Adapting Your Community

for Residents with

Parkinson’s Disease

Joan Gardner RN BSNNurse 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

Multiple problems over a

continuum of care

Ineffective

medication

management for

all problems

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

► 66.1 % felt they did not have sufficient educational

resources to provide to their PD pts

► 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:

► 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

► Staff misunderstanding about the variability of Parkinson’s symptoms within each day

► Not receiving Parkinson’s medications on time

in the Assisted Living Setting

Managing

Parkinson’s Disease

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

► 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

► 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

► 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

► 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

► Medications will need to be given more frequently to help maintain medication levels in the brain

21

Motor FluctuationsOn 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

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

Pills on Time Every Time in the

Assisted Living Setting

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:

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

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

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

Dysphagia – swallow changes

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 DeclineThese 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

► Mild Cognitive Impairment (MCI) – Independent in Activities of Daily Living

– Common complaint is “forgetfulness”

– Problems remembering new information

► 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

► Affects safety– Changes in visual perception may result in falls and collisions– Reduced insight for symptoms and impulsivity negatively impact

decision-making

► Affects caregiver burden. More responsibility on family members

► 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

► 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

► Each facility/agency appoints a site champion

– Train the trainer model for roll-out of facility/agency staff

► Ongoing communication

– Phone conferences, webinars, site visits, data collection

Struthers Parkinson’s Care Network Goals

► 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