Working with People with
Dementia and Other Cognitive
Impairments
Terry R. Barclay, Ph.D.
Clinical Neuropsychologist
Background
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Neuropsychologist
– Training: UCLA School of Medicine
– Specialist: Aging/Dementia
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HealthPartners Neurology
Alzheimer’s Research Center
Independent practice, Edina
– Practice:
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Cognitive/Psychological evaluations
Medical/Legal cases
Geriatric consultation
Psychotherapy
Objectives
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Signs, symptoms, and stages of common
forms of dementia
 Strategies for early recognition and
assessment
 Effective interview and communication
techniques
 Tips for intervention and referral
Normal (Healthy) Aging
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Characteristic pattern:
– Sensory declines (i.e., hearing, vision)
– General slowing of information processing
– Intelligence remains stable
– Mild decrease in:
 Ability to recall names of people, places, objects
 Mental flexibility
 Memory
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Independence in daily activities preserved
What is Dementia?
A disease of the brain that causes a
decline in memory and intellectual
functioning from some previously
higher level of functioning severe
enough to interfere with everyday life.
Dementia is NOT normal aging
Common Signs of Dementia
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Memory loss
– Newly learned information vs. old memories
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Disorientation to time, place, and people
 Language problems
 Diminished concentration
 Visual-spatial and perception problems
– Sense of direction
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Difficulty with complex tasks and learning new concepts
 Problems with abstract reasoning, problem-solving,
judgment
 Changes in personality / mood / behavior
How is Dementia Diagnosed?
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Complete medical history
Physical exam
Neurological exam
Lab tests
Neuroimaging (CT, MRI)
Mental Status exam
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Neuropsychological testing
Functional assessment of ADLs and IADLs
–
OT/PT evaluation
No single test can diagnose Dementia
Dementia vs. Alzheimer’s
What is the difference between
dementia and Alzheimer’s
disease?
Flowers
Pansies
Mums
Tulips
Daisies
Roses
Dementia
Frontotemporal
dementia
Vascular dementia
Parkinson’s
dementia
Lewy body dementia
Alzheimer’s dementia
Many Causes of Dementia
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Alzheimer’s disease
CVA/Stroke
 Parkinson’s disease
 Traumatic brain injury
 HIV/AIDS
 Multiple Sclerosis
 Huntington’s disease
 Lewy Body dementia
 Frontotemporal dementia
 Creutzfeldt-Jakob disease
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Toxic exposures
(industrial strength
solvents/chemicals)
Chronic hypoxia
Lyme disease
Syphilis
Brain tumors
Normal pressure
hydrocephalus
Wernicke-Korsakoff’s
Syndrome
Alzheimer’s Disease is
One Type of Dementia
Alzheimer's
Other Dementias
Alzheimer’s Disease Is:

A progressive, degenerative, neurological disease
of the brain
 A steady decline in memory and cognitive
functioning severe enough to interfere with
everyday life
 Related to specific chemical and structural
changes in the brain
 NOT reversible
Alzheimer’s Disease:
What does it look like?
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Neurofibrillary tangles
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Amyloid plaques
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Decrease in chemicals that
facilitate memory
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Cell death
Video Clip
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What is Alzheimer's Disease?
Progression of Alzheimer’s
Disease
 Early
Stage:
2 - 4 years in duration
 Middle Stage:
2 - 10 years in duration
 Late Stage:
1 - 3 years in duration
Early Stage AD
 Forgetfulness
 Trouble
multi-tasking
 Writes reminders, but loses them
 Personality changes
 Shows up at the wrong time or day
 Changes in appearance
 Preference for familiar things
Middle Stage AD
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Fluctuating disorientation
Diminished insight
Learning new things becomes difficult
Declining recognition of acquaintances, distant
relatives, then more sig. relationships
Mood and behavioral changes
Functional declines
Alterations in sleep and appetite
Wandering
Late Stage AD
 Severe
disorientation to time and place
 No short term memory
 Loss of speech
 Difficulty walking
 Loss of bladder/bowel control
 No longer recognizes family members
 Inability to survive without total care
Video Clip
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Frontotemporal Dementia
Why is Recognition Important?
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5.1 million Americans have Alzheimer’s
disease (AD)
– New case every 72 seconds
– 1 in 8 people over 65
– 1 in 2 people over 85
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Approximately 50% are never diagnosed
 Almost 10 million people in U.S. caring for a
person with AD or related dementia
(Alzheimer’s Disease Facts and Figures 2007 published by the Alzheimer’s Association
www.alz.org)
Why is Recognition Important?
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Crisis-driven utilization of healthcare services
– 1/3 of people with dementia require hospitalization
each year
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Support and interventions ARE available:
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Medication
Environmental/safety adaptations
Community programs
Family education and support
(Silverstein & Maslow, 2006; U.S. Centers for Medicare and Medicaid, 2000)
What Makes Recognition Difficult?
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Poor understanding of healthy aging
 Baseline variability in education,
intelligence, personality factors
 Lack of insight = not seeking help
 Clinician fear of damaging relationship
 Erroneous belief that “nothing can be done”,
“no good medication treatment”
Recognition Triggers
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Poor historian
– Deferring to spouse or family/friends
– Tangential, circumstantial responses
– Losing track of conversation
– Talking only about topics they know well
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Repeats questions or other information
 Difficulty following instructions
Recognition Triggers
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Seems unable to adapt to change or
experiences functional difficulties under
stress
 Poor hygiene
 Poorly maintained home
 Reduced intake of fluid/food
 Inappropriate clothing, behavior, speech
Objective Assessment
 Subjective
interviews often FAIL to detect
dementia until later stages
 Mental status – Intact older adults should be
able to:
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Describe 2 current events in some detail
Describe what happened on 9/11, New Orleans
disaster, etc.
Name the current President and 2 immediate
predecessors
Describe medical history and names of some
medications
Objective Assessment
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Brief objective measures:
– Mini-Cog
– Mini-Mental State Exam (MMSE)
– St. Louis University Mental Status Exam
(SLUMS)
– Montreal Cognitive Assessment (MOCA)
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Free online, public domain (except MMSE)
 Do not have to be an MD, PhD, or RN
Assessment Tips
Do
NOT
– allow patients to give up prematurely or skip
questions
– deviate from standardized instructions
– offer multiple choice answers
– bias score by coaching
– be soft on scoring
– Score ranges already padded for normal errors
– Deduct points where necessary (be strict)
Mini-Cog
MMSE
SLUMS
MOCA
How to Facilitate Diagnosis
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Follow your instinct, use objective assessment
whenever possible
 Encourage wellness “check-up” with primary
doctor
 Ask family members to:
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Write down main concerns
Accompany person to doctor’s visit
Push for formal memory testing in office
Ask for referral to neurologist, if needed
“Rapid Onset” Confusion
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Medication interaction
 Urinary retention
 Infection (UTI,
pneumonia)
 Fecal impaction
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Dehydration
Uncontrolled blood
sugars
Unrecognized pain
Sleep deprivation
Immobility
Communication & Interviewing
Techniques
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Morning typically best
 Familiarity helps those with dementia feel safe
and comfortable
 Rapport building
– Heightened sensitivity to other people’s moods,
feelings, body language and tone of voice
– Warm smile, relaxed demeanor, sense of humor
– Person needs reassurance and understanding in order to
feel comfortable
– Withholding judgment builds trust
Setting The Stage
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Ask all family, caregivers, and others to
leave the room
 Begin with simple orienting information
 Ask how person likes to be addressed
 Indicate that your visit is a friendly one
 Speak in a low conversational tone
 Move one step at a time
Setting The Stage
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Scan the environment, reduce distractions
– Ask to turn off TV or radio
– Ask to close windows to traffic noise
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Assistive devices
– Strongly encourage use of hearing aids, glasses,
or dentures, if they have them
– Avoid raising your voice as this can increase
feelings of intimidation and fear
Setting The Stage
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Build rapport until person shows softer
facial expressions, relaxed body language
 Posture
– Face the person squarely and look them in the
eyes
– Ask permission to sit near them to be at eye
level
– Never tower over head
The Interview
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Relax
– Smile, use sense of humor
– Project a casual and laissez faire demeanor
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Listen
– Helps to gain more information, increase trust,
reduce conflict
– If trouble finding words, offer examples
Communication Strategies
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Validation
– Most people do not spend enough time doing this
– “Join their team”
– Express directly that person’s thoughts and opinions
are important and deserve attention
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Focus on underlying feelings
– Observe emotions and body language
– What is the person communicating?
– Memories from the past can trigger emotions from the
past
– Offer emotional statements, such as “that must have
been very upsetting”
Verbal vs. Non-Verbal
Verbal
7%
Body
Language
55%
Pitch &
Tone
38%
Communication Strategies
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Slow down
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Be careful to match the pace of the individual
Speak at leisurely pace, in shorter sentences
Be patient and give them time to respond
Try not to interrupt
Paraphrase
– Acknowledge what the other person is saying
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Be active
– Enhance your message with gestures, inflection, objects
– Ask for clarification when needed
Communication Strategies
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Distraction
– If the person becomes agitated, do not argue
– Distract them with more pleasant, benign topic
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You do not have to understand everything
that is said
– Interpret the emotion
– Mirror their facial expressions and body
language
Communication Strategies
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Confabulation
– Some individuals may make assertions that are not true
to cover for memory loss
– Trying to argue them out of such beliefs is usually
futile because person is not lying
– Circle back around to topic later
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Reluctance to participate
– Often fear of someone finding out how bad things are
getting & losing freedoms
– Help individual feel in control (e.g., join with them,
acknowledge fear, offer choices)
Communication Strategies
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Avoidance
– If person begins to move away from questions, changes
subject, becomes tense – go back to building rapport
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Reactions to caregivers
– Note reaction and comfort level when caregiver comes
into room
– Does the caregiver resist letting you speak with the
senior alone?
– Do they try to answer for them?
Getting People to Accept Help
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Work from the familiar
– Who is already a trusted part of their routine?
– Which trusted person is available and willing to
introduce new things?
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Take small steps
– Is there a way to start something as a “social visit” or
“one time trial”?
– Would they try it out with a trusted escort?
– Could the service (or provider) come to them?
– Have a good plan that is shared with all involved
Getting People to Accept Help
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Routine is security
– How can you build things into their existing
structure/routine?
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Reassure fears of losing control
– Give control to them wherever possible through
choices, opinions, being involved in decision
making, etc.
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Focus on their values and interests
– How can you tie the service or intervention into
what the person already likes or enjoys?
Keeping PWD at Home
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Promote:
– Family education about dementia
– Regular (annual) visits to the doctor
 Formal memory loss work-up
 Empower family members to join
– Increased (daily) physical activity, mobility
– Regulated sleep patterns (short naps okay)
– Balanced diet, frequent hydration
Keeping PWD at Home
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Promote:
– Frequent social interactions (but not over
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stimulation)
Regular mental stimulation
Early support and intervention for mood
disturbances
Safety (medication adherence, cooking,
driving)
Psychological, medical, social, and respite
support for caregivers
Community Resources
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Alzheimer’s Association
– Memory loss: not just AD
– 24 hour helpline (800-272-3900)
– Care consultation
– Safe return
– Meeting of the Minds (St. Paul, March)
– One stop shop
 Local memory disorders clinics, support groups,
novel community programs, home supports, service
referrals, healthcare and legal planning, etc.
Community Resources
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Memory Clubs
– Validated education and support program
– Wilder Foundation (651-280-2295)
 Statewide care planning
– Family Memory Care
– Early Memory Care
– 800-333-2433
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and support
Coach Broyles’ Playbook for Alzheimer’s
Caregivers
Questions & Discussion