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Six Steps to Managing
Alzheimer’s Disease and Dementia
Six Steps
to Managing
Alzheimer’s Disease
and Dementia
A Guide for Families
A N DR EW E. BU DSON, M D
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
M AU R E E N K . O ’C O N N O R , P S Y D
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
1
1
Oxford University Press is a department of the University of Oxford. It furthers
the University’s objective of excellence in research, scholarship, and education
by publishing worldwide. Oxford is a registered trade mark of Oxford University
Press in the UK and certain other countries.
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.
1 3 5 7 9 8 6 4 2
Printed by Integrated Books International, United States of America
C o nte nts
Preface vii
Acknowledgments xi
Introduction xiii
ST EP 1: U N DE R S TA N D DE M E N T I A
1 What is dementia? 3
STEP 2: M A NAG E P RO BL E M S
STEP 3: A S K A B OU T M E DIC AT IO N S
STEP 4: BU I L D YOU R C A R E T E A M
STEP 5: S U S TA I N YOU R R E L AT IO N S H I P
Index 317
P re f a c e
vii
viii Preface
“Dad, where are you?” Sara asks into her phone. “Your neigh-
bor 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.”
xiii
xiv Introduction
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.”
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 dis-
ease 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
U N DE R STA N D
DE M E N T I A
3
4 Step 1 Understand dementia
• Very mild
• Mild
• Moderate
• Severe
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 doc-
tor 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.
“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.”
those of other people who are the same age and have a similar
background. For instance, a test result that is normal for an 80-
year-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.
“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 bed-
room 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.”
SUMMARY
Dementia is the term used to describe progressive impair-
ment of thinking and memory that interferes with daily func-
tion. 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
10 Step 1 Understand dementia
• You are concerned about your loved one’s memory and you take
them to see their doctor. The doctor diagnoses them with dementia.
Should you be satisfied with that diagnosis?
◦ No! Dementia is not a disease in itself; it is a condition with
many different causes. Go back to the doctor and ask what is the
cause of the dementia. If they cannot give you an answer, you
will need to take your loved one to a specialist.
• Is dementia the same thing as Alzheimer’s disease?
◦ No. Dementia is a general term indicating that thinking and
memory have deteriorated to the point that daily function is
impaired. Alzheimer’s disease is one of many causes of demen-
tia. Other causes of dementia include strokes, infections, vita-
min deficiencies, and other neurological diseases.
• I’m sure that my loved one has dementia, but I haven’t taken them
to see their doctor. Can the doctor actually do anything to help?
◦ Yes! Taking them to the doctor is very important. They may have
an infection, vitamin deficiency, thyroid disorder, or depression
such that, after treatment, their memory could improve—or even
return to normal. In addition, in Step 3 we will discuss medica-
tions available to help people with memory disorders that can
make a real difference.
2
W h at is Alzheime r’s
disease?
11
12 Step 1 Understand dementia
Sponge in hand, Sara is working with her father, Jack, to clean the
soot from the kitchen after he left the stove on.
“Dad, do you know how many cans of corn you have in here?”
Jack joins Sara at the cupboard. “Holy moly! There must be 20
cans of corn in there!”
“Twenty-three. I counted them.”
“Well, I guess I can’t keep track of how many I have. I’ll have to
make a note not to buy any more corn. Now, where did I put
that notebook . . .”
Sara moves on to clean the refrigerator.
“Dad, did you know you have spoiled food in here?”
“Do I? I guess I forgot about it.”
Sara thinks about how her father’s disease has progressed since
he was diagnosed 4 years ago. Well, she sighs as she throws
out something that might have been chicken a month ago, his
dementia has certainly gotten worse.
2 Alzheimer’s disease 13
SUMMARY
Alzheimer’s is a disease in which amyloid plaques build up in the
brain. The plaques damage brain cells, the cells develop tangles,
and the tangles destroy the cells. Alzheimer’s disease begins
silently and progresses through very mild, mild, moderate, and
severe stages. Age, being a woman, and family history are risk
factors for the disease. Tests using a lumbar puncture or PET scan
can help to confirm the diagnosis of Alzheimer’s disease, but they
are only used in special circumstances. Lastly, you can reduce your
risk of developing Alzheimer’s disease by eating a Mediterranean-
style diet, engaging in aerobic exercise, and staying socially active.
Let’s consider some examples to illustrate what we learned in
this chapter.
• Your friend told you that there is nothing you can do about
Alzheimer’s disease because if we live long enough everyone will get
it. Is that true?
◦ No. Alzheimer’s disease is more common in aging, but many
people live to age 90 or 100 without the disease. Aerobic exer-
cise, healthy eating, and social activities can all help reduce one’s
chances of developing Alzheimer’s disease.
18 Step 1 Understand dementia
“Hi everyone, I’m Sara, and my father, Jack, has both Alzheimer’s
and vascular dementia. When he was diagnosed, we never
thought he had a stroke, but the doctor said she could see
lots of little strokes on the MRI. However, in the last couple of
years he had three strokes that we brought him to the hospital
for. The first caused slurred speech. The second made his face
droop and he kept dropping things out of his right hand. The
third was really weird—he didn’t notice things on his left side,
19
20 Step 1 Understand dementia
didn’t even shave the left side of his face! Luckily, each of these
strokes got better after a few days, although the problems can
come out again if he gets sick or is really tired. But the thing
I really want to talk about is that I can’t help getting angry at
him for doing stupid things, like leaving the stove on or get-
ting lost. I know it’s from the dementia, but I can’t help feeling
annoyed. And then I feel guilty about having those feelings,”
she finishes, her voice cracking.
• High cholesterol
• High blood pressure
Lifestyle factors
• Smoking
• Sedentary lifestyle
• Unhealthy diet
• Obesity
• Alcohol intake of more than one drink per day
Uncontrollable factors
• Old age: after age 55, the stroke risk doubles every decade
The good news is that, with the exception of age, you can help
your loved one take charge of their life and reduce their risk of
strokes. Work with their doctor to make sure that their medical
conditions are under good control. If they are smoking, encour-
age them to quit today. Help them exercise for better health, eat
a healthy diet, and keep a healthy weight. If they drink alcohol,
make sure they drink in moderation—no more than one drink
per day.
“My name is Martin, and Nina, my wife, also has two diseases.
She has Alzheimer’s and she also has dementia with Lewy
bodies. When it started, Nina was having difficulty paying
the bills and balancing the checkbook. She would also forget
things—that’s from the Alzheimer’s. But then she began wak-
ing me up, saying, ‘There’s a dog in our bedroom!’ I’d turn
on the light and we’d look around together and there would
never be a dog. She also began to move her arms and legs
while she was sleeping like the dog was chasing her! You see,
she was acting out her dreams. Then her walking became
22 Step 1 Understand dementia
slow and shuffling, her writing shrank, and her hands started
shaking. Now we’re struggling with the basics, like dressing
and getting to the bathroom on time. The main thing I’m wor-
rying about is: How long can I keep this up? I’m barely getting
any sleep, I’m doing laundry twice a day, and I’m no spring
chicken myself.”
FRONTOTEMPORAL DEMENTIA
AFFECTS PERSONALITY, BEHAVIOR,
AND COGNITION
“With my wife,” the next member in the group begins, “the prob-
lem is with words. It began when she couldn’t find the words
she was looking for. So, my kids and I began to jump in and fin-
ish her sentences for her. We didn’t think much of it—I mean,
I’ve got trouble coming up with names myself. But then she
started not knowing what the words mean. We were talking
with our granddaughter about going to the zoo, and she says
she’s excited to see the giraffes. My wife looks at me and asks,
‘What’s a giraffe?’ Then in October we’re getting ready to go buy
a pumpkin and she says, ‘Pumpkin? What’s a pumpkin?’ I mean,
she’s lived in New England all her life—grew up with Halloween.
That’s when I started to get scared. We knew something was
wrong. Now she really doesn’t have any language left. But the
funny thing is, somehow we can still communicate. With her
face and gestures and the movements she makes, I’m able to
figure out what she wants—most of the time, anyways—and
she always knows when to give me a hug.”
SUMMARY
In addition to Alzheimer’s disease, other brain disorders of
aging that affect thinking and memory include vascular demen-
tia, dementia with Lewy bodies, frontotemporal dementia, pri-
mary progressive aphasia, and normal pressure hydrocephalus.
Each produces characteristic changes in thinking, memory,
language, behavior, and/or movement that allow you and the
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he was not far wrong and indeed developed into one of his most
ardent supporters. In the October of 1852, the first year of their
friendship, Kingsley wrote a sonnet which he dedicated
“To the Authoress of ‘Our Village.’
“M. R. Mitford.”
One result of the residence at Three Mile Cross, amid the
dilapidations of the later years, was the acute rheumatism from
which Miss Mitford began to suffer before her removal and which, as
the years crept on, got a firmer hold of her system. The
consequence was that often, for weeks at a time, she was not able
to walk a step, and had to be carried bodily downstairs by Sam, her
new man-of-all-work, assisted by K——, whom he had married. This
absence of walking exercise was a great hardship, for it was among
her chief delights to ramble round the lanes with the dogs, seeking
the earliest wild blooms and, with the aid of her favourite crook-stick,
gathering the honey suckle as it rioted in the hedge-tops. So, with
such exercise impossible, recourse was had to the pony-chaise,
wherein, with either Sam or K——, for driver, they would amble
quietly around the countryside or into Swallowfield Park, near by,
where, if they were at home, there was always a sure welcome from
Lady Russell or her daughters.
Mary Russell Mitford.
(From a painting by John Lucas, 1852.)
It was during one of these drives that the accident occurred which
was to render her still more helpless and to hasten her end. It was
caused by the overturn of the chaise, which threw the occupants with
great force on to the hard gravelled road. No bones were broken, but
the nerves of the hip and thigh were bruised and shattered, and
there was some injury to the spine which, though not noticed at the
time, soon developed seriously. A long and painful illness was the
result, during which the patient suffered the greatest agony,
frequently unable to move in order to change her position while in
bed. Lady Russell was a frequent and daily visitor, coming through
the mud and rain—for it was winter—to bring comforts for mind and
body to her sick friend. The spring of 1853 saw a slight change for
the better, and among the old friends who came to visit the invalid
was Lucas, the painter, who succeeded in getting his old patroness
to sit for another portrait. Miss Mitford was delighted with the result—
the expression she thought was wonderfully well-caught, “so
thoughtful, happy, tender—as if the mind were dwelling in a pleasant
frame on some dear friend.” With the approach of summer she had
gained sufficient strength to walk out into the garden, where, under a
great acacia tree, and near to a favourite syringa-bush, she had a
garden-seat and wrote, when not too weary. Here, and in her
bedroom, she worked at last on the novel, so long put off. By the end
of 1853 it was in the printer’s hands, and every effort was being
made to publish it early in 1854. “ Atherton has twice nearly killed
me,” wrote Miss Mitford to William Harness, “once in writing—now,
very lately, in correcting the proofs.” Talfourd, hearing of his old
friend’s illness, went to see her in March of 1854 and sat by her
bedside much affected at the change he saw in her. “All the old
friendship came back upon both, as in the many years when my
father’s house was a second home to him. We both, I believe, felt it
to be a last parting”—and that, indeed, it was, for Talfourd died, while
delivering a judgment, a fortnight later! The news of his death was a
severe shock to Miss Mitford.
Early in April, 1854, Atherton was published in three volumes by
Messrs. Hurst & Blackett, and, to the author’s great delight, Mr. Hurst
sent her word that Mr. Mudie had told him the demand was so great
as to oblige him to have four hundred copies in circulation. The
Dedication was “To her Dear Friend, Lady Russell, whose Sympathy
has Cheered the Painfullest Hours, as her Companionship has
Gladdened the Brightest,” and in the Preface she set forth in detail
the awful sufferings which she was forced to endure while writing the
work, “being often obliged to have the ink-glass held for me, because
I could not raise my hand to dip the pen in the ink.”
Mary Mitford.
(copy of a sketch made from memory
in 1853. E. H.)
“Verse! go forth
And breathe o’er gentle breasts her worth.
Needless the task ... but, should she see
One hearty wish from you and me,
A moment’s pain it may assuage—
A rose-leaf on the couch of Age.”
FINIS
Obvious typographical errors and punctuation errors have been corrected after
careful comparison with other occurrences within the text and consultation of
external sources.
No attempt has been made to reconcile the spelling and hyphenation between
the author’s writing and Mitford’s.
Some hyphens in words have been silently removed, some added, when a
predominant preference was found in the original book.
Except for those changes noted below, all misspellings in the text, and
inconsistent or archaic usage, have been retained.
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