Jessie Dezutter

Since the late twentieth century, chaplains and chaplaincy researchers have increasingly emphasized the importance of evidence-based practice in general, and outcome-research in particular (e.g., D...

Tiredness of Life (ToL) in older adults, especially nursing home residents, is causing increasing societal concern. Although healthcare professionals (HCPs) encounter residents experiencing ToL, scientific research remains scarce. Its relationship to depression or a wish to die is especially unclear. This study explores healthcare professionals' interpretations of tiredness of life and the meanings and boundaries they associate with it. Conducted as a qualitative study, data was collected through semi-structured interviews with 32 HCPs from diverse disciplines, including nurses, nurse aides, general practitioners, geriatricians, and psychiatrists, working in Flanders, Belgium. Data was analyzed using the Qualitative Analysis Guide of Leuven (QUAGOL). Healthcare professionals described ToL as a recognizable yet difficult-to-define experience. Divergent interpretations revealed ambiguity in how ToL is perceived within practice. Still, shared associations emerged: a lack of mattering, future perspective and energy. ToL was often linked to a death wish and euthanasia requests, with perceptions shaped by their professional background and views on associated death wishes. Our findings provide insights into HCPs' perspectives on ToL. The strong association with death wishes and euthanasia requests underscores the need to examine how these perceptions shape care strategies. Given ToL's existential nature, interdisciplinary collaboration and inclusion of paramedical perspectives seem essential.

Nighttime disturbances, including nocturnal neuropsychiatric symptoms, circadian rhythm disruptions, and sleep-wake disorders, are closely intertwined and commonly occur in people with dementia (PwD). Despite their specificity, they are frequently described using broad and nonspecific terms such as “sleep problems”. However, such conceptual ambiguity may hinder precise clinical reasoning, contribute to heterogeneity in research populations, and obscure treatment selection and care planning when these symptoms may require different management approaches. In this paper, we address the lack of specificity in the conceptualization of nighttime disturbances in dementia by synthesizing descriptive accounts from the existing literature. Systematic database searches of Web of Science, PubMed, ProQuest Psychology, and CINAHL were conducted using a predefined search strategy combining terms for nighttime disturbances and dementia. These searches yielded 6,338 records. At least one outcome had to include a description of nighttime disturbances (either sleep-related or wakefulness-related). In total, 18 studies were included. We provide a framework highlighting potentially distinct underlying mechanisms of three interrelated phenomena, including nocturnal wakefulness behaviors, sleep-related behaviors, and disruptions in circadian rhythm. By clarifying phenomenological boundaries and potentially different mechanisms, this framework aims to support more precise assessment and communication in institutional and home care settings. A clear differentiation of nighttime phenomena is crucial for more targeted and mechanism-informed treatment approaches to improve continuity of care and support decision-making regarding long-term care. Through this integrative framework, we aim to contribute to a more systematic and nuanced understanding of nighttime disturbances in dementia, moving beyond broad descriptive labels toward clinically meaningful differentiation.

Research on loneliness and depressive symptoms in older adults often emphasizes general loneliness or its social and emotional dimensions. However, the roles of existential loneliness (EL) and existential isolation (EI) in predicting depressive symptoms remain largely unclear. This study examines the interrelationships among EL, EI, and general loneliness, and compares their effects on depressive symptoms in older adults. By doing so, it aims to contribute to the conceptual distinction between these forms of loneliness/isolation and to better understand how EL and EI contribute to depressive symptoms. Results showed that EL had a strong positive correlation with general loneliness, while EI had moderate positive relationships with both EL and general loneliness in older adults. Regression analysis indicated that both EL and general loneliness significantly predicted depressive symptoms, with EL demonstrating the strongest predictive capacity. EI did not significantly predict depressive symptoms. These findings suggest that EL, general loneliness, and EI are related but distinct constructs, and that especially EL and general loneliness may be independent antecedents for depressive symptoms. Interventions specifically targeting EL may offer a promising approach to supporting older adults’ mental health. Still, future studies are needed to test the results of this study.

Objective: This study explored the therapeutic skills and attitudes mental health care (MHC) workers draw on when engaging with existential concerns in working with individuals with a persistent death wish related to unbearable psychiatric suffering (DWUPS) and examined whether sustained exposure to specialised existential care settings shapes existential responsiveness and relational presence. Method: A qualitative design was employed, following Elliott and Timulak's descriptive‐interpretative methodology. Eighteen in‐depth interviews were conducted with two samples: non‐specialised (Sample A) and specialised MHC‐workers affiliated with Reakiro, a care centre for persons with DWUPS which operates from an existentially grounded, presence‐based palliative and recovery‐oriented framework (Sample B). Interview transcripts were organised into thematic categories through inductive analysis. Comparative frequency analysis identified specific patterns. Findings: Four core domains characterised MCH‐workers' engagement with persons with DWUPS: existential, relational and palliative skills and attitudes, alongside the importance of self‐care. Across both samples, participants described personal existential processing, presence, and existentially oriented interventions, relational engagement within the therapeutic space, facilitating connection with significant others and openness to the death wish as central to their work. Differences between samples were secondary and context‐related. Specialised MHC‐workers showed less hesitation in addressing the death wish, whereas non‐specialised MHC‐workers more strongly emphasised life‐affirming interventions and reported greater ethical and emotional burden. Conclusion: Working with individuals with DWUPS requires an existentially grounded therapeutic stance that integrates openness to both life and death. The findings highlight the need for clinical training, peer support, and reflective supervision focused on existential presence, relational engagement and dual‐track care.

Nighttime agitation (NA) is a prevalent and challenging phenomenon affecting people with dementia (PwD), often resulting in premature institutionalization. Yet, informal caregivers’ perspectives on this phenomenon remain underexplored. We conducted 15 in-depth interviews with informal caregivers to gain insight into their experiences and reactions to NA. Thematic analysis identified seven sub-themes related to carers’ experience and eight sub-themes concerning their reactions. These themes emerged across three levels, namely, PwD, informal caregiver and the environment. Most phenomena occurred at a dyadic level between PwD and informal caregiver, highlighting the potential of interventions targeting dyadic coping. Informal caregivers feel insufficiently supported when sleep disturbances co-occur with NA. They primarily rely on self-initiated strategies and learn by experience. Caregivers mention the need for more advanced knowledge and skills in reacting to co-occurrence of sleep disturbances with NA or systemic support in terms of dealing with emergencies. Caregivers also reflect extensively on the impact of challenging behaviors during the night on their mental and physical well-being. Notably, no non-pharmacological interventions for NA adequately address the themes identified in this study, highlighting the urgent need for integrative approaches and recognition of caregiver wellbeing as a core outcome, not a secondary consideration in interventions.

The phenomenon of ‘tiredness of life’ (ToL) in older adults emerges in societal and political debates on euthanasia and assisted suicide (EAS) as well as in academia. However, the conceptualization of ToL is unclear and seems to be influenced by the socio-political context of studies (i.e., EAS debates). Also, lay perspectives are largely neglected in current conceptualizations, but appear important to assess their usefulness. The current study explored Belgian (n = 512) older adults’ lay ideas on ToL and compared them to those of older adults from a different socio-political context, namely the U.S. (n = 144). Two sets of open-ended questions inquiring about conceptualization and personal experiences with ToL were asked. Directed content analysis was used to examine the fit of lay and current scientific ideas (defining ToL as boredom and aversion towards life, meaninglessness, fatigue). The influence of personal experiences with ToL as well as potential differences between the countries were also explored. Scientific and lay ideas were mostly overlapping. Boredom with life was the most frequent and aversion the least frequent component in both countries. Three additional components were identified in lay ideas. Participants with personal experience with ToL were mentioning most components more frequently. Interestingly, the Belgian codebook did not need to be adapted to fit the U.S. data. This study is a first indication of the usefulness of scientific ToL conceptualizations in different socio-political contexts. Ideas on ways to integrate additional insights into future research on ToL and tailor interventions are discussed.

Background and Objectives: Tiredness of life (ToL) in older adults is a phenomenon that is causing increasing social concern, with health care professionals reporting challenges in caring for those who are experiencing it. Nursing home residents, in particular, may be especially vulnerable to ToL. However, there is currently no scientific understanding of what ToL entails and how exactly nursing home residents experience this phenomenon. This study therefore aims to unravel the experience of ToL among nursing home residents. Research Design and Methods: This study employed a grounded theory design where 26 semistructured in-depth interviews with nursing home residents were collected. Data were analyzed iteratively using the Qualitative Analysis Guide of Leuven (QUAGOL). Results: The experience of ToL among nursing home residents is characterized by an interacting combination of several experiences of suffering: A disconnection from life, which manifests as a loss of drive and/or death wishes, is closely linked to a threatened sense of self, characterized by four types of loss: a loss of mattering, a loss of social connection, a loss of agency, and a loss of hope for the future. Discussion and Implications: Our findings provide a deeper understanding of the ToL experience among nursing home residents. ToL appears to be a dynamic, complex, and layered phenomenon. Fostering a valued sense of self could guide care strategies for residents experiencing ToL. Further research is essential to unpack the specific dynamics underlying this experience.