Family care of Alzheimer victims

Abstract

The burden of caregiver stress has been well documented in the literature. While attention has been paid to caregiving spouses and adult children, few studies have examined the impact offamily caregiving on adolescents. With the rise in adult child caregivers simultaneously raising children of their own, increasingly greater numbers of young adults will be involved in caring for Alzheimer's type dementia (ATD) victims. This study examined the characteristics and experiences of these young adults. Specifically, 14 adolescents aged 14-18 were interviewed and asked a series of semi-structured questions regarding theirfeelings ofburden and satisfaction as they related to caregiving.Employing features of content analysis methodology, all interviews were audiorecorded and transcribed. The results merged intofive primary categories:

The impact of dementia family caregiving on adolescent well-being: A scoping review

“…In five of the articles (63%), the adolescents were involved in the caregiving of only grandparents. The remaining three articles included grandparents (Beach, 1994, 1997; Szinovacz, 2003), great-grandparents (Miron et al, 2019), parents (Beach, 1994, 1997; Szinovacz, 2003), and aunts/uncles (Beach, 1994, 1997). Across all articles, the mean age of persons with dementia ranged from 69 to 80 years and were mostly female.…”

“…Positive outcomes included satisfaction derived from helping to care for family members with dementia (Celdrán et al, 2011), recognizing importance of family (Celdrán et al, 2009), changes in personal values (Celdrán et al, 2009, 2012), increased knowledge about dementia (Celdrán et al, 2009), and greater empathy for older adults (Beach, 1994, 1997). Negative outcomes included changes in family dynamics (Beach, 1994; Celdrán et al, 2012; Szinovacz, 2003), feelings of jealousy (Beach, 1994; Szinovacz, 2003), fears of future dementia diagnosis (Celdrán et al, 2011), and disruptions in family routines (Celdrán et al, 2012; Szinovacz, 2003). Furthermore, Celdrán et al (2009) noted adolescents’ reflections about caring for grandparents with dementia led to both optimistic and pessimistic responses about aging and attitudes toward life.…”

“…Specific reasons cited for this difference were changes in family routines and daily-care tasks (Celdrán et al, 2012). In Beach’s (1994) study, participants noted the difficulties experienced with behavior management in a person with dementia, specifically adolescents internalizing and blaming themselves for their family member’s anger, experiencing difficulty predicting family member’s reactions, feeling embarrassed about family member’s inappropriate behaviors in public settings, and being confronted with violent behavior from their family member with dementia.…”

“…Three articles discussed relationships with others, including siblings, peers, and teachers. While some articles reported on increased sibling bonding (Beach, 1994, 1997), Szinovacz (2003) reported on the negative impact on sibling relationships, including fewer joint activities and needing to monitor sibling behavior in front of the family member with dementia. Adolescents also discussed how caregiving circumstances altered their peer relationships (Beach, 1994) and emphasized the importance of having empathetic peers and preparing friends prior to interactions with their family members with dementia (Beach, 1997).…”

“…Following full text review, an additional nine articles were excluded for not being available in English (n = 1), not being focused specifically on adolescents (n = 6), and not being exclusive to dementia caregiving (n = 2). During full text review, it was noted that two researcher groups (Celdrán et al, 2009, 2011; Beach, 1994, 1997; Celdrán et al, 2012) reported on different aspects of their study findings. All of the articles were included as each article focused on different aspects of the studies and were deemed by our research team to include important findings relevant to the objectives of the scoping review.

Figure 1.PRISMA Flow Diagram of Record Search and Study Selection.

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