Caregiver Guide Series: Alzheimer’s Disease and Dementia › pdf ›...

Caregiver Guide Series:

Alzheimer’s Disease and DementiaA guide to helping you better MAnAge

the ChAllengeS And reSponSibilitieS

oF proViding CAre to A perSon with

AlzheiMer’S diSeASe or Another deMentiA

1-855-229-3227 www.wecare.caS E R V I N G o V E R 8 0 0 c o m m u N I t I E S a l l a c R o S S c a N a d a

We Care Home Health Services is fully accredited by the same organization that accredits hospitals and other healthcare providers in Canada.

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 homecare 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 health-care 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

we CAre hoMe heAlth SerViCeS

A message fromRosanna Garvin-Dolinki

Table of contents

a l l c o N t E N t S © 2 0 1 2 W E c a R E h o m E h E a l t h S E R V I c E S . a l l R I G h t S R E S E R V E d . W W W. W E c a R E . c a01


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

0204060708101315161820

A l z h e i M e r ’ S C A r e g u i d e

Sustaining Patron

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.

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.

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.

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.

Understanding Alzheimer’s Disease & Dementia

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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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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 diAgnoSiSYour family doctor will want to know more about the

symptoms you or your loved one is experiencing.

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.

The Importance of Early Diagnosis

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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

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.

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

say, “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

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.


Communication Techniques

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.

Coping Strategies for Caregivers

Challenging Behaviours & Ways To Reduce Stress

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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

something perceived to be real? Are they scared?

Are they frustrated?

• Look at the environment: Did someone or something

upset them? Is the environment too noisy or too

quiet? Is it cluttered or confusing for them?

• Look 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.

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 increasing 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)

Sundowning

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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

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

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.

Ways To Cope with Responsive Behaviours

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The Importance of a Familiar Environment

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.

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

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

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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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 health care 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.

Where to Find Community Support

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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,

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.

• 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.

Sharing the Caring

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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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?

Will the same home care worker be coming every time or will there always be a new caregiver each time?

What if I need service on a holiday or after normal business hours? Can you provide that?

Who do I call in case of emergency, even after hours?

How do you train your home care personnel? Do they have post-secondary education?

What references do your home care personnel have? Are they insured?

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?

Investigating professional help? Questions to consider when deciding on a Home Care Provider:

Choosing a Home Care Agency

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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 CaRegivingRespeCT 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?

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.

• Think 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.

Keeping YourselfStrong and Healthy

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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

1-855-229-3227 www.wecare.ca

P R o u d t o B E a Na l Z h E I m E R’ S S o c I E t Y “a l I S t ” P l at I N u m S u P P o Rt E R

S E R V I N G o V E R 8 0 0 c o m m u N I t I E S a l l a c R o S S c a N a d a


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.

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