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

AIMS: 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. METHODS: 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: 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. CONCLUSION: 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. IMPLICATIONS: This paper presented the importance of active coping skills in the dementia caregiving process. IMPACT: 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. REPORTING METHOD: 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'.

Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study.

BACKGROUND: Given the dramatic projected increase in Alzheimer's disease globally and the increased risk of morbidity and mortality for family caregivers of these patients, there is an urgent need to provide more targeted, timely resources to support the health and well-being of these informal caregivers. Few studies have investigated the barriers to health and well-being and potential strategies to facilitate better self-care from the unique perspective of the caregivers themselves. PURPOSE: This qualitative study aimed to identify barriers and facilitators to health and well-being for informal caregivers of family members with Alzheimer's. METHOD: We conducted semi-structured interviews with eight informal caregivers, including daughters, wives, and one husband, ages 32 to 83. Using Reflexive Thematic Analysis, we identified three main themes and subthemes across caregivers' experiences. FINDINGS: We found that caregivers (1) prioritized mental and social well-being over physical health or health behaviors; (2) characterized the subjective burden of caregiving as a "mantle of responsibility" that could not easily be shed due to the complex subjective burden of loss, grief, guilt, resentment, isolation, loneliness, and lack of agency; (3) sought to be recognized as "additional patients", instead of being viewed as invisible patients, with support services tailored to their life stage and challenges. CONCLUSIONS: The findings suggest that the subjective burden of strain experienced by family caregivers of Alzheimer's patients has a profound impact on their health and well-being, even more so than the objective burden of strain that is the result of their day-to-day caregiving activities.

Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review.

OBJECTIVES: Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia. METHODS: MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. RESULTS: 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers - the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. CONCLUSION: Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments.

Explaining caregiver burden in a large sample of UK dementia caregivers: The role of contextual factors, behavioural problems, psychological resilience, and anticipatory grief.

OBJECTIVES: Dementia caregiver burden is a significant public health concern, affecting both the wellbeing of caregivers and their care-recipients. This study investigated a range of variables associated with caregiver burden in a large sample of UK dementia caregivers. Clinical characteristics and novel psychological constructs were used - including anticipatory grief and psychological resilience. Anticipatory grief refers to the process of experiencing loss prior to the death of a significant person. METHOD: Caregivers of persons with dementia (N = 530) completed a survey obtaining the Zarit-Burden Interview (ZBI-SF) and other psychological and demographic/caregiving-related factors. RESULTS: Findings illustrate that 71% of the sample experienced high levels of caregiver burden and around 95% met the criteria for clinically significant levels of burden. A regression model explained 49% of the variance in subjective caregiver burden; contextual factors (care-recipients living situation, frequency of caregiving), behavioural challenges in the care-recipient (memory-related problem behaviours), caregiver psychological resilience and caregiver anticipatory grief (heartfelt long & sadness, worry & felt isolation) were all significant variables. Caregiver anticipatory grief, followed by psychological resilience, had the strongest association with burden. CONCLUSION: Caregiver anticipatory grief and psychological resilience, have a significant interaction with the clinical presentation of the dementia sufferer in explaining subjective caregiver burden. More grief and resilience-focused interventions targeting both the practical and emotional challenges are imperative to reduce burden and thus to ensure caregiver wellbeing.

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

OBJECTIVES: 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. DESIGN: Cross-sectional. SETTING: Caregivers of people with dementia living at home or in a care home. PARTICIPANTS: 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%). MEASUREMENTS: 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"). RESULTS: 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." CONCLUSION: 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).

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

BACKGROUND AND AIM: 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. METHOD: 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. RESULTS: 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. CONCLUSION: 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.

BACKGROUND: Caregivers 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. OBJECTIVE: To 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. METHODS: Spouses 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. RESULTS: We 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). CONCLUSIONS: The 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.

Welcoming Death: Exploring Pre-Death Grief Experiences of Caregivers of Older Adults with Dementia.

The death of an older adult with dementia often has an uncertain dying trajectory and has been referred to as "the long goodbye." Researchers have found both positive and negative outcomes of pre-death grief for caregivers of individuals with chronic illnesses. This qualitative study explored the end-of-life experiences for 36 bereaved family caregivers of older adults with dementia; focusing on understanding their experiences with pre-death grief. These caregivers shared experiences with the phenomenon of "welcoming death" and findings highlighted the primary reasons they anticipated, accepted, or wished for the death of their family member with dementia. With the overarching goal of improving bereavement outcomes and reducing feeling of guilt, inclusion of pre-death grief support services throughout the caregiving process are recommended.

Detecting pre-death grief in family caregivers of persons with dementia: measurement equivalence of the Mandarin-Chinese version of Marwit-Meuser caregiver grief inventory.

BACKGROUND: Pre-death grief (PDG) is a key challenge faced by caregivers of persons with dementia (PWD). Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically-developed scales that detect PDG. However, they have not had a Mandarin-Chinese version even though Chinese-speaking populations have among the largest number of PWD. We produced a Mandarin-Chinese version of MM-CGI and evaluated whether it had equivalent scores and similar psychometric properties to the English version. METHODS: We produced the Chinese MM-CGI through the methods of forward-backward translation and cognitive debriefing. Then, we recruited family caregivers of PWD (n = 394) to complete either the Chinese (n = 103) or English (n = 291) version. The two versions were compared in their score-difference (adjusting for potential confounders using multiple linear regression), internal-consistency reliability (using Cronbach's α) and test-retest reliability (using intraclass correlation-coefficient), known-group validity (based on the relationship with the PWD and stage of dementia) and construct validity (using Spearman's correlation-coefficient). RESULTS: The two versions showed similar mean scores, with the adjusted score-difference of 1.2 (90% CI -5.6 to 7.9) for MM-CGI and - 0.4 (90% CI -2.9 to 2.1) for MM-CGI-SF. The 90% CI for adjusted score-difference fell within predefined equivalence-margin (±8 for MM-CGI and ± 3 for MM-CGI-SF) and indicated equivalence of the scores. The two versions also demonstrated similar characteristics in reliability and validity. CONCLUSIONS: The Chinese MM-CGI opens the way for PDG assessment and intervention among Chinese-speaking caregivers. Establishing its measurement equivalence with the English version paves the way for cross-cultural research on PDG in dementia caregiving.

Dementia grief: A theoretical model of a unique grief experience.

Previous literature reveals a high prevalence of grief in dementia caregivers before physical death of the person with dementia that is associated with stress, burden, and depression. To date, theoretical models and therapeutic interventions with grief in caregivers have not adequately considered the grief process, but instead have focused on grief as a symptom that manifests within the process of caregiving. The Dementia Grief Model explicates the unique process of pre-death grief in dementia caregivers. In this paper we introduce the Dementia Grief Model, describe the unique characteristics of dementia grief, and present the psychological states associated with the process of dementia grief. The model explicates an iterative grief process involving three states- separation, liminality, and re-emergence-each with a dynamic mechanism that facilitates or hinders movement through the dementia grief process. Finally, we offer potential applied research questions informed by the model.

Applicability of the pre-death grief concept to dementia family caregivers in Asia.

OBJECTIVE: Pre-death grief is prevalent among dementia family caregivers. When unaddressed, it produces adverse outcomes. With its research primarily conducted in Caucasians, its applicability to non-Caucasians is uncertain. We explore the existence and the characteristics of pre-death grief in a multi-ethnic Asian population using an established pre-death grief scale-Marwit-Meuser Caregiver Grief Inventory (MM-CGI). METHODS: Seventy-two dementia family caregivers were recruited from a tertiary hospital. Existence of pre-death grief was shown by its measurability on MM-CGI, together with good internal consistency reliability and construct validity. Characteristics of pre-death grief were explored through multivariate linear regression of MM-CGI and by comparing MM-CGI scores with those from the original US study using one-sample T-test. RESULTS: In the Asian context, pre-death grief was measurable in a reliable and valid manner. Risk factors of pre-death grief included caring for patients with severe dementia, spousal relationship and secondary or below education. Influence of culture was palpable-Asians had more worries and felt isolation, and certain ethnicity showed more pre-death grief. CONCLUSIONS: Pre-death grief is applicable even to the non-Caucasian population. It bears much similarity to that in Caucasians. Yet, its expression is modified by culture. Clinicians working with non-Caucasian populations need to be sensitive to its presence and to the influence of culture on its expression. © 2015 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.

Pre-death grief in the context of dementia caregiving: a concept analysis.

AIM: The aim of this study was to report on an analysis of the concept of pre-death grief in the context of dementia family caregiving. BACKGROUND: Research indicates that witnessing changes and losses in a family member with dementia can lead to pre-death grief. Pre-death grief is associated with depression, burden and maladaptive caregiver coping. However, the concept lacks a refined definition and blurs with similar constructs. DESIGN: Concept analysis using a hybrid of Penrod and Hupcey's principle-based concept analysis and Chin and Kramer's conceptualization of meaning. DATA SOURCES: 49 peer-reviewed papers (2000-2013) that addressed pre-death grief in dementia family caregivers were used for the principle-based analysis; two examples from the popular media were used for the analysis of conceptual meaning. METHODS: The scientific papers were examined for epistemological, linguistic, pragmatic and logical clarity. The two examples from the popular media were explored for conceptual meaning. RESULTS: Pre-death grief in the context of dementia caregiving is a meaningful concept found in the popular media. From a scholarly point of view, it is an emerging concept. A definition is offered to advance conceptual clarity. Discussion focuses on advancing the concept into a situation-specific middle-range theory of pre-death grief in family caregiving. CONCLUSIONS: The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains.