Dementia

© 2013 Griswold International, LLC

The Griswold Solutions SeriesTM


Our Goal for TodayEmpower people living with Dementia and their family/professional caregivers to:

• Understand and manage Dementia symptoms• Improve quality of life through education, support and advocacy


Presented by:

Rosemary KaneFamily Caregiver, Support Group Facilitator

Chris Kelly, MEd Director of Learning & DevelopmentGriswold Home Care

Thank you for your courage, energy, and dedication!

Professional CaregiversHealthcare Providers

Family Caregivers Clients Living with Dementia


Lit Review

Social Media

Advocacy

Solutions Webinar & Toolkit



Brainwriting is…• a fun, engaging way to brainstorm• sharing as many ideas as possible within a short timeframe Brainwriting Process• Listen for our questions• When prompted, enter your solutions using the webinar chat function• Don’t overthink or agonize…There are no right or wrong answers Brainwriting Outcomes• Peer-to-peer learning and sharing• A publication that benefits others who are living with Dementia Important• Avoid sharing any information that you would not want others to see

BRAIN WRITINGSolutions

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Dementia is an umbrella term used to describe a set of symptoms that can include changes in:

…and must be severe enough to interfere with a person’s ability to function.

THINKING ATTENTION/CONCENTRATION

JUDGEMENTLANGUAGEPERCEPTION

REASONINGMEMORY

About Dementia

JUDGEMENT


Sources:

n Alzheimer’s Disease

n Vascular Dementia

n Lewy Body Dementia

n Parkinson’s Disease

n Creutzfeldt-Jakob Disease aka Mad Cow Disease

n Down Syndrome

n Frontotemporal Dementia (FTD)

n Huntington’s Disease

n Mixed Dementia

n Korsakoff’s Syndrome

n AIDS Dementia Complex

n Traumatic Brain Injury

www.alz.org

www.stroke.org

www.ftlda.org

www.hsda.org

www.lbda.org www.alz.org, www.stroke.org

www.parkinson.org, www.michaeljfox.org www.alz.org/dementia/wernicke-korsakoff-syndrome-symptoms.asp

www.ninds.nih.gov/disorders/tbi/detail_tbi.htm

www.ninds.nih.gov/disorders/aids/detail_aids.htmwww.cjdfoundation.org

www.ndss.org

www.ninds.nih.gov/disorders/dementias/dementia.htm, www.alz.org/what-is-dementia.asp

The Many Forms of Dementia


Why NotAsk Me?Poetry by Norm - a person with Dementia

Why Not Ask Me?

I’m still here, I can still speak,I’m still strong, not frail and weak,

So when you stand there in my house,Talking in whispers, just like a mouse,

Just look this way and you will see,I’m still here, why not ask me?

Instead of saying, oh he can wear that,And dressing me in some daft hat,

Or making me eat food I hate,With me, why won’t you debate?

I’m no different, can’t you see,I`m still here, I`m still me,

All I want is to have a choice,All I want is to use my voice.


The questions come over and over all day and

night…‘Where is my mother?’. I try to be patient, but I end up

yelling…‘your mother died, remember???’. Afterwards,

you feel horrible.

Family caregiver quote

RepetitiveSymptoms

- Lou Gehrig


What’s Behind Repetitive Symptoms?Changes in the brain can cause:

Verbal Symptoms Physical Symptoms

I want togo home.

I want togo home.

What timeis it?

What timeis it?

Tapping Feet

Banging

Rubbing Hands

Rummaging

Repeating the same question,story or statement over and over


Action Plan and Toolkit

• Identify and respond to unmet emotional/physical needs

• Divert to meaningful/repetitive past activity

• For banging – Give clients a soft/meaningful object to hold

Remember – a person with Dementia cannot control their symptoms

Tools:

NINDS Dementia Information Page

Planning the Day for a Person with Dementia Memories in the Making

http://1.usa.gov/19tXNzH

http://bit.ly/1gTiPdI

http://bit.ly/1dE9IOw


Wandering& MovementIssues

I found myself lost, frightened and

confused about where I was…and I didn’t even

know where I was trying to go.

Person with Dementia


What’s Behind Wandering?There are four types of wandering:

n Exit SeekerHas a specific goal. Examples:“going home” or “going to work”

n PacerHas excess energy and a needto move

n ExplorerInterested in everything— likes to touch things

n FollowerShadows caregiver for reassurance


• Enroll in an emergency response program (see links below)

• Walk/pace with them, then gradually slow to a stop/sit

• Resolve unmet needs: toileting, hunger, thirst, rest, pain, illness, emotions

• Develop a wandering response plan

• Provide a safe, clutter- free walking path

• Ask your HCP about a home safety assessment

MedicAlert® + Alzheimer's Assoc.

Safe Return®

Preparing forand Preventing

Wandering

Tools:


http://bit.ly/19vEMBv

http://bit.ly/16mftB5


Real Stories



Aggression& Agitation

If you don't understand what's happening because your

brain is not functioning, it can be scary. It's normal human behavior.

You might act out, become agitated, or violent if you don't

know what's going on.

Beth Kallmyer - Senior Director of Constituent Services at Alzheimer's Association


Understanding Aggression & AgitationAggressive Symptoms can include:

n Yelling n Cursing

n Hitting

n Biting n Throwing Things


What’s Behind Aggression?Aggression is often triggered by the inability to communicate anunmet need. Needs that often trigger aggression include:

n Pain

n Depression, anxiety & stress

n Too little/much rest or sleep

n Constipation

n Soiled clothing

n Change - location, routineor caregiver

n Vision or hearing problems

n Sense of loss (roles, hobbies, controlfamily/friends, dignity, loneliness)

n Noise

n Being pushed to do thingsthey don’t want to do

n Reaction to medicine

n Being too hot or too cold

n Clothing does not fit


• Reassure the person that they are OK • Speak calmly/slowly and listen• Limit caffeine and sugar • Play soothing music• Divert to soothing/ meaningful activity

• Identify and respond to unmet needs

• Reduce noise, clutter or number of people

• Don’t argue or reason

• Walk away and return after a few minutes

Coping with Agitation and Aggression

Music andMemories Aggression and Anger

Tools:


http://1.usa.gov/17XqVQA

http://bit.ly/1fcmQ1t

http://bit.ly/15PuqsU


Real Stories



Hallucinations& Paranoia

My mom has Alzheimer’s Disease and

also has hallucinations. What I've learned is that if they aren't bothering her, let it be. Go along

if she wants your opinion or interaction. If they upset

her, then you need to try to divert her or possibly

try medication.


What’s Behind Hallucinationsand ParanoiaHallucinations/paranoia are very real for the person with Dementia. Examples are:

n Seeing/feeling/hearing/ smelling/tasting things

EXAMPLE: Seeing bugs

n Illusions - Seeing objects in a distorted way EXAMPLE: Thinking that the drapes are a ghostly figure

n Blaming or suspicionEXAMPLE: “You stole my keys”, “You took my money”

• Don’t correct the person or argue

• Divert attention to relevant/ meaningful activity

• Talk to your healthcare provider about treatment

• Join their world and remove the problem

Hallucinations andAlzheimer's

Suspicion, Delusionsand Alzheimer's


Tools:


http://bit.ly/1gTkjos

http://bit.ly/15muQmT


Sundowning& SleepProblems

My father, who had Alzheimer’s Disease had

sundowning syndrome. His late evening wandering, becoming

demanding, and suspicions about me moving things made me want to scream each night. Even though I

knew he had Alzheimer’s, it did not stop me from having

caregiver burnout.

Family caregiver quote


What’s Behind Sundowning?

n Change in internal clock

n Exhaustion

Sundowning — when a person with dementia becomes more restless,anxious or agitated during the late afternoon and evening hours.

Causes of sundowning can include:

Late afternoon was always a time to “do something” or “go somewhere”

n Inactivity and napping

n Medication side effects

n AnxietyDuring the day

From lack of sleep

n Lack of light

n Depression

Can be disorienting


• Involve the person in late- afternoon/evening activities

• Stay active during the day

• Avoid alcohol, caffeine and nicotine

• Recognize and respond to unmet needs

• Ask your HCP if you should avoid medicines before bedtime

• Make sure the bedroom temperature is comfortable

• When sleep problems persist, it is important to get support/respite

Respite Care Griswold Home Care National Adult Day Services Assoc.

Tools:


http://bit.ly/16tMRz0

http://bit.ly/1fcnvA5

http://bit.ly/16mgb16


It is agonizing. I see the word in my

head, but I can’t say it. I try to avoid people so

I don’t embarrass myself.

Person with Dementia

CommunicationChallenges


Types of Aphasia

Expressive (Broca’s) Aphasia: non-fluent Speech is effortful and it is hard to convey thoughts through writing. The client knows what they want to say, but cannot find the words.

Receptive (Wernicke’s)Aphasia: fluent The client speaks fluently, but the words often do not make sense. It is hard to process (receive) spoken or written words as well.


Anomic Aphasia

Global Aphasia

Primary Progressive Aphasia (PPA)

It is hard to find/use the correct name for particular objects, people, places, or events.

The word is always on the “tip of the tongue.”

The client cannot speak or understand speech, nor can they read or write.

This is the most severe form of aphasia, typically seen right after injury to the brain.

The client has a language disorder that gets worse over time, but maintains ability to take care of themselves, pursue hobbies, and, in some instances, remain employed. PPA is a clinical dementia syndrome.


Communication Action Plan & Toolkit

• Approach the person from the front, smile and say who you are

• Get on eye level and make eye contact

• Use short, simple words and sentences

• Ask one question at a time

• Speak slowly

• Use a gentle and relaxed tone — a lower pitch is more calming

• Give visual cues

• Avoid quizzing

• Write things down

• Avoid talking down to the person or talking as if he or she isn't there

• Be aware of your feelings and facial expressions

Communication and Alzheimer'sAphasia Aids

http://bit.ly/114bmkV

http://bit.ly/1gTkJez


Real Stories


Your care team should include:


Family Doctor/Nurse Practitioner/

Nurse

Geriatric Care Manager/Social Worker

OccupationalTherapist

Physical Therapist

Home Care

Adult Day Care

Residential Care/Hospital

Advocacy/Support Group

Neurologist/Geriatrician

Speech Therapist

Area Agency on Aging

Your Dementia Care Team


Dementia Treatmentn Validation Therapy n Snoezelen - Sensory stimulation

n Complementary Treatment

n Medicine

• Music/art/dance therapy/tai chi• Antioxidants

• FDA-approved dementia medicines• Antipsychotics• Antidepressants

• Anti-anxiety • Anti-convulsants


Support Groups Can HelpThe most practical Dementia symptom management tips can be found through support groups.

Here are links that can help you to find support groups in your area:

Alzheimer’s Association Alzheimer’s Foundation

of America

http://bit.ly/17f6UVU

http://bit.ly/143u1Pm


Real Stories




Key Takeaways

People with Dementia cannot control their symptoms

It is important to surround yourself with Dementia experts and peers

You can fight back through advocacy, education and support

Symptoms are often triggered by unmet needs


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