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11/8/2021
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DISCLOSURE
Daylily, Inc. and Lyn Hilgenberg do not have any financial relationships with commercial interest companies to disclose.
Care Connections &
Non-Pharmacological Methods
• Behavior as a form of communication
• Ability to define the four primary problem-solving components for distressing dementia behavior
• Practical solutions in coping with five of the most frequent distressing behaviors
November 12, 2021
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Hi!
Nice to meet you!
Think about…
The 3 words that most describe you?
If you could not speak for yourself, what are the 3 most important things your care partner must know when caring for you?
Think about…
Who was your “most significant person” that helped raise you?
What would you put down as an introduction?
“A journey without challenges has no meaning and one without purpose has no soul.”
The Art of Pilgrimage
Phil Cousineau
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CommunicationCommunication
Gaining Insight by Understanding Behavior
&
The Dementia Patient/Resident
Gaining Insight by Understanding Behavior
&
The Dementia Patient/Resident
Sensory Changes with Dementia
Vision: decreased vision, color perception, night vision, peripheral vision…
Hearing: decreased hearing, but sensitivity to loud noises, trouble filtering sounds.
Smell: changes in smell or unusual odors, like smoke…
Taste: changes in taste for foods
Touch: may be decreased sensation or oversensitivity to some stimulation
Life Changes Trust https://www.lifechangestrust.org.uk/useful‐resources
https://www.lifechangestrust.org/uk/publications
https://www.lifechangestrust.org.uk/projects‐evidence‐and‐learning
For Persons Living With Dementia…Why is this happening?
All aspects of the PLWD are affected:
• Thoughts
• Words
• Actions
• Feelings
It is in constant flux
• Moment to moment
• Morning to night
• Day to day
• Person to person
It is progressive
• More areas of the brain die
• Different parts are affected
• Changes occur constantly
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Personal Expressions May Represent:
• Unmet needs / Challenges to well‐being
• Sensory Challenges
• New communication pathways
• New methods of interpreting and problem‐solving
• Response to physical or relational aspects of environment
• May be perfectly normal reactions, considering the circumstances!
• Actions that are threatening to one’s dignity(NO medication will help these!)
Dementia Through the Looking Glass
“We arrive here at a variant of the care/cure culture problem. Physicians saw no potential for cure, thus no need for treatment. Such people ‘only’ needed care. When people with dementia left mental hospitals for nursing homes, the goal was to provide ‘custodial ‘ care at the lowest possible cost.”
“Dementia is a brain illness. And so are depression and schizophrenia. The symptoms that make dementia problematic for caregivers, and embarrass or isolate those suffering with dementia, are often the same ones that lead to stigma against patients with a mental illness…All should be met with compassion, not censure.”
Tia Powel, MD Dementia Reimagined
G. Allen Power, MD, FACPDementia Beyond Drugs: Changing the Culture of Care
Dementia Beyond Disease: Enhancing Well‐BeingTia Powell, MC
Dementia Reimagined: Building a Life of Joy & Dignity from Beginning to End
What is Well‐Being & How does it Impact Dementia Care
• Sees the illness in the context of the whole person
• Destigmatizes personal expressions
• Understands the power of the relational/historical/environmental context
• Focuses on achievable, life‐affirming goals
• Brings important new insights
• Helps reduce/eliminate antipsychotic drug use
• Is proactive and strengths‐based
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Person Centered Care Philosophy
Emphasizes residents’ perspectives and their defined experiences and needs.
Founded on the ethic that:
all human beings are of absolute value and worthy of respect, no matter their disability,
and on a conviction that people with dementia can live fulfilling lives.
Where This Can Lead:
• From seeing a fatal disease to changing abilities.
• Appreciation that the person’s experience is critical!
• From psychotropic medications to “pennies on the stylists.”
• A path to continued growth.
• An acceptance of the “new normal.”
• A directive to help fulfill universal human needs.
• A challenge to our interpretations of distress.
• A challenge to many of our long‐accepted care practices.
A Framework for ViewingWell‐Being
Identity
Connectedness
Security
Autonomy
Meaning
Growth
Joy
Adapted from Fox, et al. (2005 white paper),
now “The Eden Alternative Domains of Well‐Being™”
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Well‐Being?
• What is quality of life?
• How do we define genuine caring?
• What makes life worth living, and how do we measure it?
Quality of Life…
Quality of life is improved through:
• maintaining choice and control,
• physical and cognitive support,
• comfort and personal care,
• creating a sense of normalcy.
Successful Care Begins With…
• Respecting individualityo Involve choice of resident & family
oNon‐judgmental
• Promote dignity
• Encourage independence
• CommunicationoCare partner connection
oRecognize vocalization attempts
• Meeting needs
• Being known!
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A New Dementia Definition to Consider
“Dementia is a shift in the way a person experiences the world around her/him.”
G. Allen Power, MD, FACP
Four Components of Care
Review of Intervention Strategies
Intervention Strategies…
Management of Challenging Behaviors in Dementia
Mahoney, Volicer, & Hurly
Physical Environment
Social Environment
Care Partner Knack
Medical Treatment/Needs
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Medical
Medication effects
Changes in five senses (eyesight, hearing, etc.)
Acute illness or Chronic illness exacerbation
Dehydration
Constipation
Depression /Anxiety
Fatigue
Physical discomfort / Pain levels
Physical Environment
Environment too large(small 4‐6 person groups preferable)
Room temperature
Access to nature/outdoors
Too much clutter (especially in prime interest areas)
Poor sensory environment (lighting, noise, aroma, dining setup)
No orientation information/ cues
Unfamiliar environment(Encourage personalization of spaces)
Social Environment
TV Watching behaviors/ conditions
Activities meaningful & capacity appropriate
Loneliness/helplessness/boredom
Excessive stimulation
Unstructured environment
Noise/Sound level
Social comfort level
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Caregiving Knack
Task request issues (too complicated, too many steps, not modified to ability, an unfamiliar task)
Communication issues (your approach, when you speak/touch)
Using proper techniques (ADL assistance, bathing principles, introductions, use of verbal & non‐verbal techniques)
Family & Staff Expectations (understood and on the same page)
Searching for Practical SolutionsManaging Tough Situations
Non‐Pharmacological Interventions, Why They May Fail:
The typical “nonpharmacological intervention” is an attempt to provide person‐centered care with a biomedical mindset
• Reactive, not proactive
• Discrete activities, often without underlying meaning for the individual
• Not person‐directed
• Not tied into domains of well‐being
• Treated like doses of pills
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For Example…
• Addressing resistance during bathing becomes more than simply adjusting our bathing technique.
• It involves ongoing, 24/7 restoration of well‐being, especially autonomy, security, and connectedness
• These domains of well‐being must be not only be appreciated, but actively operationalized throughout daily life
• This requires a transformative approach to support and care in all living environments (i.e., “culture change”)
A Simple Language RuleNever use a word or phrase to describe someone that you would not want used to describe you, or someone you love.
Common Complaints
Losing important things
Repeated calls & contacts
Making up stories
Resisting careSwearing & cursing
Calling 911 ShadowingEloping/
WanderingGetting into
thingsThreatening Caregivers
UndressingStriking out at
othersFalls & injuries
Not eating or drinking
Refusing
Seeing things & people
Sleep time confused
Being rude
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Anger… Agitation Coping Strategies
• Allow time for response to directions or requests
• Give clearly stated directions/ step by step
• Offer activities they are capable of doing
• Consistent staffing – especially the person they like
• Use families/ volunteers for 1/1 activities
• Identify the stressful times of day
• Have staff share successful or unsuccessful techniques
• Be aware of how shift changes can provoke anxiety
Bath Time Coping Strategies
• Evaluate the best time of day
• Be as consistent as possible with their past routine
• Bathroom warm and inviting
• Create a feeling of privacy
• Adequate lighting
• Offer a reward
• Shower cap to “protect their hair”
• Give them a washcloth to hold or something to “fiddle” with
• Wrap a warm towel around shoulders
• Play soft music
• Use their favorite lotion or after bath spray
Dementia Dining Coping Strategies
• Dental checkup – partial, denture, broken or infected teeth
• Remember vision changes
• Watch noise and distractions
• Hand under hand technique when necessary
• Allow enough time and pair your table mates accordingly
• Staff socialize with residents NOT each other
• Guide with gentle and respectful language
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Sleep Disturbance Coping Strategies
• All clues point to sleeping…
• Treat pain history!
• Temperature – cold or hot
• Softly playing music for some
• No caffeine intake or diuretics after 5:00 p.m.
• Note the time they get up
• Relax as a staff – you are there 24 hours for a reason
• Watch out for noisy nighttime shift changes!
• Gently remind that it is dark out and time for sleeping
Wandering Coping Strategies
• Provide opportunities for exercise – including singing, rhythmic movements, dancing
• Is it a stress reducing behavior?
• Allow safe exploration
• Reinforce bathroom location
• Clothes are comfortable and meet skill level to get off & on
• Note the time for links to past schedules/ responsibilities
Repetitive Actions Coping Strategies• Redirect to a favorite activity – walking, reminiscing, food
• Respond to emotion instead of the specific question – reassure
• Calm voice when answering
• Written signs (for those that can still read) that say the schedule
• Discuss plans JUST PRIOR to the activity
• Are they looking for response or just “self verbalizing?”
• Is the questioning the way they are finding to gain attention
• Social “Chit Chat” remains…
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Consider:
• What if most of the hard‐to‐decipher distress that we see is related to the erosion of one or more aspects of the person’s well‐being?
• Well‐being is a need that transcends all ages, abilities, and cultures, and yet…
• Wouldn’t it be wise to work on options that find ways to operationalize programs which respect well‐being?
• Is it any surprise that people we care for have ongoing distress, even though we have “done everything we can think of” to solve it using traditional methods and medication?
Final Challenges: The Way to Create Change
What kind of community do you want to live in?
Why is this important to you?
How is that different from how you see
things now?
What are some of the things that need to happen to create that kind of change?
Thank you!
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