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The management of advanced Parkinson’s disease Dr J Paul Milnes Consultant Physician Airedale NHS Trust Outline of the lecture A few facts about Parkinson’s disease The problems encountered as the disease progresses Highlight important management points Epidemiology of Parkinson’s disease Approximately 1% of the population over 60 years has Parkinson’s disease The number of cases increase with age The ageing population is expected to dramatically increase the number of cases Parkinson’s disease may affect between 5 and 10% of the nursing home population Changes in the brain in Parkinson’s disease Loss of dopaminergic neurones from the substantia nigra is an essential feature of Parkinson’s disease The presence of Lewy bodies Changes in the brain in Parkinson’s disease There’s more to Parkinson’s disease than the substantia nigra involvement Braak has demonstrated the progression of abnormalities in the brain as Parkinson’s disease progresses Mov Disord 2006; 21: 2042 The diagnosis of Parkinson’s disease Don’t be afraid to question the diagnosis even at a relatively late stage Do all people with Parkinson’s disease have tremor? Up to 20% of cases never develop tremor at any stage of the illness Do all people with Parkinson’s disease have reduction and slowness of movement? Hypokinesia and bradykinesia Poverty and slowness of movement Must be present to make the diagnosis Reduced facial expression Slow shuffling gait Reduced arm swing Reduced swallowing Difficulty turning Small handwriting Difficulty with fine movements affecting the whole range of activities of daily living Usually asymmetrical UKPDS Brain Bank Criteria Step1 Diagnosis of a parkinsonian syndrome Bradykinesia (slowness of movement) and at least one of the following Muscular rigidity Rest tremor Postural instability unrelated to primary visual, vestibular or proprioceptive dysfunction Step2 Exclusion criteria for Parkinson’s Disease Step3 Supportive criteria for Parkinson’s Disease Differential diagnosis of Parkinson’s Disease Essential tremor Diffuse Lewy Body Disease Cerebrovascular disease Progressive supranuclear palsy Multiple system atrophy Trauma or toxin related Drug induced Others The diagnosis of Parkinson’s disease Don’t be afraid to question the diagnosis because it can be difficult Has a specialist been involved? Up to 25% error rate for non specialist hospital doctors “The diagnosis of Parkinson’s disease should be reviewed regularly and reconsidered if atypical features develop” NICE 2006 The management of Parkinson’s disease The management of the disease can be planned in four stages Diagnosis Maintenance Complex Palliative Nursing Older People 2004; 16:1 Audit of 73 cases in Cornwall Parkinsonism and related disorders 1999; 5(S53) Mean duration of the disease 14.6 years Average duration of the four stages Diagnosis 1.5 years Maintenance 6 years Complex 5 years Palliative 2.2 years The palliative phase of Parkinson’s disease Patients become increasingly disabled and dependant The palliative phase of Parkinson’s disease has been defined by Inability to tolerate adequate dopaminergic therapy Unsuitability for surgery The presence of advanced co-morbidity which is life threatening or disabling The palliative phase of Parkinson’s disease NICE Guidance 2006 Palliative care does not correlate with imminent death in Parkinson’s disease Shift from a therapeutic pharmacological approach to one which places a greater emphasis on quality of life issues The palliative phase of Parkinson’s disease NICE Guidance 2006 It should be possible to seek advice from specialist palliative care teams, not just at the end of life, but at any stage after diagnosis Recognising the needs of carers at an early stage will enable people to stay at home for as long as possible Many carers will have become “experts in Parkinson’s disease” themselves Palliative care and specialist care for PD patients in nursing homes Between 5 and 10% of nursing home residents have Parkinson’s disease Many may remain undiagnosed The support from specialist services is inadequate and inconsistent This population poses huge challenges to us all NICE Guidance 2006 The care of people with Parkinson’s disease is best undertaken in a multidisciplinary way throughout each stage of the disease Advanced Parkinson’s disease Motor problems Non-motor problems Motor problems in advanced disease include Failing mobility and falls Deterioration in the whole range of activities of daily living More frequent “off ” periods Speech impairment Swallowing difficulty Dyskinesias – abnormal movements related to drugs Less predictable response to medication Motor problems in advanced disease The delicate balance between the benefits and side effects of drug treatment The crucial role of other professionals and carers The importance of ensuring the correct timing of medication - especially in hospital and care homes The crucial role of other professionals and carers Levodopa (madopar & sinemet) Levodopa is the most important treatment of the later stages of Parkinson’s disease It is the most effective drug for treating motor problems The side effects are not as extreme as some of the other medications Diet can influence its effect in advanced Parkinson’s disease Protein intake interferes with levodopa therapy Levodopa and some amino acids, in protein rich foods, compete for the same carriers in the intestinal mucosa and blood brain barrier The data suggest that patients with advanced Parkinson’s disease should adjust daily protein intake and shift protein intake to the evening The use of low protein foods to reduce off periods after meal Mov Disord 2006; 21(10): 1682 Beware of an unexpected change in the speed of a patient’s deterioration Beware of an unexpected change in the speed of a patient’s deterioration Consider other contributory factors Reassess for intercurrent physical or mental health problems Common precipitants include Infection Depression Drug side effects Case study 80 year old man with advanced Parkinson’s disease Marked deterioration in his mobility over a 6 week period Recurrent falls and more drowsy No recent changes in drug treatment or signs of infection Specialist review and further investigation Urgent CT Brain Scan Neurosurgical treatment Non-motor features in advanced Parkinson’s disease Are they important? Yes Sydney Multicentre Study of Parkinson’s Disease Hely et al. Mov Dis 2005; 20(2): 190 Report on people with PD who survive 15 years from diagnosis One third of the 149 people recruited had survived Sydney Multicentre Study PD survivors at 15 years 81% Falls 84% cognitive decline 50% hallucinations and depression 50% choking 41% urinary incontinence 35% symptomatic postural hypotension Sydney Multicentre Study PD survivors at 15 years 40% were living in an aged care facility 95% experienced L-dopa induced dyskinesia and end of dose failure of medication “The most disabling long-term problems of Parkinson’s Disease relate to symptoms not improved by L-dopa” The non-motor problems Non-motor features in advanced Parkinson’s disease Neuropsychiatric Sleep disorders Autonomic symptoms Gastrointestinal symptoms Sensory symptoms Others Non-motor features in advanced Parkinson’s disease Neuropsychiatric Depression Anxiety Hallucinations Delusions Dementia Non-motor features in advanced Parkinson’s disease Sleep disorders include Restless legs REM sleep behaviour disorder Excessive daytime sleepiness Vivid dreams Insomnia Non-motor features in advanced Parkinson’s disease Autonomic symptoms Bladder disturbances Sweating Orthostatic hypotension Sexual dysfunction Non-motor features in advanced Parkinson’s disease Gastrointestinal symptoms Dribbling of saliva Difficulty with swallowing Acid reflux Nausea and vomiting Constipation Non-motor features in advanced Parkinson’s disease Other symptoms Pain Loss of smell Fatigue Double vision Screening for non-motor symptoms A questionnaire has been developed This can be downloaded from the Parkinson’s Disease Society website The NMS Quest Study Mov Disord 2006; 21(7): 916 International multidisciplinary group of experts Development of a non-motor symptom screening tool comprising of 30 items The number of symptoms correlated closely with advancing age and duration of disease Problems previously unknown to health professionals were frequently highlighted Management points for some common non-motor symptoms Depression Dementia Hallucinations Sleep problems Depression in Parkinson’s disease is common and easily overlooked Depression Affects up to 50% of patients with Parkinson’s Disease Low threshold for diagnosing depression in Parkinson’s disease The strongest predictor of PD quality of life in several surveys J Neurol Neurosurg Psychiatry 1999; 66: 431 J Neurol Neurosurg Psychiatry 2000; 69: 308 Depression Features of depression and Parkinson’s disease overlap The diagnosis can be overlooked If untreated can affect motor function Management Holistic - multi-disciplinary team input Liaison with mental health services Medication Medication for depression Factors to consider Ensure optimal treatment of the motor problems Side effects limit the value of the older antidepressant drugs The presence of anxiety Treatment of depression - NICE Guidance 2006 There is insufficient evidence from clinical trials of the efficacy or safety of any antidepressant therapy in Parkinson’s disease There is an urgent need for further research to establish safe and effective treatments for depression in Parkinson’s disease Hallucinations in Parkinson’s disease May begin as visual hallucinations which are non-frightening As the disease progresses the hallucinations may become more distressing and paranoid delusions may develop Hallucinations in Parkinson’s disease May be a direct effect of the disease Could be related to drug treatment Consider intercurrent illness Impaired vision and environment Consider depression Significant risk of dementia Dementia in Parkinson’s disease Dementia is the progressive loss of global cognitive function At least half the patients with Parkinson’s disease will ultimately develop dementia Typically PD dementia affects visuospatial abilities, learning, verbal fluency, working memory and mental flexibility Memory loss is less prominent than in other common dementias Management of PD dementia Non-drug strategies – education and practical support for patient and carers Withdrawal of medication – ultimately leaving levodopa Treat depression Use of atypical antipsychotic drugs Use of cholinesterase inhibitors Stepwise reduction in drug treatment Focus treatment on the most effective PD drugs with the least side effects Reduce from the top Anticholinergics Selegiline Amantadine Dopamine agonists (eg ropinirole/ pramipexole) COMT (eg entacapone) Apomorphine L-dopa Antipsychotic drugs Older drugs – “Typical antipsychotic” drugs should be avoided Atypical antipsychotic drugs may help Quetiapine is often used but little hard data Clozapine is of benefit but rarely used in the UK Caution with Olanzapine and Risperidone in people at risk of stroke Cholinesterase inhibitors The group of drugs originally introduced to treat Alzheimer’s disease NICE Guidance 2006 Used successfully in patients with PD dementia Further research is recommended to identify those patients who will benefit Rivastigmine is currently licensed for the treatment of PD dementia Sleep related problems of Parkinson’s disease Take an accurate history Sleep related problems of Parkinson’s disease Age Ageing 2006; 35: 220 Insomnia directly due to the effects of Parkinson’s disease on central sleep regulation centres in the brain Motor function related Urinary difficulties Neuropsychiatric problems Management of sleep disorders General measures Treatment of specific problems General measures to cope with insomnia A warm bath 2 hours before bedtime Hot milk or a light snack at bedtime Handrails or satin sheets to help turning Avoid stimulants such as tea and coffee at bedtime Review other tablets Care with hypnotic drugs but sometimes helpful Motor function related Restless legs Abnormal leg movements Difficulty turning in bed Medication changes may help Urinary problems at night include Nocturia – frequent micturition at night - is common Is it related to Parkinson’s disease or another problem? Exclude active infection and incomplete bladder emptying Incontinence related to poor mobility Neuropsychiatric causes of sleep disturbance Depression is common and treatable Panic attacks Treatment determined by time of occurrence Cognitive problems Distressing dreams and hallucinations Review drug treatment Consider quetiapine REM Sleep behaviour disorder REM Sleep Behaviour Disorder People enact their dreams Talking Shouting Falling out of bed Even attacking their partner Drugs can help Clonazepam Others Useful sources of information Parkinson’s Disease Society www.parkinsons.org.uk 2006 NICE Guidance www.nice.org.uk Summary Parkinson’s disease affects 1% of the population over 60 years old Specialist support at diagnosis and throughout the disease is essential There is inadequate support for PD patients in nursing homes The management becomes increasingly complex and needs input from the whole range of carers and clinical staff Think of other contributory causes if there is an unexpected deterioration in symptom control The importance of the non-motor symptoms in advanced Parkinson’s disease has only recently received significant attention