Family Care Guide
A GUIDE FOR FAMILIES CARING FOR
SOMEONE WITH ALZHEIMER’S DISEASE
OR A RELATED DEMENTIA
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Table of Contents
TABLE OF CONTENTS
Preface: LETTER FROM PAUL RAIA, PHD .................................. PAGE 1
Chapter 1: INTRODUCTION ......................................................... PAGE 5
What is Alzheimer’s disease?
Ten warning signs
Diagnosis of Alzheimer’s disease
Risk factors
Progression of Alzheimer’s disease
Chapter 2: COMMUNICATION .......................................... PAGE 17
Communication is more than words
Asking questions and giving directions
Word retrieval
Handling complaints or insults
Chapter 3: DAILY LIVING ................................................ PAGE 23
Bathing
Grooming
Dressing
Using the bathroom
Nutrition
Mealtime
Sleeping
Exercise
Shopping
Activities
Chapter 4: UNDERSTANDING BEHAVIORS ........................ PAGE 35
Memory loss
Late afternoon confusion
Losing and hiding things
Shadowing or clinging
Pacing
Anger
Catastrophic reactions
Hallucinations and delusions
Sexuality
Depression
Physical aggression
ALZHEIMER’S ASSOCIATION
Chapter 5: SAFETY ISSUES ....................................................... PAGE 45
Wandering
Driving
Financial safety
Smoking and drinking
Absence of a caregiver
Medications
Household safety
Chapter 6: PLANNING AHEAD ................................................... PAGE 57
Partnering with the doctor
Legal and financial planning
Community resources
Successful introduction of services
Chapter 7: TAKING CARE OF YOURSELF ................................. PAGE 67
Caring for the caregiver
Caregiver support groups
Children and teens
Talking to family and friends
REFERENCES ............................................................................... PAGE 73
APPENDICES ............................................................................... PAGE 75
PAGE 1
Dear Caregiver:
This is the seventh edition of the Family Care Guide. The first edition was published in
1987 as part of an Administration on Aging Grant project. The intention then, as it is now,
was to provide family caregivers with concise information on how to live and cope with
Alzheimer’s disease and other related illnesses. We want the Guide to be a quick reference
book that provides stage-related information as you need it, when you need it.
Many of the strategies and techniques of care were originally contributed by active and
former family caregivers. In a sense, the Guide was, and still is, a book of collective
knowledge hard-gained by hundreds of caregivers providing thousands of hours of care.
The information is also drawn from the latest literature on the various topics. This is a
guide that is meant to be read in sections and probably not read from cover to cover in one
sitting. We took this approach because we realize how demanding active caregiving can be.
There are more than 5 million persons with Alzheimer’s disease in the United States
today, and approximately 15 million family caregivers provide 17 billion hours of unpaid
care in the community. On average, the person remains at home receiving care for five
years. Time is a precious commodity for most caregivers.
In order to meet the demands of active caregiving for as long as possible, it is important
that the caregiver(s) have regular predictable time off, time to replenish the soul, time for
yourself or, time to socialize. Ask for help, if you need it. Consider using adult day health
programs and volunteer or paid help in the home. Take care of yourselves as well as those
in your care.
Since the first edition of this Guide, we have learned that many of the behavioral
symptoms associated with Alzheimer’s disease, and many of the related disorders,
are treatable, if not outright avoidable. This Guide provides the reader with innovative
practical approaches to care that can limit or prevent difficult symptoms. By no means
are we implying that these techniques will arrest the progression of Alzheimer’s disease,
clearly they will not, but using them skillfully will limit many symptoms that were once
thought to be an inevitable part of the disease process.
Because the ability to perceive emotion; to feel a range of emotions; to hold emotion; to
respond to emotion; and to learn through emotional processing of information all remain
intact late into Alzheimer’s disease, maintaining positive emotion is a central concept in
this Guide. The caregiver’s goal is always to bring about a positive emotion in the person
with Alzheimer’s disease. Working from this perspective will allow you, the caregiver,
to focus on the person that is still there, and not on what has been lost to the disease.
Hopefully, this perspective will empower you with new skills that will reduce your stress
and strengthen your relationship with the person with dementia.
PAGE 2 ALZHEIMER’S ASSOCIATION
Listed below are a few general guidelines that may help to maintain a positive emotion in
the person with dementia and reduce caregiver stress.
�
Never argue with the person, rather refocus the person’s attention to something
different or redirect his or her behavior to something new.
�
Never assume the person will be able to change his or her behavior because of your
instructions. New learning is often difficult for those with Alzheimer’s disease.
�
Establish a simple consistent daily routine.
�
Understand that the person’s behavior is caused by changes in the brain and may
not always be intentional. To control behavior, the caregiver’s approach or, the
environment around the person must be adjusted to be more supportive.
�
Don’t dwell on what has been lost. Focus your attention on what the person can still do.
�
Allow family and friends to help you. Don’t become isolated. Communicate your
needs, fears and problems with someone you trust. Join a caregiver support group.
A Note on Terminology
Throughout the guide, you will see some of these common terms which are defined below:
Alzheimer’s disease—References to “Alzheimer’s disease” refer to Alzheimer’s disease
and related disorders. When something refers only to a particular disorder or disorders, it
will be noted.
Caregiver—The term “caregiver” is used to describe family members, partners, or friends
who care for a person with Alzheimer’s disease or a related disorder as opposed to a
professional individual paid to provide care.
Dementia—The term “dementia” refers to a group of cognitive symptoms including
memory loss, disorientation, and language impairments that are often progressive
in nature.
Person—The individual diagnosed with Alzheimer’s disease or a related disorder.
Please note that throughout the text of this Guide, persons with Alzheimer’s or dementia
are referred to as male or female interchangeably.
PAGE 3
LETTER FROM PAUL RAIA
How to Use the Guide
This Guide is intended to be a handy reference for busy caregivers. Caregivers are
encouraged to consult the Guide for ideas and suggestions as needed and to use
any blank spaces at the end of each section, and in the margins, to jot down notes on
approaches that have worked for them. Think of this guide as a tool that you customize
based on your particular circumstance.
This is not the type of book that you should feel you need to read cover to cover. It is
intended that you use the Table of Contents to identify a topic area when you need to use
that information.
Suggestions in The Guide, from professional care providers and from family caregivers,
have been compiled from the Habilitation Therapy model of care which I developed
with Joanne Koenig Coste. Not all of these suggestions will be appropriate for every
person with dementia, or appropriate for every stage of the person’s illness. I hope that
this information will aid you in understanding the needs of the person for whom you
are caring, and that it will assist you in developing your own unique approaches to care.
The “Guide” gives you strategies for care, and you must interpret and apply the strategy
based on the situation, the needs of the person and your own capacity. The overall goal
as a caregiver should be to promote and nurture a positive emotion in the person with
Alzheimer’s. You may modify any of the strategies in this guide to attain the goal of
bringing about a positive emotion.
The Family Care Guide places control in the hands, mind and spirit of the caregiver. Use
this guide wisely; it will help you to take control of this disease and your relationship with
the person with dementia.
Paul Raia, Ph.D.
Vice President, Clinical Services
Alzheimer’s Association
®
, Massachusetts/New Hampshire Chapter
PAGE 4 ALZHEIMER’S ASSOCIATION
PAGE 5
INTRODUCTION
What is Alzheimer’s Disease?
Alzheimer’s is a disease of the brain that is marked by
a slow, progressive decline of cognitive functioning as
brain cells are destroyed by plaques and tangles in the
brain.
Plaques build up between nerve cells. They contain
deposits of a protein fragment called beta-amyloid (BAY-tuh AM-uh-loyd).
Tangles form inside dying cells. Tangles are twisted fibers of another protein called
tau (rhymes with “wow”).
Although most people develop some plaques and tangles as they age, those with
Alzheimer’s tend to develop far more. Scientists believe that the damage from Alzheimer’s
disease begins in an area of the brain known as the hippocampus, which is responsible for
recent memory and learning. In particular, the hippocampus controls the formation of new
memories. This is why people with earlier stages of Alzheimer’s disease experience the
most trouble with recent memory and recall, yet usually have strong long-term memory.
Scientists are not absolutely sure what role plaques and tangles play in Alzheimer’s
disease. Most experts believe they somehow block communication among nerve cells
and disrupt activities that cells need to survive.
The difference between dementia and Alzheimer’s disease
Dementia is an umbrella term used to describe symptoms of memory loss and
other changes in cognitive abilities severe enough to interfere with daily life.
Dementia is a condition that has many possible causes. Alzheimer’s disease is
the most common cause of dementia, accounting for 50 to 70 percent of all cases.
Alzheimer’s disease is also commonly referred to as a “type” of dementia. There are
numerous other types of dementia.
These various types of dementia share many similar symptoms but they differ in
the way they affect the brain, the order in which symptoms appear, the severity of
individual symptoms, and how the disease progresses.
Other conditions that can cause dementia (or mimic Alzheimer’s disease) include
hydrocephalus, depression, brain tumors, nutritional deficiencies, alcoholism, infections,
head injuries, and drug reactions. Some of these conditions may be treatable.
Chapter 1
PAGE 6 ALZHEIMER’S ASSOCIATION
In addition to Alzheimer’s disease, the following irreversible disorders can also cause
memory loss, confusion and other symptoms associated with dementia:
�
Vascular dementia is generally considered to be the second most common type of
dementia. It refers to impairment caused by reduced blood flow to parts of the brain.
Symptoms of vascular dementia can be similar to Alzheimer’s disease. In some cases,
the impairment associated with vascular dementia can occur in “steps” rather than in
the slow, steady decline usually seen in Alzheimer’s disease.
�
Dementia with Lewy bodies often begins with wide variations in attention, alertness,
judgment and rational thinking. Individuals affected by this illness often experience
visual hallucinations as well as muscle rigidity, tremors, falls, and balance issues similar
to those associated with Parkinson’s disease.
�
Parkinson’s disease affects control of movement, resulting in tremors, stiffness, and
impaired speech. Many individuals with Parkinson’s also develop dementia in later
stages of the disease.
�
Frontotemporal dementia or Pick’s disease is a disorder that may sometimes be hard
to distinguish from Alzheimer’s disease. Personality changes and disorientation often
occur before memory loss. Symptoms often resemble depression. There are many
different subtypes of frontotemporal dementia that feature different rates of progression
and prominence of specific symptoms.
�
Huntington’s disease is an inherited, progressive disorder that causes irregular
movements of the arms, legs, and facial muscles; personality changes; and a decline in
the ability to think clearly. This disease can cause dementia, but varies in severity.
�
Creutzfeldt-Jakob disease (CJD) is a rare, rapidly fatal disorder that impairs memory
and coordination and causes behavior changes. Recently, “variant Creutzfeldt-Jakob
disease” was identified as the human disorder believed to be caused by eating meat
from cattle affected by “mad cow disease.”
�
Normal pressure hydrocephalus (NPH) is caused by a buildup of fluid in the brain. The
cause of most cases is unknown. Symptoms include difficulty walking, memory loss
and inability to control urine. NPH can sometimes be corrected with surgery to drain the
excess brain fluid.
�
Physical injury to the brain caused by a motor vehicle crash or other trauma can
damage or destroy brain cells and in some cases cause symptoms of dementia such as
behavioral changes, memory loss and other cognitive difficulties.
PAGE 7
INTRODUCTION
There are other forms of dementia. Doctors are discovering new subtypes all the time,
so your loved one may have received a specific diagnosis that is not listed here. Some
individuals may receive a dual diagnosis (e.g., Alzheimer’s disease and dementia with
Lewy Bodies).
Younger-onset dementia
Anyone diagnosed with Alzheimer’s disease or a related dementia before the age
of 65 is considered to have “younger-onset dementia.” People who have younger-
onset dementia essentially experience the same symptoms as older people with
the disease. However, individuals with younger-onset dementia will face unique
age-related issues. For instance, those under 65 may still be employed or have
children living at home. Issues facing families include ensuring financial security;
obtaining benefits; and helping children cope with the disease. Experts estimate that
up to 5% of people with Alzheimer’s disease are in their 30s, 40s, and 50s.
Mild cognitive impairment (MCI)
Sometimes a person may have problems with memory or another thinking skill that
is serious enough to show up on tests, but not severe enough to interfere with daily
life. Some doctors use the term mild cognitive impairment (MCI) to describe this
situation.
Research has shown that individuals with MCI have an increased risk of progressing
to Alzheimer’s disease, especially when their main area of difficulty involves
memory. But a diagnosis of MCI does not always mean the person will develop
Alzheimer’s.
PAGE 8 ALZHEIMER’S ASSOCIATION
Symptoms of Alzheimer’s Disease
The following are 10 warning signs which may indicate possible Alzheimer’s disease:
1. Memory loss that disrupts daily life.
One of the most common signs of Alzheimer’s is memory loss. This may include
forgetting recently learned information, forgetting important dates or events, or asking
for the same information over and over.
2. Challenges in planning or solving problems.
Some people may experience changes in their ability to develop and follow a plan or
work with numbers. The person may have trouble following a familiar recipe, keeping
track of monthly bills, or take much longer to do things than she did before.
3. Difficulty completing familiar tasks at home, at work or at leisure.
People with Alzheimer’s often find it hard to complete daily tasks. Sometimes,
people may have trouble driving to a familiar location, managing a budget at work or
remembering the rules of a favorite game.
4. Confusion with time or place.
People with Alzheimer’s can lose track of dates, seasons and the passage of time. The
person may have trouble understanding something if it is not happening immediately.
Sometimes she may forget where she is or how she got there.
5. Trouble understanding visual images and spatial relationships.
For some people, having vision problems is a sign of Alzheimer’s. The person may have
difficulty reading, judging distance and/or determining color or contrast. In terms of
perception, she may pass a mirror and think someone else is in the room. She may not
realize that she is the person in the mirror.
6. New problems with words in speaking or writing.
People with Alzheimer’s may have trouble following or joining a conversation.
The person may stop in the middle of a conversation and have no idea how to continue
or she may repeat herself. She may struggle with vocabulary, have problems finding
the right word, or call things by the wrong name (such as calling a “watch” a
“hand-clock”).
7. Misplacing things and losing the ability to retrace steps.
A person with Alzheimer’s disease may put things in unusual places. She may lose
things and be unable to go back over her steps to find them again. Sometimes, she may
accuse others of stealing. This may occur more frequently over time.
8. Decreased or poor judgment.
People with Alzheimer’s may experience changes in judgment or decision-making. For
example, the person may use poor judgment when dealing with money, (such as giving
large amounts to telemarketers). She may pay less attention to grooming or keeping clean.
PAGE 9
INTRODUCTION
9. Withdrawal from work or social activities.
A person with Alzheimer’s may start to remove herself from hobbies, social activities,
work projects or sports. She may have trouble keeping up with a favorite sports team
or remembering how to complete a favorite hobby. She may also avoid being social
because of the changes she has experienced.
10. Changes in mood and personality.
The mood and personality of a person with Alzheimer’s can change. She can become
confused, suspicious, depressed, fearful or anxious. She may be easily upset at home,
at work, with friends or in places where she is out of her comfort zone.
*Taken from 10 Warning Signs of Alzheimer’s Disease, Alzheimer’s Association, 2009.
These warning signs are also the symptoms experienced by people diagnosed with
Alzheimer’s disease and related dementias. Not everyone will experience all of these
symptoms, because every person is unique. It is possible to receive a diagnosis even if
only a few symptoms have developed.
Normal age-related changes in memory
It is normal to experience some changes in memory as we grow older. The majority
of older adults experience some of the following normal changes in cognition:
�
Forgetting names more frequently
�
Experiencing difficulty switching from one subject to another
�
Requiring more time and concentration to learn new information
Normal age-related symptoms of memory loss result from the brain’s decreased
capacity for quickly and efficiently retrieving information from long-term memory.
It can take more time to recall information or learn new things. These memory
changes may be bothersome, but they do not significantly affect daily functioning.
PAGE 10 ALZHEIMER’S ASSOCIATION
Diagnosis of Alzheimer’s Disease
There is no single type of doctor that specializes in diagnosing and treating Alzheimer’s
disease and related dementias. A primary care physician who suspects some type of
dementia will likely refer to one of the following types of specialists:
�
Geriatrician—Primary care physicians (MD) who specialize in conditions unique to
older adults.
�
Geriatric Psychiatrist—Physicians (MD) who specializes in mental and emotional issues
among older adults. They may also diagnose conditions associated with dementia such
as depression or anxiety.
�
Neurologist—Physicians (MD) who specializes in diseases of the brain and nervous
system and is qualified to perform extensive memory evaluations. Some, but not all
neurologists, specialize in Alzheimer’s.
�
Neuropsychologist—Psychologists (PhD) with specialized training in testing the
function of the brain by assessing cognitive abilities and determining strengths and
weaknesses. Typically a referral from your doctor is needed in order to meet with this
type of specialist.
�
Specialized diagnostic clinic—Group practice with different kinds of specialists (usually
including a neurologist, psychiatrist, psychologist, and social worker) who each perform
part of the diagnosis.
There is no single test for Alzheimer’s disease but experts estimate that a skilled
physician can diagnose Alzheimer’s disease with at least 90% accuracy. The only
definitive (100%) diagnosis for Alzheimer’s disease requires an autopsy to examine the
brain tissue using a powerful microscope for evidence of the plaques and tangles that
are hallmarks of the disease.
A diagnosis of Alzheimer’s disease can be made after a complete medical, neurological
and psychological examination is completed to rule out other possible causes of the
person’s symptom and assess the patterns of problems.
PAGE 11
INTRODUCTION
The diagnostic process may involve the following components:
�
Review of personal and family medical history
�
Evaluation of mood and cognitive skills
�
Physical exam (including a blood test)
�
Neurological exam including reflexes, coordination, eye movement, muscle strength
and tone, speech and sensation
�
Brain scan (CT, MRI or PET):
- The MRI (magnetic resonance imaging) and CT (computed tomography) scans provide
structural imaging about the shape, position or volume of brain tissue.
- The PET (positron emission tomography) scan provides a functional image which
reveals how well cells in various brain regions are working by showing how actively
the cells use sugar or oxygen. This test can be rather expensive.
- Currently, a standard medical workup for Alzheimer’s disease often includes structural
imaging with MRI or, less frequently, CT. These images are used primarily to detect
tumors, evidence of small or large strokes, and damage from severe head trauma or a
buildup of fluid. The MRI cannot detect Alzheimer’s disease directly but is used to rule
out other causes of cognitive impairment.
�
Neuropsychological exam:
- Neuropsychological tests are sometimes used to learn more specific information about
an individual’s cognitive strengths and weaknesses. Depending on the individual, a
neuropsychologist may run one test or a number of tests.
- Neuropsychological tests are not invasive. They involve interviewing the person and
her caregiver, paper-and-pencil tests, and sometimes computerized tests.
Each of these tests is used to rule out the possibility of any reversible causes (for
example, infection or medication issues). The components of the diagnostic process also
help to inform a clinical diagnosis of Alzheimer’s disease or related dementia.
PAGE 12 ALZHEIMER’S ASSOCIATION
Why seek a diagnosis?
�
It is important to rule out a disease or condition that can cause symptoms that
look like Alzheimer’s disease but may be potentially treatable or even curable.
�
The diagnosis will provide an explanation for symptoms and help the family and
person begin to understand how to cope with the symptoms.
�
An early diagnosis can help ensure appropriate treatment. We know that earlier
treatment can be more effective.
�
People may have the opportunity to participate in research that gives access to
new treatments and increased support.
�
An early diagnosis helps families get started with future planning and enables the
person to be an active participant in that process.
Risk Factors
Researchers have identified multiple risk factors that increase the likelihood of developing
Alzheimer’s disease. Some are risk factors that we cannot change, while there are others
we may be able to influence.
The most significant risk factors are those that we cannot
control:
Age is the greatest known risk factor. Most individuals with
Alzheimer’s disease are 65 and older. The likelihood of
developing Alzheimer’s approximately doubles every five
years after age 65. After age 85, the likelihood reaches nearly
50 percent.
Family history and genetics also play a significant role.
Research has shown that those who have a parent, brother
or sister with Alzheimer’s disease run an increased risk of
developing the disease. The risk increases if more than one
family member has the illness.
Scientists have so far identified one gene (APoE) that
increases the risk of Alzheimer’s but does not guarantee that
an individual will develop the disorder. Experts believe that the
vast majority of cases are caused by a complex combination of
genetic and non-genetic influences.
It is no ones fault
if someone is
diagnosed with
Alzheimer’s disease
There are factors
beyond one’s control
that influence the
development of this
disease. Even if a
person takes every
precaution to minimize
risk factors within
his control, it is still
possible to develop
Alzheimer’s disease.
PAGE 13
INTRODUCTION
There are some risk factors that we may be able to influence:
1. There is a strong link between head injury with a loss of consciousness and future
risk of Alzheimer’s disease.
2. Heart health influences brain health. High blood pressure, high cholesterol, and
diabetes are all risk factors for dementia.
Progression of Alzheimer’s Disease
Most types of dementia, particularly Alzheimer’s disease, tend to show a slow progressive
decline. One exception is vascular dementia, which can show a slow progression with
periods of fast decline depending upon the occurrence of additional vascular damage.
The role a caregiver plays in the care and support of someone with Alzheimer’s will
depend on the changing needs of the person. The need for assistance will change over
time as the disease progresses and each person with Alzheimer’s will move through
the disease in her own way. In addition, a person’s need for assistance will vary from
day to day. This means caregivers need to be flexible and sensitive to what the person
needs help with at that moment. It is helpful for families to understand what changes are
typical in the early, middle and later part of the disease. Knowing what to expect can help
families plan ahead or better respond as changes occur.
Early-Stage Alzheimer’s disease
In the early part of the disease, some of the changes you may notice are:
�
Trouble remembering conversations, recent events or the month or day of the week
�
Losing things or misplacing things
�
Repeating stories or questions
�
Withdrawal from social activities or problems with initiating activity
�
Greater difficulty performing complex tasks, such as paying bills or managing finances
�
Driving ability is compromised
�
Denial that something is wrong
PAGE 14 ALZHEIMER’S ASSOCIATION
Middle-Stage Alzheimer’s disease
Caregivers will need to become more involved in supervision
or assistance with meals and eating, personal care, safety
and other activities. In this stage of the disease a person
may initially need only cues or prompts with an activity
like dressing. As he moves through this stage more and
more supervision and hands-on assistance will be needed.
Ultimately, the person will require 24-hour supervision to
ensure his health and safety.
Some of the changes you may notice are:
�
Increased difficulty with speaking or understanding language
�
Progression from needing reminders about personal care
and other tasks to needing help with bathing, dressing,
taking medication, and using the bathroom
�
Changes in personality or emotions, such as: anger,
agitation, paranoia, withdrawal, and depression
�
Wandering or sundowning (restlessness or agitation in the
late afternoon or evening)
�
Changes in behavior, such as: shouting, pushing, slapping or
other physical aggression
�
Episodes of urinary incontinence if not reminded or
scheduled to use the bathroom
Sudden changes
in a person with
Alzheimer’s disease
or related dementias
should always be
referred to a physician
to rule out if these
changes are caused by:
• Infection
• Dehydration
• Poor nutrition
• Lack of adequate rest
• Thyroid imbalance
• Medication
side effects
• Depression
• Other health
conditions
PAGE 15
Later-Stage Alzheimer’s disease
At some point in the later part of the disease, a person will need full assistance with all
personal care tasks, lose the ability to speak and walk and require 24-hour supervision.
The challenges of assisting with bowel and bladder needs becomes more challenging as
she moves from having episodes of incontinence to needing continual care in this area.
Some of the changes you may notice are:
�
Limited or loss of ability to speak or respond with words although non-verbal
communication (nodding, smiling, making sounds) may continue
�
Lose ability to recognize people or things
�
Lose ability to walk and need assistance to move or reposition
�
Trouble with chewing or swallowing
�
Incontinence of bowel and bladder
�
Weight loss
The progression of Alzheimer’s disease is highly variable. Although there are many
common experiences, you can also expect to have your own unique experience as a
caregiver. Rather than focusing on when to expect cognitive losses during the course
of this disease, try to focus on current strengths. Even in the later stages, not all
abilities are lost. For instance, the capacity for emotion and relationships remains
intact throughout the course of the disease. As the disease progresses, caregivers
should continue to foster positive emotions and capitalize on the strengths of the
person with Alzheimer’s disease.
INTRODUCTION
PAGE 16 ALZHEIMER’S ASSOCIATION
PAGE 17
COMMUNICATION
Successful communication remains possible
even though Alzheimer’s disease eventually
affects the person’s ability to express herself
and understand what is happening around her.
Keep in mind that speech, language and other
communication difficulties vary from person
to person and may vary from day to day,
or even moment to moment. Whatever the
person’s challenges are, it is important to take
advantage of the abilities that remain and find
ways of communicating despite the challenge of the disease.
As the person’s ability to use speech declines, it may be difficult for others around her to
adjust their communication style. Sometimes it is hard to accept the person’s limitations,
especially when she continues to look like the same person she once was.
If we were asked to define communication, we might describe it as talking to and listening
to each other. It’s equally important to realize that communication also includes how
we relate to each other in non-verbal ways. The importance of tone of voice and body
language cannot be over emphasized. Learning and practicing how we communicate
with the person with dementia can help us to have more success in day-to-day living and
decrease frustration and anxiety for everyone.
Verbal Communication
Verbal communication includes “receptive” and “expressive” speech. The person with
Alzheimer’s disease will have difficulty taking in information (receptive) and making
themselves understood (expressive). The ability to receive information includes
understanding and following directions, reading comprehension, and following
conversations. The ability to express oneself includes finding the right words and
organizing words logically. The person with Alzheimer’s disease often speaks less and/or
relies on gestures.
The first steps to improved communication are to:
�
Offer comfort and reassurance
�
Begin where the person is coming from, rather than correcting him
�
Always look for and acknowledge the emotion behind the words
�
Supplement words with gestures, touch, smiles, nods, and eye contact
�
Minimize distractions in the environment that may impede communication
Chapter 2
PAGE 18 ALZHEIMER’S ASSOCIATION
Avoid these common problems:
�
Trying to convince him to do something with logic or reasoning
�
Arguing
�
Pointing out that he has made a mistake
�
Talking about him as if he weren’t there
Helpful verbal communication strategies include:
�
Use short simple words and sentences, speak slowly and clearly.
�
Ask one question at a time.
�
Patiently wait for a response but if the person is frustrated, offer a guess or
suggestion.
�
Repeat information or questions.
�
Turn negatives into positives (Instead of saying “Don’t do that,” you might say “Come
with me, I need your help with something”).
�
Make statements rather than requests.
Tone of voice, body language and facial expression
Your tone of voice, body language and facial expression are as important as what you say.
The following are some helpful tips for communicating effectively through non-verbal
communication:
�
Use a calm and reassuring tone of voice.
�
Be open and relaxed with your physical stance.
�
Establish and make eye contact.
�
Approach from the front and if possible, be at eye level.
�
Use gestures such as pointing and modeling.
�
Avoid sudden movements.
�
Always remember humor, smiles and laughter go a long way.
PAGE 19
COMMUNICATION
Asking questions or giving directions
Asking questions or giving directions to a person with Alzheimer’s can potentially cause
frustration and upset--for you and the person. Maintaining a calm atmosphere can often
be more important than communicating specific information. Do not argue or try to
convince the person. For example, the person does not necessarily have to understand
that he needs to take a bath or change his clothes, as long as he does so. If the person
becomes upset or uncooperative, stop and try again later. Try to redirect his attention and
distract him with another activity or thought.
�
Do not ask questions that rely on memory.
�
Ask one question or give one direction at a time.
Example: “It’s time to sit at the table” instead of “It’s time to sit at the table and
eat dinner.”
�
Ask questions that require only one choice at a time.
Example: “Do you want coffee?” instead of “Do you want coffee or tea?”
�
Demonstrate what you mean and use gestures.
�
Allow ample time for the individual to respond or act.
�
Provide frequent reassurance and praise.
�
Use positive statements.
Example: “Let’s go this way” rather than “Don’t go that way.”
PAGE 20 ALZHEIMER’S ASSOCIATION
Responding to the Person with Alzheimer’s disease
If the person with Alzheimer’s is trying to talk to you and becomes frustrated with her
inability to be understood, empathize with her. Validating her feelings will lesson her
frustration. Always be patient and non-critical. If the person cannot find the word, suggest
a word, provide a verbal cue, or if she can, ask her to try writing it down.
Some other strategies for responding to the person with Alzheimer’s disease are:
�
Ask a question that helps her find a different way of communicating the same
information.
Example: If she is having trouble describing something, try asking, “Would you show
me where it is?”
�
Don’t hesitate to use small fibs or “therapeutic fiblets” to keep the situation
manageable.
Example: If he does not like going to the doctor, simply tell him that you are doing
errands to get him to leave the house.
�
Focus on a piece of information that will make things okay for the person.
Example: If she gets upset about your going out, emphasize that a favorite person is
coming over to spend time with her.
�
Eliminate details from your response that will not help the person, or may cause
anxiety, fear, or defensiveness.
Example: When he asks why he needs to go to the day program, remind him of all of
the help he gives the staff and other participants there and do NOT explain all of the
benefits of the day program.
If the person with Alzheimer’s asks the same question over and over, remember that she
probably cannot remember the answer (or even that she asked the question before.)
Repeat your answer once or twice and then try to change the subject or redirect her
attention with an activity. Reassure her that everything is fine, that you are there, and that
she is not alone.
Don’t laugh at the person who is having difficulty, but if the person can laugh at
themselves or be lighthearted as you struggle together to understand each other, there is
an opportunity to use humor to diffuse difficult situations.
It is helpful to just listen. Your interest conveys respect and concern. If the person makes
up stories, don’t argue or disagree. It may be helpful to change the subject or respond to
the part of the story that is accurate. Even if she mumbles or rambles, try to listen without
comment. Do not discourage communication by criticizing her speech.
PAGE 21
COMMUNICATION
Handling complaints or insults
Not always, but at times, the person with dementia who is anxious or frustrated may
express himself with complaints and hurtful remarks. If that is something you experience,
try to listen for the emotion behind the words. The following tips may help caregivers
who experience this:
�
Do not take such comments personally and don’t argue.
�
Respond sympathetically to the underlying feeling being expressed; for example,
“I’m sorry that you’re upset”.
�
Remain calm with your tone of voice and body language.
�
Leave the room and take a break if necessary and try
again later.
Providing Cues in the Environment
As long as the person continues to understand written words,
signs and labels can be useful reminders of what things are
and how they are used.
�
Label household items and rooms with words or pictures.
�
Use simple signs with large clear print to prompt memory, such as “Turn off the
stove”.
�
Prominently display a large easy-to-read clock. Digital clocks may be easier to read
than conventional ones.
�
Display a bulletin board or blackboard with the day, date, and season printed clearly.
�
Provide the person with a wristwatch if he is able to read one.
�
Use a calendar with large print and cross off each day.
�
Display pictures of family and friends with their names under the pictures.
Always remember not
to respond directly to
the remark but rather
change the subject or
redirect the person to
another activity.
PAGE 22
PAGE 23
Chapter 3
DAILY LIVING
Giving daily care and assistance to a person
with Alzheimer’s or another dementia can be
challenging for a number of reasons. As the
disease progresses and symptoms change, you
will need to take on more responsibilities for
hands-on care. The person may become more
confused, need more time to do things, and
may even be resistant to help. Understandably,
this can be frustrating for the caregiver and
the person with dementia. At some point, the
person will require 24-hour supervision and assistance with all care tasks. The following
section provides guidance for how to best approach daily care to lessen disagreements
and to support the person to participate as much as he can with daily activities.
Bathing
Bathing can be one of the most difficult tasks for a caregiver to accomplish. Many persons
with Alzheimer’s disease have a fear of water. A bath can be scary and confusing for a
person who does not fully comprehend what is happening.
Make bathing less stressful for you both:
●�
Think about the best time and routine for bathing. It may reduce anxiety if you follow
the same routine each time.
●�
Avoid discussion of the need for a bath or shower. Take a matter of fact approach: “It is
time to take a bath now.”
●�
Do not schedule a bath or shower at times that are already stressful for you or the
person. If possible, when you have an appointment together, try to take care of
showering the day before or earlier in the day. That way you will not be rushing her to
get ready.
●�
Pick a time when you are least likely to be interrupted. Leaving a confused or frail
person alone in the tub or shower can be frightening and dangerous.
●�
Organize all the bath items you need (in order of use) before starting the bath or shower.
●�
Allow the person to do as much for himself as possible.
●�
If he becomes frightened, distract him with conversation.
PAGE 24 ALZHEIMER’S ASSOCIATION
Make bathing safer by using:
●�
Plastic containers rather than glass
●�
Rubber bath mat and grab bars in the tub. Make sure the bars are installed properly.
●�
Sturdy chair or stool in the bath or shower that eliminates some of the problems
involved in getting the person into and out of the tub or shower. It will also help to
prevent falls. Bath chairs are available from drug stores and other suppliers of durable
medical equipment.
●�
Hand-held showerhead which can be easier for you and less threatening to the person.
Hygiene tips:
�
Use moisturizing soap. Avoid bubble bath and bath oil
because they can make the tub or shower slippery and
contribute to urinary tract infections.
�
Be certain the genital area is clean to avoid infections. If
the person needs assistance, be matter-of-fact and calm.
Sometimes using a washcloth and a hand-over-his hand
approach can be less threatening and more comfortable.
�
Dry the skin thoroughly. Use a lotion for dry skin after the
bath, and check the condition of the skin for any changes,
including bruises, discoloration, or breaks in the skin. If you
note any changes, be sure to arrange for the person to be
seen by a medical professional. See section on Pressure
Sores later in this chapter for more information.
Grooming
Good grooming helps to maintain the person’s sense of self-esteem. Encourage the person
with Alzheimer’s to groom himself for as long as he can. Be prepared to guide and assist
him as needed. Give step-by-step instructions, allowing him to finish one step at a time.
●�
Keep fingernails and toenails clean and cut short. Hand massage and manicures may be
good grooming treats and very relaxing to the person.
●�
For men, encourage daily shaving with an electric razor. Use a pre-shave softener to
help reduce pulling and razor burn.
●�
For women, continue a normal or modified makeup routine if practical.
●�
Short hair is usually easier to manage than long hair. Continue to visit the barber shop/
beauty salon regularly. Some hairdressers will make home visits. To reduce waiting and
confusion, ask for the first or last appointment of the day.
Daily bathing is not
always necessary.
It can even be
damaging to fragile
skin. Washing the
person’s face, hands,
and genital area may
be all that is needed. A
sponge bath can be an
effective alternative to
a shower or bath.
PAGE 25
DAILY LIVING
Dressing
With increased memory loss, the steps involved in getting
dressed become more difficult for the person to handle by
herself. Allow the person to dress herself as long as she is able
to do so, regardless of how long the process takes. Give step-
by-step instructions, allowing her to finish one step before
continuing on to the next.
●�
Lay out clothes in the order they will be put on. If necessary,
hand each item of clothing one at a time to the person.
●�
Describe what you are doing as you do it. For instance, tell
the person, “It’s time to get dressed. Here is your shirt.”
●�
Provide comfortable and loose fitting clothing.
●�
Involve the person by encouraging her to make clothing
choices, but limit choices to two things.
●�
Keep only seasonal clothes in the closet or keep the closet
locked and put out one outfit at a time.
●�
If the person insists on wearing the same clothing day after
day, try buying several duplicate sets of the same clothes and
rotating them.
If shoelaces, zippers,
buttons and buckles
are difficult, instead
consider using:
• Slip-on shoes
(ones that won’t
slip off easily)
• Elastic shoelaces
• Sneakers with
Velcro
®
closings
• Pants with elastic
waist bands
• Clothing that closes
in the front (bras with
front closure, etc.)
• Velcro
®
tape or large
zipper pulls.
PAGE 26 ALZHEIMER’S ASSOCIATION
Oral Hygiene
Poor oral hygiene can lead to infection, gum disease, or
toothaches. Demonstrating the steps of brushing can be a
simple way to help the person brush her own teeth. Allow her
to imitate you, one step at a time. Sometimes if you start the
motion, her lifelong habit may take over. Try guiding the hand
that is holding the toothbrush until she takes over on her own.
Brushing your teeth at the same time as the person may help
encourage her.
Other suggestions for good oral hygiene:
�
Dispense toothpaste as needed rather than leaving the
tube out.
�
Try using a long-handled or angled brush if you are doing the brushing.
�
Be aware of medications that cause dryness of the mouth. Frequent mouth rinses can
help dry mouth, but avoid commercial rinses that contain alcohol, which contributes
to dryness.
�
Continue routine dental appointments as long as possible.
Using the Bathroom
As memory loss progresses, a person with Alzheimer’s loses the ability to use the toilet
without assistance. Initially, encourage the person to be as independent as possible. If
assistance is needed, do not provide more help than is necessary. Start with verbal cues
and gestures before helping with clothing, positioning, wiping, and readjusting clothing.
Remind him where the bathroom is.
�
Verbally tell him or point to it; lead him there if necessary.
�
Clearly mark the bathroom with a sign or a picture of a toilet; or paint the bathroom
door a bright color.
�
Make a “trail” to the bathroom with wide fluorescent tape or carpeting.
Learn the signs that the bathroom is needed so you can prompt him to use the
bathroom.
�
Be aware that restlessness or pulling at clothes may indicate a need to use the toilet.
�
Learn the words or statements that the person uses to state his need to use
the bathroom.
If the person wears
dentures, you may
need to supervise
the cleaning process
and see that they
fit properly. Poorly
fitting dentures make
it difficult to eat and
digest food.
PAGE 27
DAILY LIVING
Ensure safety.
�
Remove the lock from the bathroom door
�
Use an elevated toilet seat and/or try grab bars that can
help prevent falls and make it easier for the person to use
the toilet independently
�
Consider bringing the toilet closer to where the person
spends most of his day or getting a portable commode
or urinal
Some other considerations include:
�
If necessary, stimulate urination by running water or
giving liquids to drink.
�
If the person is no longer able to properly wipe himself, provide assistance
because of the risk of infection. Remember to wash the person’s hands and your
own after contact.
�
Encourage fluids during the day; they are necessary for good health. Do not limit
fluids during the day. Limiting fluids in the evening can reduce the need to use the
bathroom at night.
Constipation
Forgetfulness, poor diet, inadequate fluids, lack of exercise, and certain medicines may
contribute to constipation. The following are signs of constipation to watch for: abdominal
pain or bloating, headaches, restlessness or increase in agitation, frequent trips to the
bathroom, and straining. Remember, however, that it is not necessary to have a bowel
movement every day.
To prevent constipation, the person’s daily diet should include plenty of liquids and foods
containing fiber and roughage (such as prunes, figs, and prune juice; whole grain breads,
cereals, and pasta; and fresh fruit and vegetables). Daily exercise also helps prevent
constipation. If you suspect medication may be causing or contributing to the person’s
constipation, speak with his doctor about an assessment and treatment. Sometimes an
accumulation of hardened feces in the rectum or lower colon can cause a blockage called
impaction. This is a serious medical condition. If this is a suspected problem, the person
should be seen by his doctor. Also, consult with the doctor about any use of a stool
softener or agents that add bulk to the stool to prevent bowel problems.
Using the bathroom is
easier when clothing
is easy to manage.
Avoid belts. Use pants
with elastic waists
such as sweatpants,
which are comfortable,
non-binding, and easy
to take on and off.
PAGE 28 ALZHEIMER’S ASSOCIATION
Incontinence
Incontinence refers to the loss of bladder or bowel control. Stress incontinence may
follow laughter, coughing, lifting or any sudden exertion. Incontinence is a symptom that
is invariably part of the progression of Alzheimer’s disease and can evoke feelings of
anger, shame, and helplessness--for both the person with Alzheimer’s and her caregiver.
Incontinence may be a correctable medical problem; a
medical evaluation is the first step in dealing with it. It can
be caused by factors not related to Alzheimer’s disease,
notably urinary tract infections and constipation. Prostatic
enlargement in elderly men can cause a problem with fully
emptying the bladder, with resulting “overflow.” Some
medications may predispose the person to incontinence.
If the doctor has determined there is no medical cause for
incontinence, it may be that the person with Alzheimer’s
is unable to express discomfort or the need to urinate. Or,
the incontinence may result from the person’s inability to find the bathroom or undress
quickly enough. Refer to the section on Using the Toilet earlier in this chapter for more
information.
Steps that can help manage incontinence:
�
Establish a regular toileting routine every 2-3 hours (upon rising, before and after
meals, and at bedtime). If necessary, distract the person from toileting at other times.
�
Praise independence and regular use of the bathroom; do not punish or shame for
episodes of incontinence.
�
Keep the genital area clean and dry to avoid infections and discomfort. “Baby wipes”
are effective for this purpose.
�
Keep track of bowel movements in order to learn the person’s patterns, if there are
any. This will help to avoid accidents.
If the onset of incontinence is sudden or is accompanied by a change in behavior, fever,
chills, or a strong odor to the urine, consult your physician.
To minimize clean-up:
�
Use adult sanitary briefs, adult “diapers,” or other incontinence products if needed.
�
Don’t forget to request a senior citizen’s discount (if the person is eligible) when
purchasing incontinence supplies.
�
For the bed, use plastic sheets or disposable bed pads.
�
On chairs, use washable chair cushions or towels over plastic cushions.
Do not try to reduce
incontinence by
limiting daytime
fluids which can
lead to dehydration,
constipation, or
irritation of the bladder.
PAGE 29
DAILY LIVING
Pressure Sores (“bedsores” or decubitus ulcers)
A person who is not able to walk independently and spends most of his day in bed,
a chair or wheelchair may develop pressure sores or “bedsores.” Pressure sores first
appear as reddened spots over bony areas and develop into open sores. The most
common areas for pressure sores are the base of the spine, shoulder blades, and heels.
The problem is more likely to occur if the person stays in the same position too long, is
very thin or has another health condition, such as diabetes.
Pressure sores are more difficult to cure than to prevent. Preventive measures:
●�
Good nutrition
●�
Exercise that promotes circulation
●�
Use of protective aids such as soft cushions, waterbeds, lambskin, or an “egg-crate”
foam mattress pad
●�
Loose clothing made of soft fabric reduces friction and pressure on the person’s skin
If the person with Alzheimer’s is confined to a chair for long periods, help her stand and, if
possible, walk at least every 2 hours. If the person is bedridden and unable to turn herself,
change her position every 2 hours. Turn her from side to side and use pillows for support.
Check daily for redness of the skin (particularly ears, shoulders, lower back, hips, and heels).
Nutrition
A balanced diet is essential for good health. It helps avoid dehydration, constipation,
malnutrition, or other illnesses, and promotes a sense of well being.
●�
Be sure the person eats a balanced diet and drinks at least 6 cups of liquid daily. It
is important that the foods offered meet any medical requirements, especially if the
person is on a low fat, low salt, diabetic, gluten-free, or other restricted diet.
●�
Rather than argue with the person about foods that she should avoid for health reasons,
it is better not to have tempting but unhealthful foods in the house. Or store them in an
inaccessible place so that you can control how often they’re eaten.
●�
If weight gain is a problem, try serving smaller portions or small frequent meals.
Substitute nutritious snacks for high-calorie “junk food” or increase the person’s level of
exercise.
●�
If the person is losing weight, consult a medical professional. There may be problems
with absorption of food, or other medical problems. Eating problems may stem from
treatable causes such as poorly fitting dentures or a sensitive tooth. If the person is
eating poorly and is otherwise in good health, a nutritional supplement may be needed.
PAGE 30 ALZHEIMER’S ASSOCIATION
Mealtime
Although most persons with Alzheimer’s do not need special diets, the person may
develop eating problems that make it difficult to make sure she is receiving proper
nutrition. Dehydration is also a danger for the person who loses her sense of thirst or
simply forgets to drink. There are many strategies to improve nutrition and hydration.
Keep a calm routine.
●�
Try to maintain a routine and a relaxing atmosphere at mealtime.
●�
Serve meals at regular times and at the same table.
●�
Encourage the person to sit in the same place at the table.
●�
Serve foods the person knows and enjoys; new foods may confuse her.
●�
Allow the person enough time to eat.
Engage the person.
●�
A person who has been accustomed to cooking may enjoy helping with meal
preparation.
●�
Depending on her level of functioning, appropriate tasks may include stirring food,
setting the table, folding napkins, wiping the table, or washing the dishes. Colorful,
aromatic, and flavorful food may enhance the person’s appetite.
●�
If restlessness makes it difficult for the person to stay seated for an entire meal,
smaller, more frequent meals or serving finger foods that will allow the person to eat
while moving around might work better.
Reduce clean-up.
●�
Use a plastic tablecloth.
●�
An apron helps protect clothes from spills.
●�
Buy a “collar” that fits over the edge of the plate that will help keep food on the plate
and make using a fork easier.
●�
To avoid spills, do not fill glasses or cups to the top.
●�
Avoid clear glass or plastic that may be difficult to see and try using a spill-proof cup
or mug with a large handle.
PAGE 31
DAILY LIVING
Keep it simple.
●�
Serve one food at a time
●�
Demonstrate how to use utensils if needed
●�
Consider using a bowl instead of a plate
●�
Provide a spoon only
●�
Serve finger foods (e.g., sandwiches or cut-up vegetables) to avoid the need for utensils
Make it safe.
●�
Encourage the person to eat slowly and chew one mouthful at a time.
●�
For easy swallowing, have the person sit with her head
slightly forward, not backward.
●�
Remember soft, thick food is less likely to cause choking
than pieces of food that are slippery or require a lot of
chewing.
●�
Do not feed a person who is drowsy or agitated or who is
lying down.
●�
Keep her sitting up for 20 minutes after eating when
possible. If a person lies down too quickly, food just
swallowed may come back into the throat and cause
choking.
Tips for Dining Out
●�
Try to go out at times when restaurants are the least busy;
try making a reservation to avoid having to wait in line.
●�
When making the reservation, let the manager know that
you will need a table near the restroom.
●�
Avoid very noisy restaurants and try to dine with a small
number of people rather than a large group.
●�
When dining, spend some time talking about familiar
past events. This will help the person with Alzheimer’s
contribute to the conversation.
●�
Allow her to sit quietly if it is more comfortable for her to
not join the conversation.
Suggestions for
finger foods:
Finger foods can help
to save your energy
and give the person
with Alzheimer’s
more independence.
Some examples:
chicken nuggets;
fish sticks; grilled
cheese sandwiches
(cut up); French fries;
raw vegetable sticks;
English muffins or
toast; hard boiled
eggs (quartered);
fried vegetable sticks;
cheese sticks; pork
or beef (cut in small
pieces). Always watch
for signs of choking.
PAGE 32 ALZHEIMER’S ASSOCIATION
Sleeping
Changes frequently occur in the sleeping patterns of a person
with Alzheimer’s disease. Sleeplessness at night is common.
Some strategies to improve sleep include:
●�
Maintain a consistent and soothing bedtime routine and a
regular wake-up time.
●�
Help her to avoid naps if the person has trouble sleeping at
night.
●�
Encourage daily exercise.
●�
Evaluate any physical or emotional problems that may be
contributing to sleep difficulties, such as pain or depression.
●�
Avoid fluids after dinner, particularly those with caffeine.
●�
Have the person use the toilet before going to bed.
●�
Use a nightlight in the bedroom if that seems to help.
Keep a normal bedtime routine as much as possible, for as long as possible. Eventually it
may become necessary to allow the person to sleep wherever he is comfortable, perhaps
on a couch or in a comfortable chair.
Medications, including
over-the-counter drugs,
may affect the sleep-
wake cycle. Consult a
doctor or pharmacist
if you suspect the
person’s medication
may be contributing
to a problem with
sleeping.
PAGE 33
DAILY LIVING
Exercise
Exercise aids sleep, relieves tension and restlessness, regulates
appetite, helps digestion, and improves strength, coordination,
and flexibility. If the person already has an exercise routine,
continue it as long as possible. If he does not have a routine,
attempt some type of daily exercise. Consult a medical
professional if he has physical or medical problems that may
limit his ability to exercise.
Encourage exercise that the person enjoys. This can give him a
feeling of satisfaction. Some types of exercise to consider are:
●�
Walking is easy and safe. It also provides a change of pace
and a chance to get out of the house.
●�
Dancing is not only good exercise but can be relaxing
and fun.
●�
Playing with pets and children can be a pleasurable way to
get some exercise.
You can ask your doctor to write a prescription for a physical
therapist to come to your home to set up an exercise program
for the person. You may find books and videos on exercises for people with physical
limitations helpful.
Shopping
Shopping can be a good activity for a person with Alzheimer’s disease, if care is taken to
anticipate and avoid potential mishaps. Window shopping is a form of exercise and can be
a good leisure activity. Grocery shopping involves exercise and helps the person feel useful.
To make shopping more enjoyable for both you and the person with Alzheimer’s disease:
●�
Try to shop when stores are least busy and consider explaining in private to regular
merchants that the person has Alzheimer’s (and what that means).
●�
Keep the person busy by giving him things to hold, asking him to push the cart, and
asking him to check off a list of items.
●�
Before leaving the store, check for items in the person’s pockets, or be sure he wears
clothes without pockets.
●�
In a difficult situation, distract the person or move with him to another location to avoid
embarrassment for everyone involved.
Any type of movement
can provide exercise
and provide a sense of
accomplishment:
• Sweeping the floor
• Raking leaves
• Tossing a ball
• Riding a stationary
bicycle
• Rocking in a
rocking chair
• Exercises can be
done sitting in a
chair while listening
to music.
PAGE 34 ALZHEIMER’S ASSOCIATION
Activities
Creating an atmosphere of quiet activity in the home promotes the feeling that the
person with Alzheimer’s disease continues to be an important member of the household.
Restlessness decreases, and life is more enjoyable for everyone. Some activities, such
as cooking, may help the person feel a part of what is happening around her. Other
examples include gardening, raking leaves, and doing simple household chores. Helping
with these types of tasks gives the person the opportunity to contribute to the household.
Tasks that do not require much supervision can give the caregiver a break.
Some guidelines to consider when planning activities for the day include:
●�
Remember that the person’s ability to perform a certain task may vary from day to day
or moment to moment.
●�
Offer activities that provide an opportunity for self-expression including dancing,
singing, playing a musical instrument, drawing or coloring, painting, or working with
non-toxic clay.
●�
Try to include some form of exercise in each day’s activities such as walking, throwing a
ball, or playing with a pet.
●�
Consider other potentially entertaining activities such as car rides, excursions to zoo/
garden/pet shop/art museum, listening to music, playing cards/table games or simple
puzzles, or watching sports.
●�
Try activities that involve reminiscence that helps promote a feeling of well being by
sorting or looking at old photographs, looking at picture books, or listening to music
from earlier years.
Keep in mind that the person with Alzheimer’s is likely to have a short attention span.
She may have little creative capacity and may not be able to initiate activities. You may
need to provide things for her to do. Activities that call for making choices or decisions
may cause her stress. You’ll need to be creative and willing to experiment with new
approaches. Refer to Appendix 1 for a list of fifty specific activity suggestions.
PAGE 35
UNDERSTANDING
BEHAVIORS
Alzheimer’s disease and other dementias not
only affect memory but can cause the person
to act in different and unpredictable ways. The
person can become easily confused, anxious
or even angry. He may accuse you or someone
else of stealing their things or say he wants to
go home when he is in his own house. He may
refuse your help or push you away when you
try to assist him or even strike out.
Understandably, these behaviors are upsetting to a family caregiver. It is not easy to try to
help someone who is angry or difficult. It is important to remember that these behaviors
are caused by the disease and are not something that can be controlled by the person
you care for. It is often helpful to try to understand why the behavior is happening and to
make changes in the home environment or how you provide care. The following section
mentions things that can help you to make changes that may prevent or resolve difficult
behaviors and make caregiving easier.
Consider using techniques that can decrease your frustration and stress while at the same
time providing relief and reassurance to the person with Alzheimer’s:
1. Keep it simple.
Schedule daily routines for tasks that require his cooperation, such as baths and
medication, at different times of the day.
2. “Redirect” instead of contradicting.
For example, if the person keeps telling you that he needs to go home for dinner, rather
than telling him that he is home, ask him what he would like to have for dinner.
3. Use “therapeutic fiblets.”
A fiblet responds to the emotion they are expressing rather than the person’s specific
words. For example: the person becomes increasingly anxious looking for a deceased
loved one. You can tell him that you have not seen that person yet, but when you do,
you’ll make sure they stop by to say hello.
Chapter 4
PAGE 36 ALZHEIMER’S ASSOCIATION
Losing and Hiding Things
The person with Alzheimer’s may not remember where to find an item, where she placed
it last, or even that she had it. She may put things in unusual places. Sometimes she may
accuse others of stealing. This may occur more frequently over time.
If the memory-impaired person insists on searching for missing items, his anxiety may
have more to do with a general sense that “something is missing” (his memory), than
with the need to find a specific item. Reassurance or redirection may help reduce anxiety.
There are steps you can take to help reduce the frustration and anxiety associated with
lost items:
●�
Label drawers and cabinets where you keep everyday articles with large printed signs.
●�
Limit the number of hiding places by locking rooms, closets, and drawers that are not
regularly used.
●�
If necessary, important or valuable items such as medications can be kept out of sight
or locked up.
●�
Designate special storage places for items such as keys, eyeglasses, hearing aids and
batteries, dentures, and other essentials. Keep spares whenever practical.
●�
Learn the person’s hiding places. Try old favorite hiding places for gifts, etc.
●�
Check trash baskets before you empty them.
Shadowing or Clinging
Following the caregiver from room to room (“shadowing or clinging”) may give the
person with Alzheimer’s a needed sense of security but can be difficult for family
members. This behavior may result from the anxiety caused by a scary or overwhelming
situation, from a feeling of helplessness, or from simply not knowing what else to do.
Tips to consider trying:
●�
Reduce confusion, noise, and clutter in the household environment.
●�
If physical contact helps the person, try substituting a pet, doll, or stuffed animal.
●�
Provide a useful diverting activity while you are busy with something else.
●�
If constant attention is needed, schedule regular “breaks” for yourself.
PAGE 37
UNDERSTANDING BEHAVIORS
Pacing
For some people, pacing seems to be triggered by certain circumstances, such as a noisy
or confusing environment. For others, it becomes part of their everyday behavior and is
related to changes in the brain.
Always try to discover and, whenever possible, remove the reason for pacing. Reasons
may include:
●�
Response to changes in the environment
●�
Boredom
●�
Emotional reactions such as anger, anxiety, frustration, fear, or confusion
●�
Need for exercise
●�
Constipation
●�
Pain or discomfort
●�
Too much sleep
●�
Hunger or thirst
●�
Need to use the bathroom
●�
Depression
If the person’s pacing is related to changes in the brain and therefore unavoidable, rather
than trying to prevent it there are things you can do to keep the person safe:
●�
Provide the person with supportive, non-skid shoes.
●�
Set up a secure area in which he can pace without danger of tripping or getting lost.
●�
Watch his feet and legs for swelling, blisters, bruises, and redness; provide treatment
for any problems that arise.
●�
See that he is dressed in loose comfortable clothing.
●�
Try to provide frequent rest periods.
●�
Offer frequent snacks and fluids since calories are burned when pacing.
PAGE 38 ALZHEIMER’S ASSOCIATION
Anger
Anger displayed toward you is often not meant for you. It can reflect a misunderstanding
of a situation, or the person’s justifiable frustration with her disabilities. The person
with Alzheimer’s may become very demanding of you at times. Keep in mind that
inappropriate or annoying behavior is usually not intentional; these changes result from
physical changes in the brain. Try not to let your own anger show. Often the person
simply doesn’t remember what is expected of him.
Irritability and belligerence can be signs of physical pain, illness, or fatigue that the
person is unable to express or describe. Ask him directly if he is in pain.
Different approaches may work at different times:
●�
A calm, predictable, safe environment should be maintained.
●�
If you simplify a task, he may be able to do it instead of demanding that you do it.
●�
A doll or stuffed animal may be effective in calming or soothing him.
●�
Pets can have a calming and soothing effect on the person with Alzheimer’s. If keeping
a dog or cat is not feasible, try animals that don’t require as much care, such as birds or
goldfish.
●�
Sometimes simply ignoring specific demands and redirecting them to another activity
or focus is the best approach.
It can happen that a person with Alzheimer’s becomes violent.
As a safety precaution, remove any weapons from the home
and keep emergency telephone numbers easily accessible. If
he does become violent:
●�
Call for assistance if necessary to protect yourself and the
person.
●�
If you are in danger, protect yourself until help arrives.
●�
Isolate the person if he is in danger of harming himself or
others and remove anything that might be used as a weapon.
●�
AVOID chemical or physical restraints. They may only serve
to increase agitation and injury.
Irritability and
belligerence may be
the person’s defense
against negative
feelings about himself.
A warm, accepting,
positive approach on
your part and simple
courtesies such as
“please” and “thank
you” indicate that you
accept him as he is.
PAGE 39
UNDERSTANDING BEHAVIORS
Catastrophic Reactions
A situation that overwhelms the person with Alzheimer’s disease can lead to a reaction
that is out of proportion to the situation. New places, loud noises, new people, large
groups, or uncertainty about a task may lead to an excessive emotional reaction such as
weeping, shouting, or striking out.
Whenever possible, it is best to avoid stressful situations that may trigger catastrophic
reactions. Learning which situations may cause the person to have this reaction can take
time. If such a reaction does occur, make note of it so you can steer clear of these triggers
in the future. Be aware that a catastrophic reaction may be the result of late afternoon
confusion, (see section in this Chapter on Late Afternoon Confusion).
Sometimes the simplest solution is removing the person from the distressing situation.
Below are some other ideas for preventing and managing a catastrophic reaction.
Prevention:
●�
Try to avoid sudden moves that can frighten a person with Alzheimer’s.
●�
Reduce the confusion around him.
●�
If a task is becoming too difficult for the person, simplify it or redirect him to another
activity.
●�
Do not force participation in an activity if he is resisting.
●�
Do not ask him to make decisions if he is already upset.
Management:
●�
Stay calm and do not overreact. Your nervousness or anxiety can heighten the tension
in an already tense situation.
●�
Cautiously distract his attention with an activity that he can easily do and enjoys.
●�
Even very angry people can respond to reassurance. A calm statement like, “I know
that you are upset and I want to help you,” may defuse the situation. Hold and touch
when appropriate.
Forgetfulness can be a benefit in these situations because a person with Alzheimer’s may
quickly forget the episode.
PAGE 40 ALZHEIMER’S ASSOCIATION
Hallucinations and Delusions
Alzheimer’s disease sometimes causes a person to see or hear things that are not there
(hallucinations) or believe things that are not true (delusions). It is not uncommon for the
person to be suspicious (paranoid) of caregivers or others.
Misinterpretations by the person with Alzheimer’s can seem like hallucinations to you:
●�
Changes in perception may cause the person with Alzheimer’s to misinterpret her
environment and appear to be hallucinating.
●�
Inadequate lighting and noises can be misinterpreted by the person.
●�
Whispering or laughing in front of the person may be misinterpreted by her.
If a delusion/hallucination does not seem to frighten or
bother the person, ignoring it may be the best approach.
●�
If the person appears to be hallucinating, leave her alone or
approach her slowly to avoid scaring her.
●�
Avoid arguing or trying to explain that what she is thinking,
seeing, or hearing is not real. Reassure her but do not argue
with her. Hallucinations look or sound very real to the person
who is experiencing them.
●�
Try to interpret what the delusion/hallucination may mean
for her; or respond to the emotion being expressed. For
example you might say, “It sounds as if you are frightened.”
Discuss it with
the doctor
• Paranoia is a treatable
condition so let the
person’s doctor
know if she is acting
suspicious of you.
• Do not assume
that hallucinations
or delusions are
an inevitable
consequence of
Alzheimer’s disease.
Medications and
other illnesses can
cause hallucinations
or delusions.
• Have her hearing and
eyesight checked.
Check that her glasses
or hearing aid are the
correct strength and
fit comfortably. Be
sure she wears them.
PAGE 41
UNDERSTANDING BEHAVIORS
Late Afternoon Confusion
For unknown reasons, an increase in confusion in the late afternoon or early evening,
sometimes coupled with restlessness, is a common symptom of Alzheimer’s disease.
This phenomenon is also known as “sundowning.” While you can’t necessarily prevent
this from happening, there are things you can do that can help make this time of day less
stressful. You may have to try more than one of these techniques to find the one that
works for the person on that particular day. It also helps to decrease your expectations of
the person during this time of the day.
Simple tasks and calm activities can help manage late afternoon confusion.
●�
Engage the person in a physical activity or simple chore before the time when she
would typically become anxious.
●�
Stay nearby while she’s doing the task so that you can reassure her.
●�
Repetitive activities such as peeling potatoes, washing tabletops or raking leaves, which
can redirect frustration, can offer a “failure-free” alternative.
●�
Encourage a nap after lunch, if it does not interfere with sleeping at night.
●�
Make “quiet time” with soft music after lunch part of your routine.
●�
Have an early dinner or late afternoon snack.
Good lighting can sometimes assist in reducing confusion. Reducing noise and excess
stimulation, such as activities in which the person is not involved can help. Telling her the
time, where she is, and what is going on can also help decrease confusion and anxiety.
Aggression
Aggressive behaviors can be verbal (shouting, yelling, cursing) or physical (pushing,
hitting, kicking). These may occur suddenly or in the midst of a frustrating situation. It is
important to try and understand what is causing the person to lash out with their words
or physical behavior, to prevent the behavior from reoccurring.
Here are some things that will help to understand and respond to aggressive behavior:
●�
Try to identify the immediate cause (Were you rushing him? Pulling at him? Was it too
noisy? Did I approach him from behind?).
●�
Don’t get upset. Be calm and reassuring.
●�
Focus on their feelings. Acknowledge they are angry or upset and be reassuring
●�
If he is safe and you are alright, give them some time to calm down before trying
another activity.
PAGE 42 ALZHEIMER’S ASSOCIATION
Sexuality and Alzheimer’s Disease
Inappropriate sexually-oriented behavior can be embarrassing
and difficult to manage. Keep in mind that many persons with
Alzheimer’s have little physical contact. Appropriate physical
contact conveys reassurance and caring. By increasing
appropriate physical contact you can decrease inappropriate
behavior.
Although it can be very hard to discuss, let family, friends and
others that the person with Alzheimer’s regularly interacts
with know that this behavior is a result of the disease. This will
allow you to use your energy towards caring for the person
rather than worrying about the reactions of others.
Behaviors that seem sexual in nature may be the person’s way of communicating
something else.
●�
If she exposes herself, she may need to use the bathroom. Have a plan for various
toileting situations while traveling or attending social activities outside the home.
●�
If she tries to disrobe, it may mean that she is tired and wants to go to bed.
●�
If sexually explicit language occurs, stay calm and redirect the person rather than
correct her.
Indiscreet self-fondling, touching others, and suggestive fidgeting should be
discouraged gently and discreetly.
●�
Try redirecting the person’s attention.
●�
Try loosely fitting clothing with elastic waistbands which are more comfortable and
discourage fidgeting.
●�
Try fitting a multi-pocket apron over her clothing. Snaps, buttons, or “safe” pocket-sized
household items placed in the apron will provide a distraction.
Sexual aggression is treatable.
●�
A frank discussion with the person’s physician is necessary if he is sexually aggressive.
●�
Never leave a child alone with a person who has a history of sexually aggressive
behavior.
Sexual desire may
increase or decrease
after the onset of
Alzheimer’s disease. At
some point, a spouse
or partner will need to
adjust her expectations
in a sexual relationship
with a person with
Alzheimer’s disease.
PAGE 43
UNDERSTANDING BEHAVIORS
Depression and Alzheimer’s Disease
Many persons with Alzheimer’s, especially when in the early stages, are understandably
depressed. Loss of independence and feelings of failure can also lead to depression or
withdrawal. Reassurance and support will help. For many people, treating the depression
that accompanies Alzheimer’s disease can provide a better quality of life for the person
and his caregivers. Depression can be successfully managed with medications and
non-drug therapies such as counseling.
If you are concerned about depression, the first step is to pursue a thorough evaluation
by a professional, possibly one skilled in geriatric psychiatry. For those with Alzheimer’s
disease, treating depression can improve the person’s sense of well-being, quality of
life, and functioning – even in the presence of ongoing decline in memory and thinking.
Some of the common signs of depression:
●�
Withdrawal/isolation
●�
Decreased ability to concentrate
●�
Signs of apathy, either verbal or non-verbal
●�
Restlessness or agitation
●�
Change in appetite
●�
Change in sleep patterns
●�
Sudden onset of problems with activities of daily living,
especially dressing or grooming
●�
Reemergence of prior symptoms of depression
Strategies for dealing with depression:
●�
Encourage exercise.
●�
Avoid alcohol, which is a chemical depressant.
●�
Avoid giving false hope or patronizing pep talks.
●�
Encourage the person to talk about or otherwise express his feelings.
●�
Do not force him to interact with others, but encourage him to be as socially active as
possible.
●�
Encourage participation in simple activities that provided enjoyment in the past, or in a
non-demanding task or “job”.
●�
Notice whether certain activities or people trigger moments of sadness or an
improvement in his mood and direct him away (or toward) accordingly.
Do not ignore
references to suicide.
Consult a mental health
professional for advice
on how to handle
references to or threats
of suicide.
PAGE 44 ALZHEIMER’S ASSOCIATION
PAGE 45
Chapter 5
SAFETY ISSUES
Changes in judgment and orientation that occur
with the progression of Alzheimer’s disease
can present risks to the person you are caring
for and those around him. Addressing these
risks often involves difficult decisions about
limiting a person’s independence and increasing
supervision and services. The information in
this section will guide you as you make these
decisions. You may need to consult your
physician, elder law attorney, the Alzheimer’s
Association or other family or health care
providers for individualized advice.
Wandering
Wandering away from home and becoming lost is an all-too-common behavior associated
with Alzheimer’s disease. In fact, more than 60 percent of people with Alzheimer’s
will wander at some point. For caregivers, it is an emotionally wrenching experience.
For the person with Alzheimer’s, it can be life-threatening. A person with Alzheimer’s
who wanders may not realize when she is lost. She may wander into dangerous areas;
wandering also puts her at increased risk of exhaustion, dehydration, and exposure.
One of the most important things you can do is enroll the person with the
MedicAlert
®
+ Alzheimer’s Association Safe Return
®
program. This is a 24-hour
nationwide emergency response service. If a person with Alzheimer’s wanders away from
home or a facility, a community support network, including the Alzheimer’s Association
MA/NH Chapter, police and hospitals, is activated to help find the person who wandered.
The program provides identification jewelry for the person and also for the caregiver.
There are modest fees associated with this program, but help is available for those who
cannot afford it. For information on enrollment or assistance in paying for the program,
please call the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 or visit
www.alz.org/manh.
PAGE 46 ALZHEIMER’S ASSOCIATION
It is impossible to predict if or when a person with Alzheimer’s disease will wander, but
sometimes the person will provides clues or behavioral signs that indicate he may be at
heightened risk of wandering. The clues include:
●�
Tries, or wants to “go home” even when at home
Try redirection. Instead of telling him that he is home, for example, tell him that it’s a
long trip home, and that he may want to take some food with him. Redirect him from the
exit door into the kitchen or dining area. Calmly switch his focus from leaving to eating.
●�
Tries, or wants to “go to work” or other former obligations
Try using fiblets. Instead of telling him that he’s been retired for 10 years, reassure him
that he doesn’t have to go to work today because he’s “on vacation.”
●�
Is restless or paces
Offering exercise and other meaningful activities throughout the day may help control
wandering behavior caused by restlessness.
●�
Is nervous or anxious
Reducing noise levels or other distractions can reduce agitation and help avoid a sudden
attempt to leave.
Once a person shows signs of wandering behavior, it can help to look more closely at the
circumstances surrounding the behavior such as:
1. What triggers it?
Is there a certain time of day when the wandering behavior is more common? Or does the
person commonly exhibit a particular clue before attempting to wander?
2. Is there something new in the person’s life?
Has there been a recent move or a new medication that could be increasing confusion?
3. Is the person hallucinating?
Offer reassurance, provide a distraction or use redirection. For more on hallucinations see
Chapter 5: Understanding Behaviors.
4. Is there a pattern to the person’s wandering?
Does she usually take the same route? Can this route be incorporated into periodic walks?
PAGE 47
SAFETY ISSUES
As Alzheimer’s disease progresses, the person will need more
and more supervision from caregivers to prevent wandering
and meet other needs. In addition to close supervision, the
following ideas can also reduce the risk of wandering:
●�
Place a slide or dead bolt out of the normal line of vision,
about six inches from the top or bottom of doors that lead
outside.
●�
Use child-safe doorknob covers that fit over the knob so that
only the cover turns, not the knob.
●�
Attach a bell or an electronic device that buzzes or chimes
to exit doors (as merchants do to alert them to customers
entering or leaving).
●�
Keep items that can be misinterpreted by the person as cues
to leave, such as hats, coats, umbrellas, purses, away from
exit doors and out of sight.
●�
Try placing a simple black doormat in front of the exit door.
This may appear to the person as a “hole” that he should
avoid. Keep in mind that if the mat is left in place over time,
the person may ignore it.
●�
At night, disguise exit doors with a full curtain or screen, or
drape a foot-square cloth over the area around the knob.
●�
Try putting traffic “stop sign” on the inside of the exit doors.
In the event that your loved one wanders, here are the steps to take to help
ensure a safe return:
●�
Inform the local police and call Medic Alert
®
+ Alzheimer’s Association Safe Return
®
program at 888.572.8566 whether or not the person is enrolled in the program.
●�
Alert neighbors to call you if they see the person outdoors unsupervised and keep a
list of neighbors’ phone numbers handy.
●�
Note the places where the person may have wandered in the past or has recently
talked about visiting.
●�
Keep several copies of a recent clear photo on hand.
●�
Keep an article of clothing with the person’s scent on it in a plastic bag.
One of the most
effective strategies for
reducing the risk of
wandering is a routine.
During the day, that
routine should include
meaningful activity
and enough physical
exercise that will both
distract a person from
wanting to wander and
provide an outlet for
energy. That activity
coupled with a regular
bedtime routine will
help to reduce the
risk of nighttime
wandering.
PAGE 48 ALZHEIMER’S ASSOCIATION
Driving
Even in its earliest stages, Alzheimer’s disease shortens attention span and affects
judgment, reaction time and visual-spatial abilities. Driving demands these very abilities:
good judgment, quick reaction time, and split-second decision making. There is no
argument that at some point, a person with Alzheimer’s disease will be unable to
drive safely.
Driving is an issue that needs to be addressed sensitively – but early – in the disease
process. Often the person with Alzheimer’s disease recognizes that she is losing her ability
to drive safely and voluntarily stops driving. Others continue to drive because of a fear of
losing the sense of independence and competence that comes with driving. Some people,
because of the disease, just cannot recognize the danger posed to herself and others.
There are steps you can take to support the person with Alzheimer’s make the decision
to voluntarily stop driving.
●�
Offer to drive. Get backup driving help from family members or volunteers.
●�
Learn about alternative transportation resources by contacting 1-800-AGE-INFO (see
PLANNING AHEAD).
●�
Learn about home delivery services that reduce the need to go out to stores.
●�
At the time of diagnosis, have the doctor ask if the person still drives. In explaining the
diagnosis, the doctor can gently point out the problem. Often families need to talk to the
doctor prior to the appointment to make sure that she brings up the issue.
If the person with Alzheimer’s agrees that she should no longer drive, she may still need
reinforcement that she made this decision.
●�
Remind the person that her doctor said she should no longer drive.
●�
Ask the doctor to write a note or prescription that specifically says she is not to drive.
●�
Have someone else she trusts reinforce the no-driving message.
●�
Ask your family’s attorney or insurance agent to reinforce the message by explaining the
potential for liability.
PAGE 49
SAFETY ISSUES
A person with Alzheimer’s may be strongly resistant to giving up the keys.
●�
Be careful not to overwhelm the person with demands that he stop driving at a time
when he may still be reeling, emotionally, from news of his diagnosis.
●�
Do not to let yourself become the focus of his anger at the idea that he needs to stop
driving.
●�
Involve his doctor in a family conference to discuss the issue and strategize approaches.
●�
Be honest with the person. Tell him that he has a problem with his memory and that it is
not safe for him to drive.
●�
Have his driving skills assessed through a driving evaluation program. Contact the
Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 or at www.alz.org/manh for
more information about these programs.
●�
Be firm, but avoid arguments about driving. Focus on other activities that the person
with Alzheimer’s can enjoy and still do successfully.
A person with Alzheimer’s who still drives will sometimes claim that he “doesn’t drive
very far from home,” “drives slowly,” or uses only familiar routes. While these claims
appear reassuring, most crashes occur at lower speeds, at intersections, and near home.
Some caregivers will approach the issue by acting as a “co-pilot” for the person with
Alzheimer’s who still drives. This is a risky and unreliable fix, since it cannot repair the
central problem of the driver’s progressively declining memory, reaction time, visual-
spatial ability, and judgment.
Sometimes the resistance comes from other people.
It is important that all of the person’s caregivers agree on the need for the person to
stop driving and a common approach to addressing the issue. If others in the life of the
person with Alzheimer’s do not agree that he should give up the keys, ask them these
questions:
Would you be comfortable with your child or grandchild riding in the car the person
was driving?
Would you be comfortable with your young child or grandchild stepping out into a
pedestrian crosswalk in front of the car the person was driving?
PAGE 50 ALZHEIMER’S ASSOCIATION
As the disease progresses, there are additional steps you may
need to consider taking.
●�
Eliminate visual cues
Seeing the car is a visual cue to use it. Remove it, garage it,
or park it out of sight with a neighbor or friend. Car keys are
another visual cue. Keep the car locked and control access to
the keys.
●�
Disable the car
Have a mechanic install a “kill switch” that, in the off
position, will prevent the car from starting. Some stores sell
car batteries with an “off” switch. If necessary, disconnect
the battery, distributor cap, or starter wire to make the car
inoperable.
A note of caution
about technological
devices in cars:
satellite-based Global
Positioning System
(GPS) navigation
devices come installed
in some cars and
can be purchased for
others. These require
that the driver be
ready and able to use
them. A person with
Alzheimer’s who is lost
is unlikely to be able to
successfully use this
device. These devices
will not prevent unsafe
driving.
PAGE 51
SAFETY ISSUES
Financial Safety
The person with Alzheimer’s disease generally loses her ability to handle money or a
checkbook before she loses the feeling that she needs money. To protect financial health,
it is vital that families complete legal and financial planning very early in the disease
process. (See Planning Ahead.) To avoid arguments revolving around money, consider
arrangements that reduce the person’s direct involvement in handling checks or money.
●�
Remove all credit cards from the person’s wallet or purse so that they will not be lost or
misused.
●�
Fill the person’s wallet with photographs, a small amount of money, identification cards,
and other items. This will allow her to feel as though she still has her “valuables.”
●�
If she wants to pay the cashier in a store, hand her the correct change.
●�
Arrange for direct deposit for pension or Social Security checks.
●�
Consider utilizing money management services available through agencies in order to
reduce the person’s direct involvement in handling checks or money.
Smoking and Drinking
Drinking alcoholic beverages may increase confusion and may be dangerous for persons
who are taking medications. Smoking can be especially dangerous for a person with
Alzheimer’s who may forget that a cigarette or pipe is lit and may leave it unattended
or hide it where it could start a fire. If the person with Alzheimer’s engages in these
behaviors, you should:
●�
Consult the person’s pharmacist or physician as alcohol interacts with certain
medications.
●�
Consider substituting non-alcoholic beverages such as a non-alcoholic beer or sparkling
grape juice.
●�
If the person’s physician is comfortable with moderate drinking and smoking, maintain
control by mixing the drink yourself and giving out cigarettes one at a time.
●�
Reduce the risk for a fire by supervising the person while he smokes and by keeping
matches, lighters, and cigarettes in your possession.
PAGE 52 ALZHEIMER’S ASSOCIATION
Absence of the Caregiver – Going Out Alone
In the early stages of Alzheimer’s disease, a person can sometimes safely go out alone.
First, however, her safety should be considered. Ask yourself if she can reach her
destination and return safely. Awareness of her surroundings will decline over time, so
her abilities should be continually re-evaluated. To help ensure the person’s safety if she
is going out alone:
●�
Enroll her in the MedicAlert
®
+ Alzheimer’s Association Safe Return
®
program as
explained in the beginning of this chapter.
●�
Tell the local police and neighbors that the person has Alzheimer’s disease and is at risk
for wandering.
●�
Make sure she carries personal identification.
●�
Give her a card with her address, telephone number, directions to her house, and
instructions on what to do if she gets lost.
●�
Observe the person frequently to evaluate her ability to cross streets and follow other
safety rules.
Absence of the Caregiver – Staying Home Alone
Persons in the early-to-middle stages of Alzheimer’s disease can sometimes be safely left
alone. First however his safety should be considered. Ask yourself if he gets agitated or
nervous when left alone in a room for even a short period, or attempts to look for you by
leaving the house. His ability to stay home alone will decline over time, so you will need
to constantly re-evaluate. Appropriate precautions can minimize the anxiety and safety
risks caused by a brief or extended absence of a familiar caregiver.
If person is to be home alone, some recommendations to follow are:
●�
Even if you are leaving for only a short period, say good-bye and tell the person the
approximate time you will return.
●�
Leave a note in sight indicating where you are going and when you will return.
●�
Leave a photo album of family members easily accessible to provide reassurance.
●�
Enlist the support of neighbors so they’ll be ready and willing to help if needed.
●�
Enroll him in the MedicAlert
®
+ Alzheimer’s Association Safe Return
®
program as
explained in the beginning of the chapter.
●�
Let the local police know that the person has Alzheimer’s disease.
●�
Be sure safety hazards are removed or reduced from the home (see the section on
Household Safety at the end of this Chapter).
PAGE 53
SAFETY ISSUES
Medications
Persons with Alzheimer’s disease are vulnerable to
overmedication and to reactions from drug combinations. The
person’s behavior should be closely monitored for any changes
that may indicate negative effects of medication.
Preventing medication errors
●�
Establish a routine for taking medications that encourage
cooperation and accuracy.
●�
If he is capable of understanding, tell the person, in simple
terms, what the medication is and why it is being given.
●�
Keep a written record of all current medications with name,
dosage, and starting date.
●�
Medication boxes that separate pills by the day and time to
be taken can be a useful memory aid for the caregiver and for
persons with early stage Alzheimer’s. Automated medication
dispensing options may be available at your pharmacy.
Safety and swallowing
●�
If necessary, put a lock on the medicine cabinet or use a locked drawer to prevent the
person from taking the medications without supervision.
●�
If you are not sure what or how much the person has taken, call the poison control
center for advice at 1-800-222-1222 or take the person to a hospital emergency room.
●�
Be certain that pills have been swallowed. Pills can be hidden in the cheek and under the
tongue.
●�
If the person is unable to swallow pills, ask your pharmacist if you can crush and mix
them with a small amount of food or liquid. Some medications come in liquid form; ask
your doctor or pharmacist.
Consult a doctor
or other medical
professional before
giving over-the-
counter medication.
Over-the-counter
medicine, vitamins
and supplements can
interact negatively
with prescription
medications.
Pharmacists are a good
source of information
about medications and
their effects.
PAGE 54 ALZHEIMER’S ASSOCIATION
Household Safety
Persons with Alzheimer’s disease are vulnerable to a number of dangers in and around
the home. Taking the time to make the home as safe as possible is important to
preventing injury since it is not always possible to be in the same room with the person
every minute of every day. An intercom system, or child monitor, allows you to hear the
person when you are not in the same room.
Ways to reduce trip and fall hazards
A person with Alzheimer’s disease may be prone to falling
due to stooped posture, shuffling gait, stiffness, loss of motor
coordination, or misjudging distances.
●�
Maintain good lighting.
●�
Keep walkways clear avoiding scatter rugs, small pieces of
furniture and exposed extension cords.
●�
Keep remaining furniture in its usual place and pad or cover
the sharp corners.
●�
Don’t wax the floors to the point of being slippery.
●�
Consider safety locks on windows.
●�
Make stairs safer:
- Try a gate to prevent access to stairs.
- Lock attic and basement doors to prevent access to those
stairs and areas.
- Keep stairways well lit.
- Consider painting the top and bottom stairs a different
color from the others.
- Apply non-skid strips on steps.
●�
Place sturdy grab bars or handrails near the bed, toilet, bath,
and on stairways and hallway walls.
●�
Evaluate the outside of the house and surrounding areas for
the need for rails
and fences.
●�
Eliminate objects that are on wheels and could be misused
by the person for support when walking.
The home can contain
some serious threats
to safety which should
be removed or locked
up including:
• Firearms
• Sharp objects such
as knives, meat
forks, scissors,
and other pointed
utensils
• Garbage disposals
should be
disconnected both
to avoid injury and
to prevent it
becoming clogged
with food or other
household items.
PAGE 55
SAFETY ISSUES
Ways to reduce poisoning and choking hazards
Changes in judgment can place a person with Alzheimer’s at risk for eating and/or
choking on unsafe substances.
●�
Keep poisons, all medications and hazardous substances, such as bleach and furniture
polish, out of reach or in a locked cabinet.
●�
Remove poisonous plants. Common examples include coleus, philodendron, and
poinsettia.
●�
Limit the number of small items within reach and put knick-knacks away.
●�
Avoid the use of “look-alike” objects, such as fruit-shaped magnets on the refrigerator.
Ways to reduce fire and burn hazards
Impaired memory and judgment can present risk for fire and burns especially while cooking.
●�
Be sure to have fire extinguishers and working smoke detectors in the house, and have
them checked regularly.
●�
Help prevent kitchen fires by removing the knobs from the stove, disconnecting
appliances, or restricting access to the kitchen when not in use. Try shutting off the
circuit. This includes microwave as well as conventional ovens.
●�
Set hot water temperature no higher than 120 degrees Fahrenheit to avoid scalding.
Prevent getting locked in or out
People with Alzheimer’s disease have a tendency to lose things such as keys or
accidentally lock themselves into a room or a caregiver out of the house.
●�
Use non-locking doors inside the house, or remove existing locks. Be sure that you have
keys for doors that lock.
●�
Hide a spare key outside the house in case the person locks you out.
●�
Give a set of keys to one or more trusted neighbors, friends, or family members.
Being able to respond appropriately and summon help quickly in the event of an
emergency is essential.
●�
Have a working knowledge of first aid procedures, such as the Heimlich maneuver
(a technique for dislodging food caught in the throat). Information and courses are
usually available from your local library, Red Cross chapter, or hospital.
●�
Keep a list of emergency numbers, including the poison control center and the
Safe Return program, by every telephone.
●�
Keep on hand an emergency reference list of medications, physicians, and phone
numbers of back-up people.
PAGE 56 ALZHEIMER’S ASSOCIATION
PAGE 57
PLANNING AHEAD
The Family Care Guide discusses many ways to help
you support and care for a person with Alzheimer’s
disease. You should be armed with knowledge about
the disease, communication skills, safety issues,
behavior management, and assistance with daily living
that will help make caregiving more manageable and
improve quality of life for you and the person with
Alzheimer’s disease. No one can or should provide care
on their own. It is important to have a knowledgeable medical team behind you and to
seek assistance in legal and financial planning and providing daily care. This section will
provide general guidance in these areas, but for provider referrals in your geographic
location and for your specific needs, please call our 24/7 Helpline at 800.272.3900.
Partnering with Your Doctor
Choosing a primary care doctor and developing a working relationship with her is one of
the most important steps to managing Alzheimer’s disease.
A good primary care physician can:
●�
Ensure that other chronic medical conditions and acute illnesses are treated so that the
person with Alzheimer’s can function to the best of his ability.
●�
Help to coordinate referrals and recommendations of specialists that can include
neurologists, psychiatrists, and neuropsychologists.
●�
Oversee prescription and over-the-counter medications to minimize side-effects and
avoid interactions.
To find a primary care physician who can best support someone with a diagnosis of
Alzheimer’s disease:
●�
Ask friends and family to recommend someone they trust. The friends that you make
through Alzheimer’s support groups or education events may be able to recommend
primary care physicians who are familiar with Alzheimer’s disease.
●�
Most hospitals and Alzheimer’s diagnostic clinics should be able to refer you to primary
care physicians and/or geriatricians with an understanding of the disease.
●�
Most health insurance companies have websites and/or referral lines that can refer you
to physicians in your area who are accepting new patients.
●�
Once you receive several referrals, call the physicians’ offices and ask to speak with
a staff member who can provide details about the doctor’s credentials and expertise.
Ask how many patients are in the age range of your loved one and if the physician has
experience with Alzheimer’s disease.
Chapter 6
PAGE 58 ALZHEIMER’S ASSOCIATION
To prepare for a doctor’s visit:
●�
Make a list of questions.
●�
Take a family member or friend with you.
●�
Write down changes in memory and thinking that you or
others have noticed since last visit.
●�
Bring a list of ALL medications including prescriptions,
over-the counter medications, and vitamins/herbal
supplements.
●�
Ask for a longer appointment if you have a lot of questions.
At the doctor’s appointment:
●�
Be honest and open about how you are doing.
●�
Ask questions especially if you do not understand the doctor.
●�
Discuss treatment options and opportunities for clinical
trials.
●�
Write down or tape record information from the doctor.
Call the doctor immediately if the person with Alzheimer’s
experiences any of the following symptoms:
●�
Sudden change in mental status or mood
●�
Blackouts, fainting spells, or falls
●�
Sudden inability to speak or move part of body
●�
Fever
●�
Sudden incontinence
Include the person
with Alzheimer’s in
conversations with the
doctor but do not talk
about her in front of
the physician.
If you find this
impossible,
communicate
your concerns and
observations with the
doctor prior to the
appointment by phone,
letter, fax or email.
Always check with
the primary care
physician before
adding or stopping any
medication.
This includes all
prescriptions, over-
the-counter drugs,
and vitamin/herbal
supplements.
PAGE 59
PLANNING AHEAD
Legal and Financial Planning
As Alzheimer’s disease progresses, the person’s ability to deal with medical, financial and
legal matters will be affected. The sooner you begin making legal and financial plans, the
more the person will be able to participate in decisions that affect his future. If possible,
you can have conversations with the person about his thoughts regarding long-term
care and the kind of medical treatment he wants. Five Wishes, available from the website
www.agingwithdignity.org can be a useful tool for generating these discussions.
It is never too early to start planning ahead. Taking steps now can prevent undue stress
later, minimize potential negative financial and legal consequences, and ensure that the
wishes of the person are honored in the future by putting several important documents in
place. An elder law attorney can help you to draw up the following documents:
1. Durable Power of Attorney—Names person to take care of financial matters if you
are unable to do so.
2. Health Care Proxy (in Massachusetts)/Durable Power of Attorney for Health Care
(in New Hampshire)—Names a person to make medical decisions for you if you are
unable to do so.
3. Will—Describes financial estate and itemizes distribution in the event of your death
4. Living Will (Optional)—States your preferences for critical medical procedures, if you
are unable to make decisions. State laws vary.
5. CPR directive (Optional)—Tells emergency personnel that you do not want to be
resuscitated. Talk to your doctor if you are interested in a CPR directive. State laws vary.
PAGE 60 ALZHEIMER’S ASSOCIATION
Some other things to consider when planning ahead and to discuss with an elder law
attorney or financial advisor are:
●�
Get valid signatures on legal documents while the person is still able and competent to
sign.
●�
Learn about benefit programs that provide income support or help pay for services,
such as Social Security Disability and Medicaid, for which you or the person may be
eligible.
●�
Investigate long term care insurance. It is an option that is suitable for some individuals
and may be worth investigating. Carefully examine specific policies, looking for
benefit limitations, pre-existing condition exclusions, provisions for inflation, etc. Most
companies will not insure an individual with an Alzheimer’s diagnosis.
●�
Locate the following documents and keep them in a safe yet
accessible place:
- Insurance policies (health, life, etc.)
- Will
- Bank books
- Automobile titles and property deeds
- Tax records
- Safe deposit box keys
- Social Security card
- Medicare card and other insurance cards
- Cemetery plot deed.
Medicare and most private health insurance programs pay for very limited services
provided in the home or in a nursing home.
Only Medicaid (which is NOT the same as Medicare) and a few private insurance
policies pay for extensive skilled nursing home care. Medicaid regulations are
complex and change often. Seek knowledgeable help and advice from the Alzheimer’s
Association MA/NH Chapter, a social worker or case manager, or a lawyer or financial
advisor who is familiar with Medicaid regulations.
The Alzheimer’s
Association, MA/NH
Chapter offers a free
program on legal and
financial planning.
The program is
presented by elder
law attorneys who
volunteer their time.
It is held in various
locations throughout
the region. For a
full listing of our
educational programs,
please visit our website
www.alz.org/manh or
call our 24/7 Helpline at
800.272.3900.
PAGE 61
PLANNING AHEAD
Available Community Resources
There are a wide range of support services available for
people with Alzheimer’s disease and their care-partners,
some of which are appropriate at any stage of the disease
process and others which are appropriate at a specific stage
of the disease. Services are provided by a number of different
kinds of agencies. The cost for some of these services may
be covered by health insurance policies or be subsidized
through government programs, many of which have eligibility
guidelines based on the person’s age, residence, and income
and assets. Other services can be paid for privately (out-of-
pocket).
For advice and information at any stage of Alzheimer’s
disease, the Alzheimer’s Association offers a 24/7 Helpline and
individualized Care Consultation at no cost.
●�
24/7 Helpline (1.800.272.3900)—Advice and information
available from trained staff and volunteers from the
Alzheimer’s Association 24 hours a day 7 days a week. The
Massachusetts/New Hampshire Chapter provides follow-up
calls to those who would like them.
●�
Care Consultation—In-depth, person-to-person assessment, education and
support provided by appointment through the Alzheimer’s Association,
Massachusetts/New Hampshire Chapter.
●�
Education—Programs offered at various locations throughout Massachusetts
and New Hampshire on a variety of topics related to Alzheimer’s disease and
caregiving. A listing of programs is available on our website, www.alz.org/manh,
or by calling the 24/7 Helpline.
In the Appendix 1, you will find a detailed Table of Community Resources that
explains what they are and how to locate them.
For in-depth and ongoing assistance with planning services, there are private
geriatric care managers. Geriatric care managers have diverse experience,
education and backgrounds. Many geriatric care managers are nurses or social
workers. They provide individualized and ongoing assessment of needs and
coordination of services for a fee.
The system of
community services
can be confusing and
overwhelming. You
should not hesitate to
ask for help. Assistance
in navigating the
system is available
from the Alzheimer’s
Association’s
24/7 Helpline at
800.272.3900 or
www.alz.org/manh.
In Massachusetts,
you can also call
800-AGE-INFO (800-
243-4636). In New
Hampshire, you can
also call Service Link
(866-634-9412).
PAGE 62 ALZHEIMER’S ASSOCIATION
Socialization
Throughout the disease process, it is very important that the person with Alzheimer’s
disease be engaged in routine activities that provide meaning and socialization. Providing
this level of mental engagement can be very difficult for one caregiver to manage. There
are several ways to enhance opportunities for meaningful activity and socialization
including:
●�
Involvement of family and friends
●�
Volunteers from community and religious organizations
●�
Activities at local Senior Centers/Councils on Aging—Local agencies located in all
towns that provide information, programs, and services for senior citizens. The type of
programs and services varies widely by town. Senior centers do not provide supervision
for people with Alzheimer’s disease and would require that someone accompany him.
●�
Social or adult day health care—More structured programs for people who need more
supervision and direction than offered at a senior center. The cost of these programs
might be subsidized if certain eligibility guidelines are met.
●�
Private pay companions—Available through home care agencies. Caregivers can also
hire companions independently.
Transportation
Available transportation services can vary by town, so a good place to start is with your
local Council on Aging for referral information. For Massachusetts residents, you may
also contact your local Aging Service Access Point (ASAP) for additional information. For
New Hampshire residents, contact your local Service Link center. Call our 24/7 Helpline to
obtain the contact information for these service agencies in your town and state.
For referrals to any of
the services described
in this guide and
consumer advice on
how to select services,
call the 24/7 Helpline at
800. 272.3900.
PAGE 63
PLANNING AHEAD
In-Home Services
At some point in the disease process, caregivers will probably need some assistance in
their homes to help with personal care, meal preparation, and household tasks to meet
care needs and to provide respite. Services can include Meals on Wheels, home health
aides, and homemaking. Some of these services are subsidized by the state, and others
are paid for privately. A good place to start exploring in-home services are:
●�
Aging Services Access Points (ASAPs - Massachusetts)—Regional agencies that cover
the entire state of Massachusetts to provide information and referral, programs and
services to people 60 and over and anyone with a diagnosis of Alzheimer’s disease
and related disorders. There are financial, age, and need requirements to be eligible
for some services. To find the Aging Service Access Point for your city or town, call
800-AGE-INFO (800-243-4636).
●�
Service Link – A network of resource centers across the state of New Hampshire that
provide information and resource referrals to older adults, adults with chronic illnesses
and care partners. The toll-free number for service link is (866) 634-9412.
PAGE 64 ALZHEIMER’S ASSOCIATION
Successful introduction of services to a person with Alzheimer’s disease
Once the decision has been made to bring services into the home or to involve the person
with Alzheimer’s in a day program, it is important to think about how to introduce the
change. Expect that there will be an adjustment period – for you and for the person.
●�
Be persistent. Often the person with Alzheimer’s is resistant to change because it
confuses and frightens her. Over time, she will become accustomed to substitute
caregivers in the home or at an adult day program.
●�
Establish a consistent routine. This will help the person adjust to new situations or
environments.
●�
Try to introduce only one service at a time. Too much change at once can be
overwhelming.
●�
Ask for help. Staff members of the various service agencies are accustomed to dealing
with the challenge of reluctance, so don’t be afraid to ask them for help.
Tips for working successfully with in-home help
●�
Start with someone familiar.
Try leaving the person alone with a familiar relative or friend a few times before
introducing him to a stranger. This can help him get used to spending time with people
other than you.
●�
Stay the first time.
Staying with the person the first time the home-care worker comes can help
reduce anxiety.
●�
Give instructions.
Find out if the home-care worker has training or experience working with persons with
Alzheimer’s. This will give you an idea of how much instruction you will have to give.
●�
Touch base.
Be present when the worker arrives and be home before the worker is scheduled
to leave.
●�
Tell the worker about the person’s routine.
Provide a written or verbal description of the daily schedule along with helpful tips to the
worker when he or she arrives.
●�
Point out safety issues.
If the person cannot be left alone, or needs to be supervised when eating, be sure that
the worker understands this.
PAGE 65
PLANNING AHEAD
Tips for introducing the person to an adult day program
●�
Go for a visit.
Visit the program yourself first. Then schedule a visit together during a time when there
is an activity that the person would enjoy.
●�
Consider what schedule would work best.
For some persons with Alzheimer’s, it may be best to start with a few short days and
gradually increase the schedule as he becomes more comfortable going. For others,
it may be better to attend several days in a row so that the environment and people
become more familiar more quickly.
●�
Be gentle, but firm.
The person may be resistant to going, but typically once he attends for a few days he
will usually look forward to it. Reinforce any positive experiences he has while there.
●�
Consult the staff.
You will likely learn that the person is developing friendships and enjoying activities
more than he is reporting to you. Remember, adult day programs would be empty if
their clients couldn’t adjust.
Residential Care May Become Necessary at Some Point in Care
Residential care can be provided in two settings, assisted living facilities and
nursing homes. It is highly recommended that you choose an assisted living
facility or nursing home with a special care or Alzheimer’s care unit that is secure
with specially trained staff. You can obtain a consumer guide on how to select
the best place for your loved one from the 24/7 Helpline.
●�
Assisted living facilities offer a combination of housing, meals, and personal care
services. The level of nursing and medical care varies, but these facilities are
generally not designed for people with serious medical conditions. The payment
source for Alzheimer’s Care Units is private pay.
●�
Nursing homes provide 24-hour skilled nursing care to people with qualifying
medical needs. Medicaid (or MassHealth) will pay for nursing home care once
income and asset guidelines are met.
PAGE 66 ALZHEIMER’S ASSOCIATION
PAGE 67
TAKING CARE OF
YOURSELF
Taking care of a family member who is
suffering from Alzheimer’s disease can be
emotionally and physically exhausting. Often
caregivers forget or put off taking care of
their own physical and emotional health. It
is important to pay attention to yours needs
as the caregiver; otherwise your own health
may be put at risk, and the person’s care may
suffer. You should see your primary care physician or other health care provider if you
recognize any of the following symptoms in yourself:
●�
Mood swings
●�
Unusual irritability
●�
Inability to fall asleep or stay asleep
●�
Difficulty concentrating
●�
Digestive problems
●�
Unfamiliar aches and pains
●�
Increased desire for use of drugs or alcohol
●�
Frequent bouts of crying, a sense of failure or hopelessness
●�
Lack of interest in family or normal activities
Keep in mind that research shows that many caregivers die before the person for whom
they provide care. So though it may seem difficult to make the time, caring for you, the
caregiver, is critical.
Chapter 7
PAGE 68 ALZHEIMER’S ASSOCIATION
Caring for the Caregiver
Caregiving can leave you with little time and energy to care for yourself, but you cannot
care for someone else if your own physical, emotional, and social needs are not met. Here
are some important considerations for taking care of yourself.
Get some exercise
●�
Start a routine, or keep up your pre-caregiving exercise routine.
●�
Ask a friend, neighbor, or family member to stay with the person while you go for a walk.
●�
Consider taking a group exercise class.
●�
Remember that a wide range of exercise can be beneficial including walking, dancing,
biking, bowling, dancing and gardening.
Maintain outside interests and activities
●�
Get out of the house for a period of time each day.
●�
Don’t isolate yourself. Keep in touch with friends. You may have to call them. People
may hesitate to call, not wanting to intrude or interrupt at a bad time.
●�
Keep your appointments with your physician, dentist, counselor, etc.
Ensure adequate rest
●�
Have someone sleep over occasionally who is willing to take over providing care, so that
you can get an uninterrupted night’s sleep.
●�
When the person rests, try to rest yourself or do something special for yourself.
●�
Take advantage of respite services in your community.
PAGE 69
TAKING CARE OF YOURSELF
Give yourself an “emotional break”
●�
Try to avoid feeling guilty. Remember that caring for yourself is equally good for him for
as it is for you.
●�
Try to keep realistic expectations for yourself, the person, and others.
●�
Pace yourself. Do what is most important, and then do more if you have the energy. If
not, stop.
●�
If you are trying out a new caregiving strategy, do not expect to do it perfectly right
away.
●�
Know when stresses are becoming too much to bear and what you need to get your
strength and objectively back.
●�
Allow yourself to the time grieve the losses that accompany Alzheimer’s disease.
●�
Take time occasionally to remind yourself of the value of what you are doing.
●�
Don’t lose your sense of humor. If you can laugh, even alone, do it.
Get help
●�
Give friends and relatives concrete ideas on what you need help with.
●�
Remember that you should not do all of the care yourself.
●�
Fully explore what is available and make use of community resources.
●�
Consider counseling. Depression is commonly associated
with caregiving, and it can be treated.
●�
Try a support group.
Support Groups
It is sometimes difficult for caregivers to believe that support
groups can be of value to them. For someone who already
feels too busy, attending a meeting can seem like just another
burden. The benefits of joining a group, however, are often
enormous. The goal of support groups is to aid caregivers in
managing behaviors and in understanding and coping with the
daily challenges of caregiving. Mutual support and guidance,
as well as educational information, are offered. The Alzheimer’s
Association is committed to the support and promotion of
caregiver support groups, based on the belief substantiated by
research that they can be of significant and continuing benefit
to caregivers.
There are many
different kinds of
support groups. Some
are small and intimate;
others are more
formal, with speakers
and presentations.
Try different groups
until you find one that
meets your needs.
Contact the Alzheimer’s
Association’s
24/7 Helpline at
800.272.3900 or at
www.alz.org/manh for
more information and a
list of groups.
PAGE 70 ALZHEIMER’S ASSOCIATION
Supporting Children and Teens
It is important that we recognize the impact of caregiving on all the generations that
are touched by Alzheimer’s disease. Children learn how to care by watching and role
modeling the adult caregivers. The key to supporting children and teens through the
various stages of care required for the person with Alzheimer’s disease is to provide
reassurance through a positive emotional response.
Talk to the child or the teen.
●�
Teach children about Alzheimer’s disease; about how the disease changes behavior; and
what to expect as the disease progresses.
●�
Discuss potential behavior by the person with Alzheimer’s that a child or teen may find
embarrassing, so the child knows the behavior is not willful.
●�
Explain that because of the disease they cannot expect the behavior of the person to be
the same today as it was yesterday, and it may be different tomorrow.
Encourage questions and sharing.
●�
Encourage children to ask questions, but be careful to provide only as much information
as you feel they are able to handle.
●�
Encourage children to “tell someone” about their loved one with Alzheimer’s disease
and how the caregiving experience has impacted their lives and family.
Offer support and education.
●�
Contact the child’s guidance counselor at school and let him know how caregiving
issues at home may be impacting the child’s behavior or study habits.
●�
Give children as well as the person with Alzheimer’s all the reassurance, affection, and
security they need.
●�
Contact the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 or at www.alz.org/
manh. The website contains helpful information and videos especially geared towards
children and teens.
Let them be involved.
●�
Allow children to share in caregiving responsibilities that are age-appropriate.
●�
Remember that the quality of time that a child enjoys with a person with Alzheimer’s
disease is far more important than the quantity of time. A shared project, lasting no
more than an hour, will enable the child to remain a child and not assume the role of an
adult caregiver.
PAGE 71
TAKING CARE OF YOURSELF
Talking to Family and Friends
There is no right way to tell others that someone has a diagnosis of Alzheimer’s disease,
and everyone has their own methods. Most people prefer to tell those closest to them
first, and these family members and friends may be able to help you tell others in your
social circle. Sometimes a face-to-face conversation is best, and other times a telephone
call, e-mail, or letter will suffice. Whatever method you chose, it is important to include
the following information:
●�
Basic information about Alzheimer’s disease and where to find more information
●�
How Alzheimer’s disease is currently affecting the person, such as what symptoms she
is experiencing
●�
What things the person is still able to do and enjoy
●�
Specific ways that others can be helpful
It is important not to be ashamed about a diagnosis of Alzheimer’s disease. Public
awareness and understanding about Alzheimer’s disease is improving in our society,
but some people still hold onto false stereotypes about it. If family and friends react
negatively to the news, it is important to remember that their reaction is based on lack of
education and understanding. The Alzheimer’s Association MA/NH Chapter can provide
materials that you can share with them. You should not take anyone’s negative reaction
personally. While some people may drift away, friends, neighbors and relatives can be
excellent sources of support if they understand what is involved in caring for a person
with Alzheimer’s.
Educate supportive people
●�
Tell friends and family about the person’s condition. Explain that the person may act in
ways that are different and confusing. Although outwardly the person may look fine, she
has a brain disease.
●�
Recommend that friends and relatives learn more about Alzheimer’s disease (share this
Guide or direct them to the Alzheimer’s Association MA/NH Chapter website at
www.alz.org/manh). Invite them to accompany you to a support group meeting.
PAGE 72 ALZHEIMER’S ASSOCIATION
Help them help you
●�
Suggest specific tasks for friends and relatives to do, such as
grocery shopping or other errands.
●�
Some friends and relatives will handle visits with the person
better than others will. For those who have difficulty, suggest
other ways for them to assist you.
●�
Remind friends and relatives that the person is an adult. Do
not talk about the person with Alzheimer’s in their presence
as though she were not there. A person with Alzheimer’s, like
all human beings, needs to be related to in a way that helps
maintain her dignity and self-esteem.
Help visits to be successful
●�
Encourage children to visit. Children will typically relate to
who the person is now. They can often communicate well
with someone who has a limited ability to express herself
verbally.
●�
Prepare the visitor for problems with communication. Teach
friends and relatives what you have learned about ways to
communicate with the person.
●�
Suggest that people visit one at a time to avoid over-
stimulating and confusing the person. Suggest that visitors
stay for only a short time.
●�
Encourage them to plan activities for their visit, such as
having a snack, going for a walk, or doing a simple activity
like looking at a photo album.
Keep lines of communication open
●�
Talk over problems as they arise to avoid misunderstandings.
●�
Family stresses have a way of surfacing during this time.
For example, adult children may disagree about what is the
best approach to caring for a parent with Alzheimer’s; a
spouse may refuse help because he doesn’t want to burden
his extended family; one family member may refuse to get
involved at all.
●�
Try setting up a family conference to air problems, divide tasks, and make decisions
together. You and each family member should have a clear understanding of the disease
and how caring for the person affects you and other family members.
Tips for a successful
family meeting:
• Allow everyone
equal time to share
their opinions and
observations on
the issue and what
each individual can
contribute to its
solution.
• Limit the conversation
to the issues decided
upon beforehand and
do not bring up old
family disagreements.
• Show respect to one
other and keep a
sense of humor.
• Take notes on what
is agreed upon at
the meeting—how,
by whom, and when
things will be done.
• Make a plan for
following up with
one another and
keeping lines of
communication open
such as a group email
so that everyone gets
the same information
at the same time.
PAGE 73
REFERENCES
Alzheimer’s Association. 2010. Basics of Alzheimer’s disease.
Alzheimer’s Association. 2009. If you have Alzheimer’s disease: What you should know,
what you should do.
Alzheimer’s Association. 2010. Personal care.
Alzheimer’s Association. 2009. Six out of 10 people with Alzheimer’s will wander.
Alzheimer’s Association. 2011. Staying safe.
Alzheimer’s Association. 2009. Take care of yourself.
Alzheimer’s Association. 2009. 10 warning signs of Alzheimer’s disease.
Alzheimer’s Association, MA/NH Chapter. 2011. The New Hampshire Family Care Guide
for Alzheimer’s Disease and Related Disorders.
Alzheimer’s Association, MA/NH Chapter. 2010. Taking Control.
Alzheimer’s Association, Northern California/Northern Nevada Chapter. 2008. Help and
hope: For persons diagnosed with Alzheimer’s disease and related disorders.
Burgener, S. & Twigg, P. 2007. A personal guide to living with progressive memory loss.
Philadelphia, PA: Jessica Kingsley Publishers.
By Us For Us. 2007. Enhancing communication: An inspirational guide for people like us
with early-stage memory loss. Waterloo, ON: University of Waterloo.
Doraiswamy, P.M. Gwyther. L.P. 2008. The Alzheimer’s action plan: The experts’ guide to
the best diagnosis and treatment for memory problems. New York, NY: St. Martin’s Press.
Shimer, P. 2002. New hope for people with Alzheimer’s and their care-givers. New York,
NY: Three Rivers Press.
PAGE 74 ALZHEIMER’S ASSOCIATION
PAGE 75
APPENDIX 1:
50 activities to do with a person who has Alzheimer’s disease
1. Clip coupons.
2. Make a Valentine collage.
3. Rake leaves.
4. Play favorite songs and sing together.
5. Use the carpet sweeper or broom.
6. Take a ride.
7. Bake cookies.
8. Dye eggs.
9. Read the daily paper out loud.
10. Match a basket of socks.
11. Ask someone with a baby or young child
to visit.
12. Take a walk.
13. Reminisce about the first day of school.
14. Plant seeds indoors or outdoors.
15. String Cheerios
®
to hang outside for birds.
16. Look at family photos.
17. Toss a ball.
18. Sweep the patio.
19. Color pictures.
20. Have an afternoon tea.
21. Weed the flower bed.
22. Make cream cheese mints:
2 lbs powdered sugar, 8 oz cream cheese,
2 drops peppermint extract. Knead
together and press dough into molds. Chill.
23. Remember great inventions.
24. Sing favorite hymns or recite prayers.
25. Make holiday cards.
26. Play Pictionary® or other suitable games.
27. Dance and/or listen to music.
28. Sort playing cards by their color.
29. Write a letter to a family member or have
the person dictate a letter to you.
30. Pop popcorn.
31. Read from journals or magazines.
32. Give a manicure.
33. Make paper carnations out of facial tissue.
34. Invite a neighbor or friend who has a calm
pet to visit.
35. Cut pictures out of greeting cards or
magazines.
36. Make homemade applesauce or cranberry
sauce.
37. Wash silverware and put it away.
38. Put a simple puzzle together.
39. Bake homemade bread.
40. Sort objects such as beads and buttons
by color or shape.
41. Read classic short stories.
42. Use colored paper, string, and paste for
jewelry.
43. Put bird feed out and watch the birds.
44. Sing holiday songs.
45. Say “Tell me more” when the person
starts talking about a memory.
46. Clean out a pumpkin. Bake seeds.
47. Roll yarn into a ball.
48. Work in a garden or create a small indoor
garden in a box.
49. Listen to recordings of family and friends.
50. Look at art books or travel books, and
engage in conversation about what the
person sees.
PAGE 76 ALZHEIMER’S ASSOCIATION
PAGE 77
APPENDIX 2:
Table of Community Resources
Community
Resources
What they are and how to locate them
Adult Day
Programs
There are three types of Adult Day programs:
Social Day Care: Structured, supervised activities with no
medical component and generally open 2-5 days per week.
Payment is generally private pay; or through an ASAP or
Service Link on a sliding scale for those who qualify. (See
below for information on ASAPs). In New Hampshire, there
are programs called Day Away Programs designed for people
with early-stage Alzheimer’s Disease.
Standard Adult Day Health Programs: Structured, supervised
day programs for adults who require medical supervision or
rehabilitation services. Payment sources include Medicaid;
through an ASAP (on a sliding scale for those who qualify) or
Service Link; private insurance; the Department of Veterans
Affairs (VA); and private pay.
Specialized Alzheimer’s Day Programs: Specialize in serving
individuals with Alzheimer’s and related dementias. These
programs have trained staff as well as appropriate activities,
low client-to-staff ratios, and a safe environment for people
who may wander. Payment sources for these programs
are generally the same as for standard Adult Day Health
programs.
For information about and referrals to adult day programs
in your area, contact the Alzheimer’s Association’s 24/7
on line with Helpline at 800.272.3900 or at
www.alz.org/MANH.
PAGE 78 ALZHEIMER’S ASSOCIATION
Aging Services
Access Points
(ASAP) /
Service Link
and
Area Agencies
on Aging
(AAA)
In Massachusetts, ASAPs and AAAs are a network of
agencies that operate a wide range of services for older
adults and their family caregivers. There is an ASAP/AAA that
provides services in every community in Massachusetts.
ASAPs provide: information and referral to home and
community services; case management; homemaker
services; chore and personal care (home health aide)
services; respite services (in-home as well as adult day
programs); home-delivered meals; family caregiver support
services; and protective services.
Payment: Many services are provided on a sliding scale
for people age 60+ who financially qualify as well as for
individuals under age 60 with a documented diagnosis of
Alzheimer’s or a related dementia who financially qualify.
Some services request a voluntary donation only.
For information or to be directed to the ASAP that serves
your community contact 800-AGE-INFO (1-800-243-4636) or
visit their website at www.800ageinfo.com.
In New Hampshire, the ServiceLink and Disability Resource
Center assists older adults and their family caregivers in
finding local and state resources. ServiceLink can direct
families to opportunities for services to be subsidized.
The toll-free number for ServiceLink is (866) 634-9412.
The website is www.servicelink.org.
PAGE 79
APPENDIX 2
Assisted
Living
Assisted living offers a combination of housing, meals and
personal care services. They do not provide medical or
nursing services. They are not designed for people who need
serious medical care. Assisted living is intended for adults
who need some help with activities such as housecleaning,
meals, bathing, dressing, and/or medication reminders.
Assisted living residences can be freestanding or may be
combined with other levels of care such as nursing homes
or independent living units. Increasingly, assisted living
residences are being designed to meet the special needs of
individuals with Alzheimer’s disease or related dementias.
For most residences the source of payment is private pay
or long-term care insurance. In MA, some people may be
eligible for assistance through the Group Adult Foster Care
(GAFC) program, which pays for the service component only.
To be eligible for GAFC, the person must qualify financially
for Medicaid and must also demonstrate that he needs daily
assistance with activities such as dressing, bathing, eating, daily
hygiene, and ambulation. GAFC is not currently available in NH.
The Massachusetts Office of Elder Affairs certifies assisted
living residences, and offers the Assisted Living Ombudsman
Program to provide advocacy, information and complaint
resolution to consumers. The Department of Health and
Human Services, Health Facilities Administration oversees
Assisted Living Licensure. www.dhhs.nh.gov/oos/bhfa,
603.271.9499.
In New Hampshire, the Department of Health and Human
Services, Health Facilities Administration oversees Assisted
Living Licensure and offers the Longterm Care Ombudsman
program as a resource.
(continued next page)
PAGE 80 ALZHEIMER’S ASSOCIATION
Assisted
Living
(continued from previous page)
For more information
Contact the Massachusetts Assisted Living Facilities Association
(MASS ALFA) at 781-622-5999 or at www.massalfa.org.
In Massachusetts, for information about GAFC or the
Ombudsman program, contact 800-AGE-INFO
(1-800-243-4636) or visit their website at
www.800ageinfo.com.
Contact the New Hampshire Department of Health and
Human Services, Health Facilities Administration at 603-271-
9499 or at www.dhhs.nh.gov/oos./bhfa.
To reach the New Hampshire office of the Long-Term Care
Ombudsman contact 603.271.4375 or 800.442.5640 or
www.dhhs.state.nh.us.
For information on Alzheimer-friendly assisted living
residences, contact the Alzheimer’s Association’s
24/7 Helpline at 800.272.3900 or at www.alz.org/manh.
PAGE 81
Benefits
Programs
There are a number of different benefit programs that can
provide income support or financial assistance for medical
care. These programs have varying eligibility requirements
and application processes. Contact the phone numbers and
websites listed below for more information on specific benefit
programs.
In New Hampshire, contact Service Link for resource
information at 866-634-9412.
In Massachusetts, contact 800-AGE-INFO (1-800-243-4636)
or visit their website at www.800ageinfo.com.
●�
Medicare
1-800-MEDICARE (1-800-633-4227)
www.medicare.gov
●�
Social Security
1-800-772-1213
www.ssa.gov
Can also provide information about Social Security
Disability benefits and Supplemental Security Income (SSI)
●�
Medicaid (also called MassHealth in Massachusetts)
1-800-841-2900 Customer Service Center
1-888-665-9993 MassHealth Enrollment Center
www.mass.gov/elders
Can also assist with GAFC (see Assisted Living)
●�
Veterans
Massachusetts Department of Veterans’ Services
617-210-5480
www.mass.gov/veterans
U.S. Department of Veterans Affairs
1-800-827-1000 Benefits questions
1-855-260-3274 National Caregiver Support Line
www.va.gov
Bill Paying
Services
These services typically provide basic money management tasks
such as sorting mail, paying bills, and balancing checkbooks.
They generally do not offer legal or financial planning.
Payment for these services is typically private pay, although
a no-or-low-fee service is available through the local ASAP
for those who qualify. Contact your local ASAP about their
Money Management Program or for private pay referrals.
APPENDIX 2
PAGE 82 ALZHEIMER’S ASSOCIATION
Care
Consultation
Alzheimer’s
Association,
MA/NH
Chapter
The Alzheimer’s Association, MA/NH Chapter offers an
in-depth, personalized service for individuals and families
who are facing the many decisions and challenges associated
with Alzheimer’s disease and related dementias. The goal
is for each family to develop a better understanding of the
disease, make a plan to secure needed care, and develop
strategies for the best possible symptom management and
communication. Consultations are provided in person and by
phone. Consultants are also available to answer questions by
email. This is a free service. Contact us at our 24/7 Helpline at
800.272.3900 or at www.alz.org/MANH.
Case
Management
/ Care
Management
Many agencies provide case management (sometimes called
care management) services which help families access and
coordinate services. Some case management services are
provided at little or no charge through your local ASAP for
those who qualify. Case management can also be purchased
on a sliding scale or fee-for-service basis from many agencies
and individual practitioners. For information and referrals,
contact your local ASAP or the Alzheimer’s Association’s
24/7 Helpline at 800.272.3900 or at www.alz.org/MANH.
Councils on
Aging (COA)
and Senior
Centers
The mission of these municipally appointed agencies is to link
older adults with community resources by developing and/
or coordinating services, community education and advocacy.
The services and programs offered vary by community. Some
cities and towns have a senior center in addition to a COA.
To find your local COA/ Senior Center in Massachusetts,
contact 800-AGE-INFO (1-800-243-4636) or visit their website
at www.800ageinfo.com, or contact your local ASAP. In New
Hampshire, contact ServiceLink at (866) 634-9412 or
www.servicelink.org.
PAGE 83
Crisis
Intervention
Behavioral health emergency services, crisis assessment,
intervention and stabilization services, available 24 hours
per day/7 days per week/365 days per year. To find the
Emergency Service Program (ESP) that serves your area call
1-877-382-1609 or visit www.masspartnership.com.
ASAPs also operate Adult Protective Services program.
Contact your local ASAP if you believe an older adult is at
risk for abuse or neglect. You can also call the Elder Abuse
Hotline in Massachusetts at 1-800-922-2275.
In New Hampshire, contact the Bureau of Elderly & Adult
Services at 603-271-9203.
Diagnostic
Centers
Provide comprehensive assessments needed to determine
what is causing the changes you are observing, as well as a
care and treatment plan for the person. For a list of diagnostic
centers in your area, contact the Alzheimer’s Association’s
24/7 Helpline at 800.272.3900 or at www.alz.org/MANH.
Driver
Evaluation
Programs
Evaluate the skills of an individual relative to their ability
to continue or resume driving. A good program includes
provisions for counseling and periodic re-testing, and
includes a road test along with other evaluation measures.
Insurance often pays for part of the testing with the
remainder of the cost paid out-of-pocket. Contact the
Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 or
at www.alz.org/MANH for more information and referrals to
programs in your area.
Durable
Medical
Equipment
Durable equipment (wheelchairs, commodes, canes,
crutches, walkers, hospital beds, etc.) is available from a
variety of sources. Insurance pays for some equipment; the
ASAP may be able to help with the cost of some equipment
for people who qualify; and the COA may have an equipment
“loan” program. Call your local ASAP or COA for more
information.
APPENDIX 2
PAGE 84 ALZHEIMER’S ASSOCIATION
Friends and
Family
Family and friends are often overlooked as resources because
a caregiver doesn’t want to burden them. In most cases,
family and friends do want to help but don’t know how
and believe that if they were needed, they would be asked.
Caregivers need all the help they can get and need to learn to
ask for and accept help. Contact the Alzheimer’s Association’s
24/7 Helpline at 800.272.3900 or at www.alz.org/MANH for
tips on asking for help.
Hospice Care
and Palliative
Care
Hospice care provides support and care in the home (and in
institutional settings) to terminally ill individuals and their
families. Palliative care extends the principles of hospice care
to individuals that could benefit from receiving this type of
care earlier in their illness or disease process. Palliative care
often segues into hospice care as the illness progresses.
The range of services provided varies from agency to agency
and insurance typically covers much, but not always all, of the
services available through hospice and palliative care.
For more information and referrals, contact the Alzheimer’s
Association’s 24/7 Helpline at 800.272.3900 or at
www.alz.org/MANH, or the Hospice and Palliative Care
Federation of Massachusetts at 800-962-2973 or at
www.hospicefed.org, and the Hospice and Palliative Care
Organization of New Hampshire at 603-415-4298.
In-Home Care
Is a generic term that includes a wide variety of services such
as nurses (“visiting nurses”); aides to help with personal
care or provide companionship and supervision; grocery
and meal delivery services (“meals on wheels”); or help
with housework and laundry. Some of these services are
covered by insurance or are subsidized by the state, others
are paid for privately. There are varying eligibility guidelines
for insurance-covered or state-subsidized services. Contact
your local ASAP for information about and referrals to private
pay services and to find out if you and/or the person with
Alzheimer’s qualify for state-subsidized services.
PAGE 85
Legal Services
and Financial
Planning
Legal aid clinics provide free legal advice for older adults.
They are geared to lower-income older adults and generally
focus on housing problems, benefits eligibility (including
Medicare and Medicaid), and nursing home issues. For more
information or to find the legal services office in your area, call
the Massachusetts Senior Legal Helpline at 1-866-778-0939 or
the New Hampshire Senior Citizens Law Project Advice Line
at 888-353-9944 or 603-624-6000 or at SCLP@nhla.org.
Other legal services which caregivers may need include
preparation of documents such as health care proxies,
durable powers of attorney, and wills. These documents
must be executed while the person is mentally competent.
If the person is not competent, the family may have to go to
court to seek a guardianship. Families should also consult an
attorney or financial planner to avoid financial hardship for
the person’s spouse. These services are generally private pay.
For assistance locating a knowledgeable elder law
attorney and/or financial planners, contact the Alzheimer’s
Association’s 24/7 Helpline at 800.272.3900 or at
www.alz.org/MANH.
APPENDIX 2
PAGE 86 ALZHEIMER’S ASSOCIATION
Nursing
Homes
(Skilled
Nursing
Facilities)
Nursing homes provide 24-hour skilled nursing care to
people with qualifying medical needs. Some nursing homes
have Alzheimer’s Special Care Units that are specifically
designed to meet the needs of individuals with Alzheimer’s
disease or related dementias. For information about these
facilities, contact the Alzheimer’s Association’s 24/7 Helpline
at 800.272.3900 or at www.alz.org/MANH. For information
on nursing homes contact the Massachusetts Senior Care
Association at 1-800-CARE-FOR (1-800-227-3367) or at
www.massseniorcare.org.
The Massachusetts Office of Elder Affairs oversees the
Long Term Care Ombudsman Program which advocates
for residents of nursing homes. Ombudsmen offer a way
for residents and their loved ones to voice their complaints
and have their concerns addressed so that residents can
live their lives with dignity and respect. To connect with
the Ombudsman serving your area, contact 800-AGE-INFO
(1-800-243-4636) or visit www.800ageinfo.com, or contact
your local ASAP.
In New Hampshire, the Office of Long-Term Care Ombudsman
receives, investigates, and resolves complaints or problems
concerning residents of long-term care facilities.
Contact the Office of the Long Term Care Ombudsman at
(800) 442-5640 in NH or (603) 271-4375 outside of NH, or at
www.dhhs.state.nh.us.
Religious
Affiliated
Service
Agencies
Groups such as Jewish Family Services, Catholic Social
Services, and Pastoral Counseling Services serve people of all
religions and offer a variety of support and in-home services.
Your place of worship may also be a source of information and
referral or may have other programs that could be of help.
APPENDIX 2
PAGE 87
Respite Care
(Relief for
the Family
Caregiver)
The purpose of respite care is to temporarily relieve those
caring for older adults who require 24-hour care. Respite care
may be provided in the home, through an adult day program,
or at a nursing home or assisted living. Contact your local
ASAP for information and referrals about these services or to
find out if you qualify for respite services through the ASAP
or Service Link.
Safe Return
(program for
people who
may wander)
MedicAlert
®
+ Alzheimer’s Association Safe Return
®
program
is a 24-hour nationwide emergency response service. If a
person with Alzheimer’s wanders away from home or a
facility, or is found in the community lost and confused, the
emergency response line can be called at 1-800-625-3780.
The initial fee includes ID jewelry with information specific
to the person with Alzheimer’s and a checklist of steps for a
safe return, in addition to the 24-hour emergency response
service. There is an annual fee after the first year. Assistance
paying for the fee is available for those who qualify from
the Alzheimer’s Association MA/NH Chapter or from your
local ASAP. Contact your local ASAP or the Alzheimer’s
Association’s 24/7 Helpline at 800.272.3900 or at
www.alz.org/MANH.
Support
Groups and
Educational
Programs
The Alzheimer’s Association offers many support groups
and educational programs for persons with Alzheimer’s and
their family members and caregivers. Other agencies, such
as COAs and ASAPs offer this type of support as well. For a
complete list of groups and programs in your area contact
the Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 or
at www.alz.org/MANH, or contact your local COA, ASAP, or
Service Link.
Transportation
Some older adults qualify for free or low cost transportation
for medically necessary trips. Contact your local COA or
ASAP or Service Link for information about and referrals to
transportation services in your area.
alz.org/MANH
facebook.com/alzheimersMANH
twitter.com/alzheimersMANH
800.272.3900 24/7 Helpline
alz.org/MANH
facebook.com/alzheimersMANH
twitter.com/alzheimersMANH
800.272.3900 24/7 Helpline
