Advanced Dementia Research Articles

Can an effective end-of-life intervention for advanced dementia be viewed as moral?

Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers' assistance with oral feeding and hydrating. The article presents eight criticisms and "alternate views" regarding ceasing assisted feeding/hydrating. It draws on perspectives from clinical medicine, law, ethics, and religion. The conflict is between (A) people's core beliefs that reflect cultural norms and religious teachings regarding what is moral versus (B) patients' autonomous right of self-determination and claim right to avoid suffering. The article presents each side as strongly as possible. Accepting the intervention as moral could allow patients a peaceful and timely dying from patients' underlying disease. Confidence in future success can deter patients and their surrogates from considering a hastened dying in earlier stages of dementia.

Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life-sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from patients with middle-stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering?

Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis.

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

Broadening the concept of suffering is a less than adequate strategy for respecting patients in advanced dementia.

Broadening the concept of suffering is a less than adequate strategy for respecting patients in advanced dementia.

Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman etal., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

Responses to Open Peer Commentaries about "Timely dying in dementia: use patients' judgments and broaden the concept of suffering" and "Can an effective end-of-life intervention for advanced dementia be viewed as moral?"

Responses to Open Peer Commentaries about "Timely dying in dementia: use patients' judgments and broaden the concept of suffering" and "Can an effective end-of-life intervention for advanced dementia be viewed as moral?"

Executive Summary of 2023 International Conference of the Korean Dementia Association (IC-KDA 2023): A Report From the Academic Committee of the Korean Dementia Association.

The Korean Dementia Association (KDA) has been organizing biennial international academic conferences since 2019, with the International Conference of the KDA (IC-KDA) 2023 held in Busan under the theme 'Beyond Boundaries: Advancing Global Dementia Solutions.' The conference comprised 6 scientific sessions, 3 plenary lectures, and 4 luncheon symposiums, drawing 804 participants from 35 countries. Notably, a Korea-Taiwan Joint Symposium addressed insights into Alzheimer's disease (AD). Plenary lectures by renowned scholars explored topics such as microbiome-related AD pathogenesis, social cognition in neurodegenerative diseases, and genetic frontotemporal dementia (FTD). On the first day, specific presentations covered subjects like the gut-brain axis and neuroinflammation in dementia, blood-based biomarkers in AD, and updates in AD therapeutics. The second day's presentations addressed recent issues in clinical neuropsychology, FTD cohort studies, and the pathogenesis of non-AD dementia. The Academic Committee of the KDA compiles lecture summaries to provide comprehensive understanding of the advanced dementia knowledge presented at IC-KDA 2023.

Language Variations in Describing Nutrition and Hydration Interventions in State Physician Orders for Life Sustaining Treatment Forms and the Implications for Advanced Dementia Patients.

Research suggests that language can impact medical decision-making, but few studies exist describing the variations in language to describe end-of-life nutrition and hydration interventions. The language contained in the Physician Orders for Life Sustaining Treatment (POLST) form varies across states, but this variation has not yet been fully analyzed. This investigation has implications for communicating with surrogates about the insertion of feeding tubes in advanced dementia patients, a common procedure in this population despite its potentially high risks and low benefits. Identify and analyze the variations in language related to end-of-life nutrition and hydration interventions in state POLST forms. Descriptive study. The most up-to-date POLST forms for each of the 50 US states and the District of Columbia as of August 2022 were analyzed for their descriptions of end-of-life nutrition and hydration interventions. Fifty out of 51 (98%) forms referenced nutrition and/or hydration interventions. Four main modifiers of the word "nutrition" and/or "hydration" were identified: artificial (32%), artificially administered (56%), medically administered (14%), and assisted/medically assisted (18%). Forty-eight (96%) forms indicated an explicit option to forgo feeding tubes, and all of these forms described doing so with negatively valenced language. The language describing end-of-life nutrition and hydration interventions and feeding tubes in state POLST forms is insufficiently specific and varies significantly across the country. These terms are at best ambiguous and at worst imply incorrect information. More precise language may assist in the difficult discussion between physicians and surrogates about inserting feeding tubes in advanced dementia patients.

Wi-Gitation: Replica Wi-Fi CSI Dataset for Physical Agitation Activity Recognition

Agitation is a commonly found behavioral condition in persons with advanced dementia. It requires continuous monitoring to gain insights into agitation levels to assist caregivers in delivering adequate care. The available monitoring techniques use cameras and wearables which are distressful and intrusive and are thus often rejected by older adults. To enable continuous monitoring in older adult care, unobtrusive Wi-Fi channel state information (CSI) can be leveraged to monitor physical activities related to agitation. However, to the best of our knowledge, there are no realistic CSI datasets available for facilitating the classification of physical activities demonstrated during agitation scenarios such as disturbed walking, repetitive sitting–getting up, tapping on a surface, hand wringing, rubbing on a surface, flipping objects, and kicking. Therefore, in this paper, we present a public dataset named Wi-Gitation. For Wi-Gitation, the Wi-Fi CSI data were collected with twenty-three healthy participants depicting the aforementioned agitation-related physical activities at two different locations in a one-bedroom apartment with multiple receivers placed at different distances (0.5–8 m) from the participants. The validation results on the Wi-Gitation dataset indicate higher accuracies (F1-Scores ≥0.95) when employing mixed-data analysis, where the training and testing data share the same distribution. Conversely, in scenarios where the training and testing data differ in distribution (i.e., leave-one-out), the accuracies experienced a notable decline (F1-Scores ≤0.21). This dataset can be used for fundamental research on CSI signals and in the evaluation of advanced algorithms developed for tackling domain invariance in CSI-based human activity recognition.

Pre-hospitalization dysphagia and feeding tube placement in nursing home residents with advanced dementia.

Despite research demonstrating the risks of using feeding tubes in persons with advanced dementia, they continue to be placed. The natural history of dysphagia among patients with advanced dementia has not been examined. We conducted a secondary analysis of a national cohort of persons with advanced dementia staying at a nursing home stay before hospitalization to examine (1) pre-hospitalization dysphagia prevalence and (2) risk of feeding tube placement during hospitalization based on preexisting dysphagia. A retrospective cohort study consisting of all nursing home (NH) residents (≥66 years) with advanced dementia (Cognitive Function Scale score ≥2), a hospitalization between 2013-2017, and a Minimum Data Set (MDS) 3.0 assessment within 120 days before hospitalization. Pre-hospitalization dysphagia status and surgically placed feeding tube insertion during hospitalization were determined by MDS 3.0 swallowing items and ICD-9 codes, respectively. A multivariate logistic model clustering on hospital was used to examine the association of dysphagia with percutaneous endoscopic gastrostomy (PEG) feeding tube placement after adjustment for confounders. Between 2013 and 2017, 889,983 persons with NH stay with advanced dementia (mean age: 84.5, SD: 7.5, and 63.5% female) were hospitalized. Pre-hospitalization dysphagia was documented in 5.4% (n = 47,574) and characterized by oral dysphagia (n = 21,438, 2.4%), pharyngeal dysphagia (n = 24,257, 2.7%), and general swallowing complaints/pain (n = 14,928, 1.7%). Overall, PEG feeding tubes were placed in 3529 patients (11.2%) with pre-hospitalization dysphagia, whereas 27,893 (88.8%) did not have pre-hospitalization dysphagia according to MDS 3.0 items. Feeding tube placement risk increased with the number of dysphagia items noted on the pre-hospitalization MDS (6 vs. 0 dysphagia variables: OR = 5.43, 95% CI: 3.19-9.27). Based on MDS 3.0 assessment, only 11% of PEG feeding tubes were inserted in persons with prior dysphagia. Future research is needed on whether this represents inadequate assessment or the impact of potentially reversible intercurrent illness resulting in feeding tube placement.

Improving Palliative and End of Life Care on the Central Coast, Australia: Results from Two Clinically-Led Mixed-Methods Research Projects

In 2019, New South Wales Regional Health Partners commissioned the Central Coast Local Health District to undertake clinician-driven research that would lead to the implementation of new service models designed to improve palliative and end-of-life care to the Central Coast community.
 During 2020, a series of five stakeholder workshops with clinicians, healthcare managers, consumers and other local stakeholders involved in palliative and end of life care led to the development of two translational research projects: palliative and end of life care for people with advanced dementia; and the experiences of people who access emergency care towards the end of life. The subsequent clinically-led research programs were undertaken between January 2021 and September 2022. In this presentation, we discuss the results of these two mixed-methods research projects.
 To understand the patient journey, both projects undertook audits. For people who died with dementia, a retrospective case notes audit of 705 people who died between January 2015 and December 2019 found half died in public hospitals, and the other half in other settings. Less than one in five patients dying in public hospitals had an advanced care directive recorded, and fewer than one in 13 had an advanced care plan. The second audit of 1730 Central Coast residents who died between August 2020 and July 2021 found nearly half had 1 (45%) emergency department presentation in the 90 days before their death, and more than one in four had 2 presentations. There was a significant difference in the number of emergency department presentations and hospital admissions when comparing patient age and place of death.
 Across both projects, a total of 303 bereaved carers completed a postal survey. Respondents reported high levels of satisfaction with end of life care across settings. Most people receiving care were always treated with respect and dignity. Pain was managed best in hospital, compared to residential aged care and home settings. Less than half of carers said the person cared for had enough choice about where they died, but on balance, more than four in five said the person died in the right place. 
 Thematic analysis of 19 in-depth interviews with bereaved carers found three themes were common across projects: 1) There is a lack of acknowledgement of end of life, and discussions about death usually happen in the final days; 2) Services and supports are complex and fragmented, knowledge is needed to navigate them and experiences vary; and 3) End of life caring is challenging and there is limited support for carers to care.
 Drawing on previous evidence that was presented during ICIC22, we examine the lessons learned from these research projects on the importance of clinically-led research and how this is translating into the implementation of an integrated model of end of life care on the Central Coast. Key lessons for international colleagues from this research are considered.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia.

Paradoxical lucidity is defined as an instance of unexpected lucid behavior in a person who is assumed to be noncommunicative due to a progressive and pathophysiologic dementing process. To inform studies of the prevalence, characteristics, and impact of these behaviors, this interview study examined caregivers' experiences of witnessing paradoxical lucidity. Participants were family caregivers of persons living with advanced dementia caused by a neurodegenerative disease producing significant impairments in communication. Semistructured interviews elicited the caregivers' experiences of plausible lucid episodes. Data analysis used a thematic analysis approach. Most caregivers reported at least 1 episode of lucidity. Episodes were typically brief. Most involved utterances, but nonverbal behaviors were also common. The mental capacities associated with these behaviors included recognition, awareness of surroundings, recognizing others' emotions, and goal-directed behavior. Most caregivers' reactions were positive. Episodes did not lead to changes in major medical decisions but instead to efforts to either modify or reinforce daily caregiving efforts. Episodes of lucidity were common, a finding seen in other studies. If prevalence studies confirm this, the qualifier "paradoxical" should be eliminated. The caregivers' familiarity with the person living with dementia allowed them to attribute meaning to subtle behaviors that might not otherwise be detected or considered lucid. Clinicians who care for persons with advanced-stage dementia should routinely ask caregivers about episodes of lucid communication and their emotional reactions.

ADVANCED-COMFORT: TESTING A CARE PLANNING INTERVENTION FOR NURSING HOME RESIDENTS WITH ADVANCED DEMENTIA

Abstract Many nursing home (NH) residents with advanced dementia receive burdensome interventions rather than interventions that promote comfort or quality of life. The purpose of this study was to test the usability of a novel intervention called ADVANCED-Comfort that aims to enhance the provision of personalized, comfort focused care for residents with advanced dementia. The intervention consisted of structured care plan meetings between the NH team and proxies of residents with dementia (e.g., family members). Using the ADVANCED-Comfort workbook, proxies and staff created individualized care plans addressing 6 domains adapted from the Age Friendly Health System Framework (what Matters; Meaningful activities; Mealtime; Mobility; Medications and treatments; and Make comfortable). We evaluated the intervention using surveys, observation, and exit interviews. We found the intervention to be highly usable (acceptable, appropriate, and feasible) and exit interviews identified several promising outcomes. Both families and staff reported that the intervention improved communication and trust. Families reported that they had a newfound trust in staff to provide consistent quality care. Staff reported that the intervention helped them build better relationships with families and allowed families to articulate what they prefer rather than waiting until “something goes wrong.” Staff also reported that the intervention improved their excitement to go to work and enhanced their sense of teamwork. Finally, both staff and proxies reported exciting implications for residents such as a reduction in antipsychotic medication, decrease in distressed behaviors, weight stabilization, and initiation of hospice. Based on these preliminary findings, additional testing of the ADVANCED-Comfort intervention is warranted.

MASON CARES RANDOMIZED STUDY: EFFECTS OF A NINE-WEEK STRESS MANAGEMENT PROGRAM INTERVENTION ON CAREGIVER BURDEN SCORES

Abstract OBJECTIVE The Mason CARES study examines the impact of a virtual stress management program (Phase 1) and music intervention (Phase 2) on the stress of family caregivers of older adults with dementia. This study presents Phase 1 findings on 99 participants enrolled in 2022. METHODS Using primary data from 99 participants, we analyzed caregiver stress levels before and immediately after implementation of a 9-week stress management program using Zoom videoconference calls. Caregiver stress was measured using the Zarit Burden Interview (ZBI) score with a range from 0 to 48 (Bédard, 2001). Higher values (ZBI >=17.0) are associated with higher levels of stress. RESULTS Among the 99 caregivers, 49.4% were spouses and 50.6% were non-spouses (e.g., adult children). Mean ZBI scores before and after the 9-week stress busting program intervention across the full sample decreased by 14.7% (from 23.7 to 20.2). Spouses experienced a greater decrease (17.9% from 23.5 to 19.3) in caregiver stress compared to non-spouses (12.1% from 23.9 to 21.0). Reductions in stress levels also occurred for caregivers of older adults with mild cognitive impairment (13.9% from 21.0 to 18.0), moderate dementia (16.5% from 24.1 to 20.1), and advanced dementia (9.7% from 27.7 to 25.0). CONCLUSION Findings show that caregivers had high stress levels at baseline (ZBI score of 17 or more). Spouses reported greater stress improvement compared to non-spouses after the 9-week stress busting program. Also, caregivers of older adults with moderate dementia had greater improvement in stress compared to the mild or advanced dementia sub-groups.

THE ESSENTIAL ROLE OF PAID CAREGIVERS IN HOME-BASED DEMENTIA CARE

Abstract Paid caregivers (e.g., home health aides, other home care workers) provide essential support to the rapidly growing number of people with dementia living in the community. This symposium presents innovative findings on the role of paid caregivers in home-based dementia care though exploration of the clinical, family, and care-delivery contexts in which paid caregivers work. First, Reckrey et al describe the scope of paid caregiving in dementia using nationally representative data examining factors associated with receipt of paid care among older adults with overlapping dementia and non-dementia serious illness. Next, we examine mechanisms of delivering paid care: Osakwe et al explore paid caregiver perceptions about the use of telehealth in home health and identify paid caregivers concerns about routine use of this technology in care of people with dementia, and Gordon-Wexler et al explore family caregiver perspectives on navigating Medicare and Medicaid insurance for people with advanced dementia and the challenges they experience coordinating paid care. Finally, we explore how paid caregivers work with other care team members. Quach et al discuss multidisciplinary perspectives about how paid caregivers support person-centered and relationship-centered care to family dementia caregivers, while Fabius et al examine information sharing practices within home care agencies and describe differences and similarities in information sharing needs for people with and without dementia. Taken together, these presentations highlight the important ways that paid caregivers work with providers and families within the care delivery system and identify ways to better support and integrate these essential workers into dementia care teams. This is a Paid Caregiving Interest Group Sponsored Symposium.

DO RELIGION, CULTURE, RACE, OR ETHNICITY PLAY A ROLE IN CHOOSING PEG TUBE AT THE END OF LIFE?

Abstract Although there is substantial evidence that Percutaneous Endoscopic Gastrostomy (PEG) causes significant morbidity and does not change mortality for patients with advanced dementia it continues to be used. We describe a quality initiative of Palliative Care Consultation (PCC) in conjunction with any new PEG evaluation. EMR review and interview with patient (and/or proxy) being evaluated for first-time PEG in two community hospitals within large health system in demographically diverse major metropolitan area. PCC teams provided consistent, culturally/religiously, language-sensitive education regarding PEG, conducted interviews about subsequent decision. Post-initiative PEG placement dropped from >75% to 17.6%, 76 patients received PCC with PEG evaluation. Average age 83.5 (range: 56-108), 55% female. Religion: 54% Christian, 7% Muslim, 10% Jewish, 11% non-religious, 18% other; 46% White, 37% Black, 8% Asian, 8% Hispanic. Common evaluation reasons: difficulty swallowing (30%), low PO intake (30%). Majority of patients had dementia (71%), stroke (18%), Parkinson’s (8%). Most decision-makers (66%) hadn’t received prior counseling regarding alternate nutrition options. After PCC, 17.6% chose PEG, 79.7% careful hand feeding, 2.7% remained unsure. Those choosing PEG mostly desired “guaranteed” nutrition despite risks (10/13), and/or a trial seeking patient recovery (5/13). There were no apparent differences in race/ethnicity, age, sex, or religion that distinguished those electing PEG. PCC initiative to support patients and families “choosing wisely” around PEG placement for those with advanced illness has resulted in significant reduction. Decision-makers mostly cited wish to guarantee nutrition while some hoped for patient recovery. Religious affiliation and sex were not cited as reasons in this group.

PALLIATIVE CARE IN RESIDENTIAL CARE HOMES: IMPLEMENTATION CHALLENGES AND EARLY FINDINGS IN THREE CLINICAL TRIALS

Abstract This symposium will describe, compare and contrast three active clinical trials implementing palliative care models for people with dementia in residential care facilities and nursing homes. SPA-LTC is a pragmatic clinical trial in three Canadian provinces, providing training to palliative care teams and a process for triggered palliative care conferences. EMBED-Care, based in the United Kingdom, is testing a digital clinical support tool to improve integrated palliative care for people with dementia using holistic assessment and promoting shared decision-making. UPLIFT-AD is a multi-state U.S. based clinical trial, providing training for in-facility Palliative Care Leads and facilitating specialty palliative care clinician consults for people with moderate to advanced dementia. This symposium provides an opportunity to compare methodologic choices in study design, including intervention design, use of internal (care facility) based resources vs. external supports, and outcome assessment. Presenters will describe implications of these design choices for the implementation of the trial and for longer term sustainability. Implementation experience, including barriers and facilitators to palliative care programs for people with dementia, will be described.

Patient Portal Use Among Family Caregivers of Individuals With Dementia and Cancer: Regression Analysis From the National Study of Caregiving.

Family caregivers are often inexperienced and require information from clinic visits to effectively provide care for patients. Despite reported deficiencies, 68% of health systems facilitate sharing information with family caregivers through the patient portal. The patient portal is especially critical in the context of serious illnesses, like advanced cancer and dementia, where caregiving is intense and informational needs change over the trajectory of disease progression. The objective of our study was to analyze a large, nationally representative sample of family caregivers from the National Study of Caregiving (NSOC) to determine individual characteristics and demographic factors associated with patient portal use among family caregivers of persons living with dementia and those living with cancer. We conducted a secondary data analysis using data from the 2020 NSOC sample of family caregivers linked to National Health and Aging Trends Study. Weighted regression analysis by condition (ie, dementia or cancer) was used to examine associations between family caregiver use of the patient portal and demographic variables, including age, race or ethnicity, gender, employment status, caregiver health, education, and religiosity. A total of 462 participants (representing 4,589,844 weighted responses) were included in our analysis. In the fully adjusted regression model for caregivers of persons living with dementia, Hispanic ethnicity was associated with higher odds of patient portal use (OR: 2.81, 95% CI 1.05-7.57; P=.04), whereas qualification lower than a college degree was associated with lower odds of patient portal use by family caregiver (OR 0.36, 95% CI 0.18-0.71; P<.001. In the fully adjusted regression model for caregivers of persons living with cancer, no variables were found to be statistically significantly associated with patient portal use at the .05 level. In our analysis of NSOC survey data, we found differences between how dementia and cancer caregivers access the patient portal. As the patient portal is a common method of connecting caregivers with information from clinic visits, future research should focus on understanding how the portal is used by the groups we have identified, and why.

Characteristics and Correlates of Perceived Physical and Psychological Health Among Family Caregivers Living With Persons With Advanced Dementia.

Various factors drive a care setting shift from institutional to home settings for dementia care until the latest stage of the disease, suggesting the critical role of family caregivers living with persons with dementia. This study explored the characteristics and correlates of self-reported overall physical and psychological (ie, depressive symptoms and stress) health among family caregivers living with persons with dementia in Sweden. This cross-sectional, descriptive study used baseline data from an existing music-based intervention study of persons with dementia and their family caregivers (N = 76). Multivariable linear regression analyses were performed. On average, caregivers (n = 38; mean age: 74.8 years) were slightly younger than persons with dementia (n = 38; mean age: 78.6 years). Most caregivers were female (n = 24; 63.2%) and spouses or partners of persons with dementia (n = 37; 97.4%). Caregivers' perceived relationship with their family members with dementia was the only factor associated with caregivers' self-reported overall physical health (b = -0.655, p = .046). This suggests caregivers' more frequent feeling of a good relationship with the persons with dementia was linked to better self-rated physical health among family caregivers living with persons with dementia. This study highlights the importance of family caregivers' perceived relationship with persons with dementia in the context of caregivers' self-reported physical health. Future research is needed to explore the perceived relationship from the perspectives of persons with dementia and the determinants of caregiving dyads' (persons with dementia and family caregivers) perceived relationship with each other.