Caregiver Burnout in Parkinson's: Time to Address

Parkinson’s disease with its associated motor and nonmotor complications often result in progressive loss of ability to perform day to day activities in advanced stages. This results in physical dependence and deterioration in quality of life and often requires caregiver assistance.

The main motor symptoms resulting in impairment in the quality of life includes dyskinesia, motor fluctuations, axial impairment, freezing of gait and falls. Nonmotor symptoms are often more distressing to the caregivers which include depression, dementia, psychosis, hallucinations, delusions, cognitive impairment, apathy, and sleep disorders. Owing to the progressive disease course, there is an increasing utilization of economic and social resources. The caregiver, often the spouse is unable to work due to the physical dependency of the patient, which adds to the caregiver stress.

Caregiver burden increases as the patient’s disease progresses, with motor and speech difficulties and cognitive deterioration which often lead to decline in the quality of life of the caregiver which many a times remains unaddressed.

Further, modifications in the treatment and its impact on the quality of life of the patient are often better perceived by the caregiver rather than the patient, due to the gradual cognitive decline of the patient. So any intervention in improving the quality of life of the patient will in turn improve the quality of life of caregivers also.

There are very few studies which have examined quality of life of caregivers in PD and factors influencing them. The Paper “Neuropsychiatric symptoms and caregiver burden in Parkinson’sdisease” attempt to address the caregiver burden in PD patients due to psychiatric disability in a fairly large group of patients.[1] They found that apathy, agitation, anxiety, irritability, and sleep disorders were the major contributors to the caregiver burden. This was in line with the previously reported results. Delusions, hallucinations, agitation, aggression, depression, anxiety, elation, apathy, disinhibition, irritability, aberrant motor behaviour, sleep and night-time behavior disorders, appetite and eating disorders were also found to be affecting the quality of life of care givers. The factors contributing significantly (statistically) to the quality of life were apathy, irritability and sleep disorders.

The treating physicians should take special attention in caregiver burden by specifically asking for and, addressing these symptoms in a positive way. Apart from drug therapy, involvement of social worker, psychiatrist, psychologist in the care of Parkinson’s patient can play a major role in preventing caregiver burn out. Studies assessing the change in quality of life of care givers on specific interventions in PD patients are also warranted.