Services for Parkinson’s patients and their caregivers make a big difference in their comfort and ability to remain at home, said Phyllis Jensen of the University of Alberta.
In Ontario, patients with the neurological disorder are eligible for 20 hours per week of provincially funded home care while Alberta offers five hours.
The Parkinson Society of Alberta and researchers at the universities of Alberta and Calgary and Alberta Health Services hope to interview some of the 9,000 estimated Albertans with the disease to determine whether changes in health care and support services have affected patients’ and caregivers’ quality of life.
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The last survey, conducted in 2005, found patients spent $1,000 every month for medications. Costs have increased and many health-care services have been affected, which means people with the disease are paying more out of pocket.
For those who can’t afford to pay and with respite or relief services less available, family caregivers assume greater responsibilities and show high rates of burnout, said Jensen.
Gaps in health-care service and support mean more emergency room visits for people with this condition. Without services like physiotherapy, movement and speech therapy, they could end up in institutionalized care earlier.
“The delisting and decentralizing of health-care services has really affected them greatly,” she said.
WHAT IS PARKINSON’S?
Parkinson’s disease is a motor system disorder caused by the loss of dopamine-producing brain cells. Primary symptoms include:
•trembling in hands, arms, legs, jaw and face
•stiffness of the limbs and trunk
•slowness of movement
•impaired balance and co-ordination.
For survey information, visit www.parkinsonalberta.ca, movement disorder clinics, neurologist offices or contact the University of Alberta at 780-492-9969, the Parkinson Alberta Society at 800-561-1911 or e-mail phyllis.jensen@ualberta.ca.
