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 dont 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 wouldve 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.

Background

In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer.

Objective

We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers.

Methods

We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping.

Results

40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home.

Conclusion

Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.