Paratonia, a condition that causes involuntary muscle stiffness in people with advanced dementia, can make everyday care tasks such as bathing, dressing, repositioning, and transfers more difficult while increasing caregiver burden. A new survey of 274 Canadian caregivers found that the condition has a significant impact on families, with 65.3% of respondents reporting that paratonia had a moderate to extreme effect on their physical, emotional, and mental well-being.
The study explored caregivers' willingness to access a potential treatment using botulinum toxin A (BoNT-A), which has shown promise in reducing stiffness and easing care challenges. Encouragingly, 84.6% of caregivers said they would be likely to attend a quarterly outpatient clinic if the treatment proved effective. Caregivers identified cost, transportation, and the physical challenges of bringing a loved one to appointments as key barriers, but many indicated they would be willing to overcome these challenges if meaningful benefits were achieved.
The findings suggest that community-based treatment models for paratonia may be feasible when practical supports are in place. Flexible appointment scheduling, shorter clinic wait times, and financial assistance were identified as factors that could help improve access and participation. The researchers conclude that addressing these operational barriers could play an important role in improving care for people living with advanced dementia and their caregivers.
Learn more about this research and its implications for dementia care.
