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


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


METHODS
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).


RESULTS
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).


CONCLUSIONS
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.
Hebrew SeniorLife Institute for Aging Research, Boston, MA; Division of Gerontology, Beth Israel Deaconess Medical Center, Boston, MA. Electronic address: JaneGivens@hsl.harvard.edu.
Jane L
JL
Givens
Department of Psychiatry and Human Behavior, Warren Alpert Medical School, Brown University, Providence, RI.
Richard N
RN
Jones
University of Massachusetts Medical School, Meyers Primary Care Institute, Worcester, MA.
Kathleen M
KM
Mazor
Weill Cornell Medical College, New York, NY.
Holly G
HG
Prigerson
Hebrew SeniorLife Institute for Aging Research, Boston, MA; Division of Gerontology, Beth Israel Deaconess Medical Center, Boston, MA.
Susan L
SL
Mitchell
D001900:Boston; D003430:Cross-Sectional Studies; D003704:Dementia / Q000451:nursing*; D005163:Factor Analysis, Statistical; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D009735:Nursing Homes; D011594:Psychometrics; D011795:Surveys and Questionnaires
Caregiver burden; dementia; nursing home