Development and psychometric properties of the family distress in advanced dementia scale

The majority of scales to measure family member distress in dementia are designed for community settings and do not capture the unique burdens of the nursing home (NH) environment. We report the psychometric properties of a new Family Distress in Advanced Dementia Scale for use in the NH setting.

Cross-sectional questionnaire of 130 family member health care proxies of NH residents with advanced dementia in 31 Boston-area NHs.

Thirty-one initial items were evaluated, measuring the frequency over the past 3 months of sources of distress. Exploratory factor analysis identified domains of distress; Cronbach's alpha was computed for each domain. Associations between the domains and other measures were evaluated using Pearson correlation coefficients, including measures of depression (PHQ-9), satisfaction with care (Satisfaction with Care at the End-of-Life in Dementia [SWC-EOLD]), and caregiver burden (Zarit Burden Interview short version).

Factor analysis suggested 3 domains: emotional distress (9 items), dementia preparedness (5 items), and NH relations (7 items). Cronbach's alpha coefficients were 0.82, 0.75, and 0.83 respectively. The PHQ-9 correlated most strongly with the emotional distress factor (r = 0.34), the SWC-EOWD correlated most strongly with the NH relations factor (r = 0.35), as did the Zarit Burden Scale (r = 0.50).

The Family Distress in Advanced Dementia Scale encompasses 3 domains of distress. This scale represents a much needed tool to assess distress among family members of NH residents with advanced dementia and provides a metric to evaluate interventions in the population.