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 ►
Healthcare Professional Parkinson’s Disease Concerns and Confidence Levels In the Upper Midwest ►
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: ►
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 ►
Presently there is no cure
Treatment is focused on symptom management ►
Symptoms vary from person to person ►
Rate of progression varies over time with each individual ►
Primary (Motor) Symptoms
Tremor ► Slowness (bradykinesia) ► Muscle rigidity ► Changes in posture and balance ►
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 ►
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: ►
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 ►
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 21
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 ►
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
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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
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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 ►
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 ►
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 ►
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 • • • • •
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 ►
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 • • • •
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 ►
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 Joan.Gardner@parknicollet.com