OBJECTIVES

• To characterize out-of-pocket (OOP) costs among persons living with dementia (PLWD).
• To examine cost variation by type of care and dementia severity.

BACKGROUND

• U.S. PLWD face substantial financial burden due to high OOP costs.
• Quantifying OOP spending by type of care and dementia severity:
  • Helps PLWD and their families anticipate financial burden of dementia care and make informed care and financial decisions.
  • Informs policies to alleviate the financial burden of dementia care. 

METHODS

• Systematic literature review of U.S. studies (2010–2026) reporting OOP costs associated with dementia care.
• Literature search: PubMed, Embase, and reference lists
• Literature screening and abstraction:
  • AI-assisted Nested Knowledge AutoLit systematic review platform.
  • Abstracts screened by a reviewer and AI, discrepancies adjudicated by a second reviewer.
  • Full texts screened by two independent reviewers and AI, discrepancies resolved by consensus.
  • Data extracted by one reviewer and validated by a second.
• Extracted mean OOP costs:
  • By dementia severity: Mild, moderate, severe
  • By type of care:
    • Medical care (e.g., hospitalization, outpatient visits)
    • Long-term care (LTC): Community-based services (e.g., home modifications), residential LTC (assisted living, nursing home)
    • Care-related supplies (e.g., hygiene products) 

• Costs annualized and inflation-adjusted to 2026 U.S. dollars.

Results

• PLWD’s annual mean total OOP costs ranged from $8,420 to $21,027 (17% to 42% of an estimated mean $50,000 household income).
• Nursing home OOP costs varied widely; estimates ranged from $7,617 – $11,039 (from HRS and MCBS) to $22,610 (from NHATS).
• Only one study reported OOP costs for community- based services, one for assisted living, and none for care-related supplies.
• Only two studies (both HRS-based) examined mean total OOP costs by dementia severity.

Conclusion

• Critical data gaps remain in PLWD’s OOP costs for LTC, care-related supplies, and costs by dementia severity.
• Addressing these gaps:
  • Facilitates dementia care and financial planning for PLWD and families.
  • Guides policies (e.g., Medicaid home and community-based services waivers and Program of All-Inclusive Care for the Elderly) that improve access to LTC services and care-related supplies, alleviating the financial burden for vulnerable families.