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End of Life Care for a Person WithParkinson Disease Recent Research and Clinical Implications Parkinson Disease ~1.5 million in USA currently diagnosed 60,000 new cases diagnosed/year Progressive loss of neuronal cells in the substantia nigra progressive motor decline and nonmotor complications Cause unknown, probably multifactorial. No current cure Average length of living with PD 14.6 (9.8) years Motor Complications of Late Stage PD (Hoehn-Yahr Stage 5) Freezing Rigidity Dyskinesia Dysarthria Dysphagia Respiratory problems Less responsive to dopaminergic medicines Nonmotor Complications of Late Stage PD (Hoehn-Yahr Stage 5) Cognitive slowing Dementia – 40% develop in late stages Psychosis/hallucinations Depression, anxiety Dysregulation of blood pressure Dysregulation of bowel/bladder - constipation Sleep disturbance Four StagesMacMahon et al. 1999 Diagnosis 1.6 (1.5) Maintenance 5.9 (4.8) Complex 4.9 (4.4) Palliative 2.2 (2.2) intolerance of dopaminergic therapy unsuitable for surgery advanced co-morbidity Palliative Care Care shifts from life-prolonging to comfort measures Relief/control of symptoms: analgesia, sedation, maintenance of dignity Avoiding iatrogenic effects of treatment Prevention of falls, pressure sores Is PD a Cause of Death? Severity of Parkinsonism Dementia Fractures Thromboses Infections (lung, urinary tract) Last Month of Life CAREGIVERS (N = 52): Caucasian (92%) Female (77%) Spouses (64%) Mean age 68 years Mean length of bereavement 20 months Had known the decedent, on average, for 49 years. Last Month of Life LOVED ONES WITH PD: Caucasian (98%) Males (79%) Mean age of 78 years at time of death. Died primarily of PD with complications including pneumonia, falls with injuries, urinary tract infections, or dementia. Six had substantial cardiopulmonary disease, but the caregiver reported PD caused the most disability. Difficulty Eating Difficulty eating/dysphagia Increased choking hazard Benefits vs.
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