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As Alzheimer’s disease and related dementias (ADRD) progress, family caregivers may experience grief before the death of the person living with ADRD. This type of grief is commonly referred to as anticipatory grief, which can contribute to increased psychological distress (i.e., depressive and anxiety symptoms) and potentially affect caregivers’ long-term mental health. This scoping review aimed to synthesize evidence on risk and resilience factors associated with anticipatory grief, its relationship with caregiver mental health, and psychosocial interventions targeting anticipatory grief among caregivers of people living with ADRD.
Methods
Guided by the Stress Process Model and the Grief-Stress Model, a literature search was conducted in PubMed, CINAHL, Embase, Scopus, Web of Science, and PsycINFO in May 2025.
Results
Thirty articles met the inclusion criteria. Caregiver characteristics, such as being a spousal caregiver and greater caregiving involvement, were associated with higher levels of anticipatory grief. Caregiving-related stressors and relationship changes across the ADRD trajectory were consistently linked to anticipatory grief across studies, while psychosocial resources, such as adaptive coping and social support, were generally associated with lower levels of anticipatory grief. Anticipatory grief was consistently associated with depressive symptoms. Intervention studies were limited, but those focused on acceptance and preparedness showed potential for reducing anticipatory grief.
Significance of results
Anticipatory grief represents an important dimension of caregiver mental health that reflects ongoing loss. Conceptualizing anticipatory grief within caregiving stress frameworks highlights how vulnerability to distress may emerge from the interplay between caregiving stressors, relationship changes, and psychosocial resources. This conceptual framing may inform future research and palliative care interventions to support the well-being of family caregivers across the dementia trajectory.
Palliative care seeks to enhance the quality of life for individuals with serious illnesses and their families by addressing physical, emotional, and psychological needs. This phenomenological study examines the lived experiences of 8 caregivers in palliative care settings in Türkiye, focusing on the challenges they face, the coping mechanisms they employ, and their reflections on the caregiving role. Special emphasis is given to both psychological and somatic signs of stress, along with the possible advantages of body-oriented resilience techniques.
Methods
Using a phenomenological qualitative design, semi-structured interviews were conducted with 8 caregivers providing care to relatives in a hospital-based palliative care unit. Data were collected between February and April 2023 and analyzed through conventional content analysis.
Results
Four central themes emerged from inductive coding: harmony in healing, navigating difficulties, resilience in palliative care, and reflections on the finite. The findings reveal a dual reality: palliative caregivers derive meaning and satisfaction from compassionate connections, high-quality clinical care, and peer support, yet they also endure significant burdens, including emotional strain, physical exhaustion, disrupted daily routines, and shifting relational dynamics. Anticipatory grief and chronic stress responses were prevalent, frequently manifesting in both psychological and somatic forms (e.g., sleep disturbances, muscle tension, and autonomic arousal). Despite these challenges, palliative caregivers employed spiritual beliefs, peer interactions, and self-care routines as resilience strategies.
Significance of results
The mind–body challenges identified in the study emphasize the need for interventions that focus on self-regulation and resilience, including body-oriented approaches that strengthen internal resources, regulate stress responses, and encourage adaptability. Incorporating such approaches into group-based settings may improve mutual support and enhance both individual and relational well-being. The study highlights the importance of comprehensive, caregiver-centered support systems to reduce burden and improve the overall quality of palliative care.
This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer’s and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed.
Methods
The sample consists of 129 participants who care for a family member with Alzheimer’s and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out.
Results
The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden.
Significance of results
The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.
Female partners of cancer patients are at high risk for psychological distress. However, the majority of studies have focused on measurement of female partners' psychological distress during diagnosis and early treatment. There is a gap in the literature with regard to qualitative studies that examine the experiences of female partners of spouses with cancer during the transition to end-of-life care. The purpose of this qualitative study was to explore the meaning of being in transition to end-of-life care among female partners of spouses with cancer.
Methods:
An interpretive phenomenological approach based on Gadamer's (1960/1975) philosophy was used to gain a deeper understanding of the phenomenon of end-of-life transition. Eight female partners from two in-patient hospices and a community-based palliative care service were interviewed using a semistructured approach.
Results:
Three major themes and associated subthemes were identified that outlined female partners' experiences. One major theme, Meaning of Our Lives, included the subthemes Our Relationship, Significance of His Life, and Searching for Understanding. In another theme, Dying with Cancer, partners undertook the Burden of Caring, experienced an Uncertain Path and were Looking for Hope. In the last theme, Glimpses of the Future, participants Faced Tomorrow and confirmed their Capacity to Survive.
Significance of results:
The results centered on three major concepts: meaning making, anticipatory mourning, and hope. Although meaning making has been identified as a fundamental way in which bereaved individuals cope with loss, results of this study suggested that female partners made meaning of their situations before their spouses' deaths. Participants also spontaneously described aspects of anticipatory mourning, thus, validating a concept that has been widely accepted despite limited research. Another finding was that participants shouldered the responsibility of adjusting spouses' hopes in order to help them to cope. Implications for practice and research are drawn from these findings.
The current literature on caregiving and bereavement indicates that the relationship between these two common life events is complex and needs to be further studied in order to gain a more comprehensive understanding of their interaction.
Methods:
In the current project, 50 spouses of hospice patients with end-stage lung cancer or dementia were assessed while caregiving and at an average of 4 months after the death on a variety of measures, including caregiving stressors, appraisals, social resources, and well-being. A stress process model was utilized in order to examine which preloss factors were associated with postloss depression, life satisfaction, and grief.
Results:
Our results indicated that patient diagnosis (cancer or dementia) and caregiver appraisals (stressfulness of functional impairment and positive aspects of caregiving) were not predictors on any of our well-being outcomes. However, fewer months caregiving was a significant predictor of both higher depression and grief postloss. Additionally, lower levels of social activities, smaller social networks, and lower satisfaction with social support were significantly associated with higher postloss depression.
Significance of results:
Results support both the resource depletion and anticipatory grief hypotheses and suggest that short-term bereavement outcomes are different than factors that predict well-being while caregiving. Future studies should address whether long-term bereavement outcomes differ by baseline caregiving characteristics to guide intervention research.
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