Factors influencing choice and ability to age in place: A qualitative study with patients, caregivers, and clinicians

Abstract

AbstractBackground“Aging in place” (AIP), the ability to remain in one’s home with age, has broad appeal to policy makers and professionals providing services to adults with serious illness. AIP is viewed as both an intervention for people with dementia (PWD) and as a desirable outcome. However, it’s not clear that AIP is always associated with sustained quality of life, and in some circumstances, may hinder it. As clinical and policy efforts increase to promote AIP for PWD, it is imperative to understand how AIP aligns with patient and family values and what factors influence choice and ability to remain in one’s home.MethodIn this qualitative study, we explored stakeholders’ perspectives on what makes a “good day” for a PWD and their family caregivers and decision making around AIP. We conducted semi‐structured interviews among PWD or cognitive impairment, family caregivers of PWD or cognitive impairment, and clinicians who care for PWD. Participants were purposively sampled to enroll individuals with a range of dementia severity, professional expertise, and demographic characteristics. All interviews were audio‐recorded and transcribed. De‐identified transcripts were reviewed by the research team independently and during weekly consensus meetings to identify relevant themes. Sample size was determined by reaching thematic saturation within each stakeholder sub‐group.ResultWe conducted 70 interviews among 13 patients, 33 caregivers, and 24 clinicians (Table 1). Caregiver burden, caregiver guilt, patient independence, patient safety, perceptions of care facilities, and financial consideration were all themes that influence whether a person can and will AIP (Table 2). Among patient‐caregiver dyads who wished to prioritize AIP, a change in the patient’s living situation was only pursued if and when a “breaking point” was reached by the caregiver. Themes were organized in a conceptual model as patient, caregiver, or systems factors (Figure).ConclusionNumerous factors influence the ability and choice of PWD and their family caregivers to AIP and likely impact the quality of life of patient and family caregivers as dementia progresses. Any program seeking to enhance AIP must take these factors into account. Furthermore, measuring success of AIP will need outcome measures that better capture these dimensions.