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Palliative Care for People With Very Severe to Extreme Behavioural and Psychological Symptoms of Dementia (BPSD): A Scoping Review

2026-02-01T00:00:00Z

Title: Palliative Care for People With Very Severe to Extreme Behavioural and Psychological Symptoms of Dementia (BPSD): A Scoping Review Authors: Gallop, M.; Ford, J.; Bowman, A.; Mullen, A.; Schwebel, D.; Johnson, A.; Fernandez, R. Abstract: Aim: To explore current evidence regarding the provision of palliative care for individuals with very severe to extreme behavioural and psychological symptoms of dementia (BPSD) in a hospital setting. Design: Scoping review. Reporting method: The PRISMA-ScR reporting guideline. Methods: The JBI guidelines for scoping reviews were followed. A data extraction form assisted in the identification of key findings via a process of content analysis. Data sources: Studies were obtained from bibliographic databases of PubMed, CINAHL, and PsycINFO. Results: This review included six articles, and nine categories emerged from the findings. Symptom assessment and management, pain assessment challenges, atypical presentation of end-stage dementia, complex prescribing and treatment practices, principles of person-centred care, collaboration; training for health care professionals; emotional impact on staff; and family and caregivers. Conclusions: This scoping review highlighted a significant gap in the literature regarding palliative care for people living with very severe to extreme BPSD in hospital settings. This review highlighted key differences in the presentation of people with BPSD needing palliative care. There is a need for tailored models of care, specialised training and education for health professionals, families, and carers, and recognition of dementia as a terminal illness. Implications for the profession and/or patient care: The results of this review provide valuable insights into the level of understanding about the unique palliative care needs for people experiencing very severe to extreme BPSD, making an important contribution to the planning and development of future models of care. Impact: Mapping the available literature highlights a paucity of research in palliative care for people with very severe to extreme BPSD in hospital settings. There is a need for rigorous research studies and models of care developed and informed by the evidence for this small population necessitating unique care needs

Psychosocial distress in rural palliative care: Preliminary longitudinal findings using the DADDS

2025-10-01T00:00:00Z

Title: Psychosocial distress in rural palliative care: Preliminary longitudinal findings using the DADDS Authors: Bennett, G.; Bates, F.; Duncanson, K.; Heslop, I.; Schneider, J.; Dineen-Griffin, S. Abstract: Objectives: Palliative care enhances life, but rural Australia faces significant inequities, and psychosocial distress, an important yet often overlooked aspect, is under-recognized in these settings. This study examines how psychosocial distress evolves in rural palliative patients using the Death and Dying Distress Scale (DADDS). Methods: A longitudinal study was conducted with palliative care patients in rural hospitals on Australia's east coast. Distress levels were measured using DADDS at multiple timepoints. Mixed-effects models assessed distress trajectories, while survival analyses (Weibull model) examined whether average distress changes predicted survival duration. For comparability, DADDS scores in mixed-effects models were standardized (0-100%), whereas survival analyses used raw total score changes. Results: Adjusted mean total DADDS was 37.14 ± 22.67, with highest distress in fear of suffering and pain (49.95 ± 26.56) and lowest in fear of sudden death (30.26 ± 30.24). Distress followed a U-shaped trajectory: peaking early (52.68), declining mid (29.85) and late stages (28.26), then rising near death (53.05) (EMMs). Statistically significant changes included declines from early to mid-stage (β = -22.84, p = 0.007) and increases from late to near-death (β = 24.79, p = 0.003). Distress increased most from late to near-death in fear of suffering and death (β = 27.38, p = 0.006) and declined most from early to mid-stage in fear of dying (β = 28.01, p = 0.007). Higher distress correlated with shorter survival; each one-point increase in distress linked to a 6.97% survival reduction (time ratio = 0.930, β = -0.070, p < 0.001). Significance of results: Psychosocial distress peaks in early palliative care and near death and is associated with reduced survival. Support should prioritize fears of suffering and pain during these stages, address fear of the dying process earlier, and remain attentive to persistent concerns such as loss of time and opportunity.

Psychosocial distress in rural palliative care: Preliminary longitudinal findings using the DADDS.

2025-10-01T00:00:00Z

Title: Psychosocial distress in rural palliative care: Preliminary longitudinal findings using the DADDS. Authors: Benneth, G.; Bates, F.; Duncanson, K.; Heslop, I.; Schneider, J.; Dineen-Griffin, S. Abstract: Objectives: Palliative care enhances life, but rural Australia faces significant inequities, and psychosocial distress, an important yet often overlooked aspect, is under-recognized in these settings. This study examines how psychosocial distress evolves in rural palliative patients using the Death and Dying Distress Scale (DADDS). Methods: A longitudinal study was conducted with palliative care patients in rural hospitals on Australia's east coast. Distress levels were measured using DADDS at multiple timepoints. Mixed-effects models assessed distress trajectories, while survival analyses (Weibull model) examined whether average distress changes predicted survival duration. For comparability, DADDS scores in mixed-effects models were standardized (0-100%), whereas survival analyses used raw total score changes. Results: Adjusted mean total DADDS was 37.14 ± 22.67, with highest distress in fear of suffering and pain (49.95 ± 26.56) and lowest in fear of sudden death (30.26 ± 30.24). Distress followed a U-shaped trajectory: peaking early (52.68), declining mid (29.85) and late stages (28.26), then rising near death (53.05) (EMMs). Statistically significant changes included declines from early to mid-stage (β = -22.84, p = 0.007) and increases from late to near-death (β = 24.79, p = 0.003). Distress increased most from late to near-death in fear of suffering and death (β = 27.38, p = 0.006) and declined most from early to mid-stage in fear of dying (β = 28.01, p = 0.007). Higher distress correlated with shorter survival; each one-point increase in distress linked to a 6.97% survival reduction (time ratio = 0.930, β = -0.070, p < 0.001). Significance of results: Psychosocial distress peaks in early palliative care and near death and is associated with reduced survival. Support should prioritize fears of suffering and pain during these stages, address fear of the dying process earlier, and remain attentive to persistent concerns such as loss of time and opportunity.

Family and carer experiences of advanced care planning processes and outcomes

2025-01-01T00:00:00Z

Title: Family and carer experiences of advanced care planning processes and outcomes Authors: Whiteford, G.; Curley, D.; Mooney, G.; Kinsman, L.; Lower, T.; Hobbs, M. Abstract: Objectives: Despite practice development in the area of advanced care planning (ACP) and systems wide changes implemented to support ACP processes, there has been a paucity of research which has addressed the experiences of a key stakeholder group - family and carers - as they navigate their way through these often very challenging processes. The study described in this article focussed on this key group. Methods: In-depth qualitative interviews were undertaken with family members and carers in a regional area of Australia in order to illuminate their lived experiences of ACP processes. Results: Thematic analysis of the narrative data yielded 4 key themes: Being overwhelmed on the ACP journey; unifying effects of completing and using an advanced care directive (ACD); experiencing the highlights and lowlights of care; and paying it forward in advice to staff, carers and families. Significance of results: The ACP journey is unique for each carer/family and can be overwhelming. Whilst he lived experiences of families/carers indicated that the quality of care received was of a high standard, feedback to staff suggested their communications be timelier and more empathic. All participants in this study reported benefitting from engaging in ACP early and appreciated support to do so. All benefitted from the preparation of an ACD and found the outcomes (in terms of concordance) gratifying.