"It may cost you your money, it costs you your life": a framework for financial hardship in dementia.

BACKGROUND AND OBJECTIVES: Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual frameworks of the financial experiences of people impacted by dementia exist. This study examined how patients and caregivers impacted by different types of dementia and at different points in the disease journey described financial issues within a palliative care context.

RESEARCH DESIGN AND METHODS: We conducted a secondary analysis of data from qualitative studies of palliative care needs in dementia (2018-2020) that systematically asked about financial challenges. Interview participants were recruited from a specialty dementia center. Using a hybrid inductive-abductive approach and thematic analysis, we created a conceptual framework to represent themes among people with varied experiences with dementia types and stages.

RESULTS: Among 52 participants recruited, 27 were former caregivers, 16 were current caregivers, and 9 were persons with dementia; experiences reflected Alzheimer's (n = 18), sporadic Creutzfeldt-Jakob (n = 12), Lewy body (n = 7), and other dementias (n = 15). Financial hardships resulted from mismatches between needs and resources people had (direct financial hardships), how they felt about resources (emotional financial hardships), or what they could do with resources (logistical financial hardships). Mitigators of financial hardship included long-term-care insurance, Medicaid, or wealth, while intensifiers included being middle-income and in the workforce during disease manifestation.

DISCUSSION AND IMPLICATIONS: Even in a well-resourced population, the financial toll of dementia can be substantial. The Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings.