Development and Validation of the Family Quality of Life in Dementia Scale

Abstract

Background and objectives: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale.

Research design and methods: Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244).

Results: Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures.

Discussion and implications: The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.

Keywords: Caregiving—informal; Dementia; Measurement.