Representation in the Care Planning Process for Nursing Home Residents With Dementia

Objectives: Federally mandated assessments of nursing home (NH) residents drive individualized care planning. Residents with cognitive impairment may not be able to meaningfully communicate their care needs and preferences during this process-a gap that may be partially addressed by involving surrogates. We describe the prevalence of family participation in the care planning process for long-stay NH residents with varying degrees of cognitive impairment.

Design: Retrospective study using administrative data made available as part of an ongoing pragmatic cluster randomized controlled trial.

Setting: A total of 292 NHs from 1 large for-profit NH system.

Participants: Long-stay NH residents in 2016.

Measurements: We identified all care planning assessments conducted in 2016 for long-stay NH residents. Cognitive functioning was defined using the Cognitive Function Scale. The Minimum Data Set was used to determine whether a resident, family member, and/or legal guardian participated in the assessment process. Certification and Survey Provider Enhance Reporting system data was used to identify facility-level correlates of family participation. Bivariate and multivariable hierarchical regression results are presented.

Results: The analytic sample included 18,552 long-stay NH residents. Family member/representative participation varied by degree of resident cognitive impairment; 8% of residents with no cognitive impairment had family or representative participation in care planning during 2016, compared with 26% of residents with severe impairment. NHs with more social workers had greater family participation in care planning. Available NH characteristics do not explain most of the variation in family participation between NHs (residual intraclass correlation = .57).

Conclusions: Only a minority of family members and surrogates participate in NH care planning, even for residents with severe cognitive impairment. The association between social work staffing and participation suggests family involvement may be a measure of quality improvement capacity. Our findings suggest a lack of voice for a vulnerable population that may have implications on the quality of care received at the end of life.