Dementia

© 2013 Griswold International, LLC
The Griswold Solutions SeriesTM

Our Goal for Today
Empower 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 Kane
Family Caregiver, Support Group Facilitator
Chris Kelly, MEd
Director of Learning & Development
Griswold 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 WRITING
Solutions
Orange Arrow Button:
Minimizes or expands the
GoToWebinar control panel.

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.htm
www.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 Not
Ask 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
Repetitive
Symptoms

- Lou Gehrig
What’s Behind Repetitive Symptoms?
Changes in the brain can cause:
Verbal Symptoms Physical Symptoms
I want to
go home.
I want to
go home.
What time
is it?
What time
is 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

Wandering
&Movement
Issues
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 Seeker
Has a specific goal. Examples:
“going home” or “going to work”
n Pacer
Has excess energy and a need
to move
n Explorer
Interested in everything—
likes to touch things
n Follower
Shadows 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 for
and Preventing
Wandering
Tools:

Real Stories
Rosemary Kane
Family Caregiver, Support Group Facilitator

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 & Agitation
Aggressive 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 an
unmet 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, routine
or caregiver
n Vision or hearing problems
n Sense of loss (roles, hobbies, control
family/friends, dignity, loneliness)
n Noise
n Being pushed to do things
they 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 and
Memories
Aggression and Anger
Tools:

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 Hallucinations
and Paranoia
Hallucinations/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 suspicion
EXAMPLE: “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 and
Alzheimer's
Suspicion, Delusions
and Alzheimer's
Tools:

Sundowning
& Sleep
Problems
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 Anxiety
During 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:

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
Communication
Challenges

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's
Aphasia Aids

Your care team
should include:
Family Doctor/
Nurse Practitioner/
Nurse
Geriatric Care Manager/
Social Worker
Occupational
Therapist
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 Treatment
n 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 Help
The 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

© 2013 Griswold International, LLC© 2013 Griswold International, LLC
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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