Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

Abstract

<jats:title>ABSTRACT</jats:title><jats:sec id="S1041610220000289_as1" sec-type="other"><jats:title>Objectives:</jats:title><jats:p>Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers.</jats:p></jats:sec><jats:sec id="S1041610220000289_as2" sec-type="other"><jats:title>Design:</jats:title><jats:p>Cross-sectional.</jats:p></jats:sec><jats:sec id="S1041610220000289_as3" sec-type="other"><jats:title>Setting:</jats:title><jats:p>Caregivers of people with dementia living at home or in a care home.</jats:p></jats:sec><jats:sec id="S1041610220000289_as4" sec-type="other"><jats:title>Participants:</jats:title><jats:p>In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%).</jats:p></jats:sec><jats:sec id="S1041610220000289_as5" sec-type="other"><jats:title>Measurements:</jats:title><jats:p>Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden”; “heartfelt sadness”; “worry and felt isolation”).</jats:p></jats:sec><jats:sec id="S1041610220000289_as6" sec-type="other"><jats:title>Results:</jats:title><jats:p>Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower “heartfelt sadness.”</jats:p></jats:sec><jats:sec id="S1041610220000289_as7" sec-type="other"><jats:title>Conclusion:</jats:title><jats:p>We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).</jats:p></jats:sec>

Supporting families in end-of-life care and bereavement in the COVID-19 era

“…The three-tiered public health approach to bereavement suggests that most people will manage grief with support through their social network (Aoun et al, 2015). Our recent work has shown that among a range of factors relating to preparation for end of life, social support had the greatest impact on grief while caring for a relative with dementia (Moore et al, 2020). However, as we are confined to our homes, access to our social network may be reduced.…”

Promoting preparedness and reducing pre-death grief

“…Much research has focused on exploring relationships after death when negative outcomes have already occurred (e.g., complicated grief, depression, anxiety) (Nielsen et al, 2016;Schulz et al, 2015). However, little is known about the relationship between preparedness and pre-death grief (Moore et al, 2020).…”

“…In the paper by Moore et al (2020), the authors explored the relationship between pre-death grief and death preparedness among family caregivers of persons with dementia. Moore et al (2020) hypothesized that higher levels of pre-death grief were associated with lower levels of death preparedness.…”

“…Understanding the relationship between modifiable preparedness factors and grief before death was necessary to be proactive and design/deliver supportive interventions before negative outcomes occurred in bereavement. Moore et al (2020) therefore addressed an important gap in literature.…”

“…Limitations included the female majority in the sample (which is often the case in caregiving studies), the use of dichotomous responses as opposed to a Likert-scale for some preparedness indicators, and the lack of a holistic, tested measure for death preparedness in this population (Streiner et al, 2015). Moore et al (2020) acknowledged that the current lack of a multidimensional questionnaire and standardized indicators for preparedness is problematic. Ideally, questionnaires and indicators are based upon a theory or model (Streiner et al, 2015).…”