Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners

Abstract

Care partners (CP) of people with dementia (PWD) report that decisions about care setting are aided by the support of healthcare providers. However, providers are often underprepared to offer adequate counseling. This qualitative study aimed to identify what support from providers will assist CPs in making decisions related to care setting throughout the dementia journey. We conducted semi-structured interviews with current CPs of PWD and former CPs of decedents. We utilized the constant comparative method to identify themes regarding preferences around care setting as the PWD progressed from diagnosis to end-of-life. Participants were 31 CPs, including 16 current and 15 former CPs. CPs had a mean age of 67 and were primarily white (n = 23/31), female (n = 21/31), and spouses (n = 24/31). Theme 1: Current CPs discussed overwhelming uncertainty pertaining to care setting, expressing “I don’t know when I need to plan on more care,” and a desire to understand “what stage we are at.” Theme 2: Later in the disease, former CPs wanted guidance from healthcare providers on institutional placement (“I sure would’ve loved some help finding better places”) or support to stay in the home (“a doctor had to come to the house”). CPs want early, specific guidance from healthcare providers related to transitions between home and long-term care. Early in the disease course, counseling geared toward prognosis and expected disease course helps CPs make plans. Later, caregivers want help identifying locations or institutionalization or finding home care resources.