FACTORS IMPACTING LOSS-TO-FOLLOW-UP FROM A MEMORY CARE CENTER: A STUDY OF POTENTIAL PALLIATIVE CARE NEEDS

Abstract

Dementia is a progressive and ultimately terminal illness requiring palliative care for people with dementia (PWD) and their caregivers. With cognitive and functional decline, caregivers experience increasing challenges in navigating the healthcare system and utilizing traditional ambulatory care services. We aimed to address a gap in our understanding of palliative care needs among PWD and their caregivers, who were lost to follow-up after being seen at a memory care unit within a large quaternary US academic medical center. We conducted a chart review of the characteristics and needs of 61 people with a diagnosed dementia syndrome, who were lost to follow-up for at least a year prior to death, after being seen at least once between 2012–2017 at the UCSF Memory and Aging Center. Among PWD who died, 50% were lost to follow-up a year or more before death. Of those whose charts we reviewed, 48% were female, 66% were white, with median education of 16 years. The most common diagnoses were Alzheimer's disease (47%), vascular dementia (24%), and dementia with Lewy body disease (13%). Commonly documented reasons for PWD and their caregivers not returning for care in the memory and aging center included switching care to another provider (33%), patient mobility changes (25%), and an overwhelmed caregiver (22%). Notes of conversations with caregivers provided additional insights related to care coordination challenges and a sense that there was no one to meet their needs: “L and her sister feel no one is coordinating [their] mom's care or has the ‘big picture’”; “Mr. X is overwhelmed with the challenges and stresses of managing his wife's care and their own household situation.” Understanding the end of life needs of PWD will be foundational for the subsequent design and implementation of clinical palliative care interventions that are person and caregiver centered. Attention to care coordination, PWD mobility limitations and caregiver stress will be key components of care for future dementia palliative care interventions.