Brief 6-item Scale Measures Grief in Caregivers of Persons With Dementia
By Lorraine L. Janeczko
NEW YORK—A six-item scale can quickly help doctors measure the severity of grief in caregivers of persons with dementia, researchers from Singapore report.
"Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person," Dr. Tau Ming Liew of the Institute of Mental Health and Dr. Philip Yap of the Geriatric Education and Research Institute write in The Gerontologist, online December 13.
"Although such experience of caregiver grief is measurable, available scales (such as the Marwit-Meuser Caregiver Grief Inventory, MM-CGI) are lengthy and have overlaps with other caregiving constructs," they note. "This study developed the first brief scale (with <10 items) that provides a convenient and accurate measure of caregiver grief, which opens the way for grief-related interventions in clinical care."
The researchers had 394 family caregivers of community-dwelling PWDs complete the 50-question MM-CGI and other caregiving questionnaires.
Drs. Liew and Yap divided the caregivers into a 179-participant derivation sample to develop a brief scale that best predicted MM-CGI, and a 215-participant validation sample to verify the scale's performance in predicting MM-CGI.
The six-item scale, which they call the MM-CGI-BF (Brief Form), explained 84.1% of the variability in MM-CGI and had an area under the receiver operating characteristic (ROC) curve of 0.96 for detecting high caregiver grief.
The MM-CGI-BF was one-dimensional in confirmatory factor analysis (comparative fit index = 0.98; Tucker-Lewis index = 0.97). It showed psychometric properties similar to those of the MM-CGI and lower correlation with caregiver burden and depression. Its scores were closely mapped to the MM-CGI.
The six MM-CGI-BF questions are: I miss so many of the activities we used to share; this situation is totally unacceptable in my heart; I'm angry at the disease for robbing me of so much; it hurts to put her/him to bed at night and realize that she/he is "gone;" I feel powerless; I can't contain my sadness about all that's happening.
The response scale is: 1) strongly disagree; 2) disagree; 3) somewhat agree; 4) agree; 5) strongly agree.
"Grief is considered high if the total score of the 6 questions is higher than 20," Dr. Liew told Reuters Health by email.
"In our previous study, we showed that up to 86% of family caregivers acknowledged the experience of loss and grief in dementia caregiving, and one-fifth experienced high levels of caregiver grief potentially requiring further intervention," he noted. "Yet caregiver distress is often under-recognized in clinical care."
"This simple questionnaire allows healthcare professionals to identify which caregivers are having difficulty with loss and grief and helps caregivers understand that their sense of loss and grief is common and normal," Dr. Liew added. "Realizing that their experiences are not unique may help caregivers feel less isolated or lonely."
But he cautioned, "Until society at large has better recognition and acceptance of 'pre-death' grief, individual interventions may be limited."
Dr. Katherine P. Supiano, director of Caring Connections: A Hope and Comfort in Grief Program at the University of Utah College of Nursing in Salt Lake City, told Reuters Health by email, "This study using an easy-to-administer scale is an important effort to identify the pre-loss grief status of dementia family caregivers prior to the loss of their person with dementia."
"It is important to be able to identify risk for poor bereavement outcome," noted Dr. Supiano, who was not involved in the study. "Nearly 15% of dementia family caregivers describe feeling unprepared for the death, despite many years of caregiving.”
"This leaves these family caregivers at risk for a debilitating form of grief called 'complicated grief.' Spouse caregivers and/or the primary adult child caregiver are most at risk," she explained. "We need to be particularly attentive to the needs of those who will have markedly distressing grief."
"This new assessment tool will assist in appropriately directing psychotherapeutic interventions," she concluded.
Dr. Dimitris N. Kiosses, an associate professor of psychology in clinical psychiatry at Weill Cornell Medicine in New York City, noted, "The study focuses on an important aspect of caregiving, which is the grief of the caregiver before the death of the person with dementia."
"This is critical, as the caregiver may experience not only the decline of the mental and physical health of the person with dementia but also an emotional loss because the person with dementia may be physically but not emotionally present," Dr. Kiosses, who also was not involved in the study, told Reuters Health by email.
Drs. Liew and Yap are conducting an observational cohort study to evaluate the longer-term impact of loss and grief on dementia caregiving.
The study had no commercial funding, and the authors reported no conflicts of interest.
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