Caregiver Guide Series:
Alzheimer’s Disease
and Dementia
A guide to helping you better MANAGE
THE CHALLENGES AND RESPONSIBILITIES
OF PROVIDING CARE TO a person with
Alzheimer’s disease or another dementia
We Care Home Health Services is fully accredited by the same organization
that accredits hospitals and other healthcare providers in Canada.
1-855-229-3227 www.wecare.ca
S E R V I N G o ver 8 0 0 c o m m u ni t ies a l l a c r o ss C a n a d a
Table of contents
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04
06
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13
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Understanding Alzheimer’s Disease & Dementia
The Importance of Early Diagnosis
Coping Strategies for Caregivers
Communication Techniques
Challenging Behaviours & Ways to Reduce Stress
Ways to Cope with Responsive Behaviours
The Importance of a Familiar Environment
Where to Find Community Support
Sharing the Caring
Choosing a Home Care Agency
Keeping Yourself Strong and Healthy
ACKNOWLEDGEMENT: Our thanks to Karen Tyrell, CDP for her generous contributions to the content of this booklet. Karen is a Certified
Dementia Practitioner and an NCCDP Certified Alzheimer’s/Dementia Seminar Trainer. She is one of the few national certified trainers in Canada.
She has spent over 14 years excelling in the field of dementia care. Thanks also to the Alzheimer Society of Ontario for its many suggestions and
editorial contributions.
We Care Home Health Services is fully accredited by
the same organization that accredits hospitals and
other healthcare providers in Canada.
Sustaining Patron
a l l c o n t en t s © 2 0 1 2 W E CA R E h o m e h e a lt h servi c es . a l l rig h t s reserve d . www.we c a re . c a
A LZHEI M ER ’ S C A RE g u i d e
We CARE HOME HEALTH SERVICES
A message from
Rosanna Garvin-Dolinki
Alzheimer’s disease can be a challenging journey
affecting not only those diagnosed, but also their
family members and caregivers. Caring for a loved
one with Alzheimer’s disease or a related dementia
might seem overwhelming from time to time. Being
well prepared with information and support can help
you navigate the challenging road ahead. It was my
personal experience with Alzheimer’s disease that led
me to become a home care visiting Registered Nurse.
Over the years I have worked with many families. To
this day, each new family I meet continues to amaze
me with its strength, dedication and perseverance in
giving the best possible care for family members with
dementia.
This guide was created by healthcare professionals
who have expertise and formal training in caring
for people with Alzheimer’s disease and related
dementias. It provides insight from caregivers like you
who have had firsthand experience and have been
through some of the challenges and responsibilities of
providing care. Each day may bring new challenges,
emotions, and circumstances you are unfamiliar
with. Getting as much information as you can about
Alzheimer’s disease and other dementias can help
you to learn coping strategies and communication
techniques to get you through the more difficult
times. Please use this guide as a tool to deepen your
understanding of the disease and learn about the
many community resources available to you. It is
meant to serve as a reference that you can keep handy
in your home for when you need something to turn to.
Remember – you are not alone.
Rosanna Garvin-Dolinki RN BScN
Manager of Education
We Care Home Health Services
01
Understanding
Alzheimer’s
Disease &
Dementia
Alzheimer’s disease is the most prevalent form of
dementia but there are many other forms. Dementia
is defined as a syndrome characterized by a set of
symptoms including:
• Impairments of memory, judgement and thinking
• Challenges with speech, language and comprehension
• Changes in personality, mood, orientation and
balance
Some dementias are reversible or treatable, including
some forms of depression or delerium, vitamin B12
deficiencies, thyroid disorders, infections and reactions
to certain medications.
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There are also nonreversible types of dementia:
frontotemporal dementia, Lewy-body disease,
Parkinson’s disease, Picks disease, stroke and,
of course, Alzheimer’s disease.
It’s important to note that although the cognitive
abilities of a person with Alzheimer’s disease or
some dementias will decline over time, the process
is gradual. Some days will be better than others. It’s
important to focus on your loved one’s remaining
abilities and to do what you can to promote an active
and rewarding lifestyle.
A LZHEI M ER ’ S C A RE g u i d e
What is
Alzheimer’s Disease?
Alzheimer’s disease is a progressive, degenerative
brain disease that produces a gradual decline in
a person’s cognitive ability. Alzheimer’s disease is
the most common type of dementia; it accounts
for approximately 64% of all dementias. With
Alzheimer’s disease, abnormal proteins known as
plaques and tangles literally “choke” healthy brain
cells, destroying them and causing loss of function.
As the disease advances, it affects different areas
of the brain, resulting in changes in one’s abilities,
memory, behaviour and personality. Why these
proteins develop in the brain remains unknown. A
few approved drugs are commonly prescribed to help
delay or modify some of the behavioural symptoms,
but there is currently no cure for Alzheimer’s disease.
There is hope: scientists all over the world have been
making great strides over the past few decades and
continue to offer promising results.
The Smith
Family’s Story:
The Smith’s family get-togethers were
always filled with music, food and fun.
But as Emily’s cognitive abilities began to
decline, she often became very agitated,
especially with the great-grandchildren.
She would often yell at them to settle
down. She also began asking to go
home, even though she had just arrived
at an event. Her son often insisted she
stay and have fun with everyone but this
only increased her agitation. Many of the
family members wondered if it was worth
involving Emily in every family gathering.
Eventually, they decided that large family
gatherings were causing her to be more
upset than happy. They decided to establish
a new family tradition centred around
shorter visits involving fewer people. This
significantly improved Emily’s mood and
resulted in more enjoyable visits with her
family members.
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The Importance
of Early Diagnosis
Getting an early diagnosis can help individuals and
families be more proactive and gain more control over
their lives. It’s natural to fear an unwelcome diagnosis,
but delaying the investigation may actually make
matters worse. As we’ve already mentioned, some
dementias are treatable and are, in fact, reversible.
Early diagnosis will help to better deal with the
situation and will better allow for:
• Gaining insight and education on the condition
• Exploring treatment options
• Creating plans for the future
• Developing support networks
Although receiving a diagnosis is difficult, many people
experience a measure of relief once they understand
the reason for their symptoms.
Obtaining a Diagnosis
Your family doctor will want to know more about the
symptoms you or your loved one is experiencing.
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When did they begin and how often do they occur?
How are the symptoms affecting your ability to
manage every day activities? The answers to these
questions will help the doctor rule out certain causes
of dementia. The doctor may also complete a
physical exam, a review of medical history, and order
laboratory exams such as blood work. A referral to a
specialist such as a Neurologist or a Geriatrician may
also occur at this time. A CAT scan or MRI may also
be suggested by your family doctor or the specialist.
Lastly, the doctor will likely test your memory and
other cognitive functions to assess short-term memory
and recall.
Many Alzheimer Societies in Canada offer programs
that accelerate access to care for patients with
dementia and their families. Ask your caregiver for
a referral or go to your provincial or national
Alzheimer Society website for more information.
A LZHEI M ER ’ S C A RE g u i d e
05
Coping
Strategies
for Caregivers
You may find that the progression of dementia in your loved one can result in a decrease in functioning
and ability. As a caregiver for someone with dementia, you may experience a variety of emotions. For
example, the additional support and demands on your time, energy and finances may bring out feelings
of distress or of anger. Feelings of hopelessness or of being overwhelmed are common and normal for any
caregiver under these strains.
It’s what you do with these emotions that is most
important. Talking about these feelings – with a close
friend, family, clergy, doctor, a support group or even
a professional – has been known to reduce stress and
help families cope with their experiences. To learn
more, please refer to We Care’s informative booklet
called, “Being a Family Caregiver Guide.”
Stress is a very real health hazard. Caregivers often
ignore the signs of stress, often resulting in caregiver
burnout or other health problems. Caregiver’s needs
are important and need to be addressed. That’s why
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it’s best to seek and accept help before the onset
of stress-related effects. Accepting that you have
limitations, and being assertive in asking for help –
before a situation becomes a crisis – is what being
proactive is all about. It’s important for you and for
the person who depends on you. Obtaining education
about dementia and/or Alzheimer’s disease will better
equip any caregiver for the journey ahead. It will help
you form realistic expectations. Alzheimer Society
chapters in Canada have information and several
programs and services to help families and their loved
ones who are affected by dementia.
A LZHEI M ER ’ S C A RE g u i d e
Communication Techniques
How you communicate can make a big difference,
especially to someone with damage to the
communication centres of their brain. Incorporating
some of the following communication tips is a great
way to provide positive support.
In the early stage:
• Be patient
• Give the person time to express themselves
• Don’t interrupt
• Be supportive
• Don’t talk about the person as if they are not there
• Don’t be condescending
• Don’t be patronizing
• Avoid asking questions that rely on their memory
• Try communicating simple reminders by using sticky
notes or other communication aids
• Limit distractions as much as possible
• Find a quiet place to talk to minimize distractions
• Avoid criticizing, correcting, or arguing
• Look beyond the words; watch body language to
understand what the person is experiencing and/or
expressing
As communication becomes more difficult in later stages:
• Approach the person calmly from the front
• Make eye contact
• Identify yourself clearly
• Avoid sudden movements, which may frighten them
• Call the person by their name
• Use short, simple sentences
• Ask one question at a time and wait for a response
• Ask simple “yes or no” questions (Instead of asking
“What would you like to wear?” say, “Would you like
to wear this?”)
• Avoid vague words such as “Put it over there.” Instead
try saying, “Put it on the table.”
• If repeating yourself, use exactly the same words
again but speak more slowly. If you are still not being
understood, rephrase using shorter, simpler sentences
• Give visual cues by pointing to the object you are
talking about
• Ask the person to point or gesture if they can’t find
the right word or expression
• Pay attention to your body language and facial
expressions as your loved one may pick up on stress
or anxiety, which may impact the mood they are in
Practice makes perfect; using the above techniques will take time and practice so be patient with yourself.
Reviewing these techniques often will help along the journey to ensure supportive communication.
07
Challenging Behaviours
& Ways To Reduce Stress
Behaviours associated with dementia can be
challenging but it’s very important to understand that
the behaviour is often the result of an unmet need.
Look for the reason behind the behaviour. To do
this, ask yourself WHY this behaviour is happening?
Pinpointing the root cause makes it easier to
determine a solution. The following list can help:
• Look for signs of physical discomfort: Are they in pain?
Are they hungry or thirsty? Do they need to use the
toilet? Is their body temperature comfortable?
Are medications having negative effects?
• Ask them questions if they are able to respond: “Do
you need to use a toilet?” “Are you worried about
something?” “Are you tired?” etc.
• Are they concerned or anxious? Are they worried about
something? Perhaps they are feeling anxious about
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something perceived to be real? Are they scared?
Are they frustrated?
•L
ook at the environment: Did someone or something
upset them? Is the environment too noisy or too
quiet? Is it cluttered or confusing for them?
•L
ook for triggers: Did they see or hear something that
triggered the behaviour? Could it be a certain time of
day? Perhaps a certain person or phrase could have
triggered the reaction/behaviour.
Knowing the behaviour’s root cause allows you to
help. Some needs or behaviours may be easy to
understand; others may require a more creative
approach. For really challenging situations, you may
need professional support.
A LZHEI M ER ’ S C A RE g u i d e
Sundowning
You may notice that the person with dementia displays
a pattern of behaviours that occurs regularly in the late
afternoon or early evening. This behaviour can cause a
great deal of caregiver stress and exhaustion. Some of
the behaviours you may witness can include:
• Confusion and/or agitation
• Restlessness and/or anxiety
• Exit-seeking and/or impulsiveness
• Forgetting how to complete tasks that they did not
have trouble with earlier in the day
This regular behaviour pattern can be caused by:
• Changes in natural light that create shadows that
agitate your loved one (hallucinations, delusions)
• Your loved one is more tired at the end of the day
• There is often less activity at the end of the day,
which can increase restlessness
Tips for helping the person with dementia:
• Keep a journal to see what causes the behaviour
• Give your loved one time to rest throughout the day
• Schedule appointments for early in the day
• Increase lighting during this time
• Maintain routines
• Distract your loved one with activities (setting the
table)
• Reduce the stimulation in the environment (reduce
noise, visual stimuli)
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Ways To Cope with
Responsive Behaviours
This experience is not the same for every caregiver,
so it’s important to try various ways of coping. The
following may help in difficult situations.
• Validate their feelings: Showing concerns for
someone’s feelings often puts them more at ease.
Showing you care about them and how they feel,
regardless of whether their feelings are justified or
fitting the situation, helps them feel heard and loved.
• Be creative: Be creative when caring for someone
with dementia. You may need to be flexible and
change a routine to make it work for your situation.
You may also need to change the way you do
things or how you say things. Ideally you want to do
whatever works; use your imagination!
• Therapeutic Reasoning: Therapeutic Reasoning is a
technique many caregivers use with someone who
has dementia. It involves tuning your message to
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the world of their perception. For example; if your
loved one once lived on a farm and is anxious to get
“home” to milk cows, explaining that they no longer
live on the farm might be challenging. If so use
Therapeutic Reasoning by saying, “Good news, the
cows have already been milked today!”
• Keep a consistent and calm environment: Daily,
consistent routines make for a more comfortable,
supportive environment. So too does a quiet, calm
atmosphere. Confusing sounds – a loud radio and
TV turned on at the same time while trying to have a
conversation – may create an environment that feels
hostile. Reduced stimulation will likely contribute to
a more peaceful and productive environment.
• Let them do as much as they can: Use it or lose it: the
adage often applies to daily activities for individuals
with dementia. Ideally, they should be doing as
much as they can for themselves, for as long as
A LZHEI M ER ’ S C A RE g u i d e
possible. Encouraging them to remain involved can
be a big help – for both of you.
• Be patient: It’s not always easy to maintain your
patience. Try taking three deep breaths when you
notice yourself slipping. Keep in mind that your
loved one is likely not testing your patience on
purpose; it’s the disease at work, not the person.
• Take breaks: All caregivers need time to relax and
“recharge their batteries.” For some, the need may
arise a few times a day; for others it may be a few
hours a week or a few weeks in a year. Turning to
family and friends for help or respite may be a great
start. Other options may include community-based
supports such as home care companies.
• Keep a sense of humour: Nothing about dementia
is funny. That said, laughing can be a wonderful
medicine for everyone. Do your best to cultivate a
loving sense of humour every day and encourage
the person with dementia to share in the moment.
Having the person in a good mood will contribute to
the quality of everyone’s day.
• Don’t be shy about asking for help: This cannot be
stressed enough. Asking for help is a proactive way
to remain healthy and able to support the person
with dementia. Looking for ways to share some of
the responsibility will help you provide better care.
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A LZHEI M ER ’ S C A RE g u i d e
Lilly’s story:
Lilly was diagnosed with Alzheimer’s disease
at age 85. As her disease progressed, she
no longer recognized her current home
because, in her mind, she was regressing to
The Importance
of a Familiar
Environment
her past address. Each night, she would ask
her husband when she was going home,
even though she was already at home.
Her husband, Rob, tried to explain to her
that they were at home but that didn’t
always settle her down. That was when Rob
started using “Therapeutic Reasoning,”
telling her they would go home in the
For a person with declining cognitive abilities, it is
already difficult to remember the day of the week,
the names of the neighbours and what he or she
did the previous day. Taking them out of their
familiar environment can increase the confusion
they are already experiencing. Adding unfamiliar
people, rooms and routines into the cognitive
mix can often elevate their feelings of confusion,
anxiety and frustration. Sticking with day-to-day
routines and familiar places will help them cope
with their declining abilities. If you need to take
the person with dementia out of their familiar
environment and routines, be ready for added
confusion until a new routine can be established.
morning. This seemed to settle Lilly for
the night. When morning came, Lilly had
forgotten about wanting to go home. The
outcome was a restful night’s sleep – for
both Rob and Lilly.
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A LZHEI M ER ’ S C A RE g u i d e
Where to Find
Community Support
All across Canada, in every community, more and
more people are caring for people with dementia. If
you are among them, don’t be afraid to ask questions
or seek help. The following supports, found in most
communities, can help answer your questions:
Your local Alzheimer Society. This non-for-profit
organization provides dementia education and support
– everything from counselling or education specific to
your situation to support groups. To learn more visit:
www.alzheimer.ca
Your local library. All libraries will be able to provide
you with a number of educational materials and
resources to help you learn more about dementia.
To find a library near you visit: http://www.
collectionscanada.gc.ca/gateway/s22-200-e.html
Your family doctor. Your doctor’s office may know of
local supports and will also be able to answer your
questions about dementia.
Your local health authority or community access centers.
Government healthcare bodies will be able to provide
you with information about home support options,
respite care and answer your questions about placing
someone in long-term care. Health Canada General
Inquiries: 1-866-225-0709. Website: http://www.
hc-sc.gc.ca/hcs-sss/delivery-prestation/ptrole/index-eng.
php#a1
Your pharmacist. Pharmacists will have information
about the types of drugs that are commonly
prescribed for people with dementia.
Senior health fairs. These fairs – often hosted once
or twice a year – will showcase the organizations,
agencies and support services that are available in
your community.
The internet. The internet provides a virtually endless
use of information on dementia care, on the various
types of dementias, on expectations, research and
other helpful resources. Look for information from
reputable sources.
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Sharing the Caring
The responsibilities of caring for a person with
dementia may seem (and actually be) overwhelming
for one person to tackle alone. Asking for help from
family members and others may be challenging. Here
are a few suggestions to promote communication and
a greater sharing of responsibilities:
• Make a list of all the things that you are currently
doing and note the time requirement for each item.
• Identify the things your siblings, family members
and others could do to help. You never know –
they may be feeling left out and might welcome an
opportunity to contribute.
• If your siblings (or others) live out of town, suggest
ways in which they can assist. For example:
researching community resources online,
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completing income tax forms, ordering items online,
setting up automatic bill paying or checking options
for home improvement projects, etc.
• Schedule a meeting or telephone conference call.
Offer to draft an agenda (using the Home Care
Check List as a place to start) to keep the discussion
focussed. Approach the meeting with a sense of
working together to find a solution rather than telling
people what to do. If appropriate, involve the person
with dementia in the meeting.
• If you are sensing conflict from a family member,
don’t jump to conclusions. Provide opportunities for
everyone to share their feelings and perspectives on
the situation. It may help to suggest that everyone
set aside any interpersonal differences and focus on
the best interests of the person with dementia.
A LZHEI M ER ’ S C A RE g u i d e
• There should be one primary caregiver who
is responsible for communicating with doctors,
specialists, case managers, etc.
• Identify a communication mechanism for
sharing information (i.e. email, phone tree, etc.).
• Set up a shared calendar and ask for volunteers
to do certain tasks.
• In the home, keep a communication book
in which everyone (including the person with
dementia) can record observations, suggestions,
phone messages, appointments, etc.
• Remember that, as the main caregiver, you need
respite breaks. If family members and others
can’t help out, perhaps they can help pay for the
cost of third-party help.
Anna’s Mother’s Story:
One day, Anna noticed that her mother was
acting quite strangely. She had forgotten,
for example, to take out the garbage and
feed the cat. She was also showing signs
of being upset, accusing the neighbours
of stealing from her. This wasn’t normal
so Anna booked an appointment for her
mother with her family doctor. After a few
tests, it was discovered that her mother had
a bladder infection that caused symptoms
of dementia. An antibiotic was prescribed
and, within a few days, Anna’s mother was
back to her usual self.
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Choosing a
Home Care Agency
Investigating professional help? Questions to consider when deciding on a Home Care Provider:
1
2
3
4
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Do I need to be referred by a doctor or hospital?
Is there a minimum charge?
How much time must I allow between my request
for service and the first home visit?
Can your agency respond to a request for service
on ‘short notice’? Is there an extra charge?
5
Will the same home care worker be coming every
time or will there always be a new caregiver each
time?
6
What if I need service on a holiday or after
normal business hours? Can you provide that?
7
Who do I call in case of emergency, even after
hours?
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How do you train your home care personnel?
Do they have post-secondary education?
9
What references do your home care personnel
have? Are they insured?
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Do you have home care personnel with specialties
and extra training in certain diseases and injuries?
Will my private insurance company pay the bill?
How long has the company been in the area?
Are your healthcare standards accredited for
excellence?
What services do you provide?
A LZHEI M ER ’ S C A RE g u i d e
19
Keeping Yourself
Strong and Healthy
Caring for yourself is one of the most important – and one of the most
often forgotten – things you must do as a caregiver. When your needs are
taken care of, the person you are caring for will benefit, too.
The 3 R’s of Caregiving
Respect is closely linked to admiration, esteem and reverence. These
words are used here to describe you – you as a caregiver. You deserve
to be held in high opinion by yourself. By respecting yourself, you ensure
that your body, mind and spirit remain whole so that you can carry on the
tasks of being an effective family caregiver.
Realistic expectations – it’s easy to say but more difficult to achieve.
It’s hard to have realistic expectations when you are new to caregiving or
when you are so involved in the process that you risk losing a sense of
perspective. But with time, experience and knowledge you can learn to
take control and to say “NO” when expectations become unrealistic.
Better time management involves delegating, planning ahead, prioritizing
and accepting offers of help. You may feel overwhelmed as you try to
divide your time and energy between your own family’s needs and those
of your loved one. If you do, ask yourself these four questions: What can
I realistically do to help? What is it that I cannot do? What can my loved
one do to help? And who can I turn to for help?
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A LZHEI M ER ’ S C A RE g u i d e
Respite means taking a break or finding a
breathing space in your day. Be good to yourself
as you care for your loved one.
Ways of Taking Care of Yourself
• First and foremost, if you need it, get some rest.
Ask someone you trust to take over your duties so
that you can take time to sleep, watch TV, read and
collect your thoughts and feelings.
• Once you’ve rested, create a detailed calendar
that is realistic and that incorporates time for you
to do what you enjoy or need to do to remain in
control of your life.
• T hink about the importance of each of “The
5 F’s of Family Caregiving” and try to give
time and attention to these important “F” factors:
Family, Friends, Faith, Forgiveness and Fun.
• Avoid stressing over unknowns; consult lawyers,
doctors, accountants and professional care services
providers who can often provide clarity and alleviate
unnecessary concern. If possible, delegate this
responsibility to another family member.
• Set up a Facebook page and re-connect with
friends from the past. You may be surprised how
many are experiencing the same challenges and
are available to provide support.
• Keep a personal journal where you can chronicle
your feelings, concerns and thoughts. Don’t be
afraid to write about your feelings of loss, anger
or frustration but also be sure to record the little
things that bring joy and happiness to your day.
Signs of Caregiver Burnout (or compassion
fatigue) If you feel like the stress of caregiving is
beginning to take its toll, check the following list of
typical symptoms:
• Weariness and exhaustion
• Inability to eat or sleep
• Inability to concentrate or think clearly
• Increased dependence on tobacco, alcohol or
drugs
• Weight loss or weight gain
• Loss of contact with friends
• Irrational outbursts or frequent moodiness
See your healthcare professional if you have any of
the above symptoms. A number of resources are
available to people suffering from caregiver burnout.
Visit the Canadian Caregiver Coalition website at
www.ccc-ccan.ca for more information.
Website resources used for developing
the contents of this booklet:
• www.DementiaSolutions.ca
• http://www.dasninternational.org
• www.wecare.ca
• http://www.helpguide.org/elder/alzheimers_
disease_dementia_support_caregiver.htm
• www.alzheimer.ca
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We Care offers a variety of compassionate and
professional care services that help you live your life.
These include: personal care, homemaking and
meal preparation, nursing, help with meds, foot care and
accompanied visits. Our caregivers are specially trained
to help people with Alzheimer’s/dementia, diabetes,
acquired brain injury and end-of-life care.
We Care Home Health Services is fully accredited
by the same organization that accredits hospitals
and other healthcare providers in Canada.
1-855-229-3227
www.wecare.ca
P R OUD TO B E A N
AL Z H E I M E R S OC I E T Y
“A L I S T ” P LAT I N UM
S U P P O RT E R
S E R V I N G o ver 8 0 0 c o m m u ni t ies a l l a c r o ss C a n a d a