To our knowledge, this is the first study describing factors associated with predeath grief symptoms experienced by HCPs before the death of their loved one with advanced dementia in the NH setting. Although the overall mean grief score was relatively low, symptoms of separation distress (i.e., yearning or longing) were common among HCPs. Additionally, we report several factors that may help identify HCPs at higher risk for predeath grief, and who may benefit from interventions designed to reduce suffering. We also demonstrated that predeath grief symptoms are correlated with, but are distinct from, symptoms of depression.
The concept of predeath grief is particularly relevant in advanced dementia compared to other terminal conditions. Unlike cancer, where there may be some hope for recovery, advanced dementia is a progressive disorder that inevitably ends with death. Moreover, during the course of the disease, family members gradually lose the essence of their loved one because of the degenerative nature of dementia. Symptoms of grief, while present, were not extensive among of HCPs. It is possible that grief was more pronounced earlier in the dementia course or before institutionalization.
The decision to institutionalize is typically motivated by the family’s inability to continue providing adequate home care, and represents the loss of their role as primary caregiver. To that end, note that HCPs who had lived with the resident before institutionalization had greater predeath grief symptoms compared to those who had not. In addition to relinquishing their care-giving role, HCPs may be emotionally and psychologically closer to their loved ones and accordingly suffer more grief upon their separation. It is not surprising that separation distress was the most common manifestation of grief among HCPs, expressed as a sense of “yearning” for the patients as they used to be. Yearning is also commonly experienced by bereaved family members after the death of a loved one with cancer.35
The finding that lower satisfaction with NH care was associated with greater symptoms of grief supports earlier work demonstrating that better end-of-life care for patients is associated with better outcomes for family members,36
and offers a modifiable opportunity for improvement. It is not surprising that younger resident age was associated with more predeath grief. Younger age at the onset of dementia is associated with a more rapid rate of decline,37
and advanced dementia in a relatively younger person may be viewed as a particularly tragic loss. Although only 2% of HCPs spoke a primary language other than English, they experienced more predeath grief symptoms. This finding may reflect a greater sense of loss among cultures that are less accustomed to relinquishing the care of their loved ones to institutions. However, primary language is not an optimal measure of acculturation, and further research is needed to understand cultural differences in the grieving process.
This study, corroborates earlier work showing that grief and depressive symptoms are distinct among bereaved families,14,16,20,38
but extends this observation for the first time to advanced dementia, and to the concept of predeath grief. Bereavement-related depression and grief differ with respect to risk factors,39
and treatment response.21,22
For example, independent of depression, grief is associated with serious adverse consequences including: increased suicidal behavior, poorer physical health, and reduced quality of life.16–20
Regarding varying treatment response, Reynolds et al.21
found that nortriptyline and interpersonal psychotherapy, alone or in combination, ameliorated symptoms of bereavement-related depression (remission rate for combined therapy was 69%), but neither of these treatment modalities proved more effective than placebo in reducing grief symptoms over 16 weeks. In contrast, psychotherapy designed specifically to treat grief-related symptoms has been efficacious in randomized trials.23
The reason underlying the varying treatment response may relate to the notion that although grief may be associated with sadness, the primary problem is a sense of separation and loss. As such, treatments that aim to prepare family members specifically for those feelings may be more effective that treatments which only target symptoms of depression.23
Thus, it is important to establish that grief and depression are distinct conditions, so that clinicians do not misdiagnose and mistreat grief-related symptoms.
This study has notable limitations. First, because the CASCADE study was limited to the Boston area and a 89% white sample, our findings may not generalize to other locations and populations. Second, the study is cross-sectional and occurs at a random point in the residents’ NH home stay. Third, although the K6 is a validated measure of depressive symptoms, it does not provide a measure of “caseness” of depression. However, the relatively low frequency of depressive symptoms makes it is unlikely that many HCPs would have met the criteria for a major depression. Finally, this study does not explore the impact of predeath grief on HCP outcomes (e.g., bereavement).
Grief is associated with considerable morbidity and societal burden.18,40
This research is an initial step toward understanding grief among family members of persons with advanced dementia before their death. These family members experience grief symptoms, particularly separation distress, and these grief symptoms are distinct from those of depression. Moreover, health professionals should be particularly alert to family members of relatively younger patients, who are non-English speaking, and who lived with their loved ones before institutionalization, as they may be more susceptible to suffering predeath grief. Finally, improving the overall quality of NH care for residents dying with dementia may reduce symptoms of grief suffered by their families.