1. Overview of PD

2. What is PD? History of PD
Cathi A. Thomas, MS, RN, CNRN
Department of Neurology
Boston University Medical Center

3. What is Parkinson’s Disease (PD)?
• PD is described as a chronic, progressive
neurological condition.
• Second most common neurodegenerative
disease following Alzheimer‟s disease
• PD is a “hypokinetic” movement disorder.
• Movement Disorders are a group of conditions
that cause abnormal movements usually “too
much” or “too little”.

4. Parkinsonism
• IDIOPATHIC PARKINSON’S DISEASE.……....85%
• Neuroleptic-induced parkinsonism…………7% - 9%
• Multiple system atrophies (MSA)……………….2.5%
• Progressive supranuclear palsy (PSP) ………..1.5%
• Vascular parkinson syndrome…………………….3%
• MPTP, CO, Mn, recurrent head trauma………....rare
• Postencephalitic parkinsonism……none since 1960s

5. Historical Perspectives
• James Parkinson (1755-1824) published An Essay
on the Shaking Palsy, 1817, London
Described:
• “Involuntary tremulous motion, with lessened
muscular power, in parts not in action and even
when supported; with a propensity to bend the
trunk forwards, and to pass from a walking to a
running pace: the senses and intellect
being uninjured.”

6. History (cont’d)
• 1960‟s - Discovery of the neurochemical basis
of PD; use of L-dopa (precursor of dopamine)
by Dr. George Cotzias
• 1990-2000 “Decade of the Brain”
• 21st Century - PD now considered a multi-
system disorder

7. PD - Who is affected?
• Recent study (Willis AW, et al, 2010) identified
demographic and environmental factors of PD
• Used extensive Medicare data set from over 10
years
• 1.6% of U.S. population over 65 has a dx of PD

8. PD - Who is affected? (cont’d)
• Approximately 130,000 people newly diagnosed each year
in US
• Men slightly more likely to have PD
(1.55 male : 1 female ratio)
• Caucasian men in the U.S. have up to double the rate of PD
as compared to African Americans or Asians
• Asian women have lowest rate of PD in the U.S.
Reference: Willis AW, et al. Geographic and Ethnic Variation in Parkinson Disease:A Population-Based
Study of US Medicare Beneficiaries. Neuroepidemiology 2010;34:143-151

9. PD - Who is affected? (cont’d)
• Diagnosis typically occurs in the 5th and 6th
decade of life (average age 63)
• 5-10% of people have symptoms < 45

10. • Projected number of people with
Parkinson‟s disease in the most populous
nations will double by 2030- 4.3 million to
9.5 million worldwide.
E.R. Dorsey et al, Neurology 2007;68:384-386

11. Economic Burden
• Staggering Costs
• The combined direct and indirect cost of PD including
treatment, social security payments, and lost income
is estimated at 25 billion in the US
• Medication costs average $2,500 annually
• Surgery costs average $100,000
(PDF Fact Sheet, 2007)
• 2-7% of individuals in long-term care settings have a
diagnosis of PD (Caring for the Ages - AMDA, 2003)

12. Introduction to the Role
of the Nurse in PD Care
Cathi A. Thomas, MS, RN, CNRN
Department of Neurology
Boston University Medical Center

13. Delivering Care
• The delivery of quality care to a patient/family living with
Parkinson‟s Disease is complex and requires multiple
disciplines working collaboratively to reach the best
possible outcome
• Quality Care is supported by care that is patient-centered,
evidence based, and delivered by interdisciplinary teams
• The nurse is a core member of the interdisciplinary
team.
Hickey, J., The Clinical Practice of Neurological &Neurosurgical Nursing, 6th
edition, 2009 Wolters Kluwer Health, Philidelphia,PA.

14. • Nurses play an important role in care
delivery across the continuum from
diagnosis to end of life
• Nurses encounter PD patients in many
clinical settings
• Increased utilization of nurses as disease
progresses

15. Nurse Specialists in PD (U.S.)
• Work in Movement Disorder Centers
• Neurology Practices with large PD populations
• Neurosurgical Practices with DBS Programs
• Information and Referral Centers funded by lay
organizations including APDA, and NPF
• VA PADRECC Centers

16. These Nurses function as:
• Nurse Practitioners
• Clinical Nurse Specialists
• Nurse Clinicians
• DBS Nurses
• Research Nurses
• Coordinators supporting the Community at large
(National organizations; APDA/NPF)
• And more

17. “Frequent-Encounter” Nurses
• Long Term Care Nurses (AMDA 5-10%)
• Rehabilitation Nurses
• Home Care Nurses (VNA, Parish Nurse, etc.)
• Adult Day Health / Assisted Living Nurses
• Geriatric Treatment Program Nurses
• And more

18. “Chance-Encounter” Nurses
• Nurses in Acute Care Settings (ER‟s, medical-
surgical areas, orthopedic units, critical care
units, psychiatric units, perioperative settings)
• In the neighborhood….

19. Clinical Care
• Assess signs and symptoms of an individual’s
disease process and response to treatment over time
(i.e. medication, bowel, bladder…)
• Assess impact of these human responses on an
individual‟s quality of life
• Provide patient/family focused care
• Assess patient/family coping strategies, define un-
met needs, and provide support in accessing
resources

20. Clinical Care (cont’d)
• Provide patient/family education *medication*
• Provide ongoing assessment and support to patients
in between visits via telephone/e-mail
• Implement center protocols to increase
communication between patient/family and other
disciplines (telephone triage, diary training)
• Develop programs that enhance the delivery of care
(day evaluation program)

21. Education and Support
• Patient/family education
• Healthcare professionals
• Community at large

22. Patient/Family
Education and Support
• Disease process, targets of therapy, medication
management, DBS, self management of activities
of daily living, safe mobility, coping strategies
• Development of educational programs and
symposia for patients/families in a practice or
community (newly diagnosed, young onset, family
caregivers)

23. Research
• Nurses participate in PD research in a
number of ways:
• Investigator exploring models of care
evidence-based practice
• Consultant to other disciplines conducting
research “providing the nursing perspective”
• Clinical Trial Coordinator (Parkinson Study
Group, NET PD, Industry trials)

24. Thank You To All Of The Nurses Who Have Supported Me Along The
Way. A Special Thanks To The Nurses Who Have Joined Us Today.
Happy Neuroscience Nurses Week!

25. Overview of Pathogenesis
and Epidemiology of PD
Susan Heath, MSN, RN
Movement Disorders CNS
San Francisco VA
Parkinson‟s Disease Research, Education and
Clinical Center
(PADRECC)

26. Objectives
• Describe current evidence and theory of
the pathogenesis of idiopathic Parkinson‟s
Disease.
• Discuss genetic and environmental
evidence and theory into the cause/s of
Parkinson‟s Disease.

27. Pathogenesis: What happens to
the brain in PD?

28. Parkinson’s as we were taught
Olanow, C. W. et al. Neurology 2009;72:S1-S136

29. Lewy Bodies
• Alpha –Synuclein are proteins found inside Lewy Bodies
and these are the pathologic hallmark for PD.
• Unknown if LB‟s are the toxin to the cells causing PD?
• Or are LB‟s the end result or „trash can‟ response in dying cells?

30. Parkinson’s as we think about it now
Olanow, C. W. et al. Neurology 2009; 72:S1-S136

31. Multiple Sites of
Neurodegeneration in PD
•Dopamine (DA)– red
•Norepinephrine – green
(May precede loss of DA: Associated with
brain functions such as: sleep, memory,
learning and mood)
•Serotonin – orange
(May precede loss of DA: Associated with
mood, anxiety, appetite, GI function and pain)
•Acetylcholine – blue
(Associated with memory and learning)
Lang & Lozano
(1998)

33. Theoretical Causes of Idiopathic PD
• Idiopathic PD is 90-95% „sporadic‟ and only 5% familial.
• Etiology of sporadic form of PD is unknown.
• Several single gene mutations are identified in familial
PD but only a minority have a clear familial pedigree
• More common in 1st degree relatives by 2-3 fold
• PD twin study showed no sig. concordance of PD
except if onset before age 50.
• Thus young onset PD is more genetically determined.

34. Genetic Causes of PD =
Parkinson’s genes have given clues to the multiple paths to cell death:
• Mitochondrial and oxidative stress
• Protein degradation malfunction (trafficking)

35. Parkinson’s Disease & the Pesticide Link
Environmental toxins (fungicides, herbicides and pesticides)
are actively being investigated
From: Web Ross MD
Slides used with permission

36. • In a recent review, over 24 of 31 case-control studies
have shown an association of PD and pesticides.
• PD risk is 1.6 to 7 times higher in pesticide exposed
• The higher the exposure the greater the risk
BUT
• Broad
•
chemical
• •
• categories
• •
• Few specific
agents identified
Brown et al, 2006
From: Web Ross MD
Slides used with permission

37. Summary: Pesticide - PD Link
• Association does not prove „cause and effect‟ and the
evidence that pesticides cause PD is still not definitive.
• National Academy of Sciences Institute of Medicine
determined that “there is limited or suggestive evidence
of an association between exposure to the compounds of
interest and PD”

38. Summary: What we know about
the Pathogenesis of PD
• Causes of PD remain elusive. (Tanner, 2010)
• PD is more complex, gone is the simple notion that PD is a
simple lack of dopamine.
• Sporadic PD is diagnosed after the alpha-synuclein
pathology has reached an advanced stage. (Braak et al,
2003)
• Genetic mutations may contribute to one‟s susceptibility.
• Most cases of sporadic PD are thought to be caused by an
interplay of environment and genetics.

39. “The Parkinson Umbrella”
Importance of Differential Diagnosis
Gwyn M. Vernon, MSN, CRNP
University of PA
Parkinson‟s Disease and Movement Disorder Center
and School of Nursing

40. Disclosures
• Speaker‟s bureau
• Ipsen
• Teva
• Medtronics

41. Objectives
• Briefly, identify how the diagnosis of PD is
established
• Compare and contrast conditions and
considerations in the differential
diagnosis, ie. secondary parkinsonism and
atypical parkinsonian syndromes

42. PD can be misdiagnosed
40
35
30
25
20
15
10
5
0
Clinically Autopsies

43. How is PD diagnosed?
• Prodrome phase
• Depression, anxiety, non-specific cognitive
changes, chronic constipation
• Initial clues may be non-motor
• Pain/sensory complaints, urinary symptoms,
lethargy, visual symptoms

44. Non-Motor Symptoms (NMS)
at initial presentation
60%
50%
40% Pain
Urinary
30% Depression
Cognitive
20% Lethary
10%
0%

45. Delayed referral with non-
motor symptom presentation

46. THE DIFFERENTIAL DIAGNOSIS:
PARKINSON’S AND
“Parkinsonisms”
• Idiopathic Parkinson‟s disease
• Secondary Parkinsonism
• Atypical Parkinsonism

47. DIAGNOSIS OF PD:
Motor Characteristics of IPD
• Two of the following:
• Rest tremor, cogwheel rigidity, bradykinesia
• Asymmetric presentation
• Robust response to levodopa

48. Additional Differential
Diagnostic Considerations
• Secondary causes ruled out
• Often treatable or reversible
• Atypical parkinsonian features not present
early
• Neurodegenerative, progressive

49. Secondary “Parkinsonism”
• Metabolic (Wilson‟s disease)
• Vascular lesions (Multi-infarct states)
• Structural lesions (Hydrocephalus)
• Drug induced

50. Drug-Induced Parkinsonism
• Typical neuroleptics
• Such as haloperidol (Haldol)
• Metaclopramide (Reglan)
• Prochlorperazine (Compazine)
• Promethazine (Phenergan)
• Atypical neuroleptics
• Risperidone (Risperdal), olanzapine (Zyprexa)

51. Atypical Parkinsonism or
“Parkinson-plus” syndromes
• Neurodegenerative disorders
• May mimic PD early on
• Progressive; treatments limited

52. Common Atypical Parkinsonisms:
Approximately 15 % of presenting “PD” cases
• Corticobasal degeneration
• Dementia with Lewy bodies
• Autopsies commonly show
• Multiple system atrophy
• Progressive supranuclear palsy
• Alzheimer‟s pathology

53. American Academy
of Neurology
Practice Guideline • Symmetry of signs and
(2006)
symptoms
• Lack of tremor
• Characteristics
supportive of • Poor response to
other levodopa
parkinsonian
syndromes • Falls early in course
• Dysautonomia early
• Rapid progression

54. Corticobasal Degeneration
• Parkinsonism; +/- tremor, bradykinesia
• +/- dystonia, myoclonus
• Pronounced asymmetry
• “Alien limb”, apraxia
• Speech and sensory abnormalities
• As name implies, degeneration of multiple cortical areas, especially
frontal-parietal and basal ganglia; cause unknown, possible
abnormality of “tau” protein

55. Dementia with Lewy Bodies (DLB)
• Parkinsonism – bradykinesia and rigidity
• Concurrent cognitive decline with
• FLUCTUATING ALERTNESS AND
ATTENTION
• VISUAL HALLUCINATIONS
Multisystem accumulation of abnormal protein deposits (Lewy
bodies) in brain stem, basal ganglia and cerebral cortex………

56. Multiple System Atrophy
• Shy-Drager • Autonomic
degeneration
• Striatal-nigral • MSA – P
degeneration
• Olivopontocerebellar • MSA -C
atrophy

57. Multiple System Atrophy
• Autonomic and Urinary Dysfunction
• Orthostasis > 30 mmHg systolic or > 15 mmHg diastolic, or
• Urinary incontinence, or
• Both
• Parkinsonism (MSA-P)
• Bradykinesia plus one of rigidity, tremor or postural instability
• Cerebellar (MSA-C)
• Gait ataxia, plus one of : dysarthria, limb ataxia or sustained
gaze evoked nystagmus

58. Progressive Supranuclear Palsy (PSP)
• Parkinsonism: Bradykinesia, rigidity
• Severe, early imbalance and falling
• Slurred speech, dysphagia
• Myoclonus
• *Inability to gaze downward
• “A tauopathy” characterized by abnormal accumulations of tau
protein in cerebral cortex especially frontal areas, basal ganglia,
cerebellum and spinal cord

59. Alzheimer’s disease with
motor features
• May appear to have severe bradykinesia
• May have apraxia, visuospatial issues
• Probably have:
• Severe psychomotor slowing
• Major depression (22.5-54.4%)

60. Diagnosis of
Parkinson’s disease
• Difficult; delayed; often misdiagnosed
• Based on history and clinical findings; no
laboratory testing

61. Parkinson’s vs. Parkinsonism
Common differentials to consider
• Idiopathic, typical Parkinson‟s disease
• Secondary parkinsonism
• Metabolic, Vascular, Structural, drug induced
• Atypical parkinsonisms
• Corticobasal degeneration, Dementia with Lewy bodies, MSA,
PSP, Alzheimer‟s pathology

62. Differential Diagnosis
Resources
• Locate a specialist:
• Parkinson’s Disease Foundation national
hotline 800-457-6676; or “ask the expert” at
www.pdf.org
• National Parkinson Foundation
• www.parkinson.org; click on “find resources”
• American Parkinson Disease Association
• www.apdaparkinson.org; click I and R centers

63. A correct diagnosis
Leads to improved patient care
Lessens unnecessary interventions
Gives patient and family
confidence and support

64. Review of Lisette Bunting
Perry’s PD Model of Care
Lisette Bunting-Perry, Ph.D., R.N.
Conflicts of interest: None

65. Lecture Outline
• The Parkinson‟s Disease Model of Care
• Why develop a model for nurses?
• U.S. Demographics
• What is palliative care?

66. Why Develop a Model for
Nursing Care in PD?
• Nursing as a science
• Chronic disease – Parkinson‟s disease
• Nursing care specific to PD
• Palliation as a philosophy of care across
the lifespan
• Need to frame our work – the science of
caring

67. Parkinson’s Disease Model of Care
100%---
Treatment of PD (Prolongation of Life)
Schwab & England ADL Score
Bereavement Care for Family
Advanced P.D.
Moderate P.D.
Early P.D.
Hospice
Palliative Care (Relief of Suffering)
0%--- | | | | | | |
1.0 1.5 2.0 2.5 3.0 4.0 5.0
Diagnosis of Hoehn & Yahr Score Death
Parkinson’s Disease
Bunting-Perry, L. (2006). Journal of Neuroscience Nursing, 38(2), 105-112.

68. Theoretical Models
and Nursing Science
• A theoretical framework allows for the
structure of scientific inquiry, the framing
of research questions, and the explication of
relationships among important variables
and outcomes.
• Few theoretical models have been proposed
to guide care for patients with PD and their
family.

69. The Demographic Imperative:
U.S. Projections
• People age 65 and over is projected to increase from 39
million in 2010 to 69 million in 2030.
• The 85 and older population is expected to more than
triple, from 5.4 million to 19 million between 2008
and 2050..
• The aging of the population will increase the annual
number of deaths by over 70%, from 2.3 million in
1995 to 4.0 million in 2050. (US Census Bureau, 2008)
www.capc.org

70. U.S. Life Expectancy: Sex

71. U.S. Projections

72. Medicare: Personal Care

73. US Data: Memory Impairment

74. Incidence of Parkinson’s Disease:
Variation by Age, Gender, and Race/Ethnicity
Van Den Eeden et. al, 2003
• Goal: was to estimate the incidence of
Parkinson‟s disease by age, gender, and ethnicity
• Findings: gender-adjusted incidence rate of 13.4
per 100,000 cases
• Age: Incidence increases over the age of 60 years
• Sex: 91% higher incidence in males as compared
to females
• Race: Highest among Hispanics: 16.6/100,000
• Non-Hispanic Whites: 13.6/100,000

75. The Reality of the Last Years of
Life: Death Is Not Predictable
(slide courtesy of Joanne Lynn, MD Rand Corp.)
Covinsky et al. JAGS 2003;
Lynn & Adamson RAND 2003.
Morrison & Meier N Engl J Med 2002.
100 CANCER
CHF, dementia
80
Function
60
40
20
0
97
97
97
97
97
7
7
99
99
19
19
19
19
19
/1
/1
1/
1/
1/
1/
1/
/1
/1
1/
2/
4/
6/
8/
10
12

76. The Cure - Care Model:
The Old System
D
Palliative/
Life E
Hospice
Prolonging A
Care
Care
T
H
www.capc.org Disease Progression

77. New Model
Center to Advance Palliative Care
Palliative Care
Modern
Hospice
Medicine

78. Palliative Care’s Place in the Course of Illness
Center to Advance Palliative Care
Life Prolonging Therapy
Death
Diagnosis of
serious
illness
Medicare Hospice
Palliative Care Benefit
www.capc.org

79. Parkinson’s Disease Model of Care
100%---
Treatment of PD (Prolongation of Life)
Schwab & England ADL Score
Bereavement Care for Family
Advanced P.D.
Moderate P.D.
Early P.D.
Hospice
Palliative Care (Relief of Suffering)
0%--- | | | | | | |
1.0 1.5 2.0 2.5 3.0 4.0 5.0
Diagnosis of Hoehn & Yahr Score Death
Parkinson’s Disease
Bunting-Perry, L. (2006). Journal of Neuroscience Nursing, 38(2), 105-112.

80. Unified Parkinson Rating Scale V:
Hoehn & Yahr Score
Stage 0 = No sign of disease
Stage 1 = Unilateral Disease
Stage 1.5 = Unilateral Plus axial involvement
Stage 2 = Bilateral Disease, w/o impairment of
balance
Stage 2.5 = Mild Bilateral disease, with recovery
on pull test
Stage 3 = Mild to moderate bilateral disease
Stage 4 = Severe disease
Stage 5 = Wheelchair bound or bedridden

81. Unified Parkinson Rating Scale IV:
Schwab and England ADL Scale
Measure of ADL’s
Scored from:
100% = Completely independent
to
0% = Reflecting vegetative functions

82. Parkinson’s Disease Model of Care
100%---
Treatment of PD (Prolongation of Life)
Schwab & England ADL Score
Bereavement Care for Family
Advanced P.D.
Moderate P.D.
Early P.D.
Hospice
Palliative Care (Relief of Suffering)
0%--- | | | | | | |
1.0 1.5 2.0 2.5 3.0 4.0 5.0
Diagnosis of Hoehn & Yahr Score Death
Parkinson’s Disease
Bunting-Perry, L. (2006). Journal of Neuroscience Nursing, 38(2), 105-112.

83. Why Palliative Care?
Questions
• What do persons with Parkinson‟s disease
say they want from our healthcare system?
• What is the impact of Parkinson‟s disease
on families?
Answer
• Palliative care promotes concordance with
patient and family wishes

84. What is Palliative Care?
“Palliative care is interdisciplinary care
focused on the relief of suffering and
achievement of the best quality of life for
patients and their family caregivers”
(Morrison and Meier, 2003)

85. WHO Definition of
Palliative Care
“An approach which improves the quality of
life of the patient and their family‟s facing
life-threatening illness, through the
prevention, assessment, and treatment of
pain and other physical, psychosocial and
spiritual problems”
(World Health Organization 2002)

86. Palliative Care is
Family Care
Who is the family?
“Family is anyone who shows
up when illness strikes and
stays on to help”
Carole Levine, 2003

87. Goal of Palliative Care
• Provides relief from pain and other distressing
symptoms
• Affirms life and regards dying as a normal
process
• Neither hastens or postpone death
• Integrates psychological and spiritual aspects of
patient care
• Offers support to families
• Enhances Quality of Life
WHO 2003

88. Conclusion
• The Parkinson‟s Disease Model of Care
• Presented the Parkinson‟s Disease Model
of Care
• Reviewed U.S. aging demographics
• Defined palliative care as a philosophy of
care