Interventions for people with Parkinson’s disease
Module III
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Ingrid Sturkenboom, O.T., M.A.
Radboud university medical center,
Department of Rehabilitation & ParkinsonNet,
Nijmegen, The Netherlands
Erin Foster, O.T.D., MSCI, OTR/L
Washington University School of Medicine,
Program in Occupational Therapy
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Disclosures
•
Erin Foster has no financial conflicts of interest to disclose.
•
Ingrid Sturkenboom has received grants/research support from Fonds Nuts
Ohra, Prinses Beatrix Spierfonds, Parkinson Vereniging (for Ph.D. research),
National Parkinson Foundation (for translation guidelines)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Learning objectives
The participant is able to:
1. Describe specific strategies that may improve occupational
performance and participation of persons with Parkinson’s disease
2. Describe intervention options to empower the care partner in
addressing needs of persons with PD and in addressing his/her own
needs
3. Describe the focus and options of OT interventions across the
continuum of the disease
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Occupational performance issues
Problems in areas of:
–
–
–
–
–
–
–
Motor skills
Cognitive skills
Fatigue
On-off
Emotional/ mental status
Environment
….
Increased effort
Slowness
Restricted choice
Need for assistance
Safety concerns
…in occupational
performance
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT interventions in Parkinson’s care
Intervention options mainly based on:
•
Guidelines for OT in PD by Sturkenboom et al.
2008 [2011 English translation].
•
•
Systematic Review by Foster et al. 2014, AJOT.
Review & opinion by Jansa & Aragon 2015,
Parkinson’s Disease.
Content presentation:
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT interventions at a glance
Person
Occupation
=
Occupation
based goal
Environment
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT interventions at a glance
Person: capacity building
• ‘ self-management (coaching)
Person
=
Occupation
based goal
• Training ‘normal’ skills in activity
• Training use of compensatory
strategies:
─ movement strategies
─ other positioning/posture
─ cognitive strategies
Occupation
Environment
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT interventions at a glance
Person
Occupation: reducing
challenge
=
Occupation
based goal
─ Simplify activity or routine
─ Change duration, timing in day
─ Change type of activity
Occupation
Environment
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT interventions at a glance
Physical Environment: adaptations
Person
Apply external cues, cognitive prompts
=
Occupation
based goal
Adjust layout/lighting
(adaptive) equipment
Social environment
Advise/train caregiver
Occupation
Environment
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Self-management approach
•
Processes self-management (dynamic!)1
•
•
•
•
Focus on illness needs
Activating resources
Living with a chronic illness
Interventions1,2
•
Facilitate person to gain knowledge, skills and
confidence to manage living with the disease
Refs: 1 Shulman-Green 2012 J Nurs Scholars; 2Packer
2013 AOTJ
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Self-management approach in OT
• Self-management approach in individual OT
program
– To address specific occupation based goals
• Specific self-management group programs:
Combination
– To address general self-management skills (e.g.
increasing knowledge, discuss activating resources,
communicating about disease, daily routines)
– peer support element
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Self-management approach in OT
•
OT actions
•
•
•
•
•
•
Support PwP to reflect on own
motivation/values, priorities, skills and coping
strategies
Support PwP to set priorities
Provide opportunity for PwP to learn about all
possible options and to select best fitting
options
Support PwP to create appropriate action and
coping plan (problem solving)
Include family members/caregivers
Support person to monitor/ reflect on progress
Shared decision making
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
PwP’s action and coping plan
1.
2.
3.
4.
5.
6.
7.
Goal/ What am I going to do
How important is the change/goal to me?
Assistance I need to achieve my goal
What will make it hard to achieve my goal?
What can I do to overcome my problem?
How much trust do I have I will succeed (0------7--10)
I know that my plan works if…
Based on Scobbie Clin Rehab 2011;
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Motor problem in PD- see module I
• Basal ganglia function
– Performance of automatic motor programs
– Regulation of:
• Simultaneous movements
• Series of consecutive movements
• Logical planning / organization of movements
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Training ‘normal’ motor skills (1)
Possible aims:
• Improve /maintain scaling and speed of
skilled movement, strength, balance
• Improve dual tasking ability
• Prevent disuse
OT focus:
to improve occupational performance
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Training ‘normal’ motor skills (2)
Examples
•
•
•
•
•
Specific daily tasks: e.g. writing
Tai Chi, dance, pole striding…
Specific Parkinson’s programs: LSVT-BIG®, PWR!®
Conventional physiotherapy
…
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Training ‘normal’ motor skills (4)
Requirements for motor learning:1
•
•
•
•
•
•
Functional-exercise (in activities, in context)
Supply cues
High training dose
Balance practice and rest
Gradually increase complexity (e.g. dual
tasks)
Consider using mental imagery
1 Keus
European Physiotherapy Guideline for
Parkinson’s disease, 2014
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Training compensatory movement strategies
I) Using conscious movement
Principle: use of other (intact) areas in brain, bypassing basal ganglia:
Strategies:
1. Focused attention
2. External cueing
3. Strategies for complex movement sequences (conscious attention)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Training compensatory movement strategies
II) Simplification of movement:
Principle: reduce simultaneous and complex movements
Strategies
1. Minimize dual tasking
2. Strategies for complex movement sequences
(stepwise, structure)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
General training principles (1)
•
Use explicit learning (but be aware of cognitive
load)
•
Explain rationale
•
Provide visual and written information
•
Provide specific & positive feedback: on
performance and goals (feasible).
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
General training principles (2)
•
Grade task difficulty
•
Initial training during on period,
application/evaluation during off period.
•
Sufficient repetition and intensity
•
Train in performance context
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Attention strategy
= Self generated internal focus on movement
Examples:
• Think of making large movement: e.g. big/high steps
• Making arc turn
• Rocking side to side
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
External cueing strategy
= Using external stimuli to facilitate
movement, in order to:
•
•
•
regulate rhythm/timing or scaling of
movements
prevent freezing
overcome freezing episode
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
External cueing strategy
• video
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Modalities external cues
Visual
Auditory
Tactile
One-off (for initiation )
Rhythmic (for flow)
line
point of reference
start signal, verbal
command
stripes
flashing light
rhythm (counting, metronome,
buzzer (posture)
music etc)
vibration
tapping with hand
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Selecting cue
PwP
preferences, experiences?
Physical capacities?
Type of activity?
Type of problem? (rhythm, initiation,
amplitude?
Individually
tailored
Cognitive abilities?
Location of problem?
- outdoors, indoors
- adaptations possible?
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Selecting cue*
• Direct effect
• Explore different modalities,
variations
• Tailor the accurate setting of
speed/distances in rhythmic cues
*In collaboration with PT!
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Setting of auditory cue*
Determine baseline step frequency in steps per minute
Non freezers
to ‘increase step length’: 0 up to - 10% of baseline,
indoors up to -15%
to ‘increase speed’: up to + 10% of baseline
Freezers:
to improve rhythm: auditory cues up to - 10% of baseline
Ref : Keus et al, 2014
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Instruction for cues
• Provide a clear & simple instruction
•
•
•
•
Step in rhythm of …
Big step with every beat…
Step on (or over) line
Move to ….(reference point)
Picture of
situation with ref
point
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
•
Cueing takes energy (fatigue): be selective
when to use it
•
Cueing effect fades out: re-evaluation crucial,
continuum of care
•
Cueing is location/task specific
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Strategies for complex movement sequences (SCMS)
= Breaking down complex movement sequences
into simple components in a defined sequence, in
order to:
–
–
•
Enhance efficiency of movement (less effort)
Improve independence of performance
Based on principles: Simplifying movement, Conscious
movement (focused attention)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
SCMS
•
Suited for:
Movement patterns with opportunity for stable resting
position
•
•
transfers: e.g. bed, chair, floor, car
reaching-grasping
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Therapeutic process SCMS
I. Observation:
analyze limited components and coping strategies/preferences in current
movement pattern
II. Reorganize
movement pattern with PwP (subdivide and sequence steps)
• Reduce complexity
• Reduce necessity for speed and accuracy of force
• Reduce influence of balance problems
• Reduce reliance on automatic movement
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Therapeutic process SCMS
III. Summarize sequence in key phrases
•
•
•
Use PwP’s own words
Use visual prompts
Can add use of external cue in SCMS
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
SCMS for sit-to-stand
2. Place
feet
correctly
3. Move
pelvis
forward
4. Flex
trunk
5. Rise look up
1. Hands
on chair
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
See examples: Sturkenboom et al 2008/2011,
OT in PD Guidelines, Appendix
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Therapeutic process SCMS
IV. Intense training with graded stepwise approach using
mental and motor imaging*
1.
2.
3.
4.
5.
Physically guide PwP in performance, with instruction
Ask PwP to carry out with verbal instruction of therapist
Ask PwP to rehearse consecutive components aloud
Ask PwP to use a motor imagery of the consecutive movement
components
Ask PwP to carry out components consecutively, consciously
controlled
Increasing
difficulty
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Combination of strategies, example Writing
Problem
- writing becomes progressively smaller, is irregular
- speed increases
- unreadable
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Combination of strategies, example Writing
External Cues
Attention strategy/other
method
Writing between lines/ in
squares
Slow Rythmic music (to maintain
even speed)
Focus on ‘big’/’large’ movements
Write in block letters (less automatic)
Speak aloud syllables or words
(attention and slowing down)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Effects
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Drinking
Problem scenario
•
To pick up cup and bring to mouth (problem:
amplitude of movement too small)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Strategies ‘cup to mouth’
External Cues
Use colored coaster to
put cup on? (direction
cue)
Attention strategy/other
method
Put cup on point further away
to trigger use of larger
movement.
Focus attention on large
movement (aim for higher
point)
Think of elbow forward, up, or
‘cheers’
SCMS
1. look at cup
2. reach forward
3. open hand
4. pick up
5. to mouth (lip)
6. tip
7. put down
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Non-medical treatment of tremor*
Evidence scarce, only small study populations.
Not looked at long term effects or implications for ADL.



X
Guided imagery
Massage
Whole body vibration
Using weight (e.g. weighted utensils): no effect demonstrated in PD
* Review: O’Connor, Parkinsonism
and Related Disord. 17 (2011)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
What else can we offer?
Apply principles of:
– Reducing stress
– Creating stability (through posture or arm
positioning)
– Compensations in the task or environment
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Cognitive compensatory strategies
• Majority of PwPs’ goals for cognitive rehabilitation
related to executive function
–
–
–
–
Planning
Regulation
Initiative
Time management
(Vlagsma et al., 2015)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Planning daily activity pattern
“Essential strategy to maintain participation”*
Compensation for:
─ Physical and mental slowness
─ Sensitivity for stress
─ Fatigue
─ On-off fluctuations
-------------------------------------─ Lack of initiative/apathy
─ Memory problems
* Thordardottir, Disabil & Rehab, 2014
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Planning daily activity pattern
Mild PD ‘helps to get things done’
Be creative &
careful in selection
of method
Moderate/severe PD:
‘time consuming and energy demanding’
Attention for training
& required support
* Thordardottir, Disabil & Rehab, 2014
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Planning daily activity pattern
•
Specific points of attention:
─
─
─
─
─
Consider medication times
Avoid multitasking
Allow sufficient time per activity
Balance rest and activity (in case of fatigue)
Balance pleasurable activities and ‘must do’
activities
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Strategic executive training
• Metacognitive strategy training
• Problem solving
• Conscious and deliberate strategies to
– re-establish external structure
– improve ability to exercise control over behavior
• Requires awareness, effort & motivation
(Haskins et al., 2012; Vlagsma et al., 2015)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
•Define the problem or
goal
•Anticipate performance
problems
•Generate & evaluate
solutions
•Plan steps
GOAL
Awareness
PLAN
Anticipate,
Plan
Transfer &
generalization
Evaluate
REVIEW
•Self-evaluate
•Peer or therapist
feedback
•What can I do differently
next time?
Execute, Selfmonitor
•Perform the task
•Implement solutions
•Monitor performance
•Practice, practice,
practice
DO
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Time pressure management (TPM)*
How can I give myself more time?
Step 1: Analyzing Time Pressure
What do I need to do?
•
•
Write down the task, divide in small steps
Identify: Which steps might cause time pressure?
• E.g., two or more things to be done at once
* Winkens et al. Clin Rehab 2009
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
TPM
Step 2: Make a plan
•
•
•
Preventing: What can I do before starting the
main activity to minimize time pressure
(preparatory tasks)
Write out a plan for task execution
Handling: What can I do during the task when/if
time pressure is building up? (emergency plan)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
TPM
Step 3: Execute & Monitor
•
•
•
Follow the plan
Attend to steps with time pressure
Use emergency plan when needed
Step 4: Evaluate
•
•
Did you succeed?
What have you learned for a next time?
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Case study: Judy
(strategic executive approach modified from the Multicontext Treatment Approach – Joan Toglia)
• Goal: Preparing Sunday dinners for family.
• Problems (identified during in-depth interview):
–
–
–
–
Gets distracted, sidetracked
Loses place, misses steps
Difficulty with the timing
Doesn’t have all of the ingredients
Attentional control,
working memory,
planning
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Anticipate/Plan/Generate Solutions:
• Planning
– Review recipes several days
in advance
• Grocery shopping
• Anything to make or prep
ahead of time
• Regulation
– Ask the family to stay out of
the kitchen
– Ignore the phone
– Do laundry earlier in the day
(eliminate multi-tasking)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Execute & Evaluate:
• Simulated structured activities
that involved multiple steps &
shifting
– Pre-activity questioning to promote
anticipation & strategy generation
– Post-activity evaluation to promote
strategy generation
• Real-life implementation on
Sundays
• Write out a master, step-bystep plan before beginning
• Check off steps as they are
completed
• Eat dinner earlier so can
spend time with
grandchildren after
• Use a timer
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Promoting transfer & generalization
Judy
• Systematically modify treatment activities
– increase transfer distance
– change performance context
– make more challenging
•
Added distractions,
tasks, mobility
requirements, time
pressure
•
Teaching Sunday
school, grocery
shopping, running
errands, talking on
the phone
• Discussion & brainstorming
– What other problems/activities might these
strategies help with?
– How might they need to be modified?
• Home practice – Goal, Plan, Do, Review
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Some specific strategies for PD
• Do one thing at a time
• External cues
– E.g., alarms, medication organizers, notes, signs, etc.
• Focused attention during encoding
– Repetition, association
• Visualization
• Self-check
– During and after task
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Environmental adaptations
•
•
•
•
•
•
•
Change layout
Add support
Remove fall hazards & obstacles
Re-organize
Improve lighting
Add required cognitive prompts or external cues
Adapt existing furniture/tools or provide new assistive
technology
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Environmental adaptations
• Extra important in PD:
•
•
•
•
•
Consider fluctuations in performance
Tailor to individual need and wishes
Let PwP try adaptations for a few days
Ensure understanding and proper use
Follow up/monitor
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Care partner
1. Support PwP in reaching goals
–
–
–
Involve in assessment and treatment
Educate on disease and implications
Train specific caregiving skills
2. Address own needs as a client
–
–
Encourage self-management & wellness (maintaining own health,
balancing care with own activities, resource utilization)
Environmental adaptations to support caregiving
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Patient Education Program Parkinson (PEPP)
• 8 session group education program
– PwP and caregivers seperately
– To address psychosocial issues
– Cognitive-behavioral techniques
• Associated with a reduction of
caregivers’ psychosocial burden and
need for help.
(A’Campo et al., 2010, 2012; Pasqualini & Simons, 2006)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
WHEN WHAT?
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Therapeutic care continuum*
Disease
stage
Evaluation
findings
Early stage



Intervention
strategies
1.
2.
3.
Few/minimal impairments
No/minimal activity
limitations
No participation
restrictions
preventative
restorative
+/- compensatory
Middle stage



1.
2.
3.
Increasing no /severity
impairments
Minimal/moderate activity
limitations
Minimal/moderate participation
restrictions
compensatory
preventative
+/- restorative
Late stage



1.
2.
3.
Numerous/ severe impairments
Severe activity limitations
Severe participation restrictions
compensatory
preventative
(+/- restorative)
+ Patient and family/caregiver education and training, + Psychological support, +/- Referral to other HC
professionals as needed
* Based on Quinn et al. J. Hand Therap 26 (2013)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT in early stage PD
OT treatment aim
Maintaining or improving activity performance; prevent giving up valued
activities/roles
Treatment approach
1. Preventative

Prevent disuse (e.g., of affected UL)
2. Restorative

‘Exercise’ in functional tasks to improve motor or process skills, e.g.
writing
3. +/- compensatory


Energy conservation/ergonomic principles when fatigue is an issue
Cognitive strategies (planning, diary use)
+ education, support



Effect of disease on activities/participation
Options for and benefit of early interventions
Support to deal with uncertainty/concerns for future
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT in middle stage PD
OT Treatment aim
Optimizing activity performance and participation
Treatment approach
1. Compensatory



Alternative and compensatory strategies : e.g. cues, SMCS, focused attention,
cognitive strategies.
Optimizing daily routines (i.e. fatigue management, dealing with possible
on/off) and simplifying activities
Assistive devices and modifications
Caregiver training on assisting/supervising pt
2. Preventative

Prevention of disuse
+ education, support




Effect of disease on activities/participation
Community and health resources for PwP and caregiver
Support in planning for future
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
OT in late stage PD
OT treatment aim
Treatment approach
1. Compensatory
2. Preventative
+ education, support
Enabling adapted involvement in meaningful activities and prevention of
complications due to immobility.




Externally assisted movement strategies
Externally provided cognitive cues/strategies: timetables, structure in activities
Adapt task/environment/tools
Caregiver training (i.e. safety in manual handling)


Prevention of pressure sores, postural deformities
Prevention of (unwanted) occupational deprivation by exploring opportunities
for engagement in meaningful (leisure) activities



Related to meaningful occupational engagement
Advice on appropriate living arrangements
Support for caregivers on maintaining own well being (occupational balance)
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association
Tailoring interventions
1.
2.
3.
4.
5.
6.
What is occupation based goal of client?
What contributes to the problem?
Disease stage
Strengths and coping strategies of client? (what is
potential for change)
Resources/limitations in performance context?
Resources/limitations in healthcare context?
Best Evidence
Client Values
OT Expertise
Solution
scenarios
© 2015 Parkinson's Disease Foundation &
American Occupational Therapy Association