ArticleThe Gerontologist2025
"It may cost you your money, it costs you your life": a framework for financial hardship in dementia.
Article in The Gerontologist, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- "Co-production is catnip to my brain. I need it and I would be in care otherwise": a call for action for researchers to safeguard the integrity of co-production in dementia research.Research involvement and engagement · 2026Article
- Developing a Quality-of-Life Measure for Carers of People with Dementia for Use in Economic Evaluations: Results from the COCOON Project.PharmacoEconomics · 2026Article
- Financial strain contributes to daily depressive and anxiety symptoms in Hispanic and Latino family caregivers of people living with dementia: A daily diary study.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- Financial Toxicity and Multidimensional Economic Strain Among Dementia Caregivers.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- "They're exhausted": Hospice Staff Views on Caring for Patients and Families Impacted By Dementia.Journal of pain and symptom management · 2026Article
- Use of Personal and Social Resourcefulness by Adult-Child and Spousal Caregivers of Persons with Dementia.International journal of aging & human development · 2026Article
Corrections and comments
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Authors and funding
16 authors.
Funding
Abstract
BACKGROUND AND
objectivesCare 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
methodsWe 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.
resultsAmong 52 participants recruited, 27 were former caregivers, 16 were current caregivers, and nine 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. Our novel Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings.
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