Download Adapting Your Community for Residents with Parkinson`s Disease

Adapting Your Community
for Residents with
Parkinson’s Disease
Joan Gardner RN BSN
Nurse Clinician, Clinic Supervisor
Struthers Parkinson’s Center
Minneapolis, MN
A National Parkinson Foundation
Center of Excellence
The Aging of America
•In 2010, 13% of the population was 65 and older
•By 2030 20% of the population will be 65 and older
•By 2050 4.8% of the population will be 85 and older
•Incidence of Parkinson’s will double by 2030
NIA Strategic Plan for Fiscal Years 2001-2005
Federal Interagency Forum on Aging-Related Statistics.
• 2 out of 3 older Americans
have multiple chronic conditions
• The need for caregiving for older
adults by formal, professional
caregivers will increase sharply during
the next several decades, given the
effects of chronic diseases on an
aging population.
CDC: The State of Ageing and Health in America 2013
Meeting the Challenges of Chronic Illness
Unique individual needs
Ineffective
medication
management for
all problems
Multiple problems over a
continuum of care
Providing knowledge
and support for staff and
family caregivers
Parkinson’s Disease Affects
•1 million Americans
•1% of the population over age 60
•2% of the population over age 70
•More people than those with
Muscular Dystrophy, Multiple Sclerosis
and ALS combined
Family Carepartners
•Parkinson’s Disease not only affects
an individual, but an entire family
•54 million Americans are family
caregivers, averaging 10.5 hours
per day in caregiving responsibilities
(National Family Caregivers Association Survey 2001)
Needs Assessment : PD Concerns and
Confidence Levels In the Upper
Midwest
Distributed surveys to health care
professionals, patients and carepartners
within the Struthers Parkinson’s Center
service area
► Survey results were presented at the World
Parkinson Congress in 2006
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Healthcare Professional Parkinson’s
Disease Concerns and Confidence
Levels In the Upper Midwest
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59.7% of health professionals surveyed reported no PD
specific training in the past five years
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66.1 % felt they did not have sufficient educational
resources to provide to their PD pts
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Overall personal confidence (on a 0-100% scale) for
working with patients with PD averaged 56%.
Specific concerns expressed by staff working
with patients with Parkinson’s:
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Lack of understanding of Parkinson’s disease
Coping with slowness, freezing, and variability of
Parkinson’s symptoms during the course of
providing cares
Difficulty in designing appropriate activities for
those with Parkinson’s
Need for interesting, interactive education about
Parkinson’s disease for all staff
Concerns often expressed by new assisted
living residents with Parkinson’s and their
family members include fear and anxiety about:
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Lack of staff knowledge about Parkinson’s disease
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Staff misunderstanding about the variability of
Parkinson’s symptoms within each day
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Not receiving Parkinson’s medications on time
Managing
Parkinson’s Disease
in the Assisted Living Setting
What Is Parkinson’s Disease?
•Chronic progressive neurological disorder
•Loss of dopamine producing cells in the brain
causes the symptoms of Parkinson’s
Parkinson’s Disease
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Presently there is no cure
Treatment is focused on
symptom management
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Symptoms vary from person
to person
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Rate of progression varies
over time with each individual
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Primary (Motor) Symptoms
Tremor
► Slowness (bradykinesia)
► Muscle rigidity
► Changes in posture and balance
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Potential Non-motor Symptoms
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Handwriting changes
Loss of facial expression
Low voice volume
Freezing of gait
Depression, anxiety
Cognitive impairment
Pain
Changes in autonomic nervous system (orthostatic
hypotension, constipation, bladder changes, skin changes,
abnormal sweating)
Sleep disorders (vivid dreams, restless leg syndrome, REM
behavioral disorder)
Swallowing changes
Medications and Parkinson’s:
Low levels of the brain chemical
dopamine contributes to the development
of Parkinson’s
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Parkinson’s medications replace
the depleted brain chemical dopamine
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Medications need to be adjusted over
time
Medication Management in Parkinson’s:
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Each medication is selected for its effect on one or
more of the symptoms of PD
– Look for improvement of symptoms after a medication
dose
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Each medication is scheduled when it is expected
to provide the best control of a symptom
– Staying on schedule will help keep ahead of PD
symptoms…
Potential Medication Side Effects
•Nausea
•Low blood pressure/dizziness
•Drowsiness
•Hallucinations
•Dyskinesia
Potential Medication Side Effects
Dyskinesia-Involuntary
twisting movements
• A side effect of
levodopa, not
Parkinson’s
symptom
• May or may not be
bothersome to the
resident
Medication Management in Parkinson’s:
Is timing all that important?
–
If late with pills, PD symptoms may be more difficult to control
• May have an entire “bad” or “off”
day if medications are late
• For some, 15 minutes late may
cause symptoms to increase
Give pills on time,
according to the prescribed schedule
Motor Fluctuations
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With progression of Parkinson’s, medication
effectiveness changes, and PD symptoms
progress
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Some experience fluctuation in medication
effectiveness, resulting in a change of ability to
function at different times of the day
– Functioning is affected – might need help doing
the same activity done independently earlier that
day
– Cognition and mood may also be affected when
medication levels are low
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Medications will need to be given more
frequently to help maintain medication levels
in the brain
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Motor Fluctuations
On
Off
May be labeled as manipulative or attention seeking due to fluctuating abilities
Schedules and Timing of
Medications
• Upon admission to your community, ask the
patient/family for specific timing for PD medications
– Typical bid, tid, qid usually does not apply
– Some take their medications through the
day and night to manage symptoms
• Maintain this schedule to ease the transition
Pills on Time Every Time in the
Assisted Living Setting
In care facilities, on time
medication administration is 1 hour
before or after prescribed time.
This does not work well for PD meds.
Explore ways within your care setting
to accomplish “pills on time” for your
Parkinson’s patients or residents
Stress worsens PD symptoms
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Stress will negatively impact symptoms of
Parkinson’s disease
– Physical stressors such as a cold, the flu, other
illness, or surgery
– Emotional stressors such as anxiety, worry, or
feeling rushed
Changes in Walking and
Balance Related to Parkinson’s:
•Shortened step size, shuffling pattern
•Narrow base of support (feet close together)
•Difficulty turning
•Problems starting/stopping motion
•Freezing of gait
•Festination
•Retropulsion
•Balance may be affected
•May require an assistive device
Environmental
Assessment –
for falls reduction
•Maintain clear walking paths
•Wear shoes that fit well and
provide good support - avoid
loose fitting shoes
•Make sure nightlights light
floor surfaces
•Use stair railings and grab
bars
Environmental Assessment
•Install vertical grab bar
at door frame
•One hand on stable object
when reaching overhead or
turning
Communication Challenges
Low Voice Volume:
Related to: muscle rigidity, posture
changes, decreased breath support
Management strategies:
•Decrease background noise.
•Deep breath before starting to
talk
•Encourage use of strong voice
•Speech referral for Lee
Silverman Voice Therapy
Facial Masking
:
Mask like staring expression resulting from loss
of automatic movement. May appear:
* angry
* depressed
* hard of hearing
* confused
Compensations:
•Ask individual feelings or opinion
•Don’t make assumptions
Bradyphrenia
:
Slowness of thought
processes
Compensations:
•Provide choices.
•Allow adequate time for response.
•Don’t make assumptions or decisions
for the person with Parkinson’s.
The Gift of Time
The stress of feeling hurried or rushed will
increase all symptoms or Parkinson’s
► Important for staff to understand
► Difficult to achieve in a busy work environment
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Mood Changes Related to Parkinson’s
Depression
• Under reported and under treated
• Occurs in 40-65%
• May result from chemical changes within
the brain or coping with diagnosis of
chronic illness
Anxiety
• No correlation to disease severity
• May be linked to the on/off phenomena
Treatment strategies include:
• Medications, counseling, relaxation
techniques, support services
Sleep Changes in Parkinson’s Disease
• Difficulty sleeping through the night
due to:
• Bladder changes
• Depression
• Tremor or rigidity
• Problems getting comfortable or turning in bed
• Vivid dreams or nightmares
• REM behavioral disorder
• “acting out” dreams may prevent restful sleep,
causing daytime fatigue & drowsiness
• Restless leg syndrome
• Can occur daytime or at night
Nighttime Comfort and Safety
•Avoid using too many pillows which contribute
to poor posture
•Maintain adequate lighting and ensure floor
surfaces are well lit
•May need to offer increased assistance at night
if medications are not working well
• Satin nightwear or drawsheet, bedrail, lightweight
comforter instead of multiple blankets
Pain and Parkinson’s Disease:
Potential Causes
•Muscle Rigidity
•Dystonia and muscle cramps
•Injuries related to falling
•Other medical reasons
Approaches to Pain Management
Review PD medications for potential
adjustment
May use over the counter or prescription
pain medications
May use superficial heat
or cold
May use massage or other
complementary therapies
Dysphagia – swallow changes
Takes more time and effort to swallow
•May be difficult to get adequate
nourishment and fluids
• May cause reparatory problems if food
or liquid enter the airway
Management Strategies
•Speech referral for swallow evaluation
•Use chin tuck position for swallow
•Consider proper food and beverage consistencies
•Upright positioning during and after meals
Helpful Hints to Make Mealtime Easier
•Covered cups
•Built up eating utensils
•Dinnerware with appropriate color contrast
Cognitive Decline
These changes can cause some of the most troubling and disabling symptoms in PD
Patient does not usually have insight into changes
Speed of information processing (bradyphrenia)
► Slow sluggish thinking with a delay in verbal response
Attention
► Difficulty maintaining attention, easily distracted
Working Memory
► Delayed retrieval of information and word finding
Executive function
► Difficulty with organizing, generating, shifting and blending different
types of information.
“I can no longer multi-task”.
Visuospacial
► Difficulty processing information about their
environment
Cognitive Features of Parkinson’s
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No cognitive impairment
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Mild Cognitive Impairment (MCI)
– Independent in Activities of Daily Living
– Common complaint is “forgetfulness”
– Problems remembering new information
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Parkinson’s Disease Dementia
– Impairment of memory and thinking skills
– Decline in independent activity of daily living skills
– Decline in ability to manage daily activities such as
driving, paying bills, cooking, etc.
Engaging Patients with MCI
Encourage changes in the environment to help
memory
► Calendar for appointments or crossing off days
► “To-do” lists
► Reduction of clutter
► Reduce distractions
► Consistent placement of personal items.
► Provide cues/encouragement - avoid
confrontation.
Parkinson’s Disease Dementia
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Affects adherence to treatment regime
– May be over- or under-medicated
– May not be able to participate in PT/OT/ST
• Worse day to day function
• Diminished quality of life
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Affects safety
– Changes in visual perception may result in falls and collisions
– Reduced insight for symptoms and impulsivity negatively impact
decision-making
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Affects caregiver burden. More responsibility on family members
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Affects finances
– Greater medical costs due to nursing home placements or in-home
care
(Leverenz et al., 2009)
What Triggers a Transition
to the Assisted Living Setting
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Greater functional impairment
Cognitive changes, with or without hallucinations
Falls
Change in family support (death of a spouse)
Hospitalization
• Direct move to a new living situation
• TCU to assisted living
Meeting the Demands for a Parkinson’s
Friendly Community
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Establish a culture of PD awareness throughout a
facility/organization
– Promotes quality of life amongst Parkinson’s residents
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Staff education to improve staff competence and
reduce frustrations when working with PD residents
– Practical easy to understand information appropriate for all
staff
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Common changes in mobility and communication
Why residents fluctuate
Need to provide time and support during daily cares
Importance of pills on time
Care Model Example:
The Struthers Parkinson’s Care Network
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Uses the TULIPS program for staff education
– Highlights the unique care needs for Parkinson’s
– Lessons learned can be immediately applied to daily cares
– Visual cues and follow-up materials provide ongoing
reinforcement of the program
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Each facility/agency appoints a site champion
– Train the trainer model for roll-out of facility/agency staff
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Ongoing communication
– Phone conferences, webinars, site visits, data collection
Struthers Parkinson’s Care Network Goals
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Sustain collaborative relationships with high quality
organizations that are committed to maintaining identified
standards of Parkinson’s education for all staff
Maintain and further develop the level of knowledge and
preparedness of all staff who provide services to persons with
Parkinson’s disease and their families,
Build awareness of the network members as organizations
that have made a commitment to improve care for clients
living with Parkinson’s disease and related movement
disorders
Increase community awareness of Parkinson’s disease
Provide support services for persons with Parkinson’s and
their family members
Document the impact of the program, including patient and
caregiver satisfaction
Thank you!
Questions???
Joan Gardner RN BSN
[email protected]