Dementia Care Research and Psychosocial Factors

Area of Science:

• Gerontology
• Health Informatics
• Sociology of Health & Illness

Background:

• Dementia caregiving involves significant challenges for family members navigating complex healthcare systems.
• Secure messaging portals are now the primary communication channel between patients, caregivers, and healthcare providers.
• Messages via these portals offer valuable insights into the realities of caregiving.

Purpose of the Study:

• To analyze secure patient portal messages to understand the lived experiences of dementia patients and their caregivers.
• To identify key themes related to caregiving and healthcare system navigation within these messages.

Main Methods:

• A cohort of adults aged 65+ with dementia was identified from the Adult Changes in Thought (ACT) Study.
• Secure messages sent 5 years before to 5 years after dementia onset were compiled.
• Natural Language Processing (NLP) and qualitative analysis were used to examine 1023 messages for themes related to lived experience.

Main Results:

• Key themes identified include healthcare system navigation, medication concerns, and transitions in care.
• The majority of messages (85%) were authored by family caregivers, primarily daughters, not patients.
• Messages contained detailed descriptions of daily life and emotions like gratitude, grief, and frustration, reflecting the longitudinal caregiving experience.

Conclusions:

• Secure patient portal messages provide a unique perspective on the social and institutional dynamics of dementia care.
• These real-time messages reveal the difficulties faced by patients and caregivers in managing dementia and the healthcare system.
• Analysis of these messages aids in understanding caregiving challenges and developing supportive strategies within fragmented healthcare systems.