with diet and exercise, and how to strengthen memory with activities, attitudes, strategies, and aids. In brief, Seven Steps to Managing Your Memory is written for the individual with mild memory problems. By contrast, this book is written for the families of individuals whose dementia has progressed beyond the mild stages and for those families who know things are heading in that direction and want to start planning for the future now.
Acknowledgments
The genesis of this book began with the excellent questions posed by the families of individuals with Alzheimer’s disease and other causes of dementia. We thank them for the inspiration and guidance they have given us. We also thank our friends and family members who read various drafts of this book and provided their invaluable feedback: George Null, Richard Budson, Sandra Budson, Burt Shnitzler, Judy Bergman, Olga Quinlan, Pam Molnar, Eric Bender, Fred Dalzell, Peter Grinspoon, Ron Elliott, and Ceci McVey; we couldn’t have done it without you. We are also grateful to our colleagues and mentors who have taught us so much about caring for individuals with dementia, including Paul Solomon, Elizabeth Vassey, Kate Turk, Ana Vives-Rodriguez, Chad Lane, Kirk Daffner, Dan Press, Chris Jagiello, David LaPorte, Michael Franzen, Keith Hawkins, Richard Delany, Patricia Boyle, Malissa Kraft, Lee Ashendorf, Helen Denison, and Edith Kaplan.
The content of this book has been derived from the patients whom the authors have seen in their private practices along with literature reviews conducted solely for the purpose of this book. These reviews and the writing of this book have been conducted during early mornings, late nights, weekends, and vacations. Their contribution to this book was conducted outside of both their VA tours of duty and their Boston University/ NIH research time.
Introduction
Caregiving is hard. It’s hard whether you’re caring for your spouse, parent, grandparent, sibling, other family member, or friend. Even if you had an extra 10 hours each day to do it, it’s hard to manage all the problems that come with dementia. And caring for a loved one with dementia can sometimes feel like a long, lonely journey. That’s one reason we’ve woven two stories into the book—to remind you that you are not alone. We hope that one of these stories will resonate with you. Let’s consider the first story.
“Dad, where are you?” Sara asks into her phone. “Your neighbor called; she saw smoke coming out of your house. I’m here now. It looks like you left the stove on with something in the frying pan.”
“Oh no, not again!” Jack exclaims. “I was trying to make an . . . make one of those things with eggs and cheese, but I didn’t have any cheese. So I ran out to get some.”
“OK, but you need to turn the stove off if you are leaving the house.”
“I thought I turned it off—I’ve even got notes up to remind me—but I must have forgotten.”
“Can you come home now? We need to clean things up.”
“Well, that’s another thing . . . I confess I was happy to see you calling me, because I’m sort of lost.”
Sara takes in a deep breath as she thinks, He used to know this city like the back of his hand.
“OK, I just asked a guy,” Jack continues. “He says I’m on Main Street near Panner Avenue, heading east.”
“So, just make a U-turn; you’ll be back in your neighborhood in 15 minutes.”
“OK, great. Maybe you can stay on the phone in case I get lost.”
Sara hears a grating and squeaking sound, followed by a loud pop.
“Dad, what was that noise! Are you alright?”
“Ah, Sara, I think I popped my tire. I guess I pulled too close to the curb.”
“Just stay there, Dad,” Sara says as she walks out of the house. “I’ll come pick you up, and then we’ll deal with your car.”
Because he was diagnosed with both Alzheimer’s disease and some small strokes 4 years ago, Sara understood that her father’s memory was impaired and would get worse. She has been helping him to eat right, exercise, and use reminders to keep him healthy and independent. She’s pleased with how well the two of them have worked together managing his memory problems and keeping him living on his own. With this latest episode, however, Sara is worried that her father won’t be able to live at home much longer. She knows he’s not ready for a nursing home, and they cannot afford a retirement community or assisted living. She wonders if he should move in with her and her daughter, but she’s worried that it would create even more work for her. She doesn’t know what to do.
Let’s consider another story.
Martin has been managing Nina’s dementia by himself. He’s proud that he has been able to keep her at home.
“Hold on, honey, I’ll be right there,” Martin says as he looks at the clock. 3:15 AM . He gets out of bed and catches up with Nina in the hallway.
“I know you were trying to make it to the bathroom,” he says as he pulls off the wet nightgown and absorbent undergarment. “You just didn’t make it in time, that’s all. Not to worry.”
He leads her into the bathroom and helps her sit down on the toilet. She’s able to urinate a little more.
“OK,” Martin says. “Let’s get you cleaned up.” He cleans her skin and helps her into a new undergarment and nightgown, then puts her back into their bed.
Martin is just starting to clean the hallway when she says, “I have to go.”
“You just went, honey,” he calls. “Try to go back to sleep.”
“I have to go,” she says again, sitting up in bed.
“Let’s not go through this every night,” he says, walking into the bedroom.
Martin then sees the urgent look in her eyes and suddenly understands. “OK, if you need to move your bowels, let’s go.”
But it is too late. Her undergarment, nightgown, and the bed linens are now soiled. He guides her into the bathroom again, wipes her a bit, and helps her sit down on the toilet. “Do you need to go anymore?”
She shakes her head no.
“Alright then,” he says, smiling. “Let’s get you cleaned up and back to bed. How about I give you a nice warm bath.”
He runs the bathwater. With a little cajoling, she settles into the soapy water. “OK, you just relax in the tub for a minute while I clean up.”
Fifteen minutes later she is in her third undergarment and nightgown and tucked into the clean sheets and blankets on the bed. Martin lies next to her, gently stroking her hair, until she falls asleep. Then he gets up and finishes cleaning the bedroom, hallway, and bathroom. Finally, he puts the dirty linens, towels, and nightgowns in the wash.
He looks at the clock as he crawls back into bed. 4:30 AM Well, hopefully I’ll get another hour of sleep, he thinks as he closes his eyes.
Do the stories of either Sara and Jack or Martin and Nina sound familiar? We will be following these characters throughout the book to illustrate the six steps to managing Alzheimer’s disease and dementia. We will be with them as we gain a better understanding of dementia (Step 1) and learn how to manage the problems that come with it (Step 2). We’ll discover which medications can help—and which may actually make things worse (Step 3). We will see how they build their care team and learn to care for themselves (Step 4), in addition to sustaining their relationship with their loved one—despite the dementia (Step 5). Lastly, we will see how they plan for the future, the end, and beyond (Step 6).
We hope that these stories—composites of real families we have worked with—along with the guidance and other insights we’ll be providing will make it easy to understand the issues you are facing and their implications. If, however, you would prefer to read the text without the stories, please do so. We’ve written the book so that the stories are optional.
Note that we try to be exhaustive in this book—discussing virtually every problem that could possibly arise. We certainly don’t expect your loved one to have all or even half of these problems. But we want you to be prepared for them all.
Without further ado, we now turn to Step 1 to understand what dementia is and how it is related to Alzheimer’s disease.
Step 1 UNDERSTAND DEMENTIA
Everyone is familiar with the terms “dementia” and “Alzheimer’s disease,” but not everyone knows exactly what they mean and how they are related. To begin our journey, we first need to develop a clear understanding of what dementia and Alzheimer’s disease are.
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What is dementia?
DEMENTIA MEANS PROBLEMS WITH THINKING AND MEMORY ARE IMPAIRING DAILY FUNCTION
Martin smiles as he thinks, Good girl, Nina—you slept through the rest of the night. It’s only when he climbs out of bed that he realizes how tired he is.
“Good morning, Nina,” he says as cheerfully as he can. “It’s time to get up and get ready for your doctor’s appointment.”
She looks up at him with love as they shuffle off to use the bathroom. Then, hand over hand, he helps her brush her teeth. Back in their bedroom, he picks out clothes for her and guides her into them, starting with a disposable undergarment. Then he eases her into an armchair so that he can get himself ready.
When people have problems with their memory and thinking to the point that they can no longer function independently, they have dementia. People are diagnosed with dementia when three things are present:
1. Concern that there has been a prominent decline in thinking and memory by the individual, their family, or their doctor
2. Substantial impairment on formal tests of thinking and memory
3. The thinking and memory problems interfere with their everyday activities
DEMENTIA HAS DIFFERENT STAGES
Dementia is commonly divided into four stages:
• Very mild
• Mild
• Moderate
• Severe
Individuals with very mild dementia have difficulty doing one or two complex daily activities, such as doing housework, paying bills, preparing meals, shopping, or taking medicines, whereas those with mild dementia have trouble with most of these activities. Difficulties with one or two basic activities of daily living, such as dressing, bathing, eating, using the toilet, and controlling bowel and bladder, suggest that the dementia is in the moderate stage, whereas difficulties with most of these basic activities suggest that the severe stage is present. Each of these four stages lasts between approximately 1 to 4 years. The total time from a diagnosis of dementia in the very mild stage until death ranges from about 4 to 16 years, although it more commonly lasts 6 to 12 years.
DEMENTIA CAN BE CAUSED BY MANY DIFFERENT DISORDERS
Dementia is not a disease in itself; rather, it is a condition with many different causes. It is analogous to a headache. Headaches can be due to many different causes, such as muscle tension, migraines, a blood clot, or a tumor. Just like a headache, some causes of dementia are relatively benign and easily treatable, whereas other causes are more serious and may have no treatment. Alzheimer’s is one disease that causes dementia. In fact,
it is the cause of dementia between 60% and 70% of the time, which is why people often confuse Alzheimer’s disease and dementia. Other common causes of dementia include vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. We’ll learn about the specific causes of dementia in Chapters 2 and 3.
PRIMARY CARE PROVIDERS MAY BE ABLE TO DETERMINE THE CAUSE OF DEMENTIA
Martin thinks about when it all started: Nina had trouble with her memory and complicated tasks. She might miss paying a bill or pay another one twice. She couldn’t balance her checkbook. She had trouble with several computer programs that she had used for years.
Nina mentioned her memory difficulties to her doctor. The doctor spoke with both of them about her symptoms and ordered some blood work and an MRI scan of her brain. The nurse handed Martin a questionnaire to fill out while she gave Nina a 15-minute pencil-and-paper test of thinking and memory.
In straightforward cases, a primary care provider may be able to diagnose your loved one. The essential elements of any dementia evaluation include a review of the symptoms, blood work, pencil-and-paper tests of thinking and memory, and a brain scan (as described in the next paragraph). The doctor will typically begin by reviewing whether there are any difficulties with thinking, memory, language, behavior, incontinence, or walking, in addition to other relevant problems. Medications are reviewed as well to make sure none are impairing your loved one’s memory, balance, or other functions (see Chapter 12). The examination of the blood includes basic tests to make sure there are no signs of infections or problems in
blood chemistry, in addition to special tests to rule out vitamin deficiencies and thyroid problems. Pencil-and-paper tests of cognitive function are essential, because different patterns of performance can suggest different disorders. In the primary care setting, brief screening tests of thinking and memory are typically used. These screening tests take 5 to 15 minutes and often include remembering a few words, drawing a clock, and doing simple arithmetic.
The basic brain imaging scans that may be recommended are magnetic resonance imaging (more commonly known as MRI) and computed tomography (more commonly known as CT or “cat” scans). MRIs use a powerful magnet to look at the brain and give better pictures than CT scans, which use X-rays, but either test will show whether there is anything wrong with the structure of the brain. An MRI or CT scan can detect brain disorders such as strokes, bleeds, tumors, fluid collections, multiple sclerosis, some infections, and many other disorders. You can also see patterns of brain atrophy (shrinkage) that may be common in one or another brain disease. However, patterns of brain atrophy are just one piece of evidence that can be evaluated when the doctor is making a diagnosis. We cannot usually know for sure that someone does or does not have a particular brain disease just by looking at a brain imaging scan.
SCREENING TESTS MAY NOT BE ACCURATE FOR SOMEONE WHO IS HIGHLY EDUCATED, IS VERY BRIGHT, HAS A LEARNING DISABILITY, OR HAS A DIFFERENT CULTURAL BACKGROUND
Nina was surprised by the doctor’s recommendation, exclaiming, “The MRI and blood work didn’t show any problems and I only had a bit of trouble on the memory test, but you’re sending me to a memory center? Can’t this just be normal aging?”
“It could be,” the doctor explained. “But when someone is quite bright like you are—regardless of how much schooling they have had—a brief screening test like I gave you might not detect subtle thinking and memory problems. I want to send you to a neuropsychologist who can give you more challenging tests that will be able to determine whether these small declines in thinking and memory are part of normal aging or the beginning of dementia.”
When interpreting tests of thinking and memory, we need to take into account intelligence as well as other factors, such as someone’s culture, occupation, and any prior learning disabilities. Therefore, screening tests that can be performed quickly in a primary care setting are not the right tests for everyone. Sometimes the screening test will suggest that a memory disorder is present when, in actuality, the problem is a life-long learning disability or another factor. Screening tests can also miss small but very real signs of memory loss in someone who is extremely smart. In these cases, it is best to see a neuropsychologist or other memory specialist.
NEUROPSYCHOLOGISTS EVALUATE AND DIAGNOSE PROBLEMS WITH THINKING, MEMORY, AND BEHAVIOR
Neuropsychologists are psychologists who have received advanced training in the use and interpretation of pencil-andpaper tests and questionnaires to help diagnose brain disorders. Neuropsychological evaluations factor in how many years of education someone has, their age, cultural differences, prior learning disabilities, current or prior psychiatric disorders, and other factors that could impact an individual’s performance on tests of thinking and memory. For most tests, instead of a simple “passing” or “failing” score, results are compared to
those of other people who are the same age and have a similar background. For instance, a test result that is normal for an 80year-old could represent a problem for someone age 50. Once they better understand the relative strengths and weaknesses of someone’s thinking and memory, neuropsychologists also make specific recommendations of things that people can do to improve their function in daily life.
NEUROLOGISTS DIAGNOSE AND TREAT
BRAIN DISORDERS
“Let me make sure I understand this,” Nina said when she was told her diagnosis at the memory center. “You’re saying that although my dementia is only mild, you think it’s from two disorders—Alzheimer’s plus dementia with Lewy bodies?”
“Yes,” the neuropsychologist explained. “You had some trouble with the memory tests in a pattern that looks like Alzheimer’s disease. Specifically, even when you learned information and could say it back to us, some of the information was rapidly forgotten. Rapid forgetting is common in Alzheimer’s.”
“OK, but what about this dementia with Lewy bodies?”
The neurologist leaned forward in his chair. “Do you remember telling me about seeing a dog or another animal in your bedroom on many nights? And Martin telling me about how you move around in your sleep—sometimes violently—as if you were acting out your dreams?”
“Yes. Is that how you know I have Lewy bodies?”
“That and the mild tremor in your hands, slight stiffness in your body, and your scuffing the floor a bit when you walk.”
Neurologists are medical doctors who specialize in the diagnosis and treatment of disorders of the brain and other parts of the nervous system. When evaluating a patient for a memory disorder, they are on the lookout for anything that could be interfering with memory as they are going through a person’s medical
history, current medications, personal habits, lifestyle factors, family history, physical and neurological exam findings, blood work, and brain imaging studies. Note that although a straightforward memory evaluation does not require a neurologist or other specialist, if the evaluation is complicated or if a routine evaluation does not yield an answer, seeing a neuropsychologist, neurologist, psychiatrist, geriatrician, or other memory specialist can be helpful. Your loved one may be referred to one of these specialists by their primary care provider, or you may decide that you want to seek one of them out for a second opinion.
In addition to conducting the usual parts of a physical examination that most physicians do, a neurologist performs a specialized neurological exam to look for any problems with the brain or nervous system. This exam looks for problems such as strokes, tumors, Parkinson’s disease, tremors, multiple sclerosis, and many other disorders that could be the cause of thinking and memory problems. Vision and hearing are always evaluated, because if one cannot see or hear well, it won’t be possible to process, understand, and remember information coming in through the ears and eyes.
Not all neurologists specialize in memory disorders, so if your loved one is going to see a neurologist for their dementia, make sure the physician has been trained in or has experience with memory disorders. Psychiatrists and geriatricians are also physicians who may be trained in dementia; they may be the best specialist in your community for your loved one to see.
SUMMARY
Dementia is the term used to describe progressive impairment of thinking and memory that interferes with daily function. Dementia is not a specific disorder, it is a condition with many causes. Alzheimer’s disease is the most common cause of dementia. Primary care providers are able to diagnose most
