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SDOH in Caregiving

This page synthesizes the evidence base for applying social determinants of health (SDOH) frameworks to family caregiver populations. It supports GiveCare's zone model and SDOH Framework.

The adaptation rationale

Standard SDOH frameworks were developed for patients. The three most widely adopted — NAM (2017)1, PRAPARE (2019)2, and AHC3 — screen for social factors affecting patient health outcomes. They were not designed for caregivers.

This is a consequential gap. Caregivers experience SDOH pressures that are:

  1. Distinct from patient SDOH — Caregivers face navigation burden (legal, insurance, healthcare systems) that patients do not. Caregiver financial strain compounds differently ($7,242/yr out-of-pocket on top of their own expenses4).

  2. Invisible to patient-facing tools — A patient SDOH screen administered in a clinical setting will not surface the caregiver's housing instability, the caregiver's social isolation, or the caregiver's food insecurity. The caregiver is not the patient.

  3. Bidirectional with patient outcomes — Caregiver SDOH pressures degrade care quality, which worsens patient outcomes, which increases caregiver burden. Intervening on caregiver SDOH breaks this cycle.

  4. Temporally dynamic — Caregiver SDOH profiles shift as the care recipient's condition progresses. Early-stage caregiving may show financial and time pressures; late-stage may add housing modifications, legal complexity, and profound emotional load.

Key frameworks and their limitations

NAM SDOH Framework (2017)

The National Academy of Medicine established five broad SDOH domains1:

NAM Domain Relevance to caregivers Limitation
Economic stability High — financial strain is top stressor Does not capture caregiver-specific costs (lost wages, OOP medical)
Education access & quality Low for established caregivers Health literacy is relevant but domain is too broad
Health care access & quality Medium — caregivers delay own care Focuses on patient access, not caregiver access
Neighborhood & built environment Medium — home modifications needed Does not capture caregiver-specific housing needs (accessibility, space)
Social & community context High — isolation is primary risk factor Does not distinguish caregiver isolation from general social isolation

PRAPARE (2019)

The Protocol for Responding to and Assessing Patients' Assets, Risks, and Experiences2 is the most widely implemented clinical SDOH screening tool.

Strengths for caregiver adaptation:

  • Includes social integration and isolation measures (maps to P1)
  • Covers housing stability and safety (maps to P3)
  • Addresses material hardship and employment (maps to P4)
  • Asset-framing in the name ("Assets, Risks, and Experiences") aligns with strength-based approach

Gaps for caregiver use:

  • No legal/navigation domain (P5 in GiveCare's model)
  • Emotional wellbeing items are minimal (P6 needs dedicated measurement)
  • Physical health items focus on patient conditions, not caregiver physical strain

AHC Screening Tool

The Accountable Health Communities screening tool3 focuses on community-level social needs that affect health.

Strengths for caregiver adaptation:

  • Housing instability questions are directly applicable
  • Food insecurity screening transfers well
  • Utility difficulties apply to caregiver households

Gaps for caregiver use:

  • Interpersonal safety framing does not capture caregiver-specific relational dynamics
  • No care navigation or legal domain
  • No emotional wellbeing measurement

Evidence for caregiver-specific domains

Legal and system navigation is a caregiver-specific SDOH domain with no equivalent in standard frameworks. Evidence supporting its inclusion:

  • Caregivers report healthcare system navigation as a top stressor alongside financial burden4
  • 55% handle medical/nursing tasks; only 11% are trained — the system expects competence without providing it
  • Power of attorney, advance directives, and guardianship decisions carry legal weight that caregivers navigate without legal training
  • Insurance appeals, Medicare/Medicaid applications, and disability determinations require sustained administrative effort

P6: Emotional Wellbeing (under-measured in standard SDOH)

Standard SDOH tools include minimal emotional assessment. For caregivers, emotional wellbeing is both an outcome and a predictor:

  • 64% report high emotional stress4
  • Dementia caregivers show 16% depression prevalence (vs. ~7% general population)
  • Emotional wellbeing directly predicts care quality and crisis risk — it is the primary feed into crisis detection

The state-level picture

48% of US states are at or beyond an unpaid family caregiving emergency threshold5. This is not a projection — it is a measurement of current caregiver infrastructure strain against current demand. The SDOH pressures on caregivers are not individual failures; they are systemic.

GiveCare's synthesis

GiveCare's zone model synthesizes these frameworks into a six-zone structure calibrated for caregiver populations:

  1. Preserves the multi-dimensional structure from NAM
  2. Draws specific screening items from PRAPARE and AHC
  3. Adds two caregiver-specific domains (P5, P6) absent from standard tools
  4. Implements adaptive depth (SDOH-6 quick screen, SDOH-30 deep-dive per flagged zone)
  5. Links every flagged zone to actionable benefits and interventions

The full instrument is the GC-SDOH-30, open-sourced in the care-tools/ repository.

  1. NAM. "Social Determinants of Health Framework." 2017. Source → ↩↩

  2. NACHC. "PRAPARE Implementation and Action Toolkit." 2019. Source → ↩↩

  3. CMS. "Accountable Health Communities Health-Related Social Needs Screening Tool." Source → ↩↩

  4. AARP/NAC. "Caregiving in the United States 2025." Source → ↩↩↩

  5. Columbia University. "State Caregiving Emergency Index." 2025. Source → ↩