Development and validation of a simple screening tool for caregiver grief in dementia caregiving

Abstract

Background Loss and grief are experienced by caregivers of persons with dementia (PWD), relating to the ambiguous loss of PWD even when they are still alive and the anticipation of future loss related to their physical death. Such experience of caregiver grief is not easily recognized in clinical practice, despite its association with adverse effects such as caregiver burden, caregiver depression and caregivers’ desire to place the PWD in nursing homes. We constructed a simple screening tool – based on factors associated with caregiver grief – to identify caregivers with high grief. Methods Spouses or children of community-dwelling PWD ( n = 403) completed self-administered questionnaires containing a well-established grief scale and information related to the caregiver and PWD. We split the study sample into two – the derivation sample ( n = 300) was used to identify factors associated with grief (using logistic regression) and derive a simple tool based on the number of identified factors; the validation sample ( n = 103) evaluated the performance of the tool using the receiver-operating-characteristic-curve-analysis (ROC). Results Four key factors were identified by the multivariable regression – more severe dementia (odds ratio, OR 6.9), behavioral problems in PWD (OR 5.0), spousal caregivers (OR 6.0) and daily caregiving (OR 3.0). The screening tool (based on the number of key factors) had an area under ROC of 0.77. At the optimal cut-off of ≥2 key factors, the tool had a sensitivity of 0.91 and a specificity of 0.42. Conclusions The identified factors are consistent with current understanding on caregiver grief. They can be easily integrated into the workflow of routine services to screen for caregivers who are more likely to benefit from further grief-related assessment. Electronic supplementary material The online version of this article (10.1186/s12877-019-1070-x) contains supplementary material, which is available to authorized users.

Interventions for Grieving and Bereaved Informal Caregivers: A Scoping Review of the Canadian Literature

“…In addition to evaluating effectiveness, research towards the development of accurate screening tools is required to ensure that healthcare providers are able to prescribe the appropriate intervention. 41 This scoping review also demonstrated how ongoing intervention research has engaged many groups of people connected to caregivers, including healthcare professionals. These interactions often occur when attempting to evaluate a certain intervention, as has been seen throughout the selected articles.…”

“… 30 Caregiver grief may be challenging to recognize in clinical practice, and may not be frequently recognized by typical burden scales. 41 Previous work has identified difficulties in differentiating depressive symptoms from grief. 42 This highlights the importance of accurately diagnosing grief in informal caregivers, so that healthcare professionals are able to prescribe the appropriate interventions.…”

“…The development of accurate screening tools to predict grief in informal caregivers will be required to achieve this goal. 30 , 41 It is evident, based on the variety of interventions explored in this scoping review, that there are several diverse avenues to address caregivers’ needs for support. This includes music therapy, spiritual care practices, and the use of keepsakes.…”

An examination and proposed definitions of family members’ grief prior to the death of individuals with a life-limiting illness: A systematic review

“…Three of the articles were led by the same first author and described caregiver grief as anticipation of future losses related to physical death of a person with dementia. 95,97,99 Marwit and Meuser 103 discussed caregiver grief as a stage-determined, internally consistent construct that is measurable but did not provide an explicit definition. Guerrero 71 defined caregiver grief as feelings of grief, including sadness, longing, worry, felt isolation, personal sacrifice, and burden prior to the death of the care recipient.…”

Feelings Experienced by Informal Caregivers of Patients with Dementia, from the Moment of Diagnosis Until the Beginning of Psychotherapy

“…Specifically, the sense of safety and security is shaken, the sense of continuity is disturbed, whereas the future seems uncertain [6]. According to recent findings, caregivers, at the time of diagnosis, experience sudden changes in their relationships and family structure, whereas they anticipate an uncertain future [7][8][9][10]. Moreover, during caregiving, caregivers often report high levels of stress, low self-esteem, low sense of well-being, depressive symptomatology, increased levels of burden, compromised physical Submit your Manuscript | www.austinpublishinggroup.com social and emotional support received [21].…”