Perspectives on Parkinson Disease Care in Dutch Nursing Homes

Introduction

Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers.

Methods

Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care.

Results

Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses.

Conclusions

PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders.