Grief Before Loss:
Measuring Grief for Caregivers of People With Dementia

Those who find themselves being caregivers for people with dementia, even when that person is in assisted living or a skilled nursing facility, can often end up grappling with a complex web of emotions. It may seem counterintuitive, but more and more it is recognized that people can experience the various stages of grief long before the actual death of their loved one. They can feel the loss of their spouse’s or parent’s personality, their spark, and find themselves instead taking care of someone they feel that they hardly know. Too often, this private struggle with weighty grief goes unnoticed and therefore unaddressed, overshadowed by the pressing needs of the person with dementia.

Until recently, the only scales measuring the level of grief being experienced by caregivers of people with dementia have been lengthy, and overlapped with measurements of other caregiving-related dimensions. A research team from Singapore recently developed a brief 6-item scale to address the need for a more simple, focused, and accurate assessment of the degree of grief being experienced by caregivers.

Using a scale ranging from 1 (strongly disagree) to 5 (strongly agree), caregivers respond to items such as: “I miss so many of the activities we used to share,” and “It hurts to put him/her to bed at night and realize he/she is ‘gone.’” Adding up the total responses to the 6 items provides a concrete score which, the study demonstrates, is quite accurate at reflecting the degree of grief being experienced by the caregiver.

Although more is needed to further public education about the potential for experiencing grief long before the death of a loved one with dementia, the development of this scale shows promise in helping the medical community more quickly screen caregivers for high degrees of grief. Once identified, individualized interventions may be applied; referrals to support groups, individual or family therapy, or even simply some psychoeducation that what they are experiencing is real and valid and that they are not alone can be very helpful.

If you or a loved one are a caregiver for someone with dementia and might be experiencing painful grief, you can visit https://www.alz.org/help-support to find resources for help and support, education, and connections to in-person and online support groups.

References:
Ming Liew, T., Yap, P. (2018). A Brief, 6-Item Scale for Caregiver Grief in Dementia Caregiving. The Gerontologist. Retrieved from https://doi.org/10.1093/geront/gny161
Janeczko, L. L. (2018) Brief 6-item Scale Measures Grief in Caregivers of Persons With Dementia. Medscape. Retrieved from https://www.medscape.com/viewarticle/907243