covenant alzheimer`s services patient and family handbook

Transcription

COVENANT ALZHEIMER’S SERVICES
PATIENT AND FAMILY
HANDBOOK
This Manual has been prepared for use in conjunction with Covenant Alzheimer’s
Services. It contains a comprehensive collection of materials for all aspects of Covenant
Alzheimer’s Services. These materials are only for use by authorized representatives of
Covenant Alzheimer’s Services. Unauthorized use by others is prohibited. None of the
materials contained in this Manual may be used, reproduced, photocopied, transmitted,
distributed or modified without prior written permission from Covenant Alzheimer’s
Services, 5041 North 12th Avenue, Pensacola, Florida 32504.
© 2014 Covenant Alzheimer’s Services, Inc.
TABLE OF CONTENTS
SECTION I: COVENANT ALZHEIMER’S SERVICES
Introductory Letter to Caregivers ...........................................................................1
Covenant Alzheimer’s Services Programs and Services.......................................3
What Are Support Groups? Why Are They Important? .........................................5
The History of Covenant Alzheimer’s Services .....................................................6
Preface ..................................................................................................................7
SECTION II: UNDERSTANDING ALZHEIMER’S DISEASE
Overview .............................................................................................................11
The Effects of Alzheimer’s Disease on the Brain ................................................12
Video of Life in Reverse: A Way of Understanding the Disease ..........................14
Important Facts About Alzheimer’s Disease........................................................17
Common Myths About Alzheimer’s Disease .......................................................18
SECTION III: SYMPTOMS, TREATMENT, PROGNOSIS
A. Symptoms
Ten Warning Signs of Alzheimer’s Disease ........................................................23
Symptoms of Alzheimer’s Disease ......................................................................24
Other Types of Dementia ....................................................................................26
B. Diagnosis and Treatment
Alzheimer’s Disease Description and Diagnosis .................................................28
How to Talk to the Patient About the Diagnosis ..................................................29
Depression and Alzheimer’s ................................................................................30
Symptoms of Depression ....................................................................................31
C. Disease Progression and Prognosis
Clinical Characteristics ........................................................................................32
Stages of Progression .........................................................................................34
Alzheimer’s Disease: A Journey’s End ................................................................35
End-of-Life Issues for Alzheimer’s Patients .........................................................36
Hospice and the Alzheimer’s Patient ...................................................................37
SECTION IV: CAREGIVING
How to Cope as an Adult Child of an Alzheimer’s Patient ...................................41
Advice for the Caregiver of an Alzheimer’s Patient .............................................43
How to Handle Criticism of Your Caregiving .......................................................44
Your Role as Caregiver .......................................................................................45
Caregiver Burnout ...............................................................................................46
Self-Care for the Caregiver .................................................................................47
Good Body Mechanics ........................................................................................48
Understanding Grief ............................................................................................49
Shifting Family Dynamics ....................................................................................50
SECTION V: BEHAVIOR MANAGEMENT
Interacting with People Who Have Alzheimer’s Disease and Dementia ..............53
Hostility, Aggression and Physical Violence ........................................................54
Delusions and Hallucinations ..............................................................................55
Rummaging, Hiding, Hoarding and Repetitive Behaviors....................................57
Driving and Dementia ..........................................................................................58
Visiting the Doctor ...............................................................................................59
Communication ...................................................................................................60
Environment and Routine ....................................................................................61
Bathing ................................................................................................................62
Dressing ..............................................................................................................63
Eating and Feeding .............................................................................................64
Wandering ...........................................................................................................65
SECTION VI: MEDICATIONS
Behavioral Medications .......................................................................................69
Alzheimer’s Medications......................................................................................71
Alzheimer’s Medication Treatment Chart ............................................................72
Over-the-Counter Medications ............................................................................73
Sleeping Medications ..........................................................................................74
SECTION VII: LEGAL ISSUES – FINAL WISHES
Legal Issues by John B. Carr, Attorney at Law ...................................................77
Elder Law in Alabama by Amanda C. Hines, Esq. ..............................................82
Alzheimer’s Disease Checklist ............................................................................85
SECTION VIII: LIVING ENVIRONMENT
Moving Your Loved One into Your Home ............................................................89
Creating a Safe Environment ..............................................................................91
Understanding the Types of Adult Living Environments ......................................93
Choosing the Best Facility for Your Loved One ...................................................95
Guide to Interviewing and Inspecting a Facility ...................................................96
Beyond Placement: Moving Forward...................................................................99
SECTION IX: CONTRIBUTING TO OUR MISSION
Ways to Support Covenant Alzheimer’s Services .............................................103
Volunteering with Covenant Alzheimer’s Services ............................................104
Covenant Alzheimer’s Services Wish List .........................................................105
No caregiver should ever feel alone.
Covenant Alzheimer’s Services is here for you.
Section I:
Covenant Alzheimer’s Services
Dear Caregiver,
At Covenant Alzheimer’s Services, we work every day to understand a disease that is
hard to understand – so we know that caring for a loved one with dementia can be
challenging. That is why we are happy to share this caregiver handbook with you.
One of the best things you can do as a caregiver is take the steps to become
knowledgeable. Let’s take the first step together.
Within these pages, you will find a wealth of information on Alzheimer’s disease and
caring for your loved one. Providing care to a person with any type of dementia is not
easy, but understanding what is happening and having an idea of how to handle
associated behaviors will help.
We encourage you to join one of our support groups, attend our educational seminars
and take the time to learn about services and programs available to you and your
family. If you have any questions as you proceed through your caregiving journey,
please ask.
You may feel like you’re alone – but we are here for you.
Sincerely,
Covenant Alzheimer’s Services Staff and Volunteers
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COVENANT ALZHEIMER’S SERVICES
PROGRAMS AND SERVICES
Support Groups
Most caregivers find comfort in learning there are others just like them, taking on similar
circumstances and discovering ways to cope. That’s why we strongly encourage all
Alzheimer’s caregivers to attend one of our many support groups. We offer monthly
meetings for families affected by Alzheimer’s disease in Escambia, Santa Rosa,
Okaloosa and Walton Counties in Florida, as well as Escambia and Baldwin Counties in
Alabama. If respite care is needed for a caregiver to attend, just call the Covenant
Alzheimer’s office at (850) 478-7790. Current schedules are available online at
choosecovenant.org/alzheimers or by phone call to our friendly staff.
Emotional Support
Our staff and volunteers provide emotional support for caregivers of Alzheimer’s
patients – who may be a spouse, adult child or even a friend. Sometimes, you may
need a listening ear or guidance in understanding the stages and behaviors associated
with Alzheimer’s disease. We can help.
Counseling and Referral Services
Counseling and referral services are a major function of Covenant Alzheimer’s. We
receive daily phone calls and visits from people seeking help with placement, financial or
legal assistance, medical information and support. Individual and group counseling are
available upon request.
Education and Workshops
Covenant Alzheimer’s realizes the need to educate the community, caregivers and
health care professionals. We spread awareness and knowledge through workshops,
seminars and speaking engagements. Any group may schedule a speaker by calling the
Covenant Alzheimer’s office at (850) 478-7790.
Project Lifesaver
More than 60% of Alzheimer’s patients will wander
at some point in their illness. They become lost and
confused, and can be at risk for injury or even death
if not found quickly. Project Lifesaver is a program
that helps keep wandering patients safe. Held inside
a case worn like a watch, a unique frequency sends
a signal to quickly locate a lost patient. (A low
monthly service fee is based upon income and the
number of people in the home.) The program is
available in Florida’s Escambia, Santa Rosa,
Okaloosa and Walton Counties. Qualifying patients must be at risk for wandering, but
may reside in their own home or a facility.
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The Caregiver Handbook
The handbook you are reading right now is one of our best educational tools. If you
know of someone else who might be in need of this book, please call our office at (850)
478-7790 or email us at [email protected].
Memory Screens
Memory screens are a brief and confidential means to assess memory and
cognitive functioning. Covenant Alzheimer’s offers screenings by appointment, and
results are immediate.
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WHAT ARE SUPPORT GROUPS?
WHY ARE THEY IMPORTANT?
Support groups are a means for caregivers to exchange ideas, gather information and
discuss concerns with others who are dealing with or have dealt with the same
problems. Our support groups become a vital instrument to the caregiver in dealing with
the stress of Alzheimer’s disease.
Covenant Alzheimer’s Services was founded more than 30 years ago with the mission
of coordinating support groups within Escambia County. Today, we remain committed
to this cause, extending our services to Santa Rosa, Walton and Okaloosa Counties in
Florida, as well as Escambia and Baldwin Counties in Alabama. All of our support
groups are facilitated by trained Covenant staff or volunteers who have had additional
education in Alzheimer’s disease and local resources.
If you are not already involved in a Covenant Alzheimer’s Support Group, we welcome
you to join us. Support groups are free of charge and last about an hour; no
reservations are needed. If you would like to attend but have no one to stay with your
loved one, with advance notice, Covenant Alzheimer’s Services can arrange for
respite care. Respite is sometimes available on-site.
Below is an excerpt of a letter from one caregiver to her support group:
“Dear Family,
I will remember the first day that I met you all. It was in August some time ago, my
husband had been admitted to the facility. I was one reckless nerve. I was filled
with grief, anger, guilt, and denial. I was completely lost to this world; couldn’t
sleep, couldn’t read, couldn’t eat, couldn’t listen, couldn’t anything - I had stopped
living. My nerves were shot and I was so angry with him for getting Alzheimer’s.
The pain in my heart and soul were unbearable. What to do?
I really didn’t want to, but the social worker at the facility suggested I attend an
Alzheimer’s meeting. Bewildered, I entered the meeting room, the room was full of
strangers, and someone asked me my name. I told them and then proceeded
to throw myself across one of the tables. I cried my heart out, sobbing, emptying
my very soul. Gentle hands rubbed my back, gentle arms hugged me, gentle voices
spoke compassion to me- I was no longer lost. My vision was of a swimming pool
filled with people waiting for me to jump into their arms as they caught me and held
me with love.
My vision was all of you dear, dear friends who saved me with your listening ears
and your love. Attend the monthly meeting and keep up with your strong support
group. You never know when some suffering soul may fall into your loving arms.
You are all very dear to me.”
We hope to see you at your local support group meeting. We’re here for you.
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THE HISTORY OF COVENANT ALZHEIMER’S SERVICES
Covenant Alzheimer’s Services was founded to support caregivers of Alzheimer’s
patients. In November 1979, Dr. Wallace Mayo was diagnosed with Alzheimer’s
disease. His wife, Mrs. Jean K. Mayo, found there was no support group available for
Alzheimer’s caregivers. At that time, the only support group in the area was a cancer
support group. By the spring of 1981, Mrs. Mayo was in need of more support and had
talked with several people who were involved with Alzheimer’s patients. Her brother
encouraged her to start a support group, so she enlisted the local Mental Health
Association to help take phone calls and mail reminders for meetings. On August 19,
1981, a full-page article in the Pensacola News Journal reported stories of local men
who had recently died of Alzheimer’s but did not give their names. Another article
included mention of the first meeting of the Alzheimer’s support group at the local
downtown library the following day. The next morning, Mrs. Mayo was surprised to find
64 people at the very first Alzheimer’s Support Group meeting.
Over the years, the group continued to meet at the Mental Health Association and
collaborated to find necessary resources for themselves and the community. In 1996,
the group became incorporated and changed its name from The Alzheimer’s Support
Group to Alzheimer’s Family Services. In 2006, another great relationship was formed
when Alzheimer’s Family Services became an affiliate of Covenant Hospice. In 2014,
AFS became a member of the Covenant Care family and adopted a new name,
Covenant Alzheimer’s Services.
The Mission of Covenant Alzheimer’s Services is to extend support to the caregivers of
patients with Alzheimer’s disease and the patients themselves; educate and train the lay
and professional caregivers to Alzheimer’s patients both in the home environment and
care facilities; provide current and updated knowledge and treatment information to the
family of the Alzheimer’s patient; and to provide other services commensurate with the
capabilities of the staff with the knowledge and approval of the Boards of Directors.
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PREFACE
Covenant Alzheimer’s Services, formerly known as Alzheimer’s Family Services, is a
private, not-for-profit organization recognized under Internal Revenue Services (IRS)
Code 501(c)(3). Covenant Alzheimer’s Services currently serves Escambia, Santa Rosa,
Okaloosa and Walton Counties in Florida, as well as Escambia and Baldwin Counties in
Alabama.
Covenant Alzheimer’s Services provides all of its services through private donations and
grants. We currently do not receive any state or local funding. All funds donated are tax
deductible and remain in the local area.
This handbook has been compiled to offer a better understanding of Alzheimer’s
disease and dementias and to serve as a source of information to caregivers. The
original printing was completed in October 1998 with subsequent revisions in January
2000, November 2001, August 2002, June 2003, February 2004, January 2005, August
2006, 2008 and 2011, September 2014 and October 2014. Please contact the
Covenant Alzheimer’s office to acquire additional copies of this handbook.
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Section II: Understanding
Alzheimer's Disease
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OVERVIEW
Alzheimer’s disease is a progressive physical disorder of the brain that worsens over
time. The symptoms may begin with forgetfulness, losing important things and
problems remembering recent events or information that was recently learned. As the
disease progresses, mental capacities are lost, leading to more severe confusion –
such as getting lost in familiar places or forgetting to turn off the stove. At some point,
patients require 24-hour supervision for their own safety. After anywhere from two to
twenty years, Alzheimer’s patients become bed-ridden and will usually die due to a
complication such as pneumonia. There is no known cure. While the outlook is not
good, there are ways in which the caregiver can work to make things better, one day at
a time. This book is designed to help you with that process.
HISTORY AND STATISTICS
Alois Alzheimer, the German psychologist and neurophysiologist for whom the disease
is named, discovered the condition in one of his patients. Credited as the first doctor to
recognize the disorder, he described it in a lecture in 1906.
According to the Alzheimer’s Association …
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Age is the number one risk factor.
Every 67 seconds, someone in the United States develops Alzheimer’s.
More than 5 million Americans suffer from Alzheimer’s disease.
Alzheimer’s disease is the sixth leading cause of death in the United States and
the fifth leading cause of death for people over the age of 65.
In 2013, 15.5 million caregivers provided an estimated 17.7 billion hours of
unpaid care valued at more than $220 billion.
The total cost of Alzheimer’s to the nation is estimated to be more than $214
billion annually.
These numbers indicate the disease is not only a problem for individual families
involved, it is a problem for the whole nation. The greatest cost falls on the individual
caregivers who have the daily burden of care and grief, as well as the majority of the
financial costs. Covenant Alzheimer’s Services was created to help with information
and support for these caregivers.
Alzheimer’s Association, (2014). “Alzheimer’s Disease Facts and Figures.” Retrieved
November 7, 2014 from http://www.alz.org/alzheimers_disease_facts_and_figures.asp
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THE EFFECTS OF ALZHEIMER’S DISEASE ON THE BRAIN
The effects of Alzheimer’s disease on the brain are visible, both when looking at the brain
as a whole and looking at it under the microscope. These visible changes directly relate
to the mental losses of the patient.
If you were to look at the normal brain and the brain of an Alzheimer’s patient, the first
thing you would notice is the Alzheimer’s brain is significantly smaller, and the fissures
– natural divisions or grooves in an organ such as the brain – are much wider. There is
a clear loss of brain substance. On the microscopic level, there are fewer brain cells, or
neurons, and there are collections of protein and tangled fibers in the Alzheimer’s
patient’s brain that are not present in the normal brain.
The Normal Brain
The brain is a three-pound organ protected by its placement in the bony skull. It has a
consistency similar to firm jelly. It is divided into three parts. The cerebrum is the
largest part and is involved in memory, planning and movement control. The
cerebellum is the more wrinkled portion that sits at the base of the brain in the back of
the head. It controls coordination and balance. The brain stem connects the brain to
the spinal cord and controls automatic functions such as breathing and heartbeat.
The exterior of the cerebrum is called the cortex, or gray matter. This is the area of the
brain that functions to interpret sensations from the outer world, including sights,
smells, sounds and even words. It is where memories are stored and where plans are
made. It is also the area where movements are controlled.
The interior of the brain is made up of brain cells called neurons. A normal adult brain
has about 100 billion neurons, each connecting with many others in many places.
There are about 100 trillion of these connections, called synapses. The signals carried
by synapses make up our ability to form thoughts and maintain memories.
Neurons communicate with each other by means of tiny electrical charges, which travel
along the neuron to the synapses. Here, the neuron releases a tiny chemical called a
neurotransmitter, which carries the signal to the next neuron. Alzheimer’s disease
destroys neurons and also interferes with the neurotransmitters at the synapses.
The Alzheimer’s Brain
When Alzheimer’s disease affects a brain, the cortex shrinks. It becomes thinner,
interfering with the ability to remember or to plan. The interior of the brain, called white
matter, also shrinks, leaving larger areas of spaces around the brain within the skull, as
well as within brain openings called ventricles. From the outside, you notice a
deepening and widening of the fissures; from the inside, a widening of the ventricles.
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Under the microscope at time of autopsy, scientists can see that there are fewer brain
cells, and the ones that remain do not look normal. They can also see plaques of
protein fragments around the nerve cells. The dead and dying cells degenerate into
tangles of a different protein. These are the visible effects of Alzheimer’s disease on
the brain.
In a normal brain, the proteins form a system of tubes within the cell to transport food
and other materials necessary to the health of the cells. A protein called tau is key in
this normal process. With the attack of Alzheimer’s disease, tau proteins become
tangled, interfering and preventing transport instead of facilitating it. As a consequence,
the cells die.
Alzheimer’s Progression
The progression of Alzheimer’s disease follows a fairly predictable pattern. The length
of time it takes is variable from two to twenty years after diagnosis, with an average
time of about eight years.
In the early stages, the abilities to learn new material and to make and follow through
with plans are affected. Oftentimes, family members and patients believe these deficits
may be attributed to normal aging.
In the mild to moderate stages of Alzheimer’s disease, the destruction extends to the
areas involving speech and the ability to sense where your body is in relation to your
surroundings. At this point, people with Alzheimer’s may need help with some activities
of daily living. It is usually obvious to family members and close friends that the patient
is experiencing some type of memory problem; however, the patient may insist that
nothing is wrong with them.
In severe Alzheimer’s disease, the entire cortex is involved. The brain is shrunken, and
individuals lose all ability to communicate or recognize others. The Alzheimer’s patient
will now need extensive help with activities of daily living.
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VIDEO OF LIFE IN REVERSE:
A WAY OF UNDERSTANDING THE DISEASE
A member of a support group once stated, “I am seeing my husband lose the exact
same skills my son is developing.” Her husband was an early onset patient in his 50s;
their son was two years old.
Watching a video of life in reverse is an accurate portrayal of the functional losses
experienced by a person with Alzheimer’s. The skills we amass over a lifetime are
eroded by the disease. In other words, if you learned it, the disease can unravel it.
Developmental psychologists, neurologists and Alzheimer’s researchers have carefully
examined the patterns of the loss Alzheimer’s patients experience and compared the
changes to the development of skills and abilities in the same order that infants,
children and adolescents acquire skills. Researchers have named this process of
unlearning “retrogenesis”.
Although no two patients are the same, and every patient’s rate of progression is
unique to them, beginning to think about the disease in this way can provide us with
some valuable insights on how to care for our loved one. This is a progressive illness;
patients progress from needing supervision to needing custodial care to needing
nursing care – just like an infant, child and teenager, only in reverse. An article in the
American Journal of Alzheimer’s Disease and Other Dementias by Barry Reisberg,
M.D., describes the developmental pattern for normal children and the functional
decline for Alzheimer’s patients.
ADOLESENCE is defined as 13 to 19 years of age. At this age, a teenager learns
responsibility and how to hold a simple job. In the earliest stages of Alzheimer’s
disease, sometimes even before a diagnosis is made, a dementia patient will have
increasing difficulty holding down a job – even if it is a job they have held for a long
time. Their concentration and ability to complete even a routine task gradually
diminishes.
LATE CHILDHOOD is defined as 8 to 12 years of age. Among the many skills a child
should be mastering is the ability to handle simple finances. By the time most patients
and their families are seeking a diagnosis, the patient is having difficulty paying bills
and keeping the checkbook straight.
MIDDLE CHILDHOOD is defined as 5 to 7 years of age. During this developmental
period, a child should be learning how to select proper clothing, which is often the first
difficulty Alzheimer’s patients have. We also ask ourselves if a child this age should be
left alone. Patients at this stage have moderate dementia.
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EARLY CHILDHOOD is defined as 3 to 5 years of age, when children are just
beginning to exert their independence. They learn to put on their clothes unaided,
bathe and toilet unaided, and control their bladder and bowels. These are skills that a
moderately severe patient loses.
INFANCY is defined as 15 months and younger, when babies learn to speak, walk, sit
up and smile. Late stage patients lose these skills.
After mapping out the disease course this way, Dr. Reisberg and his team of experts
also reviewed what they call “basic human needs and desires”. These are things we
take for granted when raising our children, but sadly overlook when caring for a loved
one with dementia.
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All human beings avoid trauma and humiliation. Alzheimer’s patients may
have dementia, but they are not dumb. They avoid situations that make them
appear “stupid”. They resent being questioned, and hate it when we say, “Don’t
you remember that?” They do whatever they can to avoid humiliation, even
accusing their caregiver of stealing when they have lost or misplaced an item.
Alzheimer’s patients rarely admit they are wrong.
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All human beings seek a sense of accomplishment. Alzheimer’s patients
resent that they can no longer drive, manage the checkbook, take a shower
independently or cook a meal. They will insist they are capable. As caregivers,
we have to determine what they can still do and help our loved ones continue to
feel productive.
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All human beings are social – seeking praise, acceptance and love. When a
baby cries, we comfort the child by holding him, singing or rocking him to sleep.
Alzheimer’s patients need love, communication, touch and human contact, too.
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All human beings have the capacity to learn, remember and think. We
should never speak about a patient in front of them as though they don’t
understand. Patients may lose the ability to remember the faces of a
situation, but they can recall the emotions the situation caused them to feel.
For example, if a patient feels humiliated during their bath, they will begin to
resist bath time. At some point patients will forget how to bathe, but may
insist they don’t need any help. You can reorient and try to retrain them by
giving them step-by-step instructions, as you would a child.
In order to care for a loved one with Alzheimer’s, we have to understand that their
human needs and feelings remain intact, even as their memories and abilities are
being erased. The disease can distort their feelings, causing patients who have
delusions to think the caregiver is out to hurt or steal from them. Our job is to
respond to these feelings – not to react by denying the accusations – but rather to
help find a way to make the patient feel more comfortable and secure.
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According to Dr. Reisberg, retrogenesis is a way of describing the functional
abilities of Alzheimer’s patients. Children develop skills in a certain order, which
Alzheimer’s patients lose in reverse order. By understanding that the growing
disabilities of the patient can be related to the development of skills in children, we
can match the type of care we give to the developmental age of the patient.
Below are some examples from Dr. Reisberg:
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The amount of care required by an Alzheimer’s patient mirrors the
amount of supervision required by a child at a corresponding
developmental age. At what age can a child drive? Cook? Take
medicine without supervision?
The kinds of activities enjoyed by a patient mirror the kinds of
activities enjoyed by a child at a corresponding developmental age.
Patients may find some activities humiliating, just as children may complain
that some activities are “babyish”.
Language changes in Alzheimer’s patients mirror the language
acquisition of infants and children. As infants learn to talk, their speech
develops from babbling, to single words, to simple sentences, to the
complex language of an adolescent or adult – a pattern that is reversed for
dementia patients.
Our expectations of children increase as the child grows, while our
expectations of Alzheimer’s patients diminish over time. Of course, we
recognize there are distinctive differences between Alzheimer’s patients and
children. The former are physically larger and stronger than the latter, and
may be able to draw upon previously mastered knowledge or skills.
When considering Alzheimer’s disease as a pattern of unlearning skills that
have been acquired over a lifetime, we need to pay special attention to how
vulnerable and fragile Alzheimer’s patients can be. They deserve dignity and
respect for all the many wonderful things they have done and seen during
their lifetime. They also need our protection and love as we seek to give them
the best quality of life possible.
Reisberg, Barry et.al, (2002) American Journal of Alzheimer’s Disease and Other
Dementias, 8, 202.
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IMPORTANT FACTS ABOUT ALZHEIMER’S DISEASE
When caring for a person with Alzheimer’s disease, please remember …
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Alzheimer’s disease is destroying the patient’s brain.
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Alzheimer’s patients have trouble remembering.
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Alzheimer’s patients may be unable to reason.
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Alzheimer’s patients will react to your emotions.
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Alzheimer’s patients have trouble understanding words.
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Alzheimer’s patients forget how to do things, such as dress or shave.
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Alzheimer’s patients may forget your face.
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Alzheimer’s patients can have false ideas.
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Alzheimer’s patients may see and hear things that are not there.
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Alzheimer’s patients may not be able to control anger.
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Alzheimer’s patients may get frustrated easily.
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Alzheimer’s patients may feel frightened and lonely.
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Alzheimer’s patients are human and deserve our attention and respect.
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Alzheimer’s patients love their families.
When you keep these considerations in mind, it may be easier to have patience with
your Alzheimer’s patient.
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COMMON MISCONCEPTIONS ABOUT ALZHEIMER’S DISEASE
A lack of accurate information about Alzheimer’s disease leads to unfounded myths and
fears. The following are the most common myths, along with facts to dispute them.
MYTH: Alzheimer’s symptoms are natural signs of old age.
FACT: A number of conditions including normal aging may lead to mild forgetfulness or
memory loss. While these symptoms are similar to early signs of Alzheimer’s, they are
milder and do not get worse rapidly. Alzheimer’s symptoms progress steadily and are
much more severe. No one should assume that forgetfulness and memory loss are
inevitable parts of aging. A thorough medical exam may uncover a different problem,
which might be corrected.
MYTH: Senility and Alzheimer’s disease are the same thing.
FACT: Senility is a general term describing a number of different effects of aging, some
of which are unavoidable. Frequently the word “senility” is used to indicate dementia,
which is a loss of mental ability. Although there are many causes of dementia, some of
which are curable, Alzheimer’s is most common. This is the source of the confusion
about the difference between Alzheimer’s and senility. Alzheimer’s is a specific brain
disorder that can occur when the patient is relatively young. There are patients who are
in their 40s or 50s, although most are much older. The symptoms of Alzheimer’s
generally are much more severe and progress relatively rapidly, compared to other
forms of dementia.
MYTH: There is no hope for an Alzheimer’s patient.
FACT: While there is no cure, there are many ways in which the care of Alzheimer’s
patients can keep them more active and content. The key is to keep them moving and
increase their social interactions. Proper medical attention will minimize symptoms.
MYTH: Alzheimer’s disease is a mental illness.
FACT: In the sense that Alzheimer’s affects the brain first, it does have mental
symptoms. But because it deteriorates the whole body, it is not classified as a mental
illness. While it begins with memory problems or personality changes, it also involves
the person’s ability to perform physical tasks such as walking, talking, eating and
toileting.
MYTH: Caretaking should be the sole responsibility of family.
FACT: The patient will benefit from being with loved ones in familiar surroundings.
However, as the disease progresses, outside help such as adult day care or respite
care can be beneficial. This provides the patient enjoyable social stimulation, while
giving the caregiver some rejuvenating quiet time. Covenant Alzheimer’s Services
provides support groups for caregivers to share techniques and resources in an
organized setting.
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MYTH: All relatives of the patient will eventually get Alzheimer’s.
FACT: There are two kinds of Alzheimer’s disease. The rare kind, which strikes people
younger than 65, has a higher correlation with heredity. Relatives of those patients have
a 50/50 chance of developing Alzheimer’s at an early age. The more common kind,
affecting people over the age of 65, is not hereditary. Current research indicates that
family members of late onset Alzheimer’s patients are no more likely than the general
population to develop the disease.
It is strongly recommended that caregivers and aging persons become aware of new
information about Alzheimer’s disease as it becomes available. This will help to dispel
myths and avoid unnecessary worries.
19
20
Section III: Alzheimer's Disease:
Symptoms, Treatment, Prognosis
21
22
TEN WARNING SIGNS OF ALZHEIMER’S DISEASE
Typically, symptoms of Alzheimer’s develop gradually. However, some people can
mask them for some time. As you look at the warning signs, keep in mind we all do
some of these things some of the time. However, if these symptoms start to interfere
with our daily lives, something may be wrong. If your loved one displays several of the
following symptoms, it is time to see a doctor for a complete evaluation.
1. Memory loss that affects job skills. Forgetting the names of coworkers, phone
numbers or job assignments is often one of the first signs of dementia.
2. Difficulty performing familiar tasks. A person with Alzheimer’s may turn on the
stove then forget what they were cooking, or go into the bathroom to fix their hair and
forget why they are there.
3. Problems with language. A person with Alzheimer’s may sometimes use
improper words in conversation, forget what they are saying mid-sentence or use a
similar sounding word with the wrong meaning.
4. Disorientation to time and place. People with Alzheimer's can become lost on
their own street, not knowing how they got there or how to return home. They often
forget what year or season it is, or may think they are living in a different period of
their life.
5. Poor or decreased judgment. A person with Alzheimer's may lose the ability to
make proper judgments for themselves or others, such as choosing inappropriate
clothing for the occasion or weather.
6. Problems with abstract thinking. Numbers become a big mystery for people with
Alzheimer’s. This may start with something as small as paying a check at a restaurant,
but can grow into bigger issues.
7. Misplacing things. We all lose things, but a person with Alzheimer’s will place an
object in a strange place, like a hairbrush in the washing machine or freezer.
8. Changes in mood or behavior. Rapid mood swings can be a sign of Alzheimer’s.
A person with Alzheimer’s can swiftly change from one extreme to another for no
apparent reason.
9. Changes in personality. Common changes in personality associated with
Alzheimer’s include, but are not limited to, extreme confusion, anxiety or fearfulness,
as well as paranoia or hallucinations.
10. Loss of initiative. A person with Alzheimer's may in some instances become
very withdrawn and need cues and prompting to re-engage.
23
SYMPTOMS OF ALZHEIMER’S DISEASE
The symptoms of Alzheimer’s disease are divided into two categories:
COGNITIVE – thinking, learning and retaining information.
PSYCHIATRIC – making decisions, acting appropriately and interacting socially.
It is important to distinguish between the two, so behavioral problems caused by
the loss of cognitive ability are not treated with medications designed for
psychiatric symptoms.
COGNITIVE symptoms, called “The 4 A’s of AD,” include:
1. Amnesia
2. Aphasia
3. Apraxia
4. Agnosia
1. Amnesia is defined as loss of memory, or the ability to remember facts or events.
We have two types of memories – the short-term (recent, new) and long-term
(remote, old). Short-term memory is stored in a part of the brain called the temporal
lobe, while long-term memory is stored throughout the extensive networks of nerve
cells in the temporal and parietal lobes. With Alzheimer’s, short-term memory is
damaged first. A patient may not remember what they had for breakfast, while
remembering clearly how they broke their arm at age eight.
2. Aphasia is the inability to communicate effectively. Expressive aphasia is the loss
of ability to speak or write in a meaningful way. The patient may use words incorrectly,
or may make up new words, which cannot be understood by the person to whom they
are speaking. This can be very frustrating to both people in the conversation.
Receptive Aphasia is the inability to understand spoken or written words. Sometimes
the individual pretends to understand and may nod their head in agreement to cover
up their aphasia. They may also read but not comprehend a word of what they have
read. It is important to realize that while words may be meaningless to them, they still
understand body language and non-verbal behavior. A smile and pleasant calmness
are very powerful in this situation.
3. Apraxia is the inability to perform usual motor tasks, such as brushing teeth and
dressing. Eventually, all motor skills may be lost. Sophisticated motor skills, such as those
related to job performance, are usually the first to become impaired. More instinctive
functions like chewing and swallowing are generally lost in the final stages of the disease.
24
4. Agnosia is the loss of ability to correctly interpret signals from the five senses.
Individuals with Alzheimer’s may not recognize familiar people or objects. They may
not know what a pencil is or what it is for. They may not recognize their spouse of
many years. A common but unrecognized agnosia is the inability to understand their
own body’s sources of discomfort, such as chest pain or a full bladder.
PSYCHIATRIC symptoms may include:
1. Personality changes
2. Depression
3. Psychotic hallucinations and/or delusions
1. Personality changes may become evident in early Alzheimer’s. These can
include irritability, apathy, withdrawal and isolation. Patients may become angry and
frustrated very easily.
2. Depression can occur at any stage. It is treatable, even in late stages, and
treatment can vastly improve quality of life for the patient and the caregiver.
3. Psychotic symptoms may include hallucinations and delusions, which usually
occur in the middle stages of the disease. Hallucinations typically are auditory
(hearing things), visual (seeing things) or both. Sensory impairments, such as hearing
impairment or poor eyesight, tend to increase hallucinations in the elderly. Delusions
are ideas held by the patient that have no basis in fact. They may believe their spouse
is a stranger living in their house, or that someone has stolen something from them.
No amount of evidence can convince them that these things are not true.
Hallucinations and delusions are frightening to the patient and may lead to agitation,
aggression and verbal outbursts. Arguing or trying to rationalize with the patient about
“the truth” will only make them more anxious and increase unwanted behaviors.
Individuals with psychiatric symptoms have more behavioral problems than those who
do not exhibit them. It is important to recognize these symptoms so appropriate
medications can be prescribed and safety precautions can be taken. These behaviors
can often be reduced through the carefully supervised use of medications and
behavior management. Talk to your primary physician, geriatrician, neurologist or
geriatric psychiatrist about these symptoms, as they may be treatable.
25
OTHER TYPES OF DEMENTIA
Dementia is a not a specific disease, but a group of symptoms affecting memory,
thinking and social abilities. To help distinguish them, the most common kinds of
dementia are discussed below.
Alzheimer’s disease
Alzheimer’s disease is the most common dementia in those 65 and older, but the
early onset variant can begin in the 40s and 50s. The presence of amyloid plaques
(clumps of the protein beta-amyloid) and neurofibrillary tangles (clumps of the
structural protein tau) characterize the disease. Memory loss occurs first, followed by
personality and behavior changes (paranoia or aggression), inability to control bodily
functions (incontinence) and hallucinations or delusions.
Pick’s disease (Frontotemporal Dementia)
Pick’s disease is a subset of a category of dementias called frontotemporal dementia.
This involves loss of nerve cells in the frontal and temporal lobes of the brain. Pick’s
disease is characterized by the presence of Pick’s bodies (clumps of the protein tau)
in affected nerve cells without amyloid plaques. This disease has an earlier onset,
originally presenting as personality or behavior changes rather than memory loss.
Vascular Dementia
Vascular dementia is the second most common form of dementia. Often occurring
after a stroke, it is caused by brain cell death due to lack of oxygen. Progression of
the illness depends on the presence of additional strokes. People tend to exhibit
impaired memory and thinking, but rarely have personality changes unless the
frontal lobe is affected.
Parkinson’s disease
Parkinson’s disease is a movement disorder caused by nerve cell death in a part of
the brain called the substantia nigra, causing decreased amounts of the
neurotransmitter dopamine. It first presents with a tremor (either resting or “pill
rolling”), muscle rigidity, slowing down of movements (bradykinesia) and shuffling
gait. Dementia can develop in the late stages of the disease.
Lewy Body Dementia
Lewy Body Dementia involves nerve cell death in the outer layer of the brain (the
cortex) and the substantia nigra, with the presence of Lewy bodies (clumps of the
protein alpha- synuclein). Symptoms overlap with Alzheimer’s to include memory
loss and confusion, but Lewy Body Dementia patients typically have a more rapid
decline and also experience Parkinsonian symptoms. This disease is differentiated
from Parkinson’s by earlier development of dementia after movement symptoms.
Alzheimer’s Disease Resource Agency of Alaska. (November 20, 2009). “Alzheimer’s Disease and Related Dementia.”
http://www.alzalaska.org/PDF%20Files/What%20Is%20Dementia%2005.pdf Frontotemporal Dementia: Growing Interest in a Rare
Dementia. (July 2002). Connections, 9; 2. connectionsMayo Clinic. (November 20, 2009). “Dementia”
http://www.mayoclinic.com/health/dementia/DS01131Medicine.net. (November 20, 2009) “Dementia”
26
Disease
Alzheimer’s
Disease
Disease Features
-Amyloid plaques (build
up of protein betaamyloid)
-Neurofibrillary tangles
(twisted tau proteins)
Frontotemporal -A group of dementias
Dementia (FTD) characterized by nerve
cell death in the frontal
and temporal lobes of the
brain
Pick’s Disease -Subset of FTD that has
presence of Pick’s bodies
(buildup of protein tau)
-Death of nerve cells due
Vascular
to lack of oxygen and
Dementia
nutrients (usually by
stroke)
Clinical Features
-Memory loss and
cognitive decline
- Personality and
behavior changes, loss
of motor control in later
stages
-Personality changes
(aggression, lack of
social inhibition and
empathy) occur before
memory loss
-Similar to FTD
-Symptoms occur
suddenly, often
after stroke
-Memory and
cognitive impairment
present
rarely personality
-Nerve cell death in an
-Parkinsonian
Parkinson’s
changes
area of the brain called the symptoms
Disease (PD)
(resting or “pill
substantia nigra, causing
decreased amounts of the rolling” tremor,
neurotransmitter dopamine muscle rigidity,
slowing of
movements and
shuffling gait)
-Dementia
in late stages
-Nerve cell death in outer
-Memory loss,
Lewy Body
Dementia (LBD) layer of brain (cortex) and confusion
-Parkinsonian
in substantia nigra
-Presence of Lewy bodies symptoms
-Differentiate from AD
(clumps of the protein
by rapid onset & decline
alpha-synuclein)
-Differentiate from PD
by earlier development
of dementia after
movement symptoms
Age of Onset
-Usually after
65
-Early onset
variant can
occur in 40s
and 50s after
-Usually
age
40 but before
65
-Same as FTD
-Increased risk
with high
blood
pressure,
diabetes, or
high
cholesterol
-Average
age
is
60
-Greater than
50
27
ALZHEIMER’S DISEASE DESCRIPTION AND DIAGNOSIS
Dementia is an umbrella term used to describe the inability to think, remember and reason.
Alzheimer’s disease is the most common type of dementia, but there are many others –
both reversible and irreversible. Alzheimer’s disease is a form of dementia characterized by
deterioration of both mental ability and personality. These changes are a reflection of
physical changes in the cells of the brain, visible only at autopsy. Because this information
is only obtained after death, the diagnosis of the living patient is made based on careful
evaluations of the symptoms of mental and personality changes.
It takes a careful evaluation of all the information available from the patient and those
who are close to them to make the diagnosis. Evaluation and diagnosis made by a
skilled professional has a 90% accuracy rate. The process is made difficult by the
fact that more than 60 dementing diseases have similar symptoms. Since some of
the other dementias are reversible or curable with proper treatment, it is important to
be as certain as possible of the diagnosis. Once the diagnosis is made, appropriate
treatment can begin, and plans made for the future can be made.
The evaluation can include blood tests; psychological tests to assess memory,
attention, language skills and problem solving ability; a physical exam; and possibly
a CT or MRI of the brain. These tests will help rule out the reversible dementias,
such as those caused by thyroid disorders, electrolyte imbalances and vitamin
deficiencies. Among the irreversible dementias, Alzheimer’s is the most common,
but other causes can include:







Alcohol or drug abuse
Drug imbalance
Brain tumors
Chronic meningitis
Depression
Head trauma
Nutritional problems






Parkinson’s disease
Lewy Body dementia
Pernicious anemia
Stroke
Huntington’s disease
Thyroid disease
28
HOW TO TALK TO THE PATIENT ABOUT THE DIAGNOSIS
By the time the diagnosis is made, the patient probably is aware that something is
wrong with their memory and may be under a lot of stress. They could have been trying
very hard to hide symptoms for some time. The diagnosis may confirm their worst fears
or it may come as a relief that there is a name for what is wrong. It can be comforting to
learn there are ways in which their symptoms can be relieved.
If you are the one who will be talking to the patient about the diagnosis, choose your
words wisely. You may call the disease by its name, or simply tell them they have a
brain disorder that affects memory and unfortunately will get worse. Most importantly,
you need to reassure them that you love them and will not abandon them.
Below are some tips for this difficult conversation:
1. Choose a quiet place to talk and a time when the patient is calm. Avoid
rushing through the explanation.
2. Try to make the information understandable. Use simple words and
sentences. Answer questions honestly and directly. Be prepared to repeat.
3. Reassure the patient that you and other family members will be there.
Address concerns and fears. Be patient, and allow them to talk.
4. Emphasize things they can still enjoy now. Because changes are gradual,
the effects on quality of life may be several years away.
5. Watch for signs of depression, during this conversation and beyond. If
signs appear, seek professional help.
Remember, your loved one has a brain disorder that affects short-term memory. You
may feel the need to repeat this conversation. Depending on what stage of the disease
process your loved one is in, it may be new information every time you tell them.
The goal in this circumstance is quality of life. If they are able to understand, you can
continue to have the conversation, but if it comes as a surprise each time you tell them,
it may be better for everyone if you discuss it only once.
29
DEPRESSION AND ALZHEIMER’S
Depression is not a normal part of aging; it is a biological brain disorder. It is important
to be aware of the symptoms of depression in the elderly, because between 7% and
12% of people over the age of 65 become depressed. Suicide is one of the 10 leading
causes of death in the elderly. There is effective medical treatment for depression which
will improve the condition for up to 90% of patients. This treatment is usually done in an
outpatient setting, and may require trying several types of therapy before improvement
occurs.
There are many triggers of depression. Complicated grief – long lasting and severe grief
that interrupts a person’s ability to resume their own life – may lead to depression. If
grief remains severe for more than 3 to 6 months, depression has likely developed.
Isolation and loneliness also trigger depression. Some medications, especially those for
high blood pressure or pain, may trigger depression. Chronic illnesses, as well as acute
infections and poor oxygenation, may also lead to depression or mimic Alzheimer’s
disease.
Symptoms of depression may resemble early signs of Alzheimer’s disease known as
pseudo-dementia. Depressed people lack the energy or interest to remember things and
may therefore seem to have memory problems. Depressed people may neglect their
hygiene and diet and may have increased irritability and personality changes. Consult a
physician for a thorough evaluation to determine if the patient has depression or another
treatable problem that may rule out Alzheimer’s disease.
30
SYMPTOMS OF DEPRESSION
Because many symptoms of depression overlap with those of Alzheimer’s disease, it
takes careful attention to distinguish the true cause. Key factors may include persistent
sadness or thoughts of death or suicide. If depression is appropriately treated, quality of
life will improve for both the patient and the caregiver.
Look for these signs and symptoms of depression:

Sadness throughout the day most days

Loss of interest in and enjoyment of favorite activities

Feelings of worthlessness

Excessive or inappropriate feelings of guilt

Loss of appetite or changes in weight

Sleeping too much or too little

Restlessness*

Thoughts of suicide

Trouble making decisions*

Trouble concentrating*

Aches and pains
*May also be attributed to underlying Alzheimer’s disease
31
CLINICAL CHARACTERISTICS OF ALZHEIMER’S DISEASE
STAGE 1: NO COGNITIVE IMPAIRMENT
At any age, people may be free of objective or subjective symptoms of cognitive and
functional decline, as well as associated behavioral and mood changes. We classify
these mentally healthy persons of any age Stage 1, or normal.
STAGE 2: NORMAL AGED FORGETFULNESS
At this stage we begin to see subjective complaints about cognitive and/or functional
difficulties, most frequently in the following areas:
a)
b)
c)
d)
e)
forgetting where one has placed familiar objects;
forgetting names one formerly knew well;
no objective evidence of memory deficits on clinical interview;
no objective deficits in employment or social situations; and
appropriate concern with respect to symptoms.
STAGE 3: MILD COGNITIVE IMPAIRMENT
Persons at this stage manifest subtle deficits, which are noted by persons who are
closely associated with the patient. The patient may deny the memory problem, and
mild to moderate anxiety may start to accompany the symptoms. These deficits may
appear in diverse ways, such as the following:
a)
b)
c)
d)
e)
f)
g)
becoming lost when traveling to a familiar location;
decreased performance in employment and/or social settings;
reading a passage or a book and retaining relatively little material;
decreased facility in remembering names upon introduction of new people;
word and name finding deficit noticeable to those closely associated;
losing or misplacing an object of value; and
inability to learn new skills and/or organize simple events.
STAGE 4: MILD ALZHEIMER’S DISEASE
The diagnosis of Alzheimer’s disease can be made with considerable accuracy in this
stage. Despite overt deficits in cognition, persons at this stage can still potentially
survive independently in community settings. They are usually oriented to time and
place and can recognize familiar persons and faces. Denial is the most common
defense mechanism. Patients in this stage may have a flat affect and withdrawal from
challenging situations. The most common functioning deficit in these patients is a
decreased ability to manage complex activities of daily life.
32
Examples of common deficits include:
a) decreased ability to manage finances;
b) decreased ability to prepare meals or shop for groceries;
c) decreased knowledge of current and recent events; and
d) deficits in memory of one’s personal history.
STAGE 5: MODERATE ALZHEIMER’S DISEASE
Patients in this stage can no longer survive without some assistance. The characteristic
functional change in this stage is a deficit in basic activities of daily life. Cognitively,
persons at this stage frequently cannot recall major events and aspects of their current
lives such as the name of the president, the weather conditions of the day or their
correct address. Even if some important aspects of life are recalled, the information is
loosely held.
STAGE 6: MODERATELY SEVERE ALZHEIMER’S DISEASE
Patients in this stage can no longer live alone because their ability to perform basic
activities of daily life is now compromised. The person may occasionally forget the
name of the spouse or caregiver upon whom they are entirely dependent for survival.
They become largely unaware of all recent events and experiences in their lives. They
are generally unaware of their surroundings, the year, the season or the time.
Assistance with daily living may include toileting, bathing, eating, medication
management and general routine. In addition, patients may experience changes in
personality and behavior. These are variable but may include:
a)
b)
c)
d)
e)
delusional behavior (accusations of stealing, extramarital affair);
hallucinations (seeing or hearing people or things that are not there);
obsessive behavior (repeating the same activity or fixating on an idea);
marked increase in anxiety and agitation; and
new violent or threatening behavior.
STAGE 7: SEVERE ALZHEIMER’S DISEASE
At this stage, Alzheimer’s patients will require continuous assistance with all basic
activities of daily life for survival. Symptoms may include complete loss of all verbal
ability, incontinence of both bowel and bladder, inability to walk, inability to sit up without
assistance and problems swallowing. At this stage, you may consider calling hospice for
assistance with physical, emotional and spiritual care.
Adapted from The Global Deterioration Scale (GDS). The GDS scale was originally presented by B.
Reisberg, S. Ferris, M. de Leon and T. Crook ("The global deterioration scale for assessment of
primary degenerative dementia," in American Journal of Psychiatry, 1982, vol. 139, pp/. 1136-1139.
33
STAGES OF DISEASE PROGRESSION
Alzheimer’s disease is defined in three stages. The lifetime of the disease ranges from
two to 20 years, with an average of eight years. The terminal stage occurs an average
of eight years after the onset of earliest symptoms and can last for 20 years.
STAGE ONE: Small changes may not be recognized as abnormal.
1.
2.
3.
4.
5.
6.
7.
8.
Denial of symptoms by those closest to patient
Forgetfulness or memory impairment
Increasing inability to handle routine tasks
Lack of reaction or new ideas
Decreased interest in taking the lead
Inability to keep up with time or place
Depression
Fearfulness
STAGE TWO: The problem is acknowledged and medical help is sought.
1.
2.
3.
4.
5.
6.
7.
8.
Wandering
Increasing inability to keep up with time and place
Increasing forgetfulness
Agitation and restlessness, especially at night
Developing inability to identify common objects
Inability to understand ideas
Muscle twitching
Repeating words or actions
STAGE THREE: The patient requires total personal care.
1.
2.
3.
4.
5.
6.
7.
Complete dependence
Developing inability to recognize others or self in mirror
Speech impairment or muteness
Developing need to put everything into mouth
Developing need to touch everything
Severe weight loss
Loss of control of bodily functions
34
ALZHEIMER’S DISEASE: A JOURNEY’S END
Alzheimer’s disease is fatal. Patients die as a result of overwhelming nerve cell
destruction. End-stage patients forget how to walk, talk, eat, care for themselves,
communicate with others or understand their surroundings. Care at this stage should
focus on the comfort of the patient and support for the caregiver. Hospice can help by
sending a nurse for weekly assessments, an aide for physical care, and a social
worker and chaplain for mental and spiritual well-being.
It is important to be prepared for the final stages of Alzheimer’s. If possible, discuss
choices with the patient before they lose the capacity to understand such concepts.
Following the wishes of the patient works to everyone’s benefit. It guides the physician
in making medical decisions and comforts the family to know they are honoring their
loved one’s expressed desires. A living will is a written expression of the patient’s
decisions regarding treatments they do and do not want at the end of life, after they
are no longer able to express themselves.
It is also very helpful to designate a “proxy” – someone who is familiar with the wishes
of the patient and willing to accept the responsibility of making decisions about care in
accordance with those wishes. This is not always an easy position, because others
may disagree with a particular decision. The usual proxy is the next of kin. However,
the patient may appoint someone else to make decisions about their health care
before they lose the ability to choose. An elder law attorney can record this decision
with a witnessed official document. If no such document exists, the family should
agree on a spokesperson to act as an unofficial representative when discussing
decisions with doctors and other health care workers.
During this process, the decision maker should keep in mind the changing needs of
the situation, as well as the expressed wishes of the patient. Many people say, “I
never want to be in a nursing home.” If the patient’s needs no longer can be met at
home, it may be time to honor the intent, rather than the letter of the wish. The wish
“never to be in a nursing home” often has to do with the fear of being neglected. But in
the end stages, a nursing facility may be the place where the best care can be
provided. The decision maker will need to take all of this into consideration before
deciding on the best course of action.
Needs are considerably different in the end stages, when care becomes focused on
cleanliness and comfort. As long as the patient is able to chew and swallow, the
choice of foods and feeding process should be left to the patient. When the patient no
longer wants food, or simply pockets it in the cheeks, it is time to substitute other
human contact for feeding. Gentle touch or simply sitting with the patient and talking
to them in a soothing voice are good nurturing substitutes.
Remember that artificial feeding and breathing machines do not prolong the life or
increase the comfort of the end-stage Alzheimer’s patient. These measures only
block nature’s course.
35
END-OF-LIFE ISSUES FOR ALZHEIMER’S PATIENTS

Alzheimer’s disease is a progressive fatal illness that ultimately destroys
the brain.

Most patients understand fatal illness and know what care they would like to
receive.

Advance directives, such as a living will, afford patients the opportunity to
express their wishes for the care they would like to receive.

Families should prepare for terminal care while the patient is still healthy and
alert.

Families should agree on issues in accordance with the patient’s wishes
before the need arises, to avoid conflict in a time of crisis.

Doctors will use all means available to treat patients when families cannot
agree on a plan of care.

Most patients choose dignity, comfort and respect over simple longevity.

Most end-stage Alzheimer’s patients do very poorly when placed on life
support machinery, which may prolong the suffering and dying without
adding appreciably to the length of life.

Alzheimer’s patients frequently experience pain and need to be kept
comfortable with appropriate medication.

End-stage Alzheimer’s patients and their families can receive the care,
comfort and dignity they deserve through hospice services.
36
HOSPICE AND THE ALZHEIMER’S PATIENT
Hospice services support people with a terminal illness, as well as their families. Most
hospice patients are cared for in their homes, although hospice can supplement care
given to residents of nursing homes or other facilities – wherever the patient considers
“home.”
Hospice provides a team of professionals to assist, but not to take over care. A hospice
nurse visits at least once a week to assess the patient for change of status or new
measures that might benefit the patient or family. If needed, an aide is sent into the
home to assist with personal care. Chaplains are available upon request for spiritual
support, and social workers can provide social support and information about useful
community resources. A hospice physician may visit as a medical liaison to the patient’s
primary doctor, or assume that role. Hospice volunteers can help in ways similar to a
friend or neighbor, keeping the patient company while the caregiver runs an errand.
Hospice services are designed to support people with a life expectancy of six months or
less. Although Alzheimer’s disease is a terminal illness, its progression is so slow that
physicians find it difficult to determine life expectancy. The National Hospice and
Palliative Care Organization (NHPCO) professionals who treat Alzheimer’s patients
have arrived at a set of guidelines that outline the physical and mental signs that may
predict a six-month life expectancy to determine hospice eligibility.
For a hospice admission, the patient may have one or more of the following:






Inability to ambulate without maximum assistance
Inability to sit or hold up the head
Inability to dress without assistance
Inability to bathe
Incontinence of bowel and bladder
Inability to say more than six meaningful words
Life expectancy drops to less than six months with these complications:







Aspiration pneumonia
Hip fracture
Recent stroke
Kidney infections (not bladder infections)
Multiple bed sores
Recurrent fever after antibiotic treatment
Refusal to eat or difficulty swallowing
If you believe your Alzheimer’s patient would benefit from the services hospice can
provide, please contact your primary physician or call Covenant Alzheimer’s Services
or Covenant Hospice for a referral.
37
38
Section IV: Caregiving
:
39
40
HOW TO COPE AS AN ADULT CHILD OF AN ALZHEIMER’S PATIENT
At Covenant Alzheimer’s Services, we have the privilege of counseling many family
members dealing with the disease. When adult children are involved as primary
caregivers, we find three concerns – stress among siblings, the only child and longdistance caregiving.
Stress Among Siblings
To help deal with sibling related issues, caregivers find it useful to …

Clarify the focus of their own caregiving efforts.

Ask for help when necessary, but be specific about what help is needed.

Learn to function without sibling assistance when it becomes problematic.

Keep less engaged siblings informed about the parent’s disease progression,
disability, desires and plan of care.

Listen to the point-of-view of other siblings.

Appropriately confront their anger and do not allow resentment to grow.

Arrange frequent family conferences.

Create an alternate support system utilizing friends and support groups.

Seek professional counseling.
When caring for aging parents, most brothers and sisters admit they are glad to have
one another, even if there are some discordant moments between them.
The Only Child
To manage the caregiver role, an only child may find it helpful to …

Enlist the cooperation of spouse and children.

Be clear with yourself and others about priorities.

Seek out medical specialists for information and guidance.

Locate outside resources.

Establish partnerships to address a parent’s solitude.

Learn new ways to communicate with the parent.

Engage in stimulating outside activities.

Create an alternate support system utilizing friends and support groups.
41
Always keep in mind the wide range of programs and support services available in the
community – things like friendly visitors, visiting nurses, adult day care activities and
respite care programs. No caregiver needs to be alone.
Long-Distance Caregiving
There are times when the main caregiver has a job or other responsibilities in a distant
city and cannot be immediately present to directly supervise the Alzheimer’s patient’s
care. This circumstance presents additional challenges to those of a resident caregiver.
As a long-distance caregiver, you may find it helpful to …

Educate yourself about the patient’s disease, disability and medications.

Place calls frequently to check in with the patient and local caregiver.

Visit as often as possible. Take advantage of family leave opportunities at work.

Offer help with financial matters, or provide respite to the main caregiver.

Familiarize yourself with the patient’s physicians and specialties. Write a letter
introducing yourself and enclose a copy of your power of attorney, if you have
one. If you do not have power of attorney, obtain written permission from the
patient or the holder of the power of attorney for the physician to talk to you about
the patient. Send a copy of this permission to the physician.

Make sure that all legal issues (wills, powers of attorney, living wills, etc.) are
taken care of early in the course of the disease. Make sure you understand how
these work in the state in which the patient lives. Communicate with the patient’s
local attorney.

Make friends with a trusted local observer who can check on the patient
regularly, even if there is a live-in caretaker or the patient resides in a nursing
facility.

Network with local services, such as Meals on Wheels, community transportation
and day care opportunities to meet the patient’s needs.

Write letters and send photos. Stay in touch any way you can.
Things may go wrong whether you live in the same house or a thousand miles away. Do
not blame yourself. Everyone wants what is best for the patient. Be part of the solution.
Berman, Claire. (2001 ).Caring for Yourself While Caring for Your Aging Parents. New
York, NY: Henry Holt.
42
ADVICE FOR THE CAREGIVER OF AN ALZHEIMER’S PATIENT
DO …

Give yourself rest, relief and time away from your caregiving.

Try to keep the patient occupied.

Give the patient simple tasks.

Keep the patient safe.

Give single-step instructions.

Be gentle and calm.

Look the patient in the eye when you talk to them.

Hold their hand and hug them.

Give them the reassurance of knowing where you are.

Redirect them when they do something unusual.

Expect them to ask the same question repeatedly.

Maintain your sense of humor.

Write down memories.

Attend your support group.

Accept help.

Consult an attorney early in the disease to arrange legal affairs.

Arrange power of attorney, checking account and safe deposit box access early on.
DO NOT …

Give the patient too much responsibility.

Expect accurate answers from the patient.

Expect them to remember what you have told them.

Expect them to remember the names of people or things.

Give multi-step instructions.

Be impatient.

Scold or argue.

Take their behavior personally.

Raise your voice.

Give too many choices.

Try to do everything yourself.
43
HOW TO HANDLE CRITICISM OF YOUR CAREGIVING
Don’t be surprised if friends and family members question your caregiving decisions.
This may cause you to feel defensive or guilty. Your first impulse may be to lash out, but
this is not productive. These people also care about your Alzheimer’s patient and may
be a resource when you need support and understanding. To handle their complaints
and suggestions effectively, include them in the caregiving process as much as
possible. They deserve answers, and you deserve the support they can offer by having
them on your team.
Don’t protect others from the more difficult aspects of caring for an Alzheimer’s patient.
Let them know about the behaviors you are handling. Send updates by email or make
weekly phone calls to keep them informed. Share the good things that happen, as well
as the difficult things, the scary things, the things that bother you and the things that
make you laugh. When you have to make a decision, let them know the reasons why.
Remember they may be feeling guilty about their own inability to do more. Reassure
them, and suggest specific ways they can be more helpful.
Your friends and family may not have enough information about the Alzheimer’s disease
process. Educate them. Invite them to visit, and let them know what to expect. (For
example, if the patient has lost a lot of weight or is not recognizing old friends, prepare
them for these changes.)
One decision that frequently garners criticism by those not directly involved is the
decision to place the Alzheimer’s patient in a nursing facility. Let these people know
about changes as they occur and the measures you are implementing to cope with
them. If the time comes when you are no longer able to provide a safe environment at
home, tell them how you have evaluated local facilities and arrived at your decision.
If people are still critical in spite of adequate involvement and information, remember
you as caregiver have first-hand information and know what your loved one needs. Trust
your own judgment. What you are doing is part of the loving care and attention you have
been providing. When you make a hard decision, move forward with confidence.
Remember that critical people have their own issues, and try not to be judgmental of
those who differ with you.
44
YOUR ROLE AS CAREGIVER
Becoming the caregiver for a loved one usually happens one of two ways. Either you
find yourself gradually assisting with more of their needs over a longer period of time, or
they have a big medical event that thrusts you into the role without time to think. Either
way, becoming primary caregiver to an Alzheimer’s patient can be overwhelming. When
you care for someone with dementia, there are so many unknowns.
Regardless of how long you have been dealing with Alzheimer’s disease or to what
degree, it will affect your life and responsibilities – physically, emotionally and financially.
The role you have taken on is not an easy one. Use these tips to maintain and improve
your caregiving relationship:

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Take time for yourself. Take time to relax. Enlist the help of friends and family.
(You will see this repeated throughout our handbook, because such an important
part of caregiving bears repeating.)
Learn as much as you can about your loved one’s disease. This will give you
the tools you need to help them and an understanding of what’s to come.
Keep your loved one as active as possible. Help them participate in activities
in and outside the home as much as possible. Maintain the delicate balance
between helping accomplish a task and doing it for them. Allow them the time
needed to complete daily activities on their own.
Talk about family affairs, financial and healthcare decisions early on.
Don’t wait until these issues come up. Take care of them as soon as possible,
while your loved one is still able to understand.
Set realistic goals for both you and your loved one. Do not attempt to do
everything or be perfect. Set attainable goals so everyone is set up for
success rather than disappointment.
Do not put your life on hold. Continue to meet with friends, participate in
hobbies and maintain as normal a schedule as possible. You will feel more
energized and are less likely to become resentful.
Create a support system. Caring for someone with dementia is hard for you
and can be hard for others to understand. You need a support system that is
willing to listen and offer help. In addition to enlisting close friends and family,
consider joining a local Alzheimer’s support group to meet people in a similar
situation who can understand your frustrations and worries.
As caregiver, you should make allowances for this long-term commitment by pacing
yourself for the years ahead, providing for time away from the patient and pursuit of
personal interests. If you do not, your own health and ability to render care may be
adversely affected.
45
CAREGIVER BURNOUT
When a loved one develops Alzheimer’s disease, your life changes, too. One day
you’re a wife, a husband, a daughter or a son, and the next day you’re a caregiver. This
is not an easy transition for anyone, and particularly with Alzheimer’s, the role can be
overwhelming. Because Alzheimer’s is a long and slowly progressing disease, it is easy
to lose sight of an important truth – taking care of yourself is an essential part of
providing care for your loved one.
Caregiver burnout is a state of physical, emotional and mental exhaustion that may be
accompanied by changes in attitude from positive and caring to negative and
unconcerned. Burnout can occur when caregivers don’t get the help they need or try to
do more than they are able, either physically or financially. Caregivers who are “burned
out” may experience fatigue, stress, anxiety and depression. Watch for the following
symptoms:

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Withdrawal from family or friends
Loss of interest in activities previously enjoyed
Feeling blue, irritable, hopeless and helpless
Changes in appetite or weight
Changes in sleep patterns
Getting sick more often
Feelings of wanting to hurt yourself or the person you are caring for
Emotional and physical exhaustion
Irritability
Caregivers are often so busy doing for others that they neglect aspects of their own
health. The demands on a caregiver’s mind, body and spirit can easily become hard to
bear, ultimately leading to burnout.
The authors of Caregiving: Recognizing Burnout cite these contributing factors:




Role Confusion. It can be difficult to separate your role as caregiver with your
previous role as spouse or child.
Unrealistic Expectations. You may believe your involvement in your loved
one’s care should have a positive effect on their health and happiness.
Unfortunately with a progressive illness like Alzheimer’s, it may not.
Lack of Control. You may become frustrated by a lack of resources and/or
the skills needed to provide care.
Unreasonable Demands. These may be demands you place on yourself
or your family, or demands the patient puts on you. Remember, you are
human.
You can prevent caregiver burnout by taking go od care of yourself. Become familiar
with local resources. Set realistic goals and boundaries. Create a support system.
A sk f or he lp. Co vena nt Alzhe ime r’s Se rvice s is he re f or yo u.
46
SELF CARE FOR THE CAREGIVER
Caregiving is a JOB. This handbook is designed to provide information, resources and
encouragement in performing that job. You can also ask your doctor, read books or
check the internet for more information. Local resources include Covenant Alzheimer’s
Services, The Council on Aging, support groups, your church and your family.
Take care of yourself by asking for help when you need it. The Alzheimer’s patient in
your life is depending on you to stay mentally and physically healthy so you can help
them. In order to care for your loved one, you must first learn to care for yourself.

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




You are a caregiver, not a miracle worker. You cannot change others,
including the patient. But you can change how you react to them.
The disease is not your fault or within your control. There is no shame in
admitting you feel powerless. The important thing is being there for the patient.
Treat your patient as you treat yourself. Be gentle and kind.
Take time out. Use your resources to schedule uninterrupted time away. You
need it. This is not selfish; it is healthy.
Try to stay positive. When you are with friends and relatives or in support
groups, recognize the difference between expressing frustration and falling
into a negative place. Focus on good things that happen.
Laugh! It is okay to find some circumstances funny. Write them down so
you can share them along with the frustrations.
Find a quiet spot. From a closet to a corner of the yard, use it daily.
Use the right words. Say “I choose,” rather than “I must” or “I should.” Avoid
the words “never” and “always.”
Give support, praise and encouragement. Be a light to the patient and others.
Get creative. Think of new and different ways to approach caring for a dementia
patient. This is more refreshing than just plodding along. Be a resource to
yourself.
READ THIS PAGE ONCE A WEEK, ONCE A DAY OR ONCE AN HOUR AS NEEDED.
47
GOOD BODY MECHANICS
If you have to provide care that includes lifting or transferring your loved one, it is important
to use proper body mechanics to avoid strain and injury. The following is a list of
suggestions from the Washington State Department of Social and Health Services:

NEVER move a patient alone when help is available.

If your loved one is currently receiving Medicare, check with your general
practitioner for the possibly of getting an order for home health to teach
important personal care needs.

If you have no experience in moving or transferring a patient, ask your health
care provider to show you how.

Before lifting a person or moving anything, make sure you can lift or move safely.
DO NOT lift a person or a load alone if it seems too heavy.

To provide a good base of support, spread your feet shoulder width apart with
one foot slightly in front of the other. Bend at the knees, NOT the waist. Keep
your back as straight as possible.

Bring the person or load as close to your body as you can. Lift with your legs,
NOT your back. DO NOT TWIST, but turn with your entire body.

When possible, pulling, pushing, or sliding the patient requires less effort. If the
patient cannot help, use a draw sheet to move them. Pull the patient toward you
when rolling them.

Allow yourself moments to rest to avoid fatigue.
REMEMBER: DO NOT lift a person or a load alone if it seems too heavy!
Washington State Department of Social and Health Services. (2010). Family Caregiver
Handbook. Retrieved from http://www.dshs.wa.gov/pdf/Publications/22-277.pdf.
48
UNDERSTANDING GRIEF
Alzheimer’s disease is sometimes called “The Long Goodbye” – a descriptive way of
suggesting the years of progressive loss for the patient’s circle of family and friends.
Caregivers and others who have loved and continue to love the person will naturally
experience this loss and react to it with grief as the patient moves through disease
stages. Grieving is the natural healing response to the loss of a loved one’s emotional,
physical and spiritual self.
Our society gives us little preparation for grieving. In the recent past, it became
fashionable to divide the grief process into stages and name them denial, anger,
bargaining, depression and acceptance. While it is useful to recognize these expected
phases, there is no set manner in which they are experienced. Everyone grieves in a
very personal and individual way.
You may find it useful to think of grief as having tasks, which must be accomplished.
Below are some typical tasks you must complete during the hard work of grieving:

Acknowledge the reality of loss. Understand the disease process, and know
what to expect. Comparing your experiences with others in support groups can
help you come to terms with the situation.

Allow yourself to feel emotional pain. You may feel intense loneliness,
confusion, anger and spiritual distress. The comfort and support of others is
critical now – look to trusted friends or siblings, support groups or spiritual
leaders. Do not be afraid to express your feelings; they are a normal part of grief.

Look ahead realistically. How will your life be changed as the disease
progresses? Will you be able to care for your loved one at home for the duration
of the disease? How will you deal with the ultimate loss? Talk this over with your
key support persons.
In the end, balance will be restored. As you move through the process, remember grief
is unique to the person experiencing it. There is no wrong way to grieve, except NOT to
do it. Try reading what others have written about Alzheimer’s disease, from a survivor’s
point of view. Some of these stories may be helpful to you. Though grief is painful, it is
necessary to recover from loss – just as the body heals from physical injury.
49
SHIFTING FAMILY DYNAMICS
When someone you love is diagnosed with Alzheimer’s disease, it introduces change
and stress into your normal family dynamics. If there is a spouse, he or she initially
absorbs most of the stress. Other family members should be there for counsel and
support. There probably will come a time when the spouse cannot safely take care of
the patient alone. At that time, an adult child may need to take over the caregiving, or
the patient may need to be moved into a nursing facility.
Different family members will handle the stress of change and caregiving in different
ways. There may be discord among siblings as they decide who should be the primary
caregiver and how that person will make decisions. There is extra pressure on an only
child, who may feel burdened by making these decisions alone. If the caregiver is the
spouse of the patient, there are issues of grief and loss and role changing. When
younger children are in the home, their reactions to the changing dynamics may need
special attention, too.
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
Ask for help when you need it. If family is not available, turn to friends or other
sources of support. Make specific requests, such as, “I need help with bathing,” or
“I need someone here so I can go to the grocery store.”
Keep family and close friends informed. This will help everyone understand
the disease process and where you stand.
Clarify the current focus and priority of care. Is it safety? Comfort? Transfer to
a nursing facility?
Listen and respond thoughtfully to suggestions and concerns. Relatives
and friends are only trying to help, but you are in charge of the final decision.
Officially define power of attorney and other roles. Take care of these issues
early, while the patient can still understand. Make sure family members are
aware of the arrangements.
Educate yourself on the disease and local resources. Having all the
information and knowing where to seek help can reduce your anxiety.
Arrange family conferences when needed. Covenant Alzheimer’s Services
can facilitate important meetings. Consider including a counselor or trusted
minister if difficult decisions are on the table, or conflict is anticipated.
Do not allow irritation to fester and grow. Clarify your position and your goals.
Seek counseling if needed. Outside perspective can be helpful.
Covenant Alzheimer’s Services is here for you and your family.
50
Section V:
Behavior Management
51
52
INTERACTING WITH PEOPLE WHO HAVE ALZHEIMER’S DISEASE
BASIC PRINCIPLES FOR ALZHEIMER’S PATIENTS:
1. They may be unable to keep up with very basic conversation.
2. They may have trouble understanding more than one instruction at a time.
3. They may forget what was just said or done.
4. They will react negatively to negative emotions. Take your time, and smile.
5. They have lost the ability to reason. Do not argue.
6. They remember events from the past and may think they are living in that era.
Allow them to live in their time.
VERBAL INTERACTION:
1. Use simple, short sentences and focus on one topic at a time.
2. When addressing them, use their first name or nickname.
3. Calmly repeat yourself as needed.
4. Use specific words of objects or names of people to make your message clear.
5. Always introduce yourself and others (even family members) no matter how
many times you have visited.
6. Try topics of conversation that happened in the past (i.e. where they were born)
or broad topics having to do with the senses (i.e. the color of the flowers or the
smell of cookies baking).
NON-VERBAL INTERACTION:
1. A person with dementia may use one word, but mean another. Look for nonverbal clues (i.e. pacing may indicate the need to use the restroom).
2. Act out messages you’re trying to communicate (i.e. point to the object or mimic
the behavior you want them to perform).
3. A dementia patient may say or do things they would not normally do, if not ill.
Be cautious and take threats seriously.
4. Background noise (i.e. dishwasher or television) is confusing. Turn off or turn
down any such noise or music.
5. If the patient becomes difficult, leave them alone for 10-15 minutes before
addressing the topic again.
6. When all else fails, smile. It is a universal language.
53
HOSTILITY, AGGRESSION AND PHYSICAL VIOLENCE
Try to remember your loved one’s brain is not working the same way it has in the
past. While there may be moments of clarity, keep in mind their actions and words
are not their own. Take all threats seriously. Even if your loved one has never been
aggressive in the past, this is a different person – unable to make rational decisions.
They may not recognize you, or may be frightened of you because you are a stranger
to them. If they become anxious or delusional, their reactions may be catastrophic.

Put away all dangerous objects. Even in the home where the Alzheimer’s
patient has never been physically violent, it is a good idea to put away all
dangerous objects. Guns, knives, sewing machines and machinery with
exposed moving parts should be kept behind closed doors – and safely
secured.

Do not turn your back, and speak calmly. If the patient becomes
aggressive, respond to the anger and hostility by remaining calm and speaking
in a direct manner.

Back off. Step back five paces to see if this helps.

Assess the situation. Try to determine what has caused the hostility. If
possible, remove the patient from the upsetting situation. Does the patient
seem physically different (i.e. in pain? short of breath?) Are they on new
medication? Is something or someone new in the patient’s environment?

Do NOT try to hold or restrain the patient. This will only make things
worse.

Do try distractions. Offer food or drink, or a familiar comfort object like a
stuffed toy.

Call for help. Call friends, neighbors or family members – people whom the
patient knows and trusts. Let your physician know this is happening.

If you are in danger, get to a safe place and call 911. Safe places might
include a bathroom with door locked or a neighbor’s home. If uniformed
responders arrive, the patient may temporarily calm down. Insist on a visit
to the ER anyway – for a mood controlling medication and psychiatric
follow-up. If you have concerns for your safety, you can refuse to take the
patient home and ask for immediate placement. This is very difficult
psychologically but may be necessary to keep you and others safe.
Bear in mind you cannot help the patient if you are injured.
54
DELUSIONS AND HALLUCINATIONS
The definition of dementia is the inability to think, remember or reason. Because they
are unable to reason, people with dementia may become unreasonably suspicious.
They may think things that are not true, see things that are not there, or accuse others
of false ideas. No matter how ridiculous the idea may seem to you, it is very real to your
loved one.
1. Do not argue over the validity of the accusation;
2. Agree, but do not play into the idea;
3. Distract them with another activity.
What is a hallucination?
A hallucination occurs when a person sees or hears things that are not real. A person
may say they see their mother who has been deceased for years – or hear a train
coming when there is no train near the area.
What is a delusion?
A delusion is a false idea or thought. A delusional person may believe someone came in
the house last night and stole all their money, when in fact no one was in the house.
COMMON DELUSIONS
“You stole from me.”
A patient who is unable to find an item may become convinced that someone has stolen
it. This is, in part, defensive. If someone stole it, it is not the patient’s fault they cannot
find it. The patient may accuse the caregiver of stealing, or worse, may be convinced
that strangers are coming into the house. Do not argue, but instead agree that it is
unfortunate they are unable to find the missing item. Enlist their help to look for it, then
distract them with another idea.
“This is not my home.”
When a patient cannot recognize the place where they live, they may become
convinced they are not at home and being held against their will. This can be quite
distressing to the patient and the caregiver. The patient may spend a lot of time
“packing” and trying to convince visitors to take her home. It may be helpful to suggest
delaying the trip. Or, you might help pack, then suggest a new activity. While distracted,
you can put the suitcase away.
“I’m surrounded by strangers.”
As the disease progresses, the patient may become unable to recognize the caregiver
and others in the household. This may lead to the delusion that they are surrounded by
strangers – leading to fearfulness and possibly violence. As caregiver, you should
frequently identify yourself and reassure the patient of continuing love.
55
“People are plotting against me.”
Although patients are usually aware of their mental deficits in the early stages, they are
also aware of the burden they will become. This awareness relates to the common
delusion that people around them are plotting to institutionalize or poison them. Or, they
may fear you plan to abandon them. Reassurance and affection are the best course of
action.
While the type of delusion may differ, the above are some of the more common. In most
instances, redirection can help you through the situation. But when a problem becomes
troublesome, discuss it with the patient’s doctor. The prescription of a medication may
be indicated and helpful. If delusions lead to agitation and violence, follow the
instructions for hostility and aggression.
56
RUMMAGING, HIDING OR HOARDING, AND REPETITIVE BEHAVIORS
Behavioral symptoms of those with dementia can be the most distressing part of the
disease. Common associated behaviors include rummaging, hiding or hoarding, and
repetitive behaviors. In this section, we aim to give you an overview of each behavior
and possible behavior modification techniques to curb them.
RUMMAGING
The patient may repetitively remove or rearrange the contents of a drawer, a purse or a
closet. Typically, the patient will not be able to tell you what they are looking for. If they
can, you may be able to supply a satisfactory substitute for the item.
If the behavior is not harmful, there is no reason to make the patient stop. If the behavior
is disruptive (i.e. to another person’s possessions), give the patient something new to
rummage through. You can also redirect your loved one to a more acceptable task, such
as folding towels, stacking paper cups, putting pennies in a jar or stringing beads.
HIDING OR HOARDING
The patient is unable to distinguish between valuable and worthless items. They do not
recognize all the people around them, and therefore feel the need to hide items to keep
them safe from the strangers. When the patient forgets where they have hidden
something, they may become convinced a stranger has stolen it, becoming angry and
agitated.
Any item can be hidden anywhere. You may find the TV remote in the toilet, or a pair of
socks in a vase. More disturbingly, you may find food which is no longer edible hidden in
a secret place. The patient who is hiding and hoarding should be watched as carefully
as possible in order to discover the hiding places and retrieve the items.
REPETITIVE BEHAVIORS
Patients may polish a table for minutes at a time, wash hands over and over, or
continuously sweep the floor. These behaviors should not be stopped unless they are
somehow harmful or bothersome.
It is usually futile to ask the patient the reason for these behaviors, as they do not really
know. Questioning may make them defensive, or further confuse them. Giving the
patient new activities is the best way to redirect this behavior.
57
DRIVING AND DEMENTIA
Taking the keys away from your loved one is a huge decision. For most people, the
ability to drive is the crux of independence. When they are no longer able or allowed to
drive, it is a large blow to the person’s ego and autonomy. People often make the
decision to stop driving on their own when they feel they are no longer able to do so, but
if they do not, it becomes your responsibility. This is often one of the first decisions your
loved one may not agree with.
Driving is a learned skill that most of us master at an early age. We do it so much that
we often don’t even think about the skills needed to drive a car safely. We just get in the
car and go. Because driving is a mastered skill, a person can appear to be driving well
when they are really driving unsafely. Driving requires a highly complex mix of skills
including hand-eye coordination and the ability to evaluate situations quickly.
There is some controversy over the right time to take the keys of a person with
dementia. Some believe they should be removed as soon as a diagnosis is given, while
others disagree. In order to decide when your loved one should stop driving, think about
all the skills it takes to drive and evaluate whether your loved one still has what it takes.
The book, The 36-Hour Day, suggests considering the following as you evaluate your
loved one’s ability to drive.
Good Vision: The ability to see clearly from all sides, including behind and peripheral
vision.
Good Hearing: The ability to hear noises and recognize sounds and emergency sirens.
Quick Reaction Time: The ability to turn, brake and avoid accidents. If your loved one
reacts slowly or inappropriately at home, they more than likely would not be safe on the
road.
Decision Making: The ability to make good decisions rapidly and calmly. Would your
loved one know what to do in a complex situation, such as a dog darting out in front of
them while a horn honks and a truck is entering the intersection?
Good Coordination: Are their eyes, hands and feet able to handle a car safely? Are
they walking or seeing differently at home? If so, would they be able to safely handle a
car?
Environmental Awareness: A driver must be alert to what is going on around them at
all times. If a person is missing things that happen in their environment at home, they
may no longer be safe to drive.
Other Clues: Getting lost en route to a location, driving too slowly, becoming angry or
aggressive may be signs your loved one no longer should be on the road.
Mace, N & Rabins, P., (2006). The 36-Hour Day. New York, NY: John Hopkins University Press.
58
VISITING THE DOCTOR
Deviating from the normal routine can often cause anxiety for the dementia patient,
especially when visiting the doctor. How you approach a doctor’s visit will affect how
your loved one perceives the visit. You can help reduce normal anxiety about doctor
visits by showing pictures of the doctor and his nurse before you leave the house and
while you are waiting to be seen, to aid in remembering.
If your loved one has a negative reaction to visiting the doctor, it may be beneficial not
to tell them ahead of time. Instead, opt to make the doctor visit part of the day’s outing.
Once at the doctor’s office, act as though you are the patient and ask for your loved
one’s help while you see the doctor.
In either case, make sure to bring something to keep your loved one occupied while
waiting. Most importantly, take a list of all the patient’s medications (even over-thecounter medications and those obtained from another physician) and a list of questions
and complaints that have arisen since your last visit. Stay with the patient during the
visit. Your doctor may not realize the degree of memory trouble, so insist that
explanations are made to you. Ask for written instructions and if any of the medications
have undesirable side effects. Explain to the physician if the instructions do not fit the
patient’s ability, i.e. the inability to ask for a pain pill if the patient cannot communicate
pain.
If your loved one absolutely refuses to see a specialist, contact their primary care
physician to request an order for home health so a doctor or nurse may visit your loved
one at home. Toward the end of life, hospice may also provide in-home health care for
your loved one.
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COMMUNICATION WITH THE ALZHEIMER’S PATIENT
The Alzheimer’s patient lives in a world that is confusing, frustrating and increasingly
incomprehensible. Early on, they are dealing with mourning and a loss of self-esteem
as they realize the skills and capacities they no longer possess. Later, they may not be
able to remember who you are or where they are. This feeling of being lost and alone is
frightening. Imagine looking around and not knowing what objects are or what they are
used for – and, if you do know, having trouble remembering the words. Put yourself in
their shoes when you communicate.
Non-verbal cues such as tone of voice, facial expressions and gestures convey as
much as the words that are said. Without speech, you can show patience, respect and
affection for the patient. Maintain a calm and reassuring demeanor when addressing
them. Always speak slowly and distinctly, using simple words and sentences. Allow the
patient time to process one statement or request before adding a second one. Rushing
and hurrying will increase confusion.
Approach your loved one from the front. If you startle them by coming from behind, it
may take them a while to refocus. Address them by name and make eye contact. Use
simple gestures to aid in explanation. Point to objects, or demonstrate. When the patient
has just woken up or is tired, or has just moved from one room to another, confusion
may be exacerbated. Allow time for the patient to readjust before introducing new
thoughts or requests.
Remember: the definition of dementia is the inability to think, remember, and reason. Do
not try to reorient your loved one during a hallucination or delusion. Do not argue with
an Alzheimer’s patient. They may look “normal” and have moments of clarity, but your
loved one is unable to reason.
Try using the PADDD technique:
Patience – Your loved one will react to your emotions, so try to calm yourself.
Agree – Do not argue, but agree with your loved one.
Distract – Try to get them involved in some other activity.
Delay – Use the other activity to delay the behavior.
Deceive – Reassure them to get them off the subject.
In the later stage, when the patient is no longer able to respond, keep talking about
things that are important to them. This is soothing, and valuable to the relationship. In
many cases, touch is an important communication. Massage of the head, arms, feet or
back can convey love and caring – just be sure touch is acceptable to the patient. Some
people equate touch with control or prior abuse. But for most patients, touch is both
acceptable and desirable.
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ENVIRONMENT AND ROUTINE
The Alzheimer’s patient will generally function best in a quiet and orderly environment
with a consistent routine. Loud noises and large numbers of people talking or moving
about lead to worsening confusion and fearfulness.
An unhurried, consistent routine is essential for the patient’s sense of security.
Bathing, dressing, toileting and eating should follow a regular schedule. Deviation can
lead to increased confusion and alarm. For example, if the patient is accustomed to
dressing before breakfast and one day is led to the table in her nightclothes, this will feel
wrong and might alarm the patient. They may refuse to eat or start pulling off their
nightclothes. These inappropriate behaviors are understandable when interpreted in
light of a disordered schedule.
As long as the patient is able to read, write a calendar of daily events in large print and
post it in plain view. Each activity can be crossed out as it is done. Tape recordings of
family members’ voices recounting familiar events are also calming and may help in
maintaining some memory.
Lack of clutter alleviates safety concerns and decreases confusion. Small, busy or
dark-colored rugs may be seen as obstructions or holes to be avoided. Brightly colored,
larger rugs are easier to see. High-gloss slick floors are likely to cause falls due to lack
of traction and can easily be confused with puddles of water to be avoided.
Colors and identifiers help the Alzheimer’s patient maintain orientation. Painting the
bathroom door blue or hanging a pretty wreath on the bedroom door may make them
more easily identifiable. Some families tape a picture of what is behind a door or drawer
so the patient knows where to go when looking for a certain room or object.
A balanced diet, regular exercise and good medication management are all
essential components of care. As at any stage in life, good health leads to feeling better
and declining more slowly. As long as they are able to tolerate it, a balanced diet should
be offered as part of the daily routine. Regular bowel movements should occur at least
every third day; the patient may need a routine stool softener with laxatives.
Regular exercise has actually been shown to slow the rate of decline in some
Alzheimer’s patients. Appropriately used, it also helps with stiffness and arthritis. It
decreases depression and helps with sleep disturbances.
Medications should be minimized. Ask the patient’s physician to review and make
suggestions for reducing them. For example, as a patient loses weight, they may no
longer need the same dose of blood pressure or diabetic medications. When they
become bed or chair bound, Alzheimer’s medications may no longer be needed. If all
medications come from a single pharmacy, the pharmacist can check for interactions
and advise of any side effects. The components of good health for an Alzheimer’s
patient are the same as for any other adult and should be taken as seriously.
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BATHING
For some caregivers, bath time is the most difficult part of the day. The key is to try to reduce
anxiety by staying calm, creating a warm environment and making bathing a part of the
regular routine. To do this, stay as close to the patient’s old routine as possible, and keep it
as close as possible to the same time each day in the same sequence of activities. If the bath
is after dinner and before bedtime, this will feel right to the patient and become more
acceptable. They will be more likely to resist if the bath time is changed. Pick a time that is
both convenient for the caregiver and close to the patient’s old routine, and stick to it.
Get ready for the bath. Remember that Alzheimer’s patients are frequently cold
sensitive. Warm the room and have a supply of towels on hand, as well as a large bath
sheet or flannel blanket for after the bath.
Keep it simple. Use one-step commands, and go slowly.
Do not discuss whether a bath is needed. Remember that your loved one’s shortterm memory is most affected by the dementia. Don’t tell them at dinnertime that you
want them to take a bath after dinner. They may automatically react negatively because
they are being asked to remember something they know they will not remember. If your
loved one tells you, “I don’t need a bath”, avoid arguing about the last time they had a
bath. They do not remember the last time they had a bath, and your reminder will only
make them feel worse. Instead, try preparing the bath before making any mention of it
to your loved one. Say, “I have your bathwater ready”. If they refuse, hand them a towel
and ask them to undress. They may still be upset, but their fixation may turn to the
buttons instead of the bath. Playing music or singing may also be helpful distractions.
Give simple instructions and allow time for response. Start with the top half of the
body first. Have a towel ready to drape over their shoulders after their clothes are
removed, then move to the shoes and finally to the bottom half of the body. Have
another towel ready to drape over the lower half of the body. This preserves privacy as
well as provides warmth.
While bathing your loved one, speak reassuringly. If the patient is resistant to
bathing, try to determine why and adjust the process accordingly. For example, if they
are afraid of the tub, use the shower. If they hate being cold, make the room warmer
and undrape them a little at a time.
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DRESSING
Always use the same routine. Dress at a specific time of day and in the same way.
For example, always dress after breakfast and dress the upper body first, followed by
the lower body. If the patient can assist, hand them articles of clothing in the same
order, one item at a time.
Make dressing a regular part of the day. If the patient is going on an outing during the
day, dress them for the outing when they are getting dressed for the day. Avoid changes
of clothing during the day unless necessary, due to soiling.
Limit choices to no more than two items. Too many choices are confusing and
frustrating. Try putting together outfits on the hanger to take the guesswork out of
dressing. Remove clothes that would not be seasonally appropriate from the closet to
avoid tempting the patient to select something unsuitable.
Pick your battles. If your loved one refuses to put on nightclothes before bed, allow
them to wear their day clothes. If they will only wear one specific shirt and pants, buy
several look-alikes. If they have on one blue and one black sock, but were able to dress
independently, take pleasure in the small victory.
Make this easy on yourself. Select clothing that is washable and doesn’t need ironing.
Maintain privacy and respect. Help the patient if necessary, using gesture and
encouragement when appropriate.
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EATING AND FEEDING
People with dementia who still have some meals alone may forget to eat, even if you
leave food in plain sight. They may eat spoiled food, hide food or try to eat frozen food.
People with dementia typically have one of two reactions to eating. They either think
they haven’t eaten just moments after eating, or they insist they’ve already eaten when
in fact they have not. A poor diet can worsen confusion, so it is of utmost importance to
ensure your loved one continues to eat.
Prepare the area for feeding. Make sure the food, the plate and the table are
contrasting colors to ensure your loved one can tell them apart. Keep a supply of
napkins and a damp washcloth handy.
Place the patient in an upright and comfortable position. Check that the patient’s
mouth is empty. Cover the upper body with a towel or large bib. When possible, let your
loved one eat with others to increase the pleasure of socialization and to enforce the
action of eating.
Consider the patient’s preferences and past eating habits. Construct a meal that
includes foods they enjoy. If they can feed themselves, encourage them to do so.
Arrange the food so they can reach all the items on the plate. If they seem confused by
too many items on the plate, give them one item at a time. Serve liquids last if the
patient tends to fill up on them.
Observe the patient at mealtime. Do they seem fearful? Maybe they think the food is
poisoned. Are they embarrassed by their clumsiness with the silverware? Perhaps a
special fork would be helpful. Do they spill a lot? Pureed foods might eliminate this
problem. If your loved one likes to wander and you have trouble getting them to sit down
for a meal, give finger foods they can eat while walking around.
Watch for difficulty swallowing or holding food in the mouth. As Alzheimer’s
progresses, the patient may eventually forget to swallow. When this occurs, use very
small bites of soft foods and clean out the mouth after meals to avoid aspiration. At the
very end stages, when no foods are consumed, substitute the comfort of personal
interaction at the bedside and good mouth care for meals.
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WANDERING
Wandering is a common behavioral symptom of dementia. Wandering patients have an
overwhelming need to be able to move around. They should be allowed as much
freedom as safety will permit. However, it is important to pay close attention to safety
concerns such as the potential for falling and getting lost.
There are many different reasons that a person may wander.



A change in living situation, like a move to a facility or a family member’s
home.
An attempt to communicate a feeling like restlessness or boredom.
An attempt to communicate a need like the need to exercise, use the restroom
or eat.
Try to determine if there is a reason for the wandering. Your loved one may be looking
for someone or something. They may feel as if they need to go somewhere, either to
work or to visit someone. If you are able to discover why they wander, you may find the
right words to calm and reassure them.
People who wander inside the house can be made safer by placing locks on the exterior
doors and removing obstacles and rugs in their usual paths. Wanderers are usually
seeking an exit to the outside, and therefore need careful supervision. Car keys should
be out of sight, and doors locked in such a way they cannot circumvent. There are
several different tools families can use, such as door posters that mock the image of a
bookshelf, childproof door handles or locks in unusual places on the door. A stop sign or
a “do not enter” sign may be sufficient to remind some people to turn around.
There are also devices available which can help locate a wanderer who manages to
escape. Covenant Alzheimer’s Services offers a program called Project Lifesaver that
can assist in locating a person in the event that they wander from home. The Project
Lifesaver transmitter uses a radio frequency to pinpoint the exact location of your loved
one. For more information about this program, please contact Covenant Alzheimer’s
Services.
There are no medications that will stop wandering, and those that attempt to only serve
to increase confusion and unsteadiness – likewise increasing the danger of falling. If
your loved one begins to wander, have peace of mind in knowing wandering behavior is
typically only a stage of the disease. No one can say for sure how long your loved one
will continue to wander, but at some point they will stop.
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Section VI: Medications
67
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BEHAVIORAL MEDICATIONS
Medications for behavior should only be prescribed if the behavior is causing strain for
the patient or the caregiver, and if other measures and reassurances are not effective.
These medications fall into two general categories – tranquilizers and antipsychotics.
When the behavior is disruptive, it is helpful to try to understand the reason for it. This
will help to determine which medication will be most effective.
If the reason for the behavior is fear due to delusions or hallucinations,
antipsychotics may be prescribed – because tranquillizers can make the patient feel out
of control without addressing the delusions, causing additional fear.
If the reason for the behavior is pain or discomfort, the pain symptom should be
addressed before adding other medications geared toward behavior modification.
If the reason for the behavior is worrying or difficulty sleeping, a tranquilizer may
be prescribed.
TRANQUILIZERS are used for restlessness and resistance.
Diazepam (Valium) is a particularly long-acting medication, which relaxes muscles and
sedates the patient. A low dose once or twice a day is the usual regimen. Because it is
long-acting, it may accumulate after days or weeks, causing increased confusion and
lack of coordination.
Lorazepam (Ativan) works much in the same way as Diazepam, but acts more quickly
and wears off more quickly. It is less likely to accumulate in the body and cause
increased confusion or lack of coordination over time.
Oxazepam (Serax) is a drug in the same class as Diazepam and Lorazepam and works
much the same way. It too, is less likely to accumulate than Diazepam.
It is not uncommon for tranquilizers to have the opposite of their intended effect when
used for Alzheimer’s patients – because the brain of an Alzheimer’s patient works
differently than that of a healthy person. If this occurs, talk with your loved one’s
physician.
ANTIPSYCHOTICS are used for hallucinations, delusions, aggression, agitation,
hostility and uncooperativeness.
There are many antipsychotics, and they all fall into several different categories.
Among these medications are: Aripiprazole (Abilify), Risperidone (Risperidal), Clozapine
(Clozaril), Quetiapine (Seroquel), Haloperidol (Haldol), Ziprasidone (Geodon),
Olanzapine (Zyprexa).
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Antipsychotics should only be used if the behavior presents a danger to the patient or to
others, if the patient is experiencing persistent distress or is unable to receive care due
to the symptoms. They should not be used to sedate or restrain the patient over a period
of time.
In June 2008, the Federal Drug Administration issued a warning stating the use of
antipsychotics is not recommended in the elderly and demented due to an increased
risk of death. Individual decisions about the use of these drugs will be made by your
physician based on knowledge of the patient, urgency of the situation and effects of the
medication.
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ALZHEIMER’S MEDICATIONS
At this time, there are no medications that can reverse or cure Alzheimer’s disease.
However, there are two classes of medications reputed to improve functioning, at least
temporarily. Cholinesterase inhibitors given early in the progression of the disease
can sometimes delay or prevent progression of symptoms for a time by stopping the
breakdown of the neurotransmitter acetylcholine. Acetylcholine helps the nervous
system function better, and memory and cognition seem to improve. There is only one
medication in the second class, Memantine. It is prescribed for treatment of moderate
to severe Alzheimer’s disease to delay progression of symptoms for a few months.
Those patients who respond to any of these medications may delay the progression of
symptoms for 6 to 12 months. About 50% of patients respond to Alzheimer’s
medications.
When deciding whether to try these medications, speak with a physician who can
advise you about which, if any, might be helpful to your loved one. Physicians usually
start medications at a low dose to evaluate how well the patient tolerates them.
Dosages will be increased if tolerated and beneficial. At higher doses, the incidence
of side effects increases, so close monitoring is key.
The following page shows a chart of typical Alzheimer’s medications, how they work,
and common side effects.
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ALZHEIMER’S MEDICATION CHART
Generic
Donepezil
Brand
Aricept
Approved For
All stages
Galantamine Razadyne
Mild to moderate
Rivastigimine Exelon
Mild to moderate
Tacrine
Cognex
Mild to moderate
Memantine
Namenda
Vitamin E
N/A
Ginko biloba
N/A
Moderate to
severe
Not approved
(mixed
evidence)
Not approved
(limited data)
Side Effects
Nausea, vomiting, diarrhea, loss
of appetite, insomnia, muscle
cramps, dizziness, headache,
fatigue
of appetite, indigestion, dizziness,
headache, insomnia, depression,
fatigue
of appetite, indigestion, dizziness,
headache, insomnia, confusion
Possible liver damage, nausea,
vomiting, diarrhea, loss of
appetite, indigestion, muscle pain,
dizziness, confusion, insomnia
Headache, constipation, diarrhea,
confusion, dizziness, cough
Misc.
May take with
or without food
Take with food
Take with food
Rarely used;
replaced by
safer drugs
May take with
or without food
Nausea, diarrhea, headache,
fatigue, bleeding
Swallow whole
Nausea, vomiting, diarrhea,
headache, dizziness, weakness,
bleeding/hemorrhage
Use with
caution
ADDITIONAL TREATMENTS FOR NONCOGNITIVE SYMPTOMS
Drug Class
Used For
Side Effects
Drowsiness/sedation, extrapyramidal symptoms
(tremor, slurred speech, involuntary movement
disorders, anxiety, paranoia), abnormal gait,
worsening cognition, increased risk of stroke
Antipsychotics
Psychosis and
disruptive behaviors
Antidepressants
Poor appetite,
insomnia,
hopelessness,
withdrawal, suicidal
thoughts, agitation,
anxiety
Drowsiness/sedation, fatigue, nausea, sexual
dysfunction, insomnia, dry mouth, urinary retention,
constipation, blurred vision
Benzodiazepines
Anxiety, agitation, and
aggression
Drowsiness/sedation, disorientation, confusion,
motor impairment
Psychosis and
behavioral
disturbances (agitation,
aggression)
Dizziness, drowsiness, lethargy, nausea, headache,
muscle or movement disorders
Anti-seizure
(carbamazepine)
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OVER-THE-COUNTER MEDICATIONS FOR ALZHEIMER’S DISEASE
Consult your loved one’s doctor before starting any medication, including over-thecounter (OTC) medications. There can be problems with OTC or alternative
medications. First, there is no evidence they are effective or that the sources provide
standard doses or standard purity. Additionally, dietary supplements are not subject to
regulation or oversight, which means there is no mechanism for monitoring bad
reactions. Most importantly, there is a risk they may have an adverse interaction with
other supplements or prescribed medication.
Vitamin E
One large study showed slightly delayed progression of Alzheimer’s disease with the
addition of Vitamin E in relatively high doses. Treatment with Vitamin E should only be
undertaken with a physician’s supervision, due to the possibility of drug interactions
leading to bleeding problems.
Coral Calcium
Manufacturers have marketed this substance as a cure for a number of different
diseases. It is different from other calcium supplements in that there are trace elements
incorporated by the coral while it was alive. There is no evidence supporting any health
benefits from this form of calcium. If you need to take calcium supplements, choose a
standardized purified formulation, prepared by a reputable manufacturer.
Ginko Biloba
There is a study underway to determine whether Ginko Biloba is helpful in the
prevention or delay of onset of Alzheimer’s disease. It is currently being used in Europe
for a number of neurological diseases. In a small study, some participants showed
modest improvement in activities of daily living and social behavior. Side effects are few.
The most important problem is an increase in danger of bleeding due to interaction
between Ginko Biloba and blood thinners.
Huperzine A
This substance is similar in action to the cholinesterase inhibitors – and, in small studies,
has been proven to be similarly effective to the conventional medications. It is currently
sold as a dietary supplement and is therefore unregulated, with no standards for dosages
from pill to pill. It is not recommended to be taken with the standard medications, due to
increased risk of side effects.
Omega-3 Fatty Acids
These substances have been shown to be helpful in the reduction of coronary artery
disease. There is a theoretical benefit for neurological diseases, but this has not been
studied. It will be a priority for further research.
Before starting any OTC regimen, be sure to discuss it with a physician.
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SLEEPING MEDICATIONS
Sleep disturbances are a frequent complaint of Alzheimer’s patients. Your loved one
may doze during the day and wander at night, or they may become increasingly
confused and fearful at night. All other measures should be attempted before using
medication for these symptoms.
Try to figure out why the behavior is occurring before using a sleeping pill. Daytime
dozing should be limited when possible, and appropriate exercise may increase daytime
wakefulness and induce normal fatigue. For evening confusion, make sure that the
lighting is adequate and people are present to comfort the patient. If evening confusion
is the chief problem, and preventative measures are not effective, explore other
medications before turning to sleep aids.
Though effective for non-Alzheimer’s patients, sleeping pills are usually not a good idea
for people with dementia. They are frequently associated with increased confusion and
unsteady gait, causing falls and hospitalizations. Your primary physician can assess the
patient to make the ultimate determination. If a sleep aid is necessary, a low-dose
antidepressant taken before bedtime may be most effective with the least number of
undesirable side effects.
Consult your loved one’s physician before starting any new medication
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Section VII: Legal Issues –
Final Wishes
75
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LEGAL ISSUES
By John B. Carr, Attorney at Law
When providing care to a person with Alzheimer’s, there is a lot to learn about elder law
and advance directives. This article outlines some of the basic principles. If you have
any questions, we recommend you speak with an elder law attorney who may be able to
give you advice specific to your situation.
Before we begin, here are some key definitions to keep in mind:
Terminal Condition means a condition caused by injury, disease or illness from which,
within a reasonable degree of medical certainty, there can be no recovery and which
reasonably can be expected to cause death; or a persistent vegetative state
characterized by a permanent and irreversible condition of unconsciousness in which,
within a reasonable degree of medical certainty, there is the absence of voluntary action
or cognitive behavior of any kind and an inability to communicate or interact purposefully
with the environment.
Life-Prolonging Procedure means any medical procedure, treatment or intervention
which utilizes mechanical or other artificial means to sustain, restore or supplant a
spontaneous vital function and, when applied to a patient in a terminal condition, serves
only to prolong the process of dying. The decision whether a treatment is life-prolonging
depends upon your circumstances and will be made by your attending physician.
Hydration and nutrition may be considered life-prolonging procedures if administered
through an invasive medical procedure. Comfort medication is never a life-prolonging
procedure.
LIVING WILL
What is a living will? The living will is a document you can prepare when you are
competent, which sets out your care preferences if you become incapable of making
medical decisions and suffer from a terminal condition.
In a living will you can:



Indicate a person to carry out your wishes.
State what types of life-prolonging procedures you would want or not want,
including the type circumstances under which you would want these
procedures used, withheld or withdrawn.
Discuss other issues, which may be important to you if you become terminally ill;
for example, the role your religious preferences will play in care decisions.
How do you prepare a living will?
You might want to talk to your attorney before you complete a living will. The living will
must:
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
Be in writing.

Be signed by two witnesses (one who is not a spouse or blood relative) who
know your identity, know you are competent to sign the living will and are aware
of what you are signing.

Address terminal illness and life-prolonging procedures.
Anyone can prepare a living will, but you must be a capable, competent adult in order to
sign the living will. Your family cannot sign one for you. You can and should designate
someone in your living will to carry out its terms. This person is called a surrogate.
What will a living will do?
Preparation of a valid living will and delivery to your health care provider is best
assurance that:

If you become incapable of giving your informed consent for medical decisions;
and two doctors certify that you are in a terminal condition, then your wishes as to
life-prolonging measures will be carried out.

Except under certain circumstances as set out by law, your family cannot override
your wishes. Your doctor cannot override your living will and could transfer you to
another physician if he feels he cannot comply with your wishes. However, bear
in mind that you cannot authorize someone to commit euthanasia or assist you in
committing suicide under a living will.
A living will is not effective until it is delivered to your healthcare provider. That
responsibility belongs to you. Remember to whom you have delivered copies so that if
you amend or revoke your living will, you can recover all copies.
What if I decide I don’t want a living will?
You may revoke your living will:

By means of assigned, dated writing;

By means of the physical cancellation or destruction of the declaration by the
declaring or by another in the declaring’s presence and at the declaring’s
direction;

By means of an oral expression of intent to revoke; or

By means of subsequently executed living will that materially differs.
Any such revocation will be effective when communicated to the attending physician. No
civil or criminal liability shall be imposed upon any person for a failure to act upon a
revocation unless that person has actual knowledge of such revocation.
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What will happen if you don’t have a living will?
If you do not have a living will, your health care provider can appoint a proxy to make
your life-prolonging decisions. Also, if you have appointed a health care surrogate, and
have not specifically restricted the authority of the surrogate, the healthcare surrogate
can make life-prolonging decisions.
Remember that this is an important document and should be prepared only with a great
deal of forethought on your part. If you have any questions about the contents of a living
will or the meaning of its language, you may wish to confer with your family, friends,
attorney, healthcare providers, spiritual advisor or others.
HEALTH CARE SURROGATE
What is a health care surrogate?
Florida law permits you to name a surrogate health care decision maker to make your
medical decisions if you are not able to give informed consent. While you must name a
health care surrogate while you are capable of making medical decisions, the health
care surrogate does not assume responsibilities until such time as you become
incapable of making your medical decisions.
How do I designate a surrogate?
Your declaration must be in writing, signed by two witnesses. Only one witness may be
someone who is a spouse or a blood relative. Your named surrogate cannot be a witness.
Your health surrogate is presumed to make all of your medical decisions, including lifeprolonging decisions, except if there is a living will. If you wish the authority of your surrogate
to be limited, you must so specifically state in the health care surrogate form.
When is a surrogate used?
Your declaration only becomes effective when your attending physician determines that
you do not have the capacity to make health care decisions. You do not need a judge to
declare you legally incompetent in order for your health care surrogate to make your
health care decisions. If you become incapable of making medical decisions, a second
physician will examine you. The results of the two examinations will be placed in your
records.
Upon determination of your inability to make medical decisions, your health care
surrogate will be notified that he/she should assume responsibility for making your
medical decisions. If you regain competency, your health care surrogate ceases to act
on your behalf.
What can my health care surrogate do?
 Review your medical records

Consult with your health care providers

Give medical consent

Apply for medical benefits on your behalf
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What can’t my surrogate do?
 Electroshock therapy

Sterilization

Psychosurgery

Voluntary admission to a mental hospital

Withhold life-prolonging procedures if you are pregnant
What if I don’t have a health care surrogate?
In the event you do not name a health care surrogate and you are a resident in a health
care facility, or your health care surrogate is not able to act on your behalf, the facility
can obtain a person willing and competent to act as your health care proxy.
DURABLE POWER OF ATTORNEY
What is a durable power of attorney?
Florida Statutes permit a durable power of attorney. It is a document that specifies
exactly the powers which you are giving to the person holding the durable power of
attorney. This may include, but is not limited to, arrangement for and consent to medical,
therapeutic and surgical procedures, including the administration of drugs. Durable
powers of attorney can also relate to things such as transfer of property, borrowing
money, handling bank accounts, etc.
How do I designate a durable power of attorney?
There is no set form for a durable power of attorney. The document should specify the
date that it becomes effective. In order for a durable power of attorney to remain
effective should you become fully incompetent, it must include language which states
that it is not affected by your disability, except as provided by statute. You may use any
words so long as the intent is clear.
Who can hold a durable power of attorney?
Under Florida law, you can name any adult you choose to act as your agent under a durable
power of attorney. This need not be a family member but should be a person who knows
your wishes. If the person is related to you, you must so state in your power of attorney. Once
you have prepared a power of attorney, the person holding the power of attorney cannot
delegate therapeutic or surgical procedures for the principal, including the administration of
drugs; the agent must attempt to carry out the wishes of the person.
Does a durable power of attorney expire?
Your durable power of attorney expires:

At the time you die.

At the time you revoke the power.

If you are adjudicated “incompetent” by a court of law.

Note: If a petition is filed to determine your competency, the durable power of
attorney will be temporarily suspended.
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GUARDIANSHIP
Florida has very detailed guardianship laws. Filing should be done by an attorney. In
order to have a guardianship appointed for a person, the following steps must be taken:

A petition must be filed with the circuit court to determine your incapacity.

A petition must be filed to appoint a guardian.

A budget and care plan must be prepared.

The guardian must make periodic reporting.
You will have an attorney appointed to represent your interests.
You will be examined by a panel of three to determine the scope of your incapacity. The
costs associated with the guardianship may be borne by your estate, if you have
personal property.
When a guardian is appointed to handle your affairs, the power of that guardian may
encompass all of your decision-making power or may be limited in power, as determined
by law. A guardian will be under limited supervision of the court and must explain to the
court from time to time how your decisions are being made and how your assets are
being handled. Upon appointment of a guardian, the court will determine whether a
valid advance directive exists. The court may, in its discretion, specify in its order of
guardianship what authority, if any, the guardian shall have over surrogate and the court
may order revocation of the advance directive.
There are also guardianship rules which are designed to handle emergency treatment
decisions.
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ELDER LAW IN ALABAMA
By Amanda C. Hines, Esq.
DURABLE POWER OF ATTORNEY (POA)

A power of attorney that designates an attorney-in-fact in writing that contains the
words “this power of attorney shall not be affected by disability, incompetency or
incapacity of the principal” or similar words that show it is the principal’s intent
that the authority conferred by the POA shall be exercisable despite the
principal’s subsequent disability, incompetency or incapacity.

All acts done by agent pursuant to a durable power of attorney during any period
of disability, incompetency or incapacity will have the same effects and inure to
the benefit of and bind the principal, his successors and assigns so be careful
who you trust.

Safeguard: Name more than one person.

Attorney-in-fact has fiduciary duties.
Revocation and Termination of POA

Terminates at death so long as there is actual knowledge of the principal’s death.

May be revoked in writing.

Can be revoked by a court of competent jurisdiction.
Having a durable power of attorney avoids the need for guardianship and
conservatorship in most cases.
ADVANCE DIRECTIVE FOR HEALTH CARE
Living Will and Health Care Proxy Designations
 Any competent adult over the age of 18 may execute a living will directing the
providing, withholding, or withdrawal of life sustaining treatment and artificially
provided nutrition and hydration.

Any competent adult over the age of 18 may execute a living will that includes a
written health care proxy designation appointing another competent adult to make
decisions regarding the providing, withholding, or withdrawal of life sustaining
treatment and artificially provided nutrition and hydration.

A living will and/or health care proxy designation may be revoked at any time by
doing either of the following: (1) destroying document in a manner indicated intent
to cancel, (2) by written revocation signed and dated by the declarant or (3)
verbal expression of intent to revoke made by the declarant to a competent adult
over the age of 18 who signs and dates a writing confirming the revocation.
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Advance Directive for Health Care (i.e. living will and/or health care proxy
designations)
 Must be in writing.

Must be signed by declarant and include the written acceptance of the named
health care proxy or proxies (may be by another person in the declarant’s
presence and by the declarant’s express direction).

Must have two independent witnesses age 19 and older.

Declarant is responsible for providing a copy of the advance directive for health
care to his or her attending physician or other health care providers providing
services to the declarant.
The advance directive for health care becomes effective when:
 Attending physician determines one can no longer understand, appreciate, or
direct medical care; and

Two physicians, one being the treating physician determines the following:
Terminal illness or Permanent unconsciousness.
GUARDIANSHIP AND CONSERVATORSHIP
Upon the filing of a petition with a court of competent jurisdiction, the court can appoint a
guardian and/or conservator over a person who the court determines to be incompetent.
This can become very expensive.
A guardian is responsible for the health, support, education and/or maintenance of an
incapacitated person.
Who may serve as a guardian:
Unless for good reason shown to the court, the court shall appoint a guardian in
accordance with the incapacitated person’s most recent nomination in a durable power
of attorney.
Otherwise the following are entitled to a consideration for appointment in the order listed
below:
 Spouse

An adult child

A parent

Any relative with whom the incapacitated person has resided for more than 6
months of prior to filing complaint

A person nominated by the person who is caring for or paying for the care of the
incapacitated person
A court of competent jurisdiction can appoint a conservator to be responsible for the
estate and affairs of a person it determines to be incompetent to manage his/her own
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property and/or business affairs.
Who may serve as a conservator and the conservator’s obligations:
The court may appoint an individual or a corporation with general power to serve as
trustee over one’s estate. The following are entitled to consideration for appointment in
the order listed below:
 A conservator, guardian of property or other fiduciary appointed by an
appropriate court of another jurisdiction

An individual or corporation nominated by the protected person who is age 19 or
older and of sufficient mental capacity

The protected person’s most recent nomination under a durable power of
attorney

Spouse

An adult child

A parent

Any relative with whom the incapacitated person has resided for more than 6
months of prior to filing complaint

A person nominated by the person who is caring for or paying for the care of the
incapacitated person

A general guardian or sheriff for the county who must be appointed and act as
conservator when no other fit person files a petition for appointment
The appointed conservator must post a bond to be determined by the court and based
on the size of the protected person’s estate. The appointed conservator must provide an
accounting of the estate upon his/her termination or removal and at least once every
three years.
A conservator can be personally liable for any obligations or torts arising out of or
committed in the course of administering the estate if the conservator is personally at
fault. In most cases, a Power of Attorney can avoid the expensive process of
Guardianship and Conservatorship.
Guardianships and/or Conservatorships are terminated upon one of the
following events:
 The death of the ward

A court of competent jurisdiction determines the guardian/conservator to be
incompetent, or

The guardian or conservator resigns or is removed by the court.
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ALZHEIMER’S DISEASE CHECKLIST
As the disease progresses, the Alzheimer’s patient will not be able to care for financial
matters or make sound decisions. Primary caregivers should review and complete the
following checklist:
 Legal Issues – Contact an attorney for advice regarding Durable Family Power
of Attorney, Health Care Surrogate and Living Will. Check local laws if power of
attorney was issued in another state.
 Finances – Designate a person to assume responsibility for financial matters.
o Checking Accounts (bill payments, etc.)
o Savings & Other Accounts (money market, etc.)
o Real Estate and Property (location of deeds, etc.)
 Will – Make sure it is current. Check state laws if transferring from another state.
 Living Will – Locate or create to review your loved one’s wishes.
 Safety Deposit Box – Find the keys to and designate a co-signer for access.
 Bills – Make a list of all bills to be paid if the patient remains at home.
o Electric
o Mortgage
o Phone
o Sewer/Water
o Outside Care
o Other
 Insurance Policies – Locate the following:
o House
o Car
o Medical
o Life Insurance
o VA
o Disability
 Waiver of Premium – Check for clause on insurance policies.
 Driving – Decide when the patient can no longer safely operate a motor vehicle.
 Social Security Insurance
o S.S.I. Check – Residence or Direct Deposit.
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o Designate Representative Payee.
o If under 65, apply for Social Security Disability.
 Security Box or Safe – Locate key or learn combination.
 End-of-Life Arrangements – Be aware of arrangements for cemetery plot,
funeral, etc. If none have been made, ask about wishes regarding burial or
cremation.
 Autopsy Arrangements – Florida Brain Bank.
 Medical History – Keep on file, along with medication names and dosages.
 ID Bracelet – Purchase for the patient in case of wandering behavior.
 Respite Care – Find available resources to give yourself the time you need.
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Section VIII: Living Environment
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MOVING YOUR LOVED ONE INTO YOUR HOME
Your loved one’s disease is getting worse, and you realize they can no longer live on
their own. What do you do? Do you move in with them? Do they move in with you? Is it
time to look at an assisted living facility? This is one of the hardest moments you will
face as a caregiver, and a big decision for everyone involved.
If you are thinking of moving your loved one into your home, there are many things to
consider, including lifestyle changes, role changes and relationship changes. There are
also emotional issues to consider, and these are often the most difficult to work through.



Do you have an open and honest relationship with this person?
Have you been able to resolve past differences?
Are there any unresolved issues?
If you are emotionally prepared, next you must consider the living arrangements.





Is there enough room in your home for everyone to be comfortable?
Will everyone be able to have privacy?
Is the house safety proofed? What modifications might be necessary?
Can you personalize the portion of the house your loved one will utilize or share?
Will wandering be a problem? Can you identify “danger zones”?
Finally, you will need to consider the financial issues associated with having an extra
person in your home.





What new expenses will you have?
Does your loved one have insurance coverage to pay for these expenses?
Do your siblings understand and will they participate in the financial matters?
Will your spouse and other family members support your decision?
If assistance is needed, what arrangements can be made?
There will, of course, be changes to your daily routine. If your loved one will be living in
your home, you or another family member will be their primary caregiver. Dementia
patients can look and act like they are capable of taking care of themselves, but they
may need more assistance than you anticipated. Spend quality time with your loved one
beforehand to make sure you are capable of handling their needs.



Will you be available to take them to medical and other appointments?
Can you oversee the feeding, bathing, dressing, supervising, etc. that may come
with the advanced care of your loved one?
Will you and other family members feel comfortable providing this daily care?
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If you have resolved these issues, you should take into consideration the feelings of
other family members who do not live with you, but are concerned about the well-being
of your loved one. Discuss such a move with siblings and other relatives, and ask for
their support. You will want to know if they agree with the decision or if anyone is upset
or unhappy about it. Ask if anyone is willing to share in caregiving and if they will
occasionally provide a break for you. Talk with your children. If you have young children
or grandchildren living in your home with you, make sure they understand the effect this
may have on them.


Will they feel comfortable with the new living arrangement?
Will they help out with extra responsibilities that may become necessary?
It’s just as important for your children to be supportive as for other adult relatives.
Providing care for a loved one in your home adds to the stress of daily life. Encouraging
family members to become part of a caregiving team is one of the best ways to
minimize stress.
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CREATING A SAFE ENVIRONMENT
For people with memory loss, the home can be a safe haven – or it can be confusing
and dangerous. Here’s how to create a living space that is safe and secure for your
loved one.
Focus on Prevention
 Try to prevent problems before they happen, but remember that some accidents
are unavoidable.

Allow plenty of time. Accidents may happen if your loved one is rushed.

If the person smokes, supervise cigarettes and matches.
Use Safety Devices
 Put gates at the top of stairways and secure banisters.

Install safety latches or locks on cabinets where dangerous items such as knives
and cleaning products are stored.

Put guards around radiators and other heaters.

Use safety covers for doorknobs to prevent wandering.
Keep Things Simple
 Keep the environment simple and consistent. Don’t rearrange furniture unless
necessary.

Remove all unnecessary furnishings and clutter, including knick-knacks.

Keep often-used items in the same place.

Put away items that may cause confusion.
Remove Hazardous Items
 Check all household items for potential dangers. Lock up or remove medications,
cleaning supplies and insecticides.

Remove poisonous houseplants.

Put small objects (which may be swallowed) out of sight, and lock up all sharp items.

Lock up or remove firearms.

Put appliances and tools, such as razors, hair dryers and sewing machines in a
safe place.

Secure outdoor appliances such as power tools and lawn mowers.

Make sure electrical cords are secured and cannot be tripped over.
Provide Good Lighting
 Use lamps that won’t knock over.

Put nightlights in bathrooms, hallways and bedrooms.
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
Provide lighting that can be reached and turned on and off easily.
Secure the Kitchen
 Remove stove and oven knobs when not in use or check with the gas company
or an electrician about the best way to make your stove temporarily inoperable.

Remove or lock up all sharp knives.

Put away kitchen appliances such as blenders, toasters and coffee makers.
Safeguard the Bedroom
 Clear closets and drawers of clutter.

Remove or fasten down area rugs to prevent slipping in the night.

Make sure there is a clear path to the bathroom.
Create a Safe Bathroom
 Remove all items in the bathroom except essentials such as soap, towels,
toothbrush and toothpaste.

Use non-slip decals or mats in the tub and shower. Try a color that blends with
the tub to prevent confusion.

Install grab bars in the shower or tub and around the toilet.

Try a bathtub bench or a hand held shower.

Use non-skid rugs or mats to prevent slipping on a wet floor.

Make sure the temperature gauge on the hot water heater is turned to low (140
degrees or lower) to prevent scalding.
Lock Doors and Windows
 If the person wanders, put latches higher or lower than eye level on doors and
windows.

Try a strip of yellow or red safety tape or hang a sheet across doorways to
discourage wandering.

Make sure the person cannot lock himself in a room.
Prepare for Emergencies
 Have a plan for fire and other types of emergencies, including hurricanes.

Keep recent photos handy to assist the police in case the person wanders off.

Have the person wear an ID bracelet or some other form of identification.

Don’t leave the person home alone – even for a few minutes – if he or she can’t
respond to an emergency situation.

If your patient is a wanderer, contact Covenant Alzheimer’s Services to
determine if a Project Lifesaver transmitter would be appropriate.
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UNDERSTANDING THE TYPES OF ADULT LIVING ENVIRONMENTS
As a caregiver for someone who has Alzheimer’s or dementia, the time may come when you
start thinking about placement for your loved one. Matching your loved one’s abilities with the
right facility is often the hardest part of the process. There are three major types of facilities
that you will find as you look around your area: Nursing Homes, Assisted Living Facilities,
and Independent Living.
Before deciding on which facility would be best for your loved one, have an honest talk with
yourself and your doctor about your loved one’s self-sufficiency. Most facilities will use the
term ADLs (Activities of Daily Living) to determine cost and care needs. They are looking to
see if the individual is able to do most of the things we do on a daily basis, especially in terms
of self care such as feeding, bathing, dressing and grooming.
Nursing Homes (Also Known As Skilled Nursing Facilities)




The term “nursing home” seems to make many people feel uneasy, but in fact,
they can often give the best, most comprehensive care for a person with
Alzheimer’s or dementia.
Nursing homes may cost more than assisted living facilities, but they also offer
more acute care for their patients. They typically have a registered nurse on the
grounds at all times and can provide a high level of care to those who are unable
to perform most ADLs.
If your loved one has other chronic illnesses that require acute medical attention,
a nursing home may be the best selection.
Medicaid may help pay for long-term care if your loved one is eligible. Medicare
will help pay for this type of care or skilled nursing for a short period of time while
your loved one is recuperating from a major injury or illness.
Assisted Living Facilities (ALFs)



There are many different levels of assisted living facilities. The level of care an
assisted living facility can provide varies by the type of license they hold. Many
assisted living facilities can properly care for individuals who are unable to
perform any ADLs, and other assisted living facilities can only provide care for
individuals who need only mild assistance with ADLs.
Many ALFs have dementia or memory care units that offer dementia-related
activities and a secure, locked dementia facility.
Although some assisted living facilities have limited Medicaid beds or offer
predictable pricing, most will only accept private pay or long-term care insurance
and the cost may increase as the care needs increase.
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Independent Living (Also Known As Retirement Living)




Independent living is more like an apartment. It is best suited for someone who is
able to carry out all ADLs, but may not want to cook, drive or cut the grass anymore.
Independent living usually provides three meals a day, transportation to shopping
and doctor’s appointments, housekeeping and daily recreational activities.
Some people in independent living may still drive, and each apartment is usually
equipped with a kitchenette of some kind.
There is usually limited or no medical supervision.
To gain a better understanding of the facility, it is always a good idea to make an
unannounced visit prior to signing anything.
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CHOOSING THE BEST FACILITY FOR YOUR LOVED ONE
Once you have decided what type of facility is best for your loved one, it is time to start
researching individual locations. Start by obtaining a list of all local facilities so you know
the options in your area.

Give yourself plenty of time to look around and ask questions. Even if you’re
not quite ready to place your loved one, it never hurts to know where you want to
go in the event of an emergency.

Think about what qualities are most important to you. Does your loved one
need to be within close driving distance … does the facility need to be secure …
how do you plan to pay for care?

Ask how many people live there and what the costs are. Check if the price
increases as the care for your loved one increases.

Try to narrow your search down to your top three to five places. Make plans
to meet with a member of the admissions team.

While on tour, here are some things to look for and ask about:


o What is their certification?
o Is there a waiting list?
o Is there a strong odor (good or bad)?
o Do the residents look well cared for?
o How many staff per patient?
o Are activities offered?
o Is there a place for residents to go outside?
Once you’ve completed your initial visits, make a second unannounced visit.
Try another time or day of the week so that you can meet other staff.

When it’s time to make your decision, make sure that you understand the
contract with the facility.

It is never too early to be placed on a waiting list. If your loved one’s name
comes up and you are not ready to place them, their name will remain on the list
until you are ready or tell the facility to take you off the list.
Making the decision to place your loved one in a facility is difficult for everyone. If you
have been a full time caregiver, this will not be an easy transition for either of you. It
will take time and patience on your part, and the support of others who have been
there. If you are not already involved in an Alzheimer's Caregiver Support Group, this
may be a good time to join one.
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GUIDE TO INTERVIEWING AND INSPECTING A FACILITY
Is the facility state licensed?

What type of license is it and what is the date of the license?
Who owns the facility?

Is it run by a large corporation, for profit or non-profit?

Is it a religious-based facility?

Is it run by individuals?

Is it affiliated with other facilities in the area?
Finding out who is legally responsible and operates the facility helps you track down its
record and reputation. Some religious and non-profit homes will help subsidize payments.
What is the capacity?

How many residents live there?

On average, how long do residents live there?
Find a place that is close to capacity and where people have been residents for a long
period of time.
How many staff are employed at the facility?

Can you describe their positions?

How many aides do they employ? Are they certified nursing assistants?

What is the average length of employment?
Facilities that have a high turnover rate, too few staff per patient, or if the residents
appear to have quite a few needs, are probably understaffed and working with the
minimum number of aides required.

What type of training does your staff receive?

Could you please describe the needs of the current residents?

What percentage of patients are wheelchair bound, or need help with eating?
Good news if the staff is highly trained and able to help with different types of patients.
However, if these percentages are high, make sure there is a good staff-to-patient ratio
because these patients will need significant help in daily activities.
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What core services does the facility offer?

Meals:
o How many per day are included in the cost?
o Will you deliver to the patient’s room if they are sick?
o Is there a dietician overseeing menus?
o Can you accommodate my loved one’s special diet?

Daily Living:
o What kind of housekeeping is offered?
o What laundry service do you provide? Is there a cost?
o Do we need our own linens?
o How often is bedding changed?
o What personal belongings can my loved one bring?
o Do you provide assistance with bathing?
o What safety features are in the bathroom? Emergency call button?

Transportation:
o Is transportation provided? Where to?
o Is there a cost? How much?
Are there formal relationships with hospitals, clinics and nursing homes?






Will the facility automatically call me if my loved one is sick?
Is there a physician on call?
Can my loved one have their own physician?
Can we use our own pharmacy?
If my loved one is out for an extended period of time in the hospital or rehab
facility, do they keep the room and is there a lesser charge?
Do physical therapists, occupational therapists or speech therapists come
regularly to the facility or can this be arranged should my loved one need it?
What is the cost?
What social and recreational activities are offered?


May I see a copy of the latest activity calendar?
Are the activities varied in interest? Are they specific to dementia?
What safety features does the facility provide?




Are there handrails in the hallway?
Are there panic or call buttons in the room?
Is there air conditioning?
How does the facility protect wanderers?
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
What is the fire escape plan?
Financial Review:




What forms of insurance are accepted?
Is there a waiting list for admission?
What is the typical cost of an early, middle and late stage dementia patient?
Does the cost of care increase as the care increases?
What extra services are offered?



Is there a cost for telephone service? Would they have their own line?
Do they have a hair dresser on the premises? What is the cost?
Do they have a dementia-specific unit? If so, is it a locked unit?
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BEYOND PLACEMENT: MOVING FORWARD
Even once your loved one is settled in a facility, there are many new situations you may
have to work through. Realize it may take some time – not only for your loved one to
adjust to the new living situation, but also for you.
Routine is one of the most important parts of caregiving for an Alzheimer’s or dementia
patient. It may take some time for your loved one to adjust to new people performing
tasks differently than you, possibly at a different time of the day. The first two to three
months may be difficult for you both. Allow yourself time away. Set up a visiting
schedule to aid in the adjustment.
After placing a loved one in a facility, there are not only changes in routine but also in
the caregiver’s emotions. A multitude of feelings may occur including doubt, guilt, anger,
grief, sadness and finally peace. While working your way through these stages, there
are two major things to remember. One, you have your loved one’s best interest at heart
– and two, love yourself.
The decision to place a loved one in a facility is not usually something that a caregiver
takes lightly. A lot of time and effort occurs on behalf of the loved one to find the right
place. You have taken the time to research, visit, and finally make this step. Do not feel
guilty about making this transition. You care about your loved one. You want them to
have the best care and it is okay that you can no longer provide it.
Being a sole caregiver in a home environment often means you do not have time to
worry or care about your own needs. Once you have placed your loved one, you will
have more time to yourself. This is often scary for many people. You may have never
been without this person or have provided care for such a long period of time that your
whole life has revolved around caregiving. Do not feel guilty about caring for yourself.
You are still very much a part of your loved one’s world. Allow yourself time away to
take care of your own needs.
The process of transitioning to a facility is not easy, and there are still many hurdles you
may have to work through once the transition has occurred. You need a support system
on which you can lean when you’re having an especially hard day. You may want to
think about joining one of the Alzheimer’s Caregiver Support Groups provided by
Covenant Alzheimer’s Services, where you can talk to other people who understand
what it’s like to care for someone with Alzheimer’s or dementia.
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Section IX: Contributing To Our Mission
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WAYS TO SUPPORT COVENANT ALZHEIMER’S SERVICES
When deciding where to donate your dollars or time, keep us in mind.
YOU can give a priceless gift – the gift of care and compassion.
Covenant Alzheimer’s Services understands how Alzheimer’s disease can affect a
family’s emotional, physical and financial well-being. Through services, resources,
and education, we can help patients and their families cope with Alzheimer’s disease
and other forms of dementia. Our services include Project Lifesaver, Support Groups,
Educational Workshops, Volunteer Services, The Caregiver’s Handbook, Referral
Services and Memory Screens. Because these services are not reimbursed by
Medicare or other private insurance sources, we rely on donations, grants, memorials,
contributions and fundraisers.
By choosing to give to Covenant Alzheimer’s Services, you can impact those in
your community who are dealing with the impact of Alzheimer’s disease. 100% of
your gift will remain in the local area.
You can make a donation online at choosecovenant.org/alzheimers or mail your
donation to:
Covenant Alzheimer’s Services
5041 North 12th Avenue
Pensacola, Florida 32504
Your Donation at Work
$10 =
Pays for one copy of The Caregiver’s Handbook
$40 =
Funds three copies of The 36-hour Day, a resource book for caregivers
$60 =
Covers four Memory Screenings for people facing memory loss
$100 =
Provides 4 hours of group or individual counseling for family caregivers
$170 =
Pays for 10 hours of respite care to give a caregiver a break
$250 =
Pays for one three-hour caregiver training class for families and volunteers
$300 =
Buys one transmitter to be worn by a wandering Alzheimer’s patient
$500 =
Pays for one professional education seminar on dementia-related issues
103
VOLUNTEERING WITH COVENANT ALZHEIMER’S SERVICES
Volunteers support Covenant Alzheimer’s Services in many different ways, including
client and caregiver support; administrative and fundraising support; community
outreach and education.




Volunteers support clients and caregivers by telephone and through home
visits to assist with Project Lifesaver.
Volunteers who work in the office, represent Covenant Alzheimer’s in the
community, or have contact with clients and caregivers must complete an
application and screening process. Comprehensive volunteer training is
provided based on the type of assignment the volunteer will fill.
Volunteers choose the amount of time they are able to give and a schedule
that fits their own.
Volunteers are also needed to support Covenant Alzheimer’s with fundraising
events. No screening or training is required.
Caregivers, family and friends whose loved ones have lived with Alzheimer’s and
dementia understand how heavy the load can feel. People often express their desire
to give back to Covenant Alzheimer’s Services. When the time is right, you may
decide to become our volunteer – to lighten the load a little bit for someone else.
To find out more or to sign up for training, please contact the Covenant Alzheimer’s
office at (850) 478-7790.
104
COVENANT ALZHEIMER’S SERVICES WISHLIST
Big Wishes





Staff Development Funds-Conferences, Trainings
Social Work Consult Program Funding
Early Onset Program Funding
Support Group Facilitator/Volunteer Recognitions
Educational Webinar Hosting
Medium Wishes


Rotating brochure/pamphlet rack
Promotional Items
Small Wishes




Copies of the book The 36-Hour Day by Nancy L. Mace and Peter V. Rabins
Office Materials:
-Letter-sized (8.5 X 11”) copy paper
-Card Stock
-Manila Folders
Stamps or funds to defray postage costs
Materials for Project Lifesaver Volunteer Kits:
-Child Scissors
-Alcohol wipes
-Plastic pencil boxes
105

covenant alzheimer`s services patient and family handbook

Transcription

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