Unmet needs and health‐related quality of life for Alzheimer’s disease and related dementia caregivers during transition to long‐term care placement: A scoping review

Abstract

AbstractBackgroundLong‐term care placement is a transition in the caregiving trajectory that may have a crucial health‐related quality of life implications for many Alzheimer’s diseases and related dementia family caregivers. The lack of knowledge related to family caregivers’ needs and their health‐related quality of life outcomes surrounding long‐term care placement represents a gap in the field as it limits our ability to support caregiving families with appropriate interventions effectively. The objective of this study is to identify experiences, unmet needs, and health‐related quality of life for caregivers of persons with Alzheimer’s disease and related dementia as the process of transitioning into long‐term care placement.MethodScoping review of published literature. Electronic searches of PubMed, PsycINFO, Scopus, and CINAHL databases were conducted using keywords related to Alzheimer’s disease or related dementia, family caregiver, unmet needs, and health‐related quality of life. The literature search was performed in July 2020, with no specified date limits. The Arksey and O’Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons.Result19 studies were organized around three major categories. First, caregiver experiences of pre and post long‐term care placement (n = 18, 95%): contexts of long‐term care placement (n = 10, 53%), distress and emotional responses (n = 9, 47%), and changes in relationships and responsibilities (n = 9, 47%). Second, caregivers’ unmet needs of surrounding long‐term care placement (n = 7, 37%): emotional concerns and support (n = 4, 21%) and knowledge, and information (n = 5, 26%). Third, caregivers’ health‐related quality of life during transitioning long‐term care placement (n=6, 32%): assistance from professional care (n=2, 11%), and physical and mental health (n=5, 26%).ConclusionFamily caregivers are exposed to risk for adverse health outcomes even after the long‐term care placement of their care‐recipients. Family caregivers considering long‐term care placement need to be informed of what may change following long‐term care placement. We can suggest based on these findings that interventions may be to support caregivers during this transition with teaching skills, care planning, helping with conflict resolution, training in the use of communication strategies, and organizing services.