The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Background/Objective: Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of other conditions. The primary objective of this analysis is to determine the relationship between caregiver anticipatory grief and dementia severity, as measured by the Anticipatory Grief Scale (AGS) and Dementia Severity Rating Scale (DSRS), respectively. Methods: Multiple regression analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) trial; an RCT testing an ACT intervention for ADRD caregiver anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient and clinically significant anxiety (GAD7 score >10). Results: The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature. Multiple regression models showed a caregivers’ anticipatory grief is not significantly associated with the patients’ dementia severity as measured by the Dementia Severity Rating Scale (t=0.87). Results also revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (t=< 0.1). Conclusion and Potential Impact: Understanding these relationships contributes to better understanding ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

Treating Caregiver Grief With Narrative Therapy

Dementia, a devastating neurodegenerative disease with over 10 million new diagnoses each year, is characterized by many symptoms including memory loss .Individuals with memory less experience changes in mood, personality, behavior, cognition and activities of daily living which affect their daily lives. These monumental life shifts often occur rapidly, leaving caregivers unprepared to deal with the changes. Caregivers face a unique situations navigating anticipatory grief and changes in their relationships with their loved ones. Current psychological intervention for caregivers includes utilization of cognitive-behavioral therapy and psychoeducation. More recently, intriguing research has emerged regarding the efficacy of narrative therapy for couples where one partner experiences memory loss. However, treating the anticipatory grief component specifically for caregivers has been largely overlooked in these studies. Narrative therapy revolves around identifying the current story that caregivers utilize as their cognitive framework, helping to find alternative plotlines and to process their newly-built cognitive framework. It involves externalizing the problem (in this case, dementia) and locating strengths that the caregiver and their care receiver share to “fight” the problem. Insights from both the current literature and the field have demonstrated a promising outlook on the use of narrative therapy. Such insights imply a need for more research regarding this modality specifically for caregivers, as its core ideas can be easily disseminated to gerontologists, mental health professionals and caregivers.

Predicting Caregiver Reactions to Challenging Behaviors in the Context of Dementia

Challenging behaviors exhibited by people living with dementia have been associated with a variety of negative outcomes including greater caregiver burden, nursing home placement, and lower quality of life. Although there has been considerable research on psychological and behavioral changes in dementia, little research has explored family caregiver reactions to these changes and what caregiver characteristics are associated with stronger emotional reactions. This research examined the relationship between established indicators of caregiver mental health (depression, burden, grief, well-being) and caregiver reaction scores on the Revised Memory and Behavior Problems Checklist (RMBPC). The sample consisted of 76 family caregivers for people living with dementia, aged 25 to 93, who participated in a study on caregiver burden and grief. Multiple regression was used to predict RMBPC caregiver reaction scores from the Zarit Burden Inventory, Geriatric Depression Scale, Ryff Psychological Well-Being Scale, and Anticipatory Grief Scale while controlling for RMBPC total behavior frequency scores. RMBPC total behavior frequency scores and Zarit Burden Inventory were significant predictors of caregiver reaction scores (F(2,74) = 87.559, p &lt; .001, R2 = .703). More frequent, challenging behaviors were associated with more distressing reactions and higher caregiver burden also predicted more distress on the RMBPC reaction scores. Psychological well-being was associated with lower reactions at the bivariate level but was not significant in the full regression model. Future research is needed to better understand these relationships and implement this knowledge to benefit family caregivers.

The Relationship Between Family Caregivers’ Anticipatory Grief and Severity of Dementia

Anticipatory grief is the process of experiencing normal bereavement before the physical death of a significant person. To date, anticipatory grief has been related to higher levels of caregiver depression, anxiety, subjective burden, and poorer problem solving. Additionally, higher levels anticipatory grief are observed in caregivers of those with Alzheimer’s Disease and Related Dementias (ADRD) compared to caregivers of those with mild cognitive impairment, implying a relationship between disease severity and caregiver anticipatory grief. Analyses were performed on data for ADRD caregivers (n=56) enrolled in the IU Telephone Acceptance and Commitment Therapy for Caregiver (TACTICs) trial; an RCT evaluating an ACT intervention for ADRD caregivers with anxiety. Inclusion criteria included identifying as the primary caregiver of an ADRD patient, and clinically significant anxiety (GAD7 score &gt;10). The average age of caregivers was 61.9 years, 41.1% were spouses, 83.9% were white and 14.3% were black. Mean anticipatory grief scores were notably higher (84.6) compared to the previously reported means across the literature (74.9). Using multiple regression models, we determined a caregivers’ anticipatory grief, as measured by the anticipatory grief scale, is not significantly associated with the patients’ dementia severity, as measured by the Dementia Severity Rating Scale (DSRS) (p=0.66), Results revealed that higher levels of caregiver burden, as measured by the Zarit Burden Index, are significantly associated with more anticipatory grief (p&lt; 0.01). Understanding these relationships contributes to a better understanding of ADRD caregivers, identifying “high-risk” caregivers, and informing future interventions and care.

Mothers Caring for Adult Children With Substance Use Disorder: Understanding Lived Experience

Background Most persons with substance use disorder (SUD) live in family settings. In the absence of adequate mental health services, mothers are often called upon to provide care for their adult children with SUD. Despite positive outcomes such as decreased rates of hospitalization associated with family involvement, mothers are often stigmatized within the health care systems as contributors to trauma and/or family dysfunction. Purpose The purpose of this study is to explore mothers’ lived experience of caring for adult children with SUD. Method Guided by critical feminist theory, this study used interpretive descriptive qualitative research design to identify patterns within mothers’ experiences for practical relevance and application to service provision. Results The findings yielded in this study identified mothers’ experiences as: longing for wellness, identity as loving mother, loss, anticipatory grief, shame and blame and feeling excluded from services. Ultimately, the findings from this study extend the limited research to date on mothers’ experiences of stigma, especially when they are blamed for their child’s illness. Conclusions Findings from this study advocate for family-centered approaches that attend to mothers’ unique experience, from their standpoint, and offer recommendations for change to service provision.

Effects of family-based dignity intervention and expressive writing on anticipatory grief of family caregivers of patients with cancer: a study protocol for a four-arm randomized controlled trial and a qualitative process evaluation

Background Family caregivers of dying cancer patients are affected by grief experiences and bereavement complications. Several approaches such as psycho-emotional care and an increase in spirituality have been suggested to diminish these complications. However, the knowledge about the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients is limited. This is a study protocol describing a hospital-based mixed-methods study on the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients. Methods This mixed-methods study will be done in an embedded explanatory design with two quantitative and qualitative phases. In the first phase (quantitative), a randomized clinical trial will be done, in which 200 family caregivers of dying cancer patients will be randomly assigned to one of the four groups: family-based single dignity intervention (group 1), expressive writing intervention (group 2), combined family-based single dignity intervention and expressive writing (group 3), and control (group 4). At baseline, 1 week and 2 weeks after the interventions, anticipatory grief will be assessed by a 13-item anticipatory grief scale. After the quantitative phase, the qualitative phase will be conducted through the conventional content analysis approach of Granheim and Lundman, in which an individual semi-structured interview will be taken from participants in the first phase to collect data on their experiences on interventions. Finally, data from the quantitative and qualitative phases will be analyzed and discussed. Discussion Family caregivers of dying cancer patients usually experience depression, anxiety, and psychological distress due to isolation and inadequate social support. Psychological interventions such as dignity and expressive writing interventions may help caregivers to obtain a better understanding of themselves and to increase their abilities to cope with caregiving difficulties. Therefore, there is a need for a comprehensive study confirming the effects of mentioned interventions on family caregivers of dying cancer patients. Trial registration Iranian Registry of Clinical Trials (www.irct.ir) identifier: IRCT20210111050010N1. Date of trial registration: Feb 6, 2021. This is the first version of this protocol.

202 - Music Therapy Intervention to Reduce Caregiver Distress at End of Life: A Feasibility Study

ContextMusic therapy is frequently provided to patients at the end of life, and studies have shown a benefit in relief of symptoms and a positive impact on quality of life (QoL), but little is known regarding the effect of music therapy (MT) on caregivers. Caregivers are at risk for anxiety, emotional distress and experience anticipatory grief as the patient nears death. Caregivers are present with patients and may also benefit from MT.ObjectiveTo assess the impact of MT on caregivers for hospice patients and determine the feasibility of research in this population.MethodsTwenty caregivers of patients hospitalized for general inpatient hospice care were enrolled. MT was provided by a board-certified music therapist, and sessions included pre-MT assessment, 20-45 minutes of MT, and post-MT assessment. Caregiver stress was measured with the Pearlin Role Overload Measure (ROM), QoL was measured with the Linear Analogue Self-Assessment (LASA), and depression and anxiety were measured with the Patient Health Questionnaire for Depression and Anxiety (PHQ-4). These three measures were taken pre-MT, post-MT and 6 months post-MT. Caregivers were also asked to complete a Music Therapy Program Survey post-MT.ResultsThe MT intervention was completed for 15/20 caregivers (75%). Of those who did not complete MT, 2 withdrew prior, 1 was not available, 1 patient passed during the MT session, and 1 patient died prior to MT. 14 caregivers completed pre-MT and post-MT assessments, and 9 caregivers completed assessments at all 3 timepoints. The MT Program Survey (post-MT assessment, n=14) showed 100% of caregivers were very satisfied with MT and would recommend to others, 78% found MT effective for stress relief, 69% for relaxation, 71% for spiritual support, 86% for emotional support, and 71% for feeling of wellness.ConclusionResearch on MT is feasible for acute hospice care caregivers with a majority of caregivers consenting to research and about half completing surveys pre-MT, post-MT, and 6-months post-MT (9/20). Future larger studies should be conducted to better assess the impact of MT on caregivers.

1287Grief and mourning and its relation with anxiety and depressive symptoms during COVID-19 pandemic

Background During these unprecedented times, individuals who experience the sudden death of a family member or friend, already miss the anticipatory grief and are now also prevented from a proper farewell. This study aimed to address prolonged grief disorder since the beginning of the COVID-19 pandemic Methods A virtual snowball sampling survey was disseminated through social networking channels. The study enrolled participants from general resident population in Portugal with ≥18 years. Characteristics of the sample were summarized using descriptive statistics. Anxiety and depression symptoms are described by absolute and relative frequencies and compared through the Chi-square test. Results A total of 929 participants completed the survey; 17.9% (n = 166) have lost someone since the beginning of the pandemic, making our final sample. Most were female (66.9%); median age of 35 years and 70.5% had a high education degree. Participants who had lost a grandparent consisted of 28.3% of the sample, father and/or mother 9.0%, and a friend 22.3%. We found a prevalence of 30.7% of anxiety symptoms and 10.2% of depression symptoms (p = 0.030). Also, 16.8% have had a high score on the PG13, which show that these people can mourned for longer periods. Conclusions Paying the last tribute to a loved one is a mental health gesture that allows individuals to make amends and reconcile with life. Key messages The need arises to give timely attention to the psychological consequences due to the COVID-19 pandemic concerning grief

Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief

In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.