"Please Advise": Understanding the Needs of Informal Caregivers of People with Alzheimer's Disease and Related Dementia from Online Communities Through a Structured Topic Modeling Approach.

The informal or family caregivers of the Alzheimer's disease or related dementia (ADRD) patients, also known as the "invisible second patients", are often reported experiencing emotional and behavioral hardships. In recent years, the rapid development of online communities provides these caregivers a new opportunity for seeking information and emotional support. Comparing with offline social support services which have been constrained during the COVID-19 pandemic, online support allows caregivers to reach many peers in a convenient manner. This research aimed to examine the issues faced by ADRD caregivers through performing a structural topic modeling on posts from two online communities. Results revealed that the top concerns of the caregivers include getting along with Alzheimer's patients, family issues, patients' internal medical issues, stages of the disease, care facilities, etc. The results may have a further implication to the future implementation of psychological and social intervention of ADRD family care. ©2022 AMIA - All rights reserved.