Extended Family Caregivers for Persons Living With Dementia

Abstract

Despite changes in the structure of contemporary families, little is known about extended family members—siblings, grandchildren, nieces/nephews, stepkin—who are primary caregivers for a relative living with dementia. Information about these caregivers is needed to help ensure their needs are understood by providers in health care and social service settings. The focus of this research was on the care situations of extended family caregivers and the impact of caregiving on their health and well-being. In Study 1, data from the National Study of Caregiving were used to describe the experiences of 107 extended family caregivers. In Study 2, case study techniques elicited additional information about the experiences of 10 extended family caregivers. Collectively, these caregivers provide care with little or no formal support and occasional help from a small informal network. Caregiving affected their physical and emotional health, depending on the strength of the relationship between the caregiver and the person living with dementia and the type of care provided. Findings contribute new knowledge about extended family caregivers and highlight the important role extended family dementia caregivers play and the challenges they face.

A Care Paradox: The Relationship Between Older Adults’ Caregiving Arrangements and Institutionalization and Mortality

“…These changes have been projected to have the potential to impact older adult well-being through a shortage of caregivers (Schulz & Eden, 2016). In addition, less attention has been paid to unconventional caregiver arrangements outside of spouse and adult children (for exceptions, see Roberto & Savla, 2022; Taylor et al, 2013). Therefore, we investigated how caregiving arrangements may influence an older adult’s institutionalization and mortality, focusing on primary caregivers and shared caregiving arrangements.…”

“…Interestingly, when compared with conventional primary caregivers, respondents with extended family caregivers had lower odds of death. Less is known about extended family caregivers in general, but work in this area is emerging because of the importance of extended and voluntary kin in an ever-shifting family demographic environment (Hughes & Kentlyn, 2011; Roberto & Jarrott, 2008; Roberto & Savla, 2022).…”

“…This may be changing as certain family members and intergenerational relationships are extended as the life course is elongated (i.e. grandchildren, siblings) (Allen et al, 2011; Roberto & Jarrott, 2008; Roberto & Savla, 2022), and studies move beyond parent-child dyads (Bianchi et al, 2007). However, some work does show that care networks with more non-immediate family members are associated with an increase in the risk of negative outcomes, including emergency room use (Leggett et al, 2022).…”

Understanding and Serving All Families: Introduction to the Special Issue on Supporting Structurally Diverse Families

“…Finally, two articles attend to supporting the health and well-being of later life adults and their caregivers. Roberto and Savla (2022) employed the 2011 National Health and Aging Trends Study and the National Study of Caregiving in combination with case studies conducted with caregivers of elderly individuals with Alzheimer’s disease in Appalachia to examine the roles of adult caregivers frequently relegated to the “other” category in larger data sets (e.g., siblings, grandchildren, nieces/nephews, stepkin). Their findings demonstrate further evidence of the importance of recognizing caregiving done beyond the dyadic or spousal level, and by larger networks of family care providers.…”

Relationships among self-esteem, ego-resilience, and caregiver burden among families of children with hematologic and oncologic disease: A cross-sectional study

“…Caregiver burden is defined as “the extent to which caregivers perceive their emotional health, physical health, social life, and financial status as having been negatively impacted as a result of caring for their relative” (p. 261) [ 1 ]. Previous studies on caregiver burden have mostly focused on the relationship between spouses [ 2 ] and adult children of adult patients, such as patents with dementia [ 3 ] and older adults with advanced cancer [ 4 ]. However, depending on the type of caregiving dyad, the dynamics and functions of caregiving will vary [ 2 ].…”