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 N ational Hospice and Palliative Care Organization’s Palliative Care Resource Series

 N ational Hospice and Palliative Care Organization’s Palliative Care Resource Series. A Palliative Care Approach to Parkinson’s and Other Neurodegenerative Diseases Mara Lugassy, MD Hospice Medical Director, MJHS Hospice and Palliative Care Assistant Professor of Family and Social Medicine

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 N ational Hospice and Palliative Care Organization’s Palliative Care Resource Series

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  1. National Hospice and Palliative Care Organization’sPalliative Care Resource Series A Palliative Care Approach to Parkinson’s and Other Neurodegenerative Diseases Mara Lugassy, MD Hospice Medical Director, MJHS Hospice and Palliative Care Assistant Professor of Family and Social Medicine Albert Einstein College of Medicine

  2. OBJECTIVES • Describe Parkinson’s disease and other neurodegenerative diseases with Parkinsonian features • Recognize the changing needs of patients and caregivers throughout the course of disease and related benefits of palliative care • Discuss key pharmacologic and nonpharmacologic therapies for both motor and nonmotor symptoms

  3. Parkinsonian Syndromes • Neurodegenerative • Progressive, increased dependency, and symptom burden • Motor symptoms • Affects speech, gait, swallowing • Nonmotor motor symptoms • Autonomic, psychiatric, cognitive, pain

  4. Parkinsonism • Bradykinesia • Slowed initiation of movements • Decreased speed and amplitude • Rigidity • Stiffness, tightness, pain, contractures • Tremor • Occurs at rest, worsened with distraction • Postural Instability • Major cause of falls and injury • Poorly responsive to pharmacotherapy

  5. Parkinson’s Disease • Most common form of Parkinsonism • Neuronal cell loss involving dopaminergic cells of the substantia nigra pars compacta • Most common neurodegenerative disease second to Alzheimer’s disease • A clinical diagnosis • May be difficult to distinguish from other Parkinsonian disorders in early stages HuseDM, Schulman K, Orsini L et al. Burden of illness in Parkinson’s disease. MovDisord. 2005;20(11):1449-54.

  6. Parkinson – Plus Syndromes • Multiple System Atrophy • Bilateral onset, early and severe autonomic dysfunction, poor response to levodopa, time to death after diagnosis is 6-10 years. • Progressive Supranuclear Palsy • Progressive opthalmoplegia, early postural instability and executive dysfunction, behavioral abnormalities and poor response to levodopa. Average time of onset to death is 8 years. • Dementia with Lewy Bodies • Parkinsonism along with cognitive impairment, visual hallucinations and fluctuations in cognition and level of alertness, motor symptoms can respond to levodopa. Average time of onset until death is 8 years. O’Sullivan SS, Massey LA, Williams DR et al. Clinical outcomes of progressive supranuclear palsy and multiple system atrophy. Brain 2008;131(pt5):1362-1372. Tada M, Onodera O, Tada M et al. Early development of autonomic dysfunction may predict poor prognosis in patients with multiple system atrophy. Arch Neurol 2007;64:256. Williams MM, Xiong C, Morris JC, Galvin JE. Survival and mortality differences between dementia with Lewy bodies vs. Alzheimer disease. Neurology 2006 Dec 12;67(11) 1935-41.

  7. Role of Palliative Care • Currently, no treatments available to cure or delay progression of disease • All interventions geared toward controlling symptoms • Wide array of symptoms and impact on quality of life require interdisciplinary approach

  8. Palliative Care: Early Stages • Education about disease and treatment, discussions of prognosis • Identification of support resources for patient and family • Appointment of health care agent • Initiation of goals of care discussions - artificial nutrition and hydration - mechanical ventilation

  9. Palliative Care: Middle Stages • Continued goals of care discussion • Focus on greater symptom burden (pain, cognitive, autonomic dysfunction, psychiatric) • Evaluate for caregiver stress • Increasing role for interdisciplinary services

  10. Palliative Care: Advanced Stages • Management of dementia, debility, dysphagia, hallucinations • Decreasing responsiveness to Parkinson’s medications • Referral to community and support services • Organizations of home services • Transitions of care • Facility-based care • Hospice referral

  11. Hospice Care • Underutilized • Not thought of as “terminal” • No specific hospice admission criteria • Consider criteria for dementia • Consider markers of advanced disease • Frequent infections or hospitalizations • Weight loss • Declining functional status • Skin breakdown • Malnutrition

  12. Pharmacotherapy: A Delicate Balance • Significant impact on function and quality of life • Medication side effects can have significant negative effects • Treatments for motor symptoms can worsen nonmotor symptoms • Complex interactions with other medications and medical conditions • Need for ongoing reassessment of medication benefits

  13. Pharmacotherapy in Parkinson’s Disease • Levodopa • Mainstay of Parkinson’s pharmacotherapy • Benefit to symptoms of tremor, rigidity and bradykinesia in earlier stages of disease • Additional categories of medication • Dopamine antagonists • Monoamine Oxidase- B inhibitors • Catechol-O-Methyltransferase Inhibitors • Anticholinergic medications • Pharmacotherapy complicated • Motor fluctuations – “on periods” in which there is a positive response to medications • “Off periods” – reemergence of motor symptoms and dyskinesias

  14. Pharmacotherapy with Disease Progression • Increasing motor fluctuation • More time in off periods • Decreased responsiveness to same dose of medication • Initially, may improve with adjustments in dose, frequency, addition of COMT inhibitor • Later stages: dose increases can worsen: • Dyskinesias, hallucinations, urinary dysfunction, nausea • Side effects may necessitate dose decreases, worsening motor symptoms

  15. Medications to Avoid • Dopamine receptor blockers (worsen Parkinsonism) • Antipsychotics • Typical: haloperidol, chlorpromazine, fluphenazine, loxapine • Atypical: risperidone, olanzapine, aripiprazole • Preferred: quetiapine (first line) or clozapine • Antiemetics: metoclopramide, prochlorperazine, promethazine • Benzodiazepines: Use with caution. Can worsen balance, fall risk, and confusion

  16. Nonpharmacologic Interventions • Significant role in managing motor symptoms • Earlier disease: Preservation of function • Later stages: Compensation for increasing disability • Increasing importance as pharmacology becomes less effective • Important for care team to provide ongoing education, support regarding these interventions

  17. Exercise • Significant benefits throughout illness • Adapt to stage • Animal models indicate potential neuroprotective effects in Parkinson’s disease Ahlskog, JE. Does vigorous exercise have a neuroprotective effect in Parkinson’s disease? Neurology 2011 Jul 19 77(3) 288-294. Uhrbrand A, Stenager E, Pedersen MS, Dalgas U. Parkinson’s disease and intensive exercise therapy – a systematic review and meta-analysis of randomized controlled trials. J NeurolSci 2015 Jun 15;353(1-2)9-19.

  18. Exercise • Aerobic activity, muscle strengthening/stretching • Improves muscle strength, endurance, balance, walking performance, quality of life, mood • Tai Chi, yoga, dance • Improves postural instability (typically less responsive to medications) • Reduces falls Morberg, BM, Jensen J, Bode M, Wermuth L. The impact of high intensity physical training on motor and nonmotor symptoms in patients with Parkinson’s disease (PIP): A preliminary study. Neurorehabilitation 2014 Jan1; 35 (2) 291-8. Suec R, Filip P, Sheardova K, Bares M. Psychological benefits of nonpharmacological methods aimed for improving balance in Parkinson’s disease: A systematic review. Behav Neurol. 2015. Jul 7.

  19. Compensatory Strategies: Advanced Disease • Switch from automatic movements to conscious control • Motor function improved with increased effort or attention • Cueing: external stimuli used to enhance motor performance • Visual: line on floor, laser pointer, cue cards • Auditory: metronome, music, verbal commands • Break movements down into discrete subunits • Avoid multitasking and distractions

  20. Compensatory Strategies: Advanced Disease • Modification of home environment • Avoid low lying obstacles and narrow spaces • Removal of area rugs • Elevated toilet seats, chairs with firm backs and armrests • Satin sheets or material across middle of bed to facilitate turning • Mobility devices • Adaptive equipment

  21. Freezing • Temporary inability to move • Can result in falls • Exacerbated by “off periods”, narrow spaces, doorways, turning • Strategies: • March in place • Shift body weight from one leg to another • Verbal cues • Step over imaginary or real line

  22. Dysphagia • Progresses throughout disease course • Worse with thin liquids • Can result in aspiration events • An important topic of goals of care discussions

  23. Dysphagia • Schedule meals during medication “on” times • Focused attention on chewing and swallowing • Thickener with liquids • Avoid tipping head backwards • Chin tuck technique

  24. Speech • Hypophonia, monotone, hoarseness, breathiness, dysarthria • Avoidance of multitasking while speaking • Voice exercise training programs: focus on volume and enunciation • Voice amplifier devices Fox C, Ebersbach G, Ramig L, Sapir S. LSVT LOUD and LSVT BIG: Behavioral treatment programs for speech and body movement in Parkinson’s disease. Parkinsons Dis. 2012, Mar 15.

  25. Nonmotor Symptoms • Impact quality of life • Contribute to hospitalization and institutionalization • Underreported • Worsen throughout disease • May be more distressing than motor symptoms, especially in later stages • Can be exacerbated by Parkinson’s pharmacotherapy Chaudhuri KR, Prieto-Juvcynska C, Naidu Y, et al. The nondeclaration of nonmotor symptoms of Parkinson’s disease to health care professionals: An international survey using the NMSQuest. MovDisord 2010 Apr 30;25:704-9. Todorova, A, Jenner P, Chaudhuri K. Non-motor Parkinson’s: Integral to managing Parkinson’s yet often neglected. Pract Neurol. 2014 Oct;14(5)310-22.

  26. Autonomic Dysfunction: Constipation • Slowed colonic transit time, immobility, decreased fluid intake • Worsened by medications (opioids, tricyclic antidepressants, antipsychotics, iron supplements) • Maximize fiber and fluid intake • Maximize physical activity, position changes • Establish fixed time for bowel movements • Step wise bowel regimen

  27. Autonomic Dysfunction: Orthostatic Hypotension • Worse in later stage Parkinson’s disease • Early symptom in multiple system atrophy • Contributes to falls, injuries • Lightheadedness, fatigue, cognitive blunting • Posterior head and neck pain “coat hanger pain” • Can be exacerbated by medications

  28. Orthostatic Hypotension • Avoid lying flat • Avoid hot baths or showers (vasodilator) • Compression stockings • Increase fluid and salt intake • Avoid polypharmacy • Midodrine (vasopressor) • Fludrocortisone (mineralcorticoid) increased plasma volume Low, P, Tomalia V. Orthostatic hypotension: Mechanisms, causes, management. J Clin Neurol. 2015 Jul;11(3) 220-6. Figueroa JJ, Basford JR, Low PA. Preventing and treating orthostatic hypotension: As easy as A, B,C. ClevClin J Med. 2010 May;77(5)289-306.

  29. Urinary Symptoms • Urgency and frequency, incomplete bladder emptying • Incontinence • Caution with anticholinergics (oxybutynin, tolterodine) in cognitive impairment or dementia • Caution with alpha blockers (terazosin, doxazosin) as may worsen orthostatic hypotension • Avoid caffeine • Limit excessive fluid before bedtime • Wear easy to remove clothing Thaisetthawatkul P, Boeve B, Benarroch E, et al.. Autonomic dysfunction in dementia with Lewy Bodies. Neurology. 2004;62(10)1804.

  30. Pain • Up to 80% of patients with Parkinson’s disease • Evidence of abnormal nociceptive input processing and lowering of pain threshold • Correlated with depression and lower quality of life Valkovic P, Minar M, Singliarova H, et al. Pain in Parkinson’s Disease: A cross-sectional study of its prevalence, types, and relationship to depression and quality of life. PLoS One 2015; 10(8)e0136541.

  31. REM Behavior Sleep Disorder • Can precede Parkinsonism by years • Loss of atonia during REM sleep leads to acting out of dreams • Risk for self-injury (falls) or harm to partner • Implement safety measures • Melatonin; starting dose 3 mg po at bedtime • Clonazepam 0.25 mg po at bedtime Kunz D, Mahlberg R. A two-part, double-blind placebo controlled trial of exogenous melatonin in REM sleep behavior disorder. J Sleep Res. 2010 Dec;19(4):591-6.

  32. Dementia • Early executive dysfunction • Less prominent language dysfunction, memory impairment than in Alzheimer's • Parkinson’s disease dementia: dementia begins at least a year after motor symptoms begin, usually late stage • Dementia with Lewy Bodies: Dementia begins before or at same time as motor symptoms • Some benefit from cholinesterase inhibitors (donepezil, rivastigmine) and memantine

  33. Hallucinations • Mainly visual (animals and people) • Can be exacerbated by Parkinson’s medications • Education to patient and family • Reduction in medications according to hallucinogenic potential (anticholinergics >amantadine >dopamine agonists >MAO-B inhibitors >Levodopa) • Antipsychotics • Quetiapine • Clozapine: requires enrollment in monitoring program, monitoring of white blood count Williams DR, Litvan I. Parkinsonian syndromes. 2013 Oct;19(5 Movement Disorders):1189-212.

  34. Depression • Most common psychiatric symptom in Parkinson’s disease • Frequently comorbid with anxiety • Significant negative impact on quality of life • Worse during “off periods” • Improves with maximizing dopaminergic treatment • Pharmacotherapy: important to weigh risks/benefits of individual medications • Interdisciplinary approach AarslandD, Larsen JP, Lim NG, et al. Range of psychiatric disturbances in patients with Parkinson's disease. J NeurolNeurosurg Psychiatry. 1999;67(4)492. Lokk, J Delbara, A. Clinical aspects of palliative care in advanced Parkinson’s disease. BMC Palliative Care. 2012;11(20)1-8.

  35. Conclusions • Parkinsonian disorders involve a wide range of motor and nonmotor symptoms • Both pharmacologic and nonpharmacologic therapies have significant benefit • Patients, families, and caregivers may benefit from palliative care throughout the course of disease

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