Understanding & Understanding & Ministering to Ministering to

Family Members with Family Members with Dementia & Dementia &

Alzheimer’s DiseaseAlzheimer’s DiseasePresented by Frank Miller, Presented by Frank Miller,

Chaplain Chaplain

Education Consultant withEducation Consultant with

Heritage & ARC Home Health & Heritage & ARC Home Health & Hospice Care Hospice Care

The BasicsThe Basics

DementiaDementia vs vs

Alzheimer’s Alzheimer’s DiseaseDisease

DementiaDementia

Refers to Refers to symptomssymptoms that include that include changes in memory, personality, changes in memory, personality, and behaviorand behavior

Does Does notnot mean “crazy” mean “crazy” Changes in brain function are Changes in brain function are

significant enough to interfere significant enough to interfere with daily functioning in a person with daily functioning in a person who is awake & alertwho is awake & alert

DementiaDementia

Alzheimer’s Disease is most Alzheimer’s Disease is most common cause of dementia (50-common cause of dementia (50-60% of all cases)60% of all cases)

Other diseases causing dementia Other diseases causing dementia are stroke; depression; problems are stroke; depression; problems with thyroid, liver, kidney, and with thyroid, liver, kidney, and vitamin deficiencies; brain tumors, vitamin deficiencies; brain tumors, brain injury, some infections, etc…..brain injury, some infections, etc…..

Dementia is NOT…Dementia is NOT…

OccasionalOccasional forgetting of names, forgetting of names, location of objects, finding the location of objects, finding the “right” word, what you were going “right” word, what you were going to do when you entered a room, etc.to do when you entered a room, etc.

““10 Warning Signs of 10 Warning Signs of Alzheimer’s”Alzheimer’s” www.alz.org/AboutAD/Warning.aspwww.alz.org/AboutAD/Warning.asp

Alzheimer’s DiseaseAlzheimer’s Disease

First described by a German First described by a German physician, Alois Alzheimer in 1907physician, Alois Alzheimer in 1907

Dr. Alzheimer did an autopsy of a Dr. Alzheimer did an autopsy of a woman in her 50’s and found woman in her 50’s and found brain had beta-amyloid plaque & brain had beta-amyloid plaque & neurofibrillary tanglesneurofibrillary tangles

Progressive & ultimately fatal Progressive & ultimately fatal diseasedisease

Brain Fact:Brain Fact:

Some causes of Some causes of dementia are dementia are

potentially reversible potentially reversible butbut

Alzheimer’s Disease is Alzheimer’s Disease is notnot reversible. reversible.

Normal brain

Alzheimer’s brain

Stages of Alzheimer’sStages of Alzheimer’s

Alzheimer’s Association: 7 stages Alzheimer’s Association: 7 stages from “no impairment” to “very from “no impairment” to “very severe decline”severe decline”

Simpler classification Simpler classification – MildMild– ModerateModerate– SevereSevere

Mild or early stageMild or early stage

ForgetfulnessForgetfulness Inability to learn new thingsInability to learn new things Difficulty managing finances, Difficulty managing finances,

planning meals, taking medications planning meals, taking medications on scheduleon schedule

Able to do most activities including Able to do most activities including drivingdriving

Gets lost going to familiar placesGets lost going to familiar places May be depressedMay be depressed

Moderate stageModerate stage

Forgetfulness extends to “old facts” Forgetfulness extends to “old facts” (moving backwards in time)(moving backwards in time)

Repeats stories and makes up stories Repeats stories and makes up stories to fill in gapsto fill in gaps

Difficulty performing tasksDifficulty performing tasks Behavior problemsBehavior problems

– AgitationAgitation– RestlessnessRestlessness– WanderingWandering– Paranoia, delusions, hallucinationsParanoia, delusions, hallucinations

Moderate stage (cont)Moderate stage (cont)

Problems with intellect and Problems with intellect and reasoningreasoning– Poor judgmentPoor judgment– Forgets mannersForgets manners

Appearance & hygiene Appearance & hygiene deterioratedeteriorate

Sleep disturbancesSleep disturbances

Severe (late) stageSevere (late) stage

May groan, scream, mumble, or May groan, scream, mumble, or speak gibberishspeak gibberish

Refuses to eatRefuses to eat Fails to recognize family or facesFails to recognize family or faces Difficulty with all essential Difficulty with all essential

activities of daily livingactivities of daily living Requires considerable care & may Requires considerable care & may

need to be institutionalizedneed to be institutionalized

AlzheimerAlzheimer’s disease ’s disease

affects affects every every

individual individual differentldifferentl

yy

Care of Dementia Care of Dementia PatientPatient Diagnosis as soon as possibleDiagnosis as soon as possible Use of available medicationsUse of available medications Identify other health problems that Identify other health problems that

might be contributing to dementiamight be contributing to dementia– Other diseases, medications, Other diseases, medications,

depression, nutrition deficiencies, pain, depression, nutrition deficiencies, pain, etc.etc.

Good nutrition & hydrationGood nutrition & hydration Willing & capable caregiverWilling & capable caregiver

FDA approved FDA approved medications for medications for Alzheimer’s DiseaseAlzheimer’s Disease

Aricept (Donepezil): approved for all Aricept (Donepezil): approved for all stages stages

Exelon (Rivastigmine): mild to Exelon (Rivastigmine): mild to moderate stagesmoderate stages

Razadyne (Galantamine): mild to Razadyne (Galantamine): mild to moderate stages; used to be called moderate stages; used to be called ReminylReminyl

Namenda (Memantine): moderate to Namenda (Memantine): moderate to severe stagessevere stages

Note on medications:Note on medications:

Approved drugs offer a Approved drugs offer a modest, temporary delay modest, temporary delay

in worsening of the in worsening of the disease.disease.

But…it can buy time to But…it can buy time to make decisions & save make decisions & save money for additional money for additional

help.help.

A staggering fact…A staggering fact…

Approximately Approximately 5 5 millionmillion Americans Americans

care for a loved one care for a loved one with Alzheimer’s with Alzheimer’s disease at homedisease at home

FatigueFatigue

Caregivers & FamiliesCaregivers & Families

Alzheimer’s affects Alzheimer’s affects entire familiesentire families, , particularly as disease progressesparticularly as disease progresses

Caregivers often experience Caregivers often experience depression, anxiety, stress, & depression, anxiety, stress, & helplessnesshelplessness

Caregivers need respite time to Caregivers need respite time to maintain their own healthmaintain their own health

Caregivers & families need Caregivers & families need educationeducation

Great resourcesGreat resources

The 36-Hour Day The 36-Hour Day by Mace & Rabins by Mace & Rabins Creating Moments of Joy Creating Moments of Joy by Jolene by Jolene

BrackeyBrackey Alzheimer’s Organization websiteAlzheimer’s Organization website

www.alz.orgwww.alz.org Alzheimer’s AssociationAlzheimer’s Association

North Central Texas ChapterNorth Central Texas Chapter101 Summit Ave #300101 Summit Ave #300Fort Worth, TX Fort Worth, TX 817-336-4949817-336-4949

Long-term planningLong-term planning

Know end-of-life wishes of patientKnow end-of-life wishes of patient Implement Durable Power of Implement Durable Power of

Attorney & Living WillAttorney & Living Will Investigate assisted living Investigate assisted living

facilities & nursing homes facilities & nursing homes (Memory Care facilities are best (Memory Care facilities are best equipped for Alzheimer’s equipped for Alzheimer’s patients)patients)

Long-term planning Long-term planning (cont)(cont) Respite for caregiverRespite for caregiver

– Other family membersOther family members– FriendsFriends– Paid caregivers (agency, privately hired, Paid caregivers (agency, privately hired,

respite through Alzheimer’s Association)respite through Alzheimer’s Association) Home Health Care (skilled)Home Health Care (skilled)

– Medicare pays 100% for patients who Medicare pays 100% for patients who qualifyqualify

– May also be covered by some insuranceMay also be covered by some insurance

On the surface, there’s On the surface, there’s not much JOY in not much JOY in Alzheimer’sAlzheimer’s

The FactsThe Facts Disease of losses—short-term Disease of losses—short-term

memory at first and then memory at first and then long-term memory laterlong-term memory later

No cure!No cure! Progressive!Progressive! We aren’t sure what causes it!We aren’t sure what causes it! It is a disease of grief after It is a disease of grief after

grief after grief!grief after grief!

Jolene Brackey, author of Jolene Brackey, author of Creating Moments of JoyCreating Moments of Joy says… says…

““We are not able to create a perfectly We are not able to create a perfectly wonderful day with someone who has wonderful day with someone who has dementia, but it is absolutely dementia, but it is absolutely attainable to create a perfectly attainable to create a perfectly wonderful moment; a moment that wonderful moment; a moment that puts a smile on their face, a twinkle in puts a smile on their face, a twinkle in their eye, or triggers a memory. Five their eye, or triggers a memory. Five minutes later, they won’t remember minutes later, they won’t remember what you did or said, but the feeling what you did or said, but the feeling you left them with will linger.”you left them with will linger.”

How do you create a How do you create a moment of joy for moment of joy for

someone with someone with dementia?dementia?

What brings joy to What brings joy to you?you?

For the person with For the person with Alzheimer’s disease Alzheimer’s disease

and short-term and short-term memory loss, life is memory loss, life is

made of up of made of up of moments.moments.

Remember…Remember…

As the disease progresses, the As the disease progresses, the person with Alzheimer’s disease person with Alzheimer’s disease becomes younger and younger becomes younger and younger in his mind.in his mind.

He/she may not recognize family He/she may not recognize family members because in the age of members because in the age of his mind, the loved ones were his mind, the loved ones were children.children.

Live their reality…Live their reality…

Never force our reality on a Never force our reality on a person with dementia.person with dementia.

If your elderly husband insists he If your elderly husband insists he is 30 years old, is 30 years old, ACCEPTACCEPT it. it. – It is HIS reality.It is HIS reality.– His wife was young & wrinkle -free.His wife was young & wrinkle -free.– The children were in grade school.The children were in grade school.

Thou SHALT adjust the truth Thou SHALT adjust the truth

(in this situation)…(in this situation)… You will You will nevernever be able to reason be able to reason

with a person with Alzheimer’s with a person with Alzheimer’s disease.disease.

An 82 year old woman keeps An 82 year old woman keeps trying to find her mother. It is trying to find her mother. It is cruel to tell her that her mother cruel to tell her that her mother died years ago. Each time she died years ago. Each time she hears this news, she will grieve hears this news, she will grieve her mother’s death.her mother’s death.

Example…Example…George, who mowed a golf course George, who mowed a golf course

for a living, gets up early every for a living, gets up early every morning and insists that he must morning and insists that he must go to work. Instead of telling him go to work. Instead of telling him he is 83 and is retired, you tell him he is 83 and is retired, you tell him it has been raining and his boss it has been raining and his boss called and told him to take the day called and told him to take the day off.off.

Now, he can enjoy his day off Now, he can enjoy his day off instead of arguing with instead of arguing with you about going to work. you about going to work. (joy!)(joy!)

We need to change We need to change because the person because the person

with dementia with dementia cannotcannot change.change.

The only person I can The only person I can make make change is ME.change is ME.

CommunicationCommunication

90% of what the Alzheimer’s 90% of what the Alzheimer’s patient understands is non-patient understands is non-

verbal communicationverbal communication

Touch is Touch is communicationcommunication Basic need of lifeBasic need of life Craved from the first moments of Craved from the first moments of

lifelife Our hands portray what is inside Our hands portray what is inside

of usof us

Your mood is their Your mood is their mood.mood.

If Momma ain’t happy, If Momma ain’t happy, ain’t nobody happy!ain’t nobody happy!

Find a way to put Find a way to put yourselfyourself in a good moodin a good mood

Quiet music has a calming Quiet music has a calming effecteffect

Communication Communication StrategiesStrategies Be calm, positive, matter-of-factBe calm, positive, matter-of-fact Reduce background noise & Reduce background noise &

distractionsdistractions Talk to person face-to-face, at eye Talk to person face-to-face, at eye

levellevel Touching the person may hold Touching the person may hold

attentionattention

Communication Communication Strategies (cont)Strategies (cont) Demonstrate taskDemonstrate task Praise non-verbally (hugs, smile, Praise non-verbally (hugs, smile,

pat on back)pat on back) Use short, simple sentencesUse short, simple sentences Keep it positive--try to avoid Keep it positive--try to avoid

negative words such as “negative words such as “no, no, don’t, can’t”don’t, can’t”

Communication Communication Strategies (cont)Strategies (cont) If person is fixated on one subject If person is fixated on one subject

such as his old job, communicate such as his old job, communicate using person’s long-term using person’s long-term memory. memory. “I understand you were “I understand you were a very good farmer.”a very good farmer.”

Avoid questions that require Avoid questions that require short-term memoryshort-term memory

We must We must find the find the ways to ways to “tickle” “tickle” those those

long-term long-term memoriesmemories

Make a connection…Make a connection… Instead of asking, “How are Instead of asking, “How are

you?”, compliment them and start you?”, compliment them and start a conversation.a conversation.

Tap into their greatness…Tap into their greatness… ““I understand that you made the I understand that you made the

best chocolate pie in town!”best chocolate pie in town!” The answer may be “yes” The answer may be “yes” OROR she she

may launch into a memory of her may launch into a memory of her chocolate pies. (joy!)chocolate pies. (joy!)

Busy hands are happy Busy hands are happy hands…hands… Create things for the person to do Create things for the person to do

even if doesn’t need to be done—even if doesn’t need to be done—sorting laundry, shucking corn, sorting sorting laundry, shucking corn, sorting nuts and bolts, rolling yarn into ballsnuts and bolts, rolling yarn into balls

Have no expectations…allow mistakesHave no expectations…allow mistakes

(joy!)(joy!)

Maintaining the Maintaining the independence of the independence of the

person with person with Alzheimer’s disease Alzheimer’s disease

will make the will make the caregiver’s life caregiver’s life easiereasier

and maintain dignity as and maintain dignity as well as stimulate the well as stimulate the

brain.brain.

Odd behaviors are Odd behaviors are common with common with

Alzheimer’s patients…Alzheimer’s patients…wandering, dressing wandering, dressing

problems, verbal problems, verbal outbursts, hiding outbursts, hiding

things, “borrowing” things, “borrowing” things that don’t things that don’t

belong to them, etc.belong to them, etc.

Choose your battlesChoose your battles

What if the person insists on What if the person insists on wearing the same outfit wearing the same outfit

every day?every day?

Ask yourself: Ask yourself: Does this cause harm to the Does this cause harm to the

person? person? No.No. Does this annoy me? Does this annoy me? Probably, Probably,

but who cares.but who cares. Does this case harm to other Does this case harm to other

people? people? No.No. Do they remember they wore this Do they remember they wore this

yesterday? yesterday? No.No.

Patience…Patience… You’re going to lose it…we all doYou’re going to lose it…we all do When you have been asked the When you have been asked the

same question over & over, you same question over & over, you WILL be frustrated!WILL be frustrated!

Take a break…say you have to Take a break…say you have to go to the bathroom, even if you go to the bathroom, even if you don’t need todon’t need to

Take a walkTake a walk Do something for YOU!Do something for YOU!

YOUYOU…the caregiver…the caregiver

Need to take care of Need to take care of yourself before you can yourself before you can take care of someone elsetake care of someone else

Be involved in your own lifeBe involved in your own lifeSpoil yourself as often as Spoil yourself as often as

possiblepossible

Discover Discover ways to ways to

decrease decrease your your stressstress

SmileSmile

Lifts your Lifts your spiritsspirits

Relieves Relieves stressstress

Maybe you Maybe you will get a will get a smile backsmile back

ExerciseExercise

Reduces stressReduces stress Increases blood flow to brainIncreases blood flow to brain If person with dementia is If person with dementia is

also able to walk, it can also able to walk, it can relieve stress for both of yourelieve stress for both of you

Each one of us Each one of us possesses the power possesses the power

to bring joy into to bring joy into another person’s life…another person’s life…

You choose…be a drop of You choose…be a drop of rain or a ray of sunshinerain or a ray of sunshine..

-unknown-unknown

In turn, you will create In turn, you will create joy for yourself!joy for yourself!

Our value lies in what Our value lies in what we are and what we we are and what we

have been, not in our have been, not in our ability to recite the ability to recite the

recent past.recent past.

-Homer, a man with -Homer, a man with Alzheimer’s diseaseAlzheimer’s disease