Don't give up when communication is difficult: Online well-being advice for caregivers of people with Alzheimer's and dementia

• Published in: Home health care services quarterly Vol. 40; no. 2; pp. 136 - 147
• Main Authors: Jones, Olivia E., Parks, Elizabeth S.
• Format: Journal Article
• Language: English
• Published: England Taylor & Francis 03-04-2021; Taylor & Francis Ltd
• Subjects: Activities of daily living; Advice; Alzheimer's disease; Caregivers; Caregiving; Communication; Dementia; Health administration; Home health care; Internet; Online; Social Support; Well being; Advice; Caregiving; Online; Social Support; Communication
• ISSN: 0162-1424; 1545-0856
• DOI: 10.1080/01621424.2021.1907266

Sixteen million people in the United States are unpaid caregivers to people with Alzheimer's or dementia. Although caregiver investment is associated with personal and relational benefits, there are also emotional, mental, relational, and physical costs. This study explores online well-being advice for nonprofessional caregivers of people with Alzheimer's and dementia, resulting in 332 online resources that offer informational support for nonprofessional caregivers. Although competent communication directly impacts the well-being of caregiving relationships, only 39 of these texts offered advice related to communication strategies. Thematic analysis of these 39 sources resulted in 1,024 discrete pieces of caregiver advice related to three overarching themes: Daily Routine, Care Recipient Well-Being, and Caregiver Self-Care. We examine the Caregiver Self-Care theme to understand informational support available to caregivers. These self-care advice themes reveal a need for intentional focus on the home health quality of nonprofessional caregivers about ways that communication impacts their everyday lives.