Pre-death Grief Research Articles

Telephone-Based Acceptance and Commitment Therapy for Caregivers of Persons with Dementia: Results of a Randomized Controlled Trial

ABSTRACT Objectives Family caregivers of persons with dementia (PwD) experience high levels of distress. We used a randomized-controlled trial to investigate the effects of telephone-based acceptance and commitment therapy (tbACT) for family caregivers. Methods Caregivers were randomly allocated to an intervention group (tbACT, n = 41) or an untreated control group (CG, n = 40). The intervention consisted of eight weekly sessions of tbACT. Depression and anxiety (primary outcomes), physical symptoms, pre-death grief, care-related thoughts, acceptance (secondary outcomes), quality of life, coping and well-being (well-being/coping outcomes) were assessed pre- and post-assessment. A 6-month follow-up was conducted. Results Compared to CG participants, tbACT participants had at post-assessment significantly lower depressive symptoms; fewer physical symptoms (rheumatic pain); better physical health; more resource utilization (coping with daily hassles, social support); better coping with the care situation and better emotional well-being. During the six-month follow-up, tbACT participants showed less pre-death grief, fewer physical symptoms, and more utilization of resources related to coping with daily hassles. Conclusions tbACT is a feasible and promising psychotherapeutic intervention for family caregivers of PwD. Because of small sample size our results are preliminary. Clinical Implications Most of the effects of tbACT were not maintained 6 months after the intervention, suggesting that booster sessions may be helpful.

The role of the social environment on dementia caregivers' pre-death grief: A mixed- methods systematic review.

This systematic review examined the role of social environment in pre-death grief experiences of dementia caregivers. Ninety-three Chinese and English articles were included from a comprehensive search of empirical studies using nine databases. Six social environment domains were generated: the person with dementia, dyadic relationship, family members and the wider community, health and social care services, place of care, and social-cultural contexts. A complex interplay between caregivers and their social environments that aggravate and attenuate pre-death grief experiences is evident. Research has focused mainly on the effects of people with dementia and dyadic relationships and has paid modest attention to the effects of family, relatives, and health and social care services. Caregivers' experiences with their friends, fellow caregivers, the wider community, and social-cultural norms are influential but understudied. Future research could adopt a systems thinking approach with sociological perspectives to generate a comprehensive and nuanced understanding of pre-death grief experiences.

The mediating role of coping strategies between caregiving burden and pre-death grief among Chinese adult-child caregivers of dementia patients.

The objective of this study was to examine the relationship between caregiving burden and pre-death grief, with a specific focus on adult-child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation. A convenience sample of 320 adult-child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit-Meuser Caregiver Grief Inventory-Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist-Revised. Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre-death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre-death grief, but in the male group, this mediating effect did not exist. The study found evidence supporting the link between caregiving burden and pre-death grief among adult-child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre-death grief. These associations only existed in the female group. This paper presented the importance of active coping skills in the dementia caregiving process. The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre-death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre-death grief. Community-based and personal care support services should be promoted to alleviate their caregiving burden. We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: 'No patient or public involvement'.

Pre-death grief: support for families facing bereavement

Pre-death grief: support for families facing bereavement

A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias - CORRIGENDUM.

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A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias.

Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. Pre-post interventional mixed methods study. Online videoconference group program for carers across the UK held in 2021. Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.

Risk, Resilience, and the Two-Track Model of Dementia Grief Among Spouses of People Living With Cognitive Decline.

Pre-death grief in the context of dementia caregiving is a significant risk factor for depression, burden, anxiety, and adjustment difficulties. The Two-Track Model of Dementia Grief (TTM-DG) provides a bifocal perspective addressing the nature of the emotional attachment to a loved one living with cognitive impairment, along with a medico-psychiatric perspective associated with stress, trauma, and change in life. The aims of the present study were to empirically validate the components of the model as to identify salutary and risk factors for maladaptive grief responses. Participants were 62 spouses of people living with cognitive impairment, and a control group of 32 spouses. All completed a battery of self-report questionnaires. Structural Equation Modeling yielded six variables consistent with the TTM-DG: partner's behavioral disorders; caregiver's burden; social support; physical health; attachment anxiety; and dementia grief as an outcome measure. Additional findings addressed participants at risk for grief difficulties. The findings provide empirical support for the utility of the TTM-DG in the identification of risk factors associated with maladaptive responses and pre-death grief following a spousal cognitive decline. The TTM-DG can assist in the formulation of evidence-based evaluations and interventions to assist spouses caring for their loved ones living with dementia.

Pre-death grief in patients requiring hematopoietic stem cell transplantation

This study aimed to understand the pre-death grief experienced by patients requiring Hematopoietic Stem Cell Transplantation. The sample consisted of nine adult patients. A semi-structured interview was applied individually, and audio was recorded and analyzed qualitatively using thematic analysis. The results were organized into two categories, namely: Pre-death grief: Receiving the diagnosis, and Pre-death adjustment: Adaptation to the new condition. It was observed that there was a shock and a need to deal with the losses stemming from a serious illness, but then there was openness to reflection, and from this a new way of being and living emerged.

Resolution of a Parent's Disease: Attachment and Well-Being in Offspring of Parents Diagnosed with Parkinson's Disease.

Parkinson's disease (PD) is one of the most common chronic, progressive neurodegenerative diseases, with well-developed research focusing on the caregiver-spouse showing low well-being along with predeath grief and feelings of loss among caregivers. However, offspring of a parent diagnosed with PD may also suffer predeath grief and loss even if they are not their parent's main caregiver. Yet, this research is not well developed. The objective of the current study was to examine offspring's coming to terms with their parent's PD and the well-being of the offspring, within the conceptual framework of attachment theory. Seventy-one Israeli adult children of parents with PD participated in the study and completed self-report questionnaires assessing their resolution of their parent's PD, attachment, well-being, and the severity of the PD symptoms. Results showed that attachment anxiety negatively associated with higher resolution of the parent's disease, beyond the effect of the PD symptoms' severity. In addition, resolution of the parent's disease was positively associated with the offspring's well-being. Resolution of a parent's PD is highly challenging for offspring with attachment anxiety. Therefore, targeting these individuals within the offspring of parents diagnosed with PD may assist them with coping during this challenging period. This may be especially impactful, as research shows that those offspring who resolve their parent's PD also have higher well-being.

Family caregiver grief and post-loss adjustment: A longitudinal cohort study.

In order to better understand the different grieving trajectories of the family caregivers (FCs), this study aims to examine the evolution of prolonged grief disorder (PGD) symptoms and the predictive role of the caregiving-related factors in the FCs' grieving trajectory from pre- to post-death. A prospective cohort study was carried out with advanced cancer FCs evaluated before death (T1) and 6-12 months post-loss (T2). Participants in T1 (n = 156) were mostly female, adult child, or spouse of the care recipient, with a mean age of 51.78 (SD = 13.29). At T2, 87 FCs participated in the survey. PGD prevalence was higher pre-death (38.6%) than in bereavement (33.7%). Of those who met the PGD criteria before death, most also met these criteria after death (n = 26, 61.9%). Psychological distress and caregiver burden were highly correlated with pre-death grief, which in turn played a critical role in mediating the link between psychological distress and bereavement outcome. Great emotional closeness in the relationship was predictive of PGD symptoms persistence. In contrast, the long-term consequences of caregiver burden were not confirmed. This study provides evidence for the diversity of individual FC responses and the complex pattern of interactions between caregiving-related factors, relationship quality, and PGD symptoms evolution from pre- to post-death.

Validity and Reliability Study of Turkish Forms of the Quality of Relationships Inventory-Bereavement Version and the Bereavement Guilt Scale.

The aim of this study was to investigate the psychometric properties of the Turkish forms (TR) of the Quality of Relationships Inventory-Bereavement Version (QRI-B) and the Bereavement Guilt Scale (BGS). The sample consisted of 447 bereaved adults who lost a loved one due to death at least 6 months ago and within the past 5 years. Participants completed the QRI-B, BGS, Beck Depression Inventory (BDI), Prolonged Grief Inventory (PG-13), The Grief and Meaning Reconstruction Inventory (GMRI), Rosenberg Self-Esteem Scale (RSS) ve Life Satisfaction Scale (LSS). Results of the explanatory factor analysis showed a good fit between the BGS-TR and the original form of BGS consisting of a 5-factor and 14 items. Besides, the QRI-B-TR showed a similar fit with the original QRI-B consisting of a 2-factor and 13 items, except for item 1. The QRI-B-TR and BGS-TR had positive correlations with the PGI and BDI, and negative correlations with the RSS, LSS, and GMRI-growth subscale. These correlations supported the convergent validity. After controlling for demographic variables, the subscales of the QRI-B-TR and BGS-TR explained 49% of the variance in prolonged grief symptoms. Internal consistency values of the total scale and the subscales for both instruments ranged between 0.70 and 0.94. The findings of the study demonstrated that the Turkish versions of the QRI-B-TR and BGS-TR were reliable and valid psychometric tools. Additionally, it was shown that quality of pre-death relation and grief related guilt were strong predictors of prolonged grief symptoms.

Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support.

Background: The intensity of predeath grief is associated with postdeath grief in family caregivers of patients in palliative care. Different factors during caregiving may influence this association.Objective: To examine (1) the intensity of grief in relation to preparedness for caregiving, caregiver burden, and social support, and (2) if these variables moderate associations between predeath and postdeath grief.Methods: This prospective correlational study used unpaired t-test to compare grief in relation to preparedness for caregiving, caregiver burden, and social support. Hierarchical multiple linear regression analysis investigated moderation effects. Family caregivers were recruited from 10 palliative homecare facilities. The Anticipatory Grief Scale, Texas Revised Inventory of Grief, Preparedness for Caregiving Scale, Caregiver Burden Scale, and Multidimensional Scale of Perceived Social Support were used. Ethical approval for the study was granted by the Regional Ethical Review Board in Stockholm, Sweden.Results: In total, 128 family caregivers participated. Those with high caregiver burden scored significantly higher intensity of predeath but not postdeath grief. Caregiver burden and social support moderated the association between intensity of predeath grief and postdeath grief. There was a stronger association between predeath and postdeath grief among caregivers with low caregiver burden or low social support. Preparedness for caregiving had no moderating effect.Discussion: Attention should be directed to caregiver burden and social support during family caregiving, as these variables seem to be significant for the intensity of grief before and after the patient's death. Acknowledging predeath grief during caregiving and recognizing pre- and postdeath grief as parts of the same process are of importance in clinical practice and when designing supportive interventions.

Family Caregiver’s Anticipatory Grief—Clinical Interview: Psychometric Characteristics and Scoring Pattern

This study describes the development and the preliminary validation of the Family Caregiver Anticipatory Grief Clinical Interview (FcAG-CI). This instrument, conceptually based in Adult Attachment Theory, evaluates Anticipatory Grief response patterns of cancer family caregivers; semistructured interviews were conducted in a sample of family caregivers in palliative care ( n = 72, mostly women, adult children, or spouses, mean age of 52.37) and coded according to the rating guidelines. FcAG-CI, composed of eight domains, shows convergent and concurrent validity with self-reported predeath prolonged grief disorder symptoms as well as divergent validity with the Zarit Burden Interview. The tests for reliability suggest that it has reasonable consistency (Cronbach’s α = .750) and very good interrater reliability. Two factors were identified, corresponding to the two major sources of distress: traumatic and relational aspects of end-of-life caregiving. This instrument, allows the categorization of respondents in four different profiles (Avoidant, Adjusted, Traumatic, and Intense Anticipatory Grief), with clear implications for clinical practice.

Promoting preparedness and reducing pre-death grief.

Promoting preparedness and reducing pre-death grief.

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

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. Cross-sectional. Caregivers of people with dementia living at home or in a care home. 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%). 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"). 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." 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).

Duelo pre-muerte en cuidadores de enfermos de Alzheimer. Validación de una guía

IntroductionThe pre-death grief in family caregivers (FC) of people with Alzheimer's disease has not been sufficiently treated in studies on this group. Thus, the design and validation of informative printed materials is relevant due to its important implications for the well-being of these FCs and their training in the proper performance of their role. The objective was to design and validate a booklet aimed at informing FCs about this topic, as well as the procedure for its dissemination and use. Materials and methodsAfter a review of the literature, a booklet and a questionnaire were designed to determine the acceptability and dissemination procedure and use of the booklet by 73 professionals working with FCs. With the suggestions made, modifications were made to both the content and format of the booklet. ResultsThe questionnaire used presented adequate content validity and reliability in its different sections (α=0.793 and α=0.888). The level of acceptability of the booklet was high by professionals (83.85% of total score). Its dissemination was especially valued in the initial stages of the disease, and its use in therapeutic and supportive group contexts, with professional advice. ConclusionsThe study made it possible to verify the relevance and acceptability of a booklet as a training resource for FCs about pre-death grief, making it a useful tool for professionals that work in this area of great relevance.

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers’ grief, quality of life and general health in relation to non-caregivers. Aim: We aimed to determine how caregivers’ grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months). Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. Results: There were significant differences between the caregivers’ and comparisons’ grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death. Conclusion: It took 9–10 months for the caregivers’ grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

A brief measure of predeath grief in dementia caregivers: the Caregiver Grief Questionnaire.

The study of predeath grief is hampered by measures that are often lengthy and not clearly differentiated from other caregiving outcomes, most notably burden. We aimed to validate a new 11-item Caregiver Grief Questionnaire (CGQ) assessing two dimensions of predeath grief, namely relational deprivation and emotional pain. Cross-sectional survey. Community and psychogeriatric clinics. 173 Alzheimer (AD) caregivers who cared for relatives with different degrees of severity (63 mild, 60 moderate, and 50 severe). Besides the CGQ, measures of caregiver burden and depressive symptoms, and care-recipients' neuropsychiatric symptoms and functional impairment were assessed. Confirmatory factor analysis supported the hypothesized 2-factor over the 1-factor model, and both subscales were only moderately correlated with burden. Two-week test-retest reliabilities were excellent. Caregivers for mild AD reported less grief than those caring for more severe relatives. Z tests revealed significantly different correlational patterns for the two dimensions, with emotional pain more related to global burden and depressive symptoms, and relational deprivation more related to care-recipients' functional impairment. Both dimensions were mildly correlated with neuropsychiatric symptoms (especially disruptive behaviors and psychotic symptoms) of the care-recipient. Results supported the reliability and validity of the two-dimensional measure of predeath grief. As a brief measure, it can be readily added to research instruments to facilitate study of this important phenomenon along with other caregiving outcomes.

Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review.

The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden. MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief. Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates. The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.

Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis

BackgroundCaregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. While such phenomenon of pre‐death grief (PDG) has been increasingly described, we are uncertain how it can be distinct from the well‐studied construct of caregiver burden.ObjectiveTo determine whether there are differences in the risk factors of PDG and caregiver burden to aid in our understanding of the relationship between the two constructs.MethodsSpouses or children of community‐dwelling PWD were consecutively sampled from two tertiary hospitals. They completed questionnaires containing a PDG scale, a caregiver burden scale, and information related to the caregiver and PWD. Risk factors of PDG and caregiver burden were identified using multivariate regression, within which PDG and caregiver burden scores were jointly included as two separate dependent variables.ResultsWe recruited 394 caregivers with a mean age of 53.0 years (SD 10.7), majority were Chinese (86.6%), children caregivers (86.3%), and primary caregivers (70.8%). In the regression analyses, we identified three risk factors which were shared by both PDG and caregiver burden (later stage of dementia, behavioral problems in PWD, and primary caregiving role) and three other risk factors which were unique to PDG alone (younger age of PWD, lower educational attainment of caregivers, and spousal caregiver).ConclusionsThe different risk factor profiles evidence a distinction between PDG and caregiver burden. They may possibly be distilled into a framework to direct our approach to PDG interventions, which may include using caregiver burden as an opportunity to initiate conversations on grief, exploring the various aspects of losses and encouraging adaptive coping.