Objective: We aimed to characterize patterns of use of complementary and alternative (CAM) therapies on patients with intractable neurodegenerative diseases and their caregivers.
Methods: We sent questionnaires to 1,406 patients with subacute myelo-optico-neuropathy (SMON), amyotorophic lateral sclerosis (ALS), Parkinson’s disease (PD), Parkinson related disease, or spino-cerebellar degeneration (SCD). We also send questionnaires to the 1,406 caregivers of these patients. The participants were asked to answer questions about current use of Annma/Massage/Shiatu, acupuncture, Zyudoseifuku, Chinese medicine or Supplementary food. Other questions including reasons for the use, subjective effectiveness of the CAM and subjective wellness were also asked.
Results: 33.7% of patients and 30% of caregivers responded to the questionnaires. Anna/Massage/Shiatu and Chinese medicine were most frequently used by patients (60.8%), and 51.3% of them answered that these therapies were effective. The caregiver’s response showed supplementary food and Anna/Massage/Shiatu were most frequently used (42.5%), and 35.9% of them answered that these were effective.
Conclusion: The present study showed that use of CAM was 20.5% in patients with intractable neurodegenerative diseases and 9.8% among caregivers when calculated using collection rates. Annma/Massage/Shiatu was most frequently used and was regarded effective on subjective wellness both in the patients and caregivers.