Caregiver Grief Research Articles

Predictive Role of Different Dimensions of Burden for Risk of Complicated Grief in Caregivers of Terminally Ill Patients

The aim of the study was to test whether high levels of caregiver burden, as other confirmed predictors, are associated with the risk of prolonged grief disorder in caregivers of terminally ill patients. A predictive study was carried out in order to test the hypothesis. A demographic schedule, the Prolonged Grief 12 (PG-12), the Toronto Alexithymia Scale, Hamilton Anxiety Rating Scale, Hamilton Depression Rating Scale, and Caregiver Burden Inventory were administered to 60 caregivers of 51 patients who were admitted in Hospice. In the regression analysis, difficulty in recognizing emotions, total burden, depression, and developmental burden dimension were significant predictors of PG-12 levels. Findings showed that feeling of deprivation of existential expectations represents the greater risk factor for the prolonged grief disorder, among the burden dimensions.

Respite Utilization and Responses to Loss Among Family Caregivers: Relationship Matters

Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children. The present study examined the longitudinal relationship between grief reactions in current spousal and adult-children caregivers (N = 72) and in-home respite utilization over 3 months. The Heartfelt Sadness and Longing subscale of the Marwit–Meuser Caregiver Grief Inventory Short Form (S. J. Marwit & T. M. Meuser, 2005) was used to assess the grief experiences of participants, and demonstrated good internal reliability among spousal and adult-child caregivers of older adults with a variety of cognitive and physical conditions. Although there was not an association between spouses’ grief subscale scores and later respite use, adult children were more likely to use respite after reporting higher levels of grief reactions. This study contributes to our ongoing understanding of differences between spousal and adult-children caregivers of impaired older adults and also lends further support for the reliability and construct validity of the Heartfelt Sadness and Longing subscale of the Marwit–Meuser Caregiver Grief Inventory.

Overcoming Grief: A Self-Help Guide Using Cognitive Behavioral Techniques

Journal of Palliative MedicineVol. 15, No. 11 Book and Media ReviewsFeature Editors: Juliet Jacobsen and Jane deLima ThomasOvercoming Grief: A Self-Help Guide Using Cognitive Behavioral TechniquesReviewed by: Sufana Alkhunaizi and Richard S. LeveneReviewed by: Sufana AlkhunaiziSearch for more papers by this author and Richard S. LeveneSearch for more papers by this authorPublished Online:1 Nov 2012https://doi.org/10.1089/jpm.2012.9547AboutSectionsView articleView Full TextPDF/EPUB ToolsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View article"Overcoming Grief: A Self-Help Guide Using Cognitive Behavioral Techniques." , 15(11), p. 1284FiguresReferencesRelatedDetailsCited byGrief Experience After Deaths: Comparison of Covid-19 and non-Covid-19 Causes27 April 2022 | Journal of Patient Experience, Vol. 9Attachment Style Dimensions Can Affect Prolonged Grief Risk in Caregivers of Terminally Ill Patients With Cancer25 August 2014 | American Journal of Hospice and Palliative Medicine®, Vol. 32, No. 8Predictive Role of Different Dimensions of Burden for Risk of Complicated Grief in Caregivers of Terminally Ill Patients20 May 2013 | American Journal of Hospice and Palliative Medicine®, Vol. 31, No. 2 Volume 15Issue 11Nov 2012 InformationCopyright 2012, Mary Ann Liebert, Inc.To cite this article:Reviewed by: Sufana Alkhunaizi and Richard S. Levene.Overcoming Grief: A Self-Help Guide Using Cognitive Behavioral Techniques.Journal of Palliative Medicine.Nov 2012.1284-1284.http://doi.org/10.1089/jpm.2012.9547Published in Volume: 15 Issue 11: November 1, 2012PDF download

The Birmingham Relationship Continuity Measure: the development and evaluation of a measure of the perceived continuity of spousal relationships in dementia

Qualitative research has suggested that spousal carers of someone with dementia differ in terms of whether they perceive their relationship with that person as continuous with the premorbid relationship or as radically different, and that a perception of continuity may be associated with more person-centered care and the experience of fewer of the negative emotions associated with caring. The aim of the study was to develop and evaluate a quantitative measure of the extent to which spousal carers perceive the relationship to be continuous. An initial pool of 42 questionnaire items was generated on the basis of the qualitative research about relationship continuity. These were completed by 51 spousal carers and item analysis was used to reduce the pool to 23 items. The retained items, comprising five subscales, were then administered to a second sample of 84 spousal carers, and the questionnaire's reliability, discriminative power, and validity were evaluated. The questionnaire showed good reliability: Cronbach's α for the full scale was 0.947, and test-retest reliability was 0.932. Ferguson's δ was 0.987, indicating good discriminative power. Evidence of construct validity was provided by predicted patterns of subscale correlations with the Closeness and Conflict Scale and the Marwit-Meuser Caregiver Grief Inventory. Initial psychometric evaluation of the measure was encouraging. The measure provides a quantitative means of investigating ideas from qualitative research about the role of relationship continuity in influencing how spousal carers provide care and how they react emotionally to their caring role.

Pre-death grief in Parkinson's caregivers: A pilot survey-based study

ObjectiveTo evaluate the evidence for pre-death grief in caregivers (CGs) of persons with Parkinson's disease (PD) and to compare non-motor PD symptoms (cognitive decline, depression, hallucinations) versus motor symptoms (fluctuations of mobility) for associations with CG grief reactions. BackgroundProlonged grief in response to loss has been associated with negative outcomes and decreased well-being in caregivers (i.e. spouse or adult child) of relatives with dementia. In Parkinson's disease (PD) the negative impact of providing care has been referred to as caregiver strain. Grief has not been explored in PD caregivers, and understanding grief may offer new insights for future intervention. MethodsVolunteer caregivers (n = 74) filled out the Marwit and Meuser Caregiver Grief Inventory (MM-CGI-SF) which measures 3 types (i.e. subscales) of grief: Personal Sacrifice and Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation. This scale also provided a total grief score. Volunteer caregivers also responded to self-reported UPDRS questions about the motor and non-motor symptoms of their PD relative (i.e. spouse or parent). T-tests were used to correlate CG subscales of grief with patient variables. A hierarchical regression analysis was used to determine the predictive contribution of motor and nonmotor symptoms to grief. ResultsGrief based on the total score was found in 17% of CGs. Grief was significantly higher in CG's whose relative had more severe symptoms. The type of grief experienced was similar across all three subscales. Hierarchical regression analysis revealed that nonmotor symptoms explained slightly more of the variance (14–23%) than motor symptoms (11–17%). ConclusionsThis study revealed that pre-death grief is a significant finding in PD caregivers. The severity of symptoms and the presence of nonmotor symptoms, especially cognitive decline, predict caregivers who are at greatest risk of prolonged grief; however it should be kept in mind that motor symptoms also contribute.

Grief Experiences of 3 Caregiving Wives of Veterans With Dementia

Three wives share their experiences of caregiving for husbands with dementia. The 3 husbands, aged 51, 71, and 84, developed dementia following years of devoted military service. To present lived experiences of caregiving wives', meanings attributed to caregiving are investigated, variations in caregiving and grieving experiences are explored, and therapeutic implications are offered. Through case study approach and with issues of caregiver grief considered, we introduce life course and ambiguous loss theoretical perspectives. Emergent qualitative themes and quantitative inventory ratings indicate significant differences in caregiver grief response depend on care-recipient age. Practice implications and directions for future care recipient, age-related research are presented.

Depression and grief in Spanish family caregivers of people with traumatic brain injury: The roles of social support and coping

Purpose: To examine the associations between social support, coping responses and depressive and grief symptoms in caregivers of people with traumatic brain injury (TBI).Methods and procedures: A cross-sectional study of Spanish primary caregivers of individuals with TBI. The study included 223 caregivers (72.2% female and 26.9% male).Main outcomes: Measures administered included the Family Needs Questionnaire, the Texas Revised Inventory of Grief, the Centre for Epidemiological Studies Depression Scale and the Responses to Stress Questionnaire.Results: A structural equation model indicated that secondary control coping (e.g. acceptance and positive thinking) was associated with less grief and depressive symptoms, whereas primary control coping (e.g. problem-solving and emotional expression) and disengagement were associated with more symptoms. Emotional and instrumental supports were directly associated with less depressive symptoms. In addition, emotional and professional supports were associated with symptoms through the use of primary control and disengagement coping.Conclusions: These results indicate that future interventions with families should improve social networks of emotional, instrumental and professional support, as well as help caregivers to develop adaptive coping strategies, such as acceptance and positive thinking.

Anticipatory Grief in New Family Caregivers of Persons With Mild Cognitive Impairment and Dementia

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms, and marital quality. The mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty in functioning, whereas MCI caregivers focused on themes of "missing the person" they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden, and higher depression levels each had independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief.

Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study

There is little research on complicated grief (CG) in family caregivers in palliative care. The aim of the study was to assess the levels of complicated grief and depression in family caregivers after the death of a relative with cancer, to identify their need for support, to compare the palliative team staff's risk assessment of the relatives' grief reaction with measured levels of CG and depression, and to assess the use of bereavement support. All 114 eligible family caregivers to deceased patients treated in a palliative care unit in the year 2006 were asked to participate in the study, and 87 (77%) accepted. The participants completed a postal questionnaire 2, 6, 13, and 18 months after the loss measuring complicated grief (Inventory of Complicated Grief, Revised), depression (Beck's Depression Inventory II), and their use of bereavement services. The palliative team staff completed a form 1 month post-loss with their clinical risk assessment of the family caregivers' levels of complicated grief and need for support. The prevalence of moderate to severe depression and CG was 15% and 40%, respectively, at 6 months post-loss. Professional risk assessment showed a sensitivity of 55% for CG and of 27% for depression and a specificity of 86% for depression and 63% for CG. The positive predictive value was 27% for depression and 21% for CG. Use of bereavement services was observed in 36% of the cases at 6 months after the loss. The proportion of bereaved with CG or depression at 6 months who had received bereavement services was 47% and 64%, respectively. The results suggest that a substantial number of family caregivers of diseased palliative care patients are at risk of developing CG and depression following their loss. While early identification of those at risk of developing CG could be helpful, the risk assessment of professionals may lack in precision. The results indicate that bereavement services could be utilized in a more targeted and perhaps more efficient manner. Guidelines for bereavement planning in palliative care are indicated.

Risks for Complicated Grief in Family Caregivers

Complicated Grief (CG) is a recently recognized disorder experienced by the bereaved and characterized by intense distress that interferes with functioning. Estimates indicate that about 20 % of bereaved individuals may develop CG. Family caregivers of those who are chronically ill may face unique risks for CG, such as pre-death stressors associated with caregiving. In this article, existing literature on CG in family caregivers is reviewed to identify pre-bereavement risk factors for the disorder. Implications for practice are also discussed, including both preventive interventions that could be instituted before the ill person's death and therapeutic techniques for treating CG after the death.

“Easing the Way” for Spouse Caregivers of Individuals with Dementia: A Pilot Feasibility Study of a Grief Intervention

A multicomponent intervention targeting grief symptoms in spouse caregivers of individuals with dementia was pilot tested in this feasibility study. Twenty spouse caregivers completed the study within the 5-month protocol. The five-component intervention, deduced from Meuser, Marwit, and Sanders' Dementia Caregiver Grief Model and tailored to participants' grief, mental health, and learning needs, included supportive grief counseling, emotional support, education, skill building, and referral to community resources. Significant changes were found from baseline to intervention completion for the measures of grief, depression, anxiety, positive states of mind, and self-efficacy, resulting in a moderate effect size of -0.43 for grief to a large effect size of -2.40 for anxiety. Increases in quality of life and decreases in grief persisted at the 8-month follow up for caregivers who continued to provide care in the home. The Easing the Way intervention protocol is a promising caregiver program that warrants further testing in a randomized controlled study.

Prolonged grief and depression in caregivers of patients in vegetative state

Primary objective: Several studies have shown that the symptoms of grief are different from symptoms of depression among bereaved family members. The present study is an attempt to replicate these findings among caregivers of patients in a vegetative state.Methods and procedures: Forty-five caregivers of 41 patients in vegetative or minimally conscious state in-hospital for long-term care. The questionnaire Prolonged Grief 12 (PG-12) assessed the presence of Prolonged Grief Disorder; the Depression Questionnaire (DQ) assessed the presence of a clinically significant depressive state.Main outcomes and results: Three conditions of psychiatric illness emerged: Prolonged Grief Disorder only (n = 9; 20%), depression only (n = 7; 15.5%) and Prolonged Grief Disorder together with depression (n = 7; 15.5%). There was no association (V = 0.203) between diagnosis of Prolonged Grief Disorder and the presence of a clinically significant depressive state. Caregiver's syndromal-level grief was associated with patients’ young age (p = 0.028) and with younger age of caregiver (p = 0.029). Caregiver's syndromal-level depression was associated with less time from the event (p = 0.003).Conclusions: Caregiver's grief symptoms are distinct from their depressive symptoms among family members and each disorder has distinct risk factors.

Proceso de duelo en familiares y cuidadores

This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur.

Determinants of complicated grief in caregivers who cared for terminal cancer patients

There is little research on determinants and the grief that caregivers experience after their relatives die of cancer. This study evaluated factors which influence complicated grief among caregivers who cared for patients who died of cancer in Taiwan. This prospective study recruited 668 caregivers who cared for terminally ill cancer patients in the hospice ward or who received shared-care consultation. Caregivers were interviewed on the telephone an average 8.9 months after the cancer patients passed away. The Inventory of Complicated Grief (ICG), modified for use in a Chinese population, was used to assess the grief status of caregivers. ICG >25 was defined as complicated grief. Our study found that female gender (odds ratio (OR), 2.27; 95% confidence interval (CI), 1.75-2.82), spouse relationship (OR, 1.20; 1.01-1.40), parents-children relationship (OR, 1.70; 1.11-2.31), lack of religious belief (OR, 1.47; 1.19-1.75), unavailable family support (OR, 1.42; 1.03-1.83), and history of mood co-morbidity (OR, 1.41; 1.02-1.83) were risk factors that would predispose towards complicated grief; whereas, longer duration of caring (months, OR, 0.79; 0.69-0.91), medical disease history in the carer (OR, 0.77; 0.57-0.99), and patients being cared for on the hospice ward (OR, 0.60; 0.44-0.77) were factors that would mitigate against complicated grief. These results suggest that clinical professionals who care for terminal cancer patients and their caregivers should pay particular attention to caregivers with these predisposing factors.

The role of grief in dementia caregiving.

The literature examining issues of caregiver stress, burden,or depression has focused on the stress-process model of caregiving, which posits that there are characteristics inherent in dementia and in the course of caregiving for a person with dementia that can cause stress in the caregiver's life. A more recent literature has emerged that argues that issues of loss and grief play a significant role ina caregiver's ability to cope with the stressors of caregiving. This article reviews the caregiver stress and grief literatures,and proposes a conceptual model of dementia caregiving that outlines pathways of stress and grief in dementia caregiving. Issues specific to caregiver grief are proposed for future research and intervention design.

The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimer's disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support.

Bereavement practices of Canadian cancer physicians

9550 Background: Bereavement follow-up is essential to quality end-of-life care, yet little is known about physician-family interaction after a patient dies. Our objectives were to determine current bereavement practices among medical oncologists (MO), radiation oncologists (RO) and palliative care specialists (PC); and to identify barriers and strategies to facilitate bereavement care. Methods: We surveyed all Canadian MO, RO and PC via their respective national organizations between 03–05/2007 using an anonymous electronic and post mail survey. Frequencies of bereavement practices were assessed using a five-point Likert scale; results were described using summary statistics and Fisher’s exact test. Logistic regression was used to determine predictors of bereavement practices. Results: Response rate was 71% (550/771). Median age of the respondents was 48 years, 40% were female, 55% worked in an academic setting, 75% spent over half of their time in patient care. Median number of patient deaths per month was 3 MO, 2 RO, 8 PC. Table 1 shows frequency of bereavement practices. Only 9% (95%CI 6.6–11.5%; 48/528) of respondents felt that physicians had a responsibility to send a condolence card. Stepwise regression showed that: lack of time (OR=1.77, p=0.02) and lack of responsibility (OR=3.79, p=0.03) rather than anxiety or guilt are significant barriers; and being female (OR=2.27, p=0.0009), palliative care specialty (OR=8.33, p<0.0001), access to a bereavement care program (OR=1.95, p=0.008) and working in an academic setting (OR=1.77, p=0.02) were significant predictors of more frequent bereavement practices. Conclusions: Physicians do not routinely provide bereavement follow-up due to lack of time and perceived responsibility. Interdisciplinary bereavement programs and defining physician role may facilitate bereavement follow-up. Further research is needed to determine the relationship between physician bereavement practice and caregiver grief reactions or physician burnout. Frequency of bereavement practices according to specialty Bereavement practice MO% (95% CI); n RO% (95% CI); n PC% (95% CI); n p-value Always/usually send condolence card 18.2 (12.7–23.7); 34/187 7.1 (3.4–10.9); 13/182 29.5 (22.3–36.7); 46/156 <0.0001 Always/usually telephone family 21.3 (15.4–27.1); 40/188 9.3 (5.1–13.5); 17/183 34.8 (27.4–42.2); 55/158 <0.0001 Always/usually initiate family meeting 6.4 (2.9–9.9); 12/187 3.3 (0.7–5.9); 6/181 13.4 (8.1–18.7); 21/157 0.002 Always/usually attend funeral service 0.5 (−0.5–1.6); 1/187 1.1 (−0.4–2.6); 2/183 3.8 (0.8–6.8); 6/158 0.08 Always/usually refer family to bereavement support program 6.5 (2.9–9.9); 12/186 3.9 (1.1- 6.7); 7/180 19.1 (13.0–25.3); 30/157 <0.0001 No significant financial relationships to disclose.

Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis.

Feelings of loss and grief are frequent companions for current Alzheimer's family caregivers. Increased acknowledgment and understanding of caregiver grief among researchers has led to more comprehensive explorations of the multifaceted nature of caregiver grief and loss. Absent from the literature, however, is an exploration of anticipatory grief as an actual barrier to the task of caregiving. Through an analysis of 353 open-ended survey responses, the present article explores links between anticipatory grief, ambiguous loss, and principal barriers that family members face as dementia caregivers across the state of Indiana. By drawing parallels between caregiver responses and the Marwit-Meuser Caregiver Grief Inventory subscales, this article illustrates that the fundamental barrier experienced by current Alzheimer's caregivers appears to be a combination of anticipatory grief and ambiguous loss rather than hands-on care issues. The implications of this finding for future caregiver research and interventions are discussed.

Grief and Personal Growth Experience of Spouses and Adult-Child Caregivers of Individuals With Alzheimer's Disease and Related Dementias

The purpose of this study was to describe the grief and personal growth experience of spouses and adult children of individuals with Alzheimer's disease and related dementias and the factors contributing to these experiences. We used a modification of the Marwit-Meuser-Sanders Caregiver Grief model to examine the factors that contribute to grief and personal growth. We used chi-square tests, t tests, multivariate analyses of variance, correlations, and hierarchical regression analyses in a cross-sectional analysis of 201 spouses and adult children caregivers at various stages of the disease trajectory. Grief increased as the severity of the disease increased. When the spouse with Alzheimer's disease lived out of the home, spouse caregivers experienced more sadness and longing, worry and isolation, and personal sacrifice burden than did adult children caregivers. Different factors influence grief and personal growth for caregivers of individuals with Alzheimer's disease. The majority of caregivers experienced personal growth, with more growth experienced by adult children. Health care providers should consider using the Marwit and Meuser Caregiver Grief Inventory to screen for high levels of grief in caregivers of individuals with Alzheimer's disease. Supportive services targeted for those with high levels of grief are suggested.

Caregiver Grief in End-Stage Dementia

Caregivers of individuals with end-stage dementia experience increased grief reactions; however, their grief is too often overlooked by health professionals. Regardless of their practice setting, social workers must assess and intervene with caregivers dealing with grief. This article provides information on the Marwit and Meuser Caregiver Grief Inventory (MM-CGI) that was designed to measure the grief of caregivers of individuals with progressive memory loss. Through the use of case examples, key areas of assessment are highlighted, as well as initial areas for helping caregivers cope and heal from their experiences of grief.