69P
The Experience of Well-Parents in Young-Onset Alzheimer's Disease Families: Evolving Parental Roles
Younger-onset Alzheimer’s disease or other dementias (YOD) is defined as affecting those under age 65. Between 200,000 and 500,000 people in the US and as many as 6-9% of all people with dementia and related disorders worldwide are afflicted with these conditions. YOD tends to be fast-progressing and aggressive, affecting people likely still actively engaged in the labor force and in raising children, and therefore impacting them and their families in unique ways.
There has been increasing research on the experience and needs of persons with YOD and their caregivers, who are mainly spouses. Yet one area of YOD caregivers’ experience which has been little-explored is their evolving parental role. As the affected parent becomes less functional, the well-parent must take on more and more parental responsibilities. However, they are doing so in a familial context that is much changed, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear. How do well-parents understand and negotiate their ever-changing role, and how do their children experience it? In this presentation we offer results of a qualitative study of YOD families regarding the changing nature of the parental-child relationship.
Methods
In-depth, semi-structured interviews were conducted with 8 children ages 16-20 (3-18 when their parent was diagnosed) and 4 well-parents (all mothers). Participants were recruited through outreach at several agencies serving persons with AD, as well as through snowball sampling. Interviews lasted between 1 and 2 hours, were tape recorded with participant permission and transcribed. This data was analyzed using thematic narrative analysis, in which respondents’ material is closely read as it is gathered. From these initial readings, open codes, or key themes, were extracted. Subsequently, these codes were further classified and categorized to create larger categories and themes.
Findings
Three primary themes emerged. First, well-parents feel burdened not only by the amount and intensity of care their partners require, but by the financial toll of one earner exiting the workforce and the need to make all decisions- familial, financial, health-related- on their own. Secondly, well-parents expressed great concern about the effect of YOD on their children’s psychological, physical, emotional, social and academic development, and spoke about the ways they thought they were managing the condition to minimize the impact on their children. The well-parents felt they were protecting their children, and reported that the children were doing better than the children themselves did. In turn, the children described not wanting to burden their mother with their true feelings and experience. This discrepancy and difficulty communicating within the family is an important area for social work intervention. Thirdly, all interviewees report a lack of information about YOD and especially programs and services tailored to the YOD patient, spouse and children.
Conclusions and Implications
Social workers need to develop, implement, and evaluate appropriate interventions and supportive services to address the complex issues arising for parents and children in YOD families, particularly around fostering and improving communication between them.