JMIR Publications

ABSTRACT

Background:

Social media data provide a valuable opportunity to explore the effects that Alzheimer’s disease (AD) has on care partners, including the aspects of providing care that have the greatest impacts on their lives and well-being and their priorities for their loved ones’ treatment.

Objective:

The objective of this social media review was to gain insight into the impact of caring for someone with AD, with a particular focus on impacts to daily activities, psychological and emotional well-being, health-related quality of life (HRQOL), work and finances, social functioning, and relationships.

Methods:

We reviewed social media posts to gain insights into the impact of AD on care partners. Web-based searches identified social data from 4 sources: YouTube, Alzheimer’s Association, Alzheimer Society of Canada, and Dementia UK. English-language posts uploaded between May 2011-May 2021 that discussed the impact of AD on care partners were included and analyzed thematically.

Results:

Of 279 posts identified, 55 posts, shared by 70 contributors (4 people living with AD and 66 care partners/family members), met the review criteria. The top 3 reported/observed impacts of AD discussed by contributors were psychological and emotional well-being (n=53, 75.7%), social life and relationships (n=37, 52.9%), and care partner overall health-related-quality of life (n=27, 38.6%). An important theme that emerged was the emotional distress and sadness (n=24; 34.3%) associated with the care partners’ experience of “living bereavement” or “anticipatory grief.” Care partner emotional distress was also exacerbated by loved ones’ AD-related symptoms (eg, altered behavior; memory loss). Caregiving had long-term consequences for care partners, including diminished personal well-being, family and personal sacrifices, loss of employment, and unanticipated financial burden.

Conclusions:

Insights from social media emphasized the psychological, emotional, professional, and financial impacts on individuals providing informal care for a person with AD and the need for improved care partner support. A comprehensive understanding of care partners’ experiences is needed to capture the true impact of AD and the potential value of treatment strategies that may enable care partners to balance care responsibilities with their well-being and professional responsibilities.