'I just feel so unloved': using grounded theory to explore adult children's experiences of unresponsiveness from their parents living with dementia.

OBJECTIVES

Responsiveness is the cornerstone of relationship satisfaction, and parents with dementia may become increasingly unresponsive due to cognitive impairment. During a child's development, their parent's responsiveness-ability to perceive and tend to their core concerns, significantly impacts the child's attachment and self-image. Given increasing dementia prevalence and its impact on caregivers' mental health, understanding unresponsiveness may enhance caregiver support.

METHOD

This grounded theory study aimed to develop a conceptual model of how unresponsiveness from parents with dementia manifests from the perspective of their adult child caregivers. Twelve caregivers of parents with dementia participated in semi-structured video interviews.

RESULTS

Participants experienced intense emotional pain, traumatizing relational shifts, and invalidation. Reactions to unresponsiveness included positive coping strategies (e.g. self-care), empathy for parents, and defense strategies (e.g. withdrawal due to perceiving unresponsiveness as threatening). Unresponsiveness was often interpreted as a reflection of participant self-worth, damaging their self-image.

CONCLUSION

A conceptual model illustrates the dynamic interplay of experiences, reactions, and meanings given to unresponsiveness. Novel findings suggest perceptions of unresponsiveness from parents with dementia may lead to disorganized attachment patterns and compromised self-images in adult child caregivers. The conceptual model may enhance caregiver support by helping clinicians normalize and address these experiences.