Literature Review

Behavioral symptoms in patients with dementia are associated with care partner abusive behaviorsJournal of Elder Abuse & Neglect; by Emily LeRolland, Francesca Falzarano, Karen L. Siedlecki; 8/25Abuse of older adults with dementia is an increasingly prevalent public health concern in the United States. The current study examined whether care recipient behavioral symptoms (e.g. aggressive or agitated behaviors) predicted abusive behaviors by care partners. Results indicate that most participants reported engaging in at least one abusive behavior toward their care recipient. Behavioral symptoms in care recipients were a significant predictor of abusive behavior perpetrated by the care partner, even after controlling for a large number of covariates. Care partner depressive symptoms significantly mediated the relationship between care recipient behavioral symptoms and care partner abusive behavior. Our results suggest that physician screening for depression in care partners and referral to appropriate resources may be one avenue for decreasing the risk of abuse toward care recipients. 

Clinician and caregiver perspectives on managing dementia behaviors in hospiceMedpage Today; by Elethia W. Tillman; 7/25New research reveals a gap in training and resources for managing behavioral and psychological symptoms of dementia (BPSD) in hospice settings, impacting both patient well-being and caregiver burden. Key points include:

Proportional sedation for persistent agitated delirium in palliative care-A randomized clinical trialJAMA Oncology; David Hui, Allison De La Rosa, Jaw-Shiun Tsai, Shao-Yi Cheng, Egidio Del Fabbro, Anita Thankam Thomas Kuzhiyil, Kendra Rowe, Ahsan Azhar, Thuc Nguyen, Michael Tang, Chien-An Yao, Hsien-Liang Huang, Jen-Kuei Peng, Wen-Yu Hu, Sonal Admane, Rony Dev, Minxing Chen, Patricia Bramati, Sanjay Shete, Eduardo Bruera; 7/25Neuroleptic and benzodiazepine medications are often considered for patients with persistent agitated delirium in the last days of life; however, the risk-to-benefit ratio of these medications is ill-defined and benzodiazepine medications have not been compared to placebo. The results of this randomized clinical trial indicate that proactive use of scheduled sedatives, particularly lorazepam-based regimens, may reduce persistent restlessness and/or agitation in patients with advanced cancer and delirium in the palliative care setting. 

"It may cost you your money, it costs you your life": A framework for financial hardship in dementiaGerontologist; by Krista L Harrison, Emily R Adrion, Juliana Friend, Sarah B Garrett, Madina Halim, Michael Terranova, Alissa B Sideman, Nicole D Boyd, Georges Naasan, Joni Gilissen, Pei Chen, Melissa D Aldridge, Daniel Dohan, Michael D Geschwind, Alexander K Smith, Christine S Ritchie; 7/25Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual frameworks of the financial experiences of people impacted by dementia exist. This study examined how patients and caregivers impacted by different types of dementia and at different points in the disease journey described financial issues within a palliative care context... Even in a well-resourced population, the financial toll of dementia can be substantial. The Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings.

Asking older adults with impaired cognition and care partners about serious illness experiences can elicit goals of care during advance care planning Americn Journal of Hospice and Palliative Medicine; by Glory H. Thai, BS, Valecia Hanna, MS, Peiyuan Zhang, MSW, Chase Mulholland Green, MPH, John Cagle, PhD, MSW, Jennifer L. Wolff, PhD, and Martha Abshire Saylor, PhD, RN; 8/13/25 Older adults with cognitive impairment and their care partners were able to respond to serious illness experience questions, with responses eliciting a spectrum of goals of care. Integrating such questions into advanced care planning (ACP) for older adults with cognitive impairment may clarify goals of care and improve decision-making for patients and families. 

[UK] 'Dementia has got two faces': grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophyAging and Mental Health; Claire Waddington, Henry Clements, Sebastian Crutch, Martina Davis, Jonathan Glenister, Emma Harding, Erin Hope Thompson, Jill Walton, Joshua Stott; 8/25Research on grief in people with primary progressive aphasia (PPA) and posterior cortical atrophy (PCA), is limited, despite the unique challenges these individuals face due to lack of understanding of their condition, younger age at onset and atypical symptom profile. The current study explores the losses people living with PPA or PCA experience and what helps to navigate these losses. The impact and navigation of loss is reflected across five interconnecting themes: what I have lost, am losing and will lose, shared and unique sense of loss, balance between what is lost and what remains, changes in relationships and what helps in navigating loss. These findings will be used alongside existing grief theory and interventional frameworks to develop a psychosocial intervention for people living with dementia.

Standardized assessment of patient experience in pediatric palliative care: A national collaborationJournal of Pain & Symptom Management; by Ashley K Autrey, Stacey Rifkin-Zenenberg, Tracy Hills, Jennifer Salant, Rachna May, Elliot Rabinowitz, Chelsea Heneghan, Laura Drach, Emma Jones, Rachel Thienprayoon; 7/25Use of patient reported outcome measures (PROMs) are crucial to providing patient-centered care. In 2022, the Pediatric Palliative Improvement Network developed a project to standardize the assessment of patient experiences with PPC [pediatric palliative care] services. Results: Patients/ families felt heard and understood and would recommend PPC. Standardized assessments of patient experience with PPC are feasible and informative. PROMs can ensure that PPC services meet patient needs, identify opportunities for improvement, and demonstrate value.

Integrating advance care planning into end-of-life education: Nursing students’ reflections on advance health care directive and Five Wishes assignmentsNursing Reports; by Therese Doan, Sumiyo Brennan; 7/25Advance care planning tools, such as the Advance Health Care Directive (AHCD) and Five Wishes, provide experiential learning opportunities [for prelicensure nursing students] that bridge theoretical knowledge with real-world patient advocacy. In this study, students were asked to complete either the AHCD or Five Wishes document as though planning for their own end-of-life care, encouraging personal reflection and professional insight. Students developed critical insights into their personal values, envisioned themselves in EOL scenarios, and reflected on their responsibility as future nurses. The assignment fostered both professional development and personal growth, making it a meaningful experience within the nursing curriculum. By encouraging students to engage personally with end-of-life decisions, the assignment cultivates empathy, ethical reflection, and a readiness to initiate sensitive conversations.

Black and white older adults’ end-of-life experiences: Does hospice use mitigate racial disparities? The Journals of Gerontology; by Clifford Ross, Brina Ratangee, Emily Schuler, Zheng Lian, Benmun Damul, Deborah Carr, Lucie Kalousová; 7/25Racial disparities in end-of-life care are well documented, but less is known about how these inequalities shape assessments of death quality. Proxies for Black decedents reported higher perceived death quality than those for White decedents, despite evidence of greater structural disadvantage. However, perceived care concordance was significantly lower among Black decedents. Hospice care was associated with improved perceived death quality for Black decedents but not for Whites. When accounting for socioeconomic and death experience controls, hospice care did not moderate perceived care concordance.

Issues in developing multilingual graphics-based digital caregiver guides for dementia careDiscourse, Context & Media; by Boyd H. Davis, Margaret Maclagan, Meredith Troutman-Jordan; 8/25To increase the opportunity to educate caregivers for persons with dementia, particularly the nearly 40% of migrant healthcare workers emigrating to the US, we have chosen an adaptation of graphic medicine as a means of presenting these workers with conversations about dementia care in two formats of ‘mini-comics’: photo-based and cartoon. Our graphic Caregiver Guides are a form of mediated digital discourse that incorporate both words and pictures, and thereby support caregivers as they draw immediately useful guidance from online materials when offering daily off-line care. Each guide covers a situation that occurs commonly as caregivers care for people living with dementia.

First-ever global ranking of palliative care: 2025 World Map under the new WHO framework Journal of Pain and Symptom Management; by Vilma A. Tripodoro, Jesús Fernando López Fidalgo, Juan José Pons, Stephen R. Connor, Eduardo Garralda, MA, Fernanda Bastos, Álvaro Montero, Laura Monzón Llamas, Ana Cristina Béjar, Daniela Suárez, Carlos Centeno; 8/7/25 This is the fourth edition of mapping global palliative care development and the first to introduce a country ranking using the new WHO framework. Covering 201 countries, the findings reveal deep inequities and highlight priority areas for action. The Global Development Score enables the creation of tailored strategies, supporting advocacy, policy, and investment to expand access and reduce serious health-related suffering worldwide. [To view the map, open the source article and scroll down to Figure 3.]

[Netherlands] Voluntarily stopping eating and drinking as a self-chosen path for end of lifeWorld Medical Journal; Gert van Dijk, Veelke Derckx, Alexander de Graeff; 6/25Moving into the future, it is likely that doctors and other healthcare providers will be confronted more often with patients who would like to explore options for controlling their end of life care. They should correctly inform patients about the various clinical care options, including VSED [voluntarily stopping eating and drinking], and carefully guide them in the event of a decision to choose VSED. If healthcare providers have conscientious objections in providing care to people who choose VSED, then care must be transferred to a healthcare provider who is willing to provide the necessary care.

Palliative delays associated with increased length of stay in older traumatic brain injury patientsThe Journal of Trauma & Acute Care Surgery; by Sarah A Hatfield, Parima Safe, Cleo Siderides, Anjile An, Cassandra V Villegas, Nicole Goulet, Robert J Winchell, Elizabeth Gorman; 7/25Trauma Quality Improvement Program guidelines recommend early goals of care discussions (≤72 hours) for older patients with severe injuries. Patients (55 years or older) with moderate to severe TBI [traumatic brain injury] ... were retrospectively identified at a level I trauma center (2020-2022). Conclusions: Delayed PI [palliative intervention] is associated with increased LOS [length of stay] in older TBI patients, with no survival difference compared with early PI. Palliative interventions should be introduced early to reduce morbidity in patients with potential poor prognosis.