Living With Alzheimer's Disease

160 Pages·2013·4.74 MB·English

Living with
Alzheimer’s
A Resource Guide for
Families and Caregivers
Revised Edition 2013
Prepared and Produced by the:
Alzheimer’s Association Mississippi Chapter
2013 print edition funded through a grant
Funding provided through a grant from the U.S. Department of Health and Human
Services, Administration for Community Living award number 90RA0035/01.
© 2013 Alzheimer’s Association Mississippi Chapter
Foreword
In early 1998, the vision to produce a single resource guide for families living with Alzheimer’s Disease in
Mississippi was a seemingly impossible dream. The dream became reality in 1999; and with grant funding
awarded through the Mississippi Department of Mental Health, the Chapter produced 15,000 copies of the
original 60-page resource guide. The guide received favorable results throughout the state with demand for
the guide exhausting the supply within 18 months.
Living with Alzheimer’s, the revised edition 2004, continued the original theme as a resource guide for
families caring for a loved one with Alzheimer’s or a related dementia. The guide was a compilation of more
than 50 publications of the Association. In addition, chapter staff wrote portions of the guide with references
cited. Resources have been updated and nearly 50 pages added. Every effort has been made to verify the
accuracy of resources. We apologize for any omissions, choosing to err by eliminating data where conflicting
information was apparent. Living with Alzheimer’s 2006 revision expanded the 2004 revised edition by
adding several new sections and correcting resources that changed due to Hurricane Katrina August 2005.
Living with Alzheimer’s 2011 revision has expanded the 2009 revised edition by adding new resources and
educational content. This guide is a compilation of publications from the National Alzheimer’s Association
and its Chapters. Every effort has been made to assure the accuracy of resources known to the Mississippi
Chapter at the time of this printing. We apologize for any omissions or mistakes. We would appreciate your
notifying the Chapter office about additions or corrections.
Living with Alzheimer’s is a consolidated source to assist families as they live through the disease process.
It has virtually no neurological, physiology, psychological or technical information and has been designed
primarily for family caregivers. The first edition, however, was widely used by professional caregivers in their
day-to-day management of persons with Alzheimer’s in healthcare settings. This guide continues to be a
favorite resource for professionals.
Print materials are available in Spanish by contacting the National Office.

2 Alzheimer’s Association [phone] [phone] www.alz.org/ms
Acknowledgements
Special thanks from the Alzheimer’s Association Mississippi Chapter…
On behalf of the 53,000 plus persons with Alzheimer’s disease or a related dementia in Mississippi,
the Alzheimer’s Association wishes to express its deepest appreciation to the Administration on Aging,
Department of Health and Human Service in Washington, D.C. for its healthcare priority to expand home
and community based services to families and caregivers affected by Alzheimer’s disease.
Many thanks to Dr. Randel Hendrix, Past-Executive Director of the Mississippi Department of Mental
Health, for his role in the initial collaborative partnership between the Alzheimer’s Association and the
Mississippi Department of Mental Health Division of Alzheimer’s Disease and Other Dementia, to expand
services to families affected by Alzheimer’s disease throughout the state. Thank you again to Mr. Edwin C.
LeGrand III, current Executive Director of the Mississippi Department of Mental Health, for his continued
support of this collaboration.
Additional thanks to Kathy Van Cleave (Director) and Melora Jackson, Division of Alzheimer’s, MS
Department of Mental Health; Sara Murphy, Program Coordinator, and Patty Dunn, Executive Director,
of the Alzheimer’s Association for their efforts in research, data collecting, editing, and layout of the
expansion of the 2013 revised edition. Special thanks to Julie Orr, MA, MCP, LPC and volunteer for sharing
her time and editing skills to prepare the 2013 edition for publication.
The Board of Directors
Alzheimer’s Association Mississippi Chapter

Alzheimer’s Association [phone] [phone] www.alz.org/ms 3
Table of Contents
Overview of Alzheimer’s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
What is Alzheimer’s Disease, Causes and Risk Factors, Warning Signs, Visual Representation of Alzheimer’s
Disease, Stages, Comparison of Functional Stages, Younger-onset
Treating Alzheimer’s and Related Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Medication Intervention, Medications and Overmedication, Behavioral Intervention, Getting a Diagnosis
Hygiene and Personal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Grooming, Dressing, Incontinence, Bathing, Eating
Making Every Day Count . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
Effective Communication, Planning Daily Activities, Therapeutic Care Approaches, Visiting, Adult Day Care
and Group Respite, Maintain Your Brain®
Modifying the Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64
Consistency, Use of Color, Flooring, Furnishings, Pets, Safety Devices, Lighting
Managing Challenging Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
Repetition, Hallucinations, Aggressive or Combative Behavior, Suspicious Thoughts, Sexuality, Sundowning,
Driving, Home Safety, Travel Safety, Wandering and MedicAlert® + Alzheimer’s Association Safe Return®
Late Stage Alzheimer’s Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84
Food and Liquid Intake, Healthy Skin and Body, Bladder and Bowel Function, Risk of Infections and
Pneumonia, Recognizing Painor Illness, Staying Connected, Moving Your Loved One to a New Home,
Deciding on Hospice Care
Finding Home Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92
Steps to Finding Care at Home, Evaluate Your Resources, Types of Home Care
Choosing a New Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
Begin with a Plan, Determine Type of Setting, Making Site Visits, Know Your Rights
Ethical Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104
Capacity for Healthcare Decisions, Advance Directives, Healthcare Surrogate, Family Communication about
Healthcare Values, Treatment Withdrawal/Refusal
Holiday Hints . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107
Caregiver, Person with Alzheimer’s, Visitor, Gift-Giving Ideas
Disaster Preparedness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
Advance Preparations, Tips When Relocated
Caring for the Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
Signs of Caregiver Stress, Ways to Reduce Stress, Ways to Help a Family Living with Alzheimer’s, Kids and
Teens as Caregivers, Caregiver’s Prayer, A Caregiver’s Bill of Rights
Chronic Disease Self-Management Program Fact Sheet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123
Information and Referral Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
Adult Day Care and Group Respite Centers, Physicians: Geriatric Medicine, Psychiatrists, Neurologists,
Alzheimer’s Geriatric/Psychiatric Units, Area Agencies on Aging, Alzheimer’s Care Units, Mississippi Legal
Services, Counseling Services, Mississippi Resources, National Resources, Helpful Websites, Brain Games

4 Alzheimer’s Association [phone] [phone] www.alz.org/ms
Overview of
Alzheimer’s
Disease
NOTES:
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____________________________________________ • What is Alzheimer's Disease?
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• Causes and Risk Factors
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• Warning Signs
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• Visual Representation of
____________________________________________
Alzheimer's Disease
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• Stages of Alzheimer's Disease
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• Comparison of Functional Stages
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• Younger On-Set
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5
Overview of Alzheimer’s Disease
Alzheimer’s disease was identified over 100 years ago but
research into its causes, risk factors and symptoms
have progressed in only the last 30 years. Today,
this progressive and irreversible brain disease
is recognized as one of the most devastating
maladies of our time.
Alzheimer’s disease causes a steady decline
in memory and is the leading cause
of dementia or the loss of intellectual
abilities, thinking, remembering and
reasoning – severe enough to interfere
with a person’s activities of daily
living at work or at home.
Over 5 million Americans are living
with Alzheimer’s disease, including
an estimated 53,000 in Mississippi.
By 2050, that number is expected to
be 16 million Americans. The number
of Americans surviving into their 80s
and 90s is rising and, due to advances
in medicine, is expected to continue to
rise. The baby boom generation has
begun to reach the age range where the
risk of developing Alzheimer’s disease is
elevated.
Alzheimer’s disease affects people
regardless of sex, race, ethnic group or socio-
economic circumstances. It is currently the
sixth leading cause of death among American
adults and the only cause of death among the top ten
in America without a way to prevent it, cure it, or even
slow its progression
In America in 2012, 15.4 million families and friends provided 17.5 billion hours of unpaid
care to those with Alzheimer’s disease and other dementias – care valued at $216.4 billion. In
Mississippi in 2012, 198 thousand families and friends provided 226 million hours of unpaid
care to those with Alzheimer’s disease and other dementias – care valued at $2.6 billion.

6 Alzheimer’s Association [phone] [phone] www.alz.org/ms
Overview of Alzheimer’s Disease
What is Alzheimer’s Disease?
Alzheimer’s disease pronounced (AHLZ-hi-merz) is one of several disorders that cause the gradual loss of
brain cells. The disease was first described by German physician Dr. Alois Alzheimer in 1906. Although the
disease was once considered rare, research has shown that it is the leading cause of dementia.
Dementia All types of dementia involve
mental decline that:
Dementia is an umbrella term for several symptoms related
• occurred from a higher level
to a decline in thinking skills. Common symptoms include a
(for example, the person
gradual loss of memory, problems with reasoning, judgment,
didn’t always have a poor
disorientation, difficulty in learning, loss of language skills, and
memory)
decline in the ability to perform routine tasks.
• is severe enough to interfere
People with dementia exhibit changes in their personalities and with usual activities and daily
behavior such as agitation, anxiety, delusions (believing in a reality life
that does not exist), and hallucinations (perceiving things that do
• affects more than one of the
not exist).
following four core mental
abilities:
Disorders that Cause Dementia
− recent memory (the ability
to learn and recall new
Several disorders similar to Alzheimer’s can cause dementia. Each
information)
disorder involves processes that destroy brain cells. Some treatable
conditions – such as depression, drug interactions, and thyroid − language (the ability to write
problems – can cause dementia. With early intervention these or speak, or to understand
forms of dementia may be effectively treated and even reversed. written or spoken words)
− visuospatial function (the
Mild cognitive impairment (MCI) ability to understand and
In MCI, a person has problems with memory or one of the other use symbols, maps, etc.,
core functions affected by dementia. These problems are severe and the brain’s ability to
enough to be noticeable to other people and to show up on tests of translate visual signals into
mental function, but not serious enough to interfere with daily life. a correct impression of
When symptoms do not disrupt daily activities, a person does not where objects are in space)
meet criteria for being diagnosed with dementia. Individuals with − executive function (the
MCI have an increased risk of developing Alzheimer’s disease over ability to plan, reason, solve
the next few years, especially when their main problem involves problems and focus on a
memory. However, not everyone diagnosed with MCI progresses to task)
Alzheimer’s or another kind of dementia.
Alzheimer’s disease
Although symptoms can vary widely, the first problem many people with Alzheimer’s notice is forgetfulness
severe enough to affect their work, lifelong hobbies or social life. Other symptoms include confusion, trouble
with organizing and expressing thoughts, misplacing things, getting lost in familiar places, and changes in
personality and behavior. Alzheimer’s disease advances at different rates.
These symptoms result from damage to the brain’s nerve cells. The disease gradually gets worse as more
cells are damaged and destroyed. Eventually, the person with Alzheimer’s will need complete care. Even if
the individual has no other serious illness, the loss of brain function will ultimately lead to death. Scientists
do not yet know why brain cells malfunction and die, but two prime suspects are abnormal microscopic
structures in the brain called plaques and tangles.
Alzheimer’s Association [phone] [phone] www.alz.org/ms 7
Overview of Alzheimer’s Disease
Vascular dementia (VaD)
Many experts consider vascular dementia the second most common type, after Alzheimer’s disease. It occurs
when clots block blood flow to parts of the brain, depriving nerve cells of food and oxygen. If it develops
soon after a single major stroke blocks a large blood vessel, it is sometimes called “post-stroke dementia.”
Once called “multi-infarct dementia,” it can also occur when a series of very small strokes, or infarcts, clog
tiny blood vessels. Individually, these strokes do not cause major symptoms, but over time their combined
effect is damaging. Symptoms of vascular dementia can vary, depending on the brain regions involved.
Forgetfulness may or may not be a prominent symptom, depending on whether memory areas are affected.
Other common symptoms include difficulty focusing attention and confusion. Decline may occur in “steps,”
where there is a fairly sudden change in function. People who develop vascular dementia may have a history
of heart attacks. High blood pressure or cholesterol, diabetes, or other risk factors for heart disease are often
present.
Mixed dementia
In mixed dementia, Alzheimer’s disease and vascular dementia occur at the same time. Many experts believe
mixed dementia develops more often than was previously realized and that it may become increasingly
common as people age. This belief is based on autopsies showing that the brains of up to 45 percent of
people with dementia have signs of both Alzheimer’s and vascular disease. Decline may follow a pattern
similar to either Alzheimer’s or vascular dementia or a combination of the two. Some experts recommend
suspecting mixed dementia whenever a person has both (1) evidence of cardiovascular disease and (2)
dementia symptoms that worsen slowly.
Dementia with Lewy bodies (DLB)
In DLB, abnormal deposits of a protein called alpha-synuclein form inside the brain’s nerve cells. These
deposits are called “Lewy bodies” after the scientist who first described them. Lewy bodies have been found
in several brain disorders, including dementia with Lewy bodies, Parkinson’s disease and some cases of
Alzheimer’s.
Symptoms of DLB include:
• Memory problems, poor judgment, confusion and other symptoms that can overlap with Alzheimer’s
disease
• Movement symptoms are also common, including stiffness, shuffling walk, shakiness, lack of facial
expression, problems with balance and falls
• Excessive daytime drowsiness
• Visual hallucinations
• Mental symptoms and level of alertness may get better or worse (fluctuate) during the day or from
one day to another
• In about 50 percent of cases, DLB is associated with a condition called rapid eye movement (REM)
sleep disorder. REM sleep is the stage where people usually dream. During normal REM sleep, body
movement is blocked and people do not “act out” their dreams. In REM sleep disorder, movements
are not blocked and people act out their dreams, sometimes vividly and violently.
8 Alzheimer’s Association [phone] [phone] www.alz.org/ms
Overview of Alzheimer’s Disease
Parkinson’s disease (PD)
Parkinson’s is another disease involving Lewy bodies. The cells that are damaged and destroyed are chiefly
in a brain area important in controlling movement. Symptoms include tremors and shakiness; stiffness;
difficulty with walking, muscle control, and balance; lack of facial expression; and impaired speech. Many
individuals with Parkinson’s develop dementia in later stages of the disease.
Frontotemporal dementia (FTD)
FTD is a rare disorder chiefly affecting the front and sides of the brain. Because these regions often, but
not always, shrink, brain imaging can help in diagnosis. There is no specific abnormality found in the brain
in FTD. In one type called Pick’s disease, there are sometimes (but not always) abnormal microscopic
deposits called Pick bodies. FTD progresses more quickly than Alzheimer’s disease and tends to occur at a
younger age. The first symptoms often involve changes in personality, judgment, planning, and social skills.
Individuals may make rude or off-color remarks to family or strangers, or make unwise decisions about
finances or personal matters. They may show feelings disconnected from the situation, such as indifference
or excessive excitement. They may have an unusually strong urge to eat and gain weight as a result.
Creutzfeldt-Jakob disease (CJD)
Creutzfeldt-Jakob disease (pronounced CROYZ-felt YAH-cob) is a rare, rapidly fatal disorder affecting
about 1 in a million people per year worldwide. It usually affects individuals older than 60. CJD is one of the
prion (PREE-awn) diseases. These disorders occur when prion protein, a protein normally present in the
brain, begins to fold into an abnormal three-dimensional shape. This shape gradually triggers the protein
throughout the brain to fold into the same abnormal shape, leading to increasing damage and destruction
of brain cells. Recently, “variant Creutzfeldt-Jakob disease” (vCJD) was identified as the human disorder
believed to be caused by eating meat from cattle affected by “mad cow disease.” It tends to occur in much
younger individuals, in some cases as early as their teens.
The first symptoms of CJD may involve:
• impairment in memory, thinking, and reasoning
• changes in personality and behavior
• depression or agitation also tend to occur early
CJD progresses
• problems with movement may be present from the beginning
rapidly and is
or appear shortly after the other symptoms
usually fatal
Normal pressure hydrocephalus (NPH)

within a year.
The three chief symptoms of NPH are:
(1) difficulty walking
(2) loss of bladder control
(3) mental decline, usually involving an overall slowing in understanding and reacting to information
Normal pressure hydrocephalus (high-droh-CEFF-a-luss) is another rare disorder in which fluid
surrounding the brain and spinal cord is unable to drain normally. The fluid builds up, enlarging the
ventricles (fluid-filled chambers) inside the brain. As the chambers expand, they can compress and damage
nearby tissue. “Normal pressure” refers to the fact that the spinal fluid pressure often, although not always,
falls within the normal range on a spinal tap.
Alzheimer’s Association [phone] [phone] www.alz.org/ms 9
Overview of Alzheimer’s Disease
NPH can occasionally be treated by surgically inserting a long thin tube called a shunt to drain fluid from
the brain to the abdomen. However, most experts believe it is unlikely that significant numbers of people
diagnosed with Alzheimer’s or Parkinson’s actually have NPH that could be corrected with surgery. NPH is
rare, and it looks different from Alzheimer’s or Parkinson’s to a physician with experience in assessing brain
disorders. When shunting surgery is successful, it tends to help more with walking and bladder control than
with mental decline.
A person’s responses are delayed, but they tend to be accurate
and appropriate to the situation when they finally come.
Huntington’s disease (HD)
HD is a fatal brain disorder caused by inherited changes in a single gene. These changes lead to destruction
of nerve cells in certain brain regions. Anyone with a parent with Huntington’s has a 50 percent chance of
inheriting the gene, and everyone who inherits it will eventually develop the disorder. In about 1 to 3 percent
of cases, no history of the disease can be found in other family members. The age when symptoms develop
and the rate of progression vary.
Symptoms of Huntington’s disease include twitches, spasms, and other involuntary movements; problems
with balance and coordination; unraveling the personality changes; and
Unraveling the
trouble with memory, concentration or making decisions.
Mystery
Wernicke-Korsakoff syndrome
of Alzheimer’s.
Wernicke-Korsakoff syndrome is a two-stage disorder caused by
a deficiency of thiamine (vitamin B-1). Thiamine helps brain cells
produce energy from sugar. When levels of the vitamin fall too low,
cells are unable to generate enough energy to function properly.
Wernicke encephalopathy is the first, acute phase, and Korsakoff
psychosis is the “Everyone who long-lasting, chronic stage."
The most common cause is alcoholism. Symptoms of Wernicke- “Everyone
Korsakoff syndrome include:
who has
• confusion, permanent gaps in memory and problems with
learning new information Alzheimer’s

• individuals may have a tendency to “confabulate,” or make up has d ementia,
information they can’t remember
but everyone
• unsteadiness, weakness and lack of coordination dementia
with dementia
If the condition is caught early and drinking stops, treatment with high-
dose thiamine may reverse some, but usually not all, of the damage. In does not have
later stages, damage is more severe and does not respond to treatment.
Alzheimer’s.”
The Alzheimer’s Association is the world's leading voluntary health
organization in Alzheimer care, support and research.
10 Alzheimer’s Association [phone] [phone] www.alz.org/ms