The interplay of psychosis and non-compliance with fatal outcome in an adult with MSUD.

Significant progress has been achieved in enhancing early outcomes for individuals with maple syrup urine disease (MSUD), a rare metabolic disorder that leads to the accumulation of branched-chain amino acids leucine, isoleucine, and valine, where leucine is known as the primary neurotoxic metabolite. Newborn screening is helpful in early diagnosis and implementation of dietary treatment, thus reducing neurological deterioration and complications in young children. However, patients face the life-long challenge of maintaining metabolic control through adherence to a strict low-leucine diet to avoid long-term consequences of chronic hyperleucinemia, which include cognitive deficits, mood disorders, and movement disorders. This case report exemplifies the complex involvement of MSUD in adult survivors. Despite presenting early in life, the patient thrived until the onset of psychiatric symptoms. The subject of this case is a 25-year-old woman with MSUD, who remained in her usual state of health until presentation to the emergency department (ED) with psychosis and altered mental status. However, due to a lack of medical records and poor communication, there was a delay in considering MSUD as a primary cause of her psychiatric symptoms. Although a genetics consultation was later arranged and efforts were made to decrease plasma leucine to the therapeutic range, these interventions proved inadequate in halting her deterioration in health. Her condition worsened within 72 h, culminating in her untimely death. This case emphasizes the comorbidity of psychiatric involvement in MSUD, which contributes to metabolic decompensation that can lead to cerebral edema and death. This case also highlights the pressing need for enhanced strategies for the acute management and long-term care of MSUD patients with psychiatric involvement, particularly in scenarios where mental disturbance could lead to noncompliance.

Global rural health disparities in Alzheimer's disease and related dementias: State of the science.

INTRODUCTION: Individuals living in rural communities are at heightened risk for Alzheimer's disease and related dementias (ADRD), which parallels other persistent place-based health disparities. Identifying multiple potentially modifiable risk factors specific to rural areas that contribute to ADRD is an essential first step in understanding the complex interplay between various barriers and facilitators. METHODS: An interdisciplinary, international group of ADRD researchers convened to address the overarching question of: "What can be done to begin minimizing the rural health disparities that contribute uniquely to ADRD?" In this state of the science appraisal, we explore what is known about the biological, behavioral, sociocultural, and environmental influences on ADRD disparities in rural settings. RESULTS: A range of individual, interpersonal, and community factors were identified, including strengths of rural residents in facilitating healthy aging lifestyle interventions. DISCUSSION: A location dynamics model and ADRD-focused future directions are offered for guiding rural practitioners, researchers, and policymakers in mitigating rural disparities. HIGHLIGHTS: Rural residents face heightened Alzheimer's disease and related dementia (ADRD) risks and burdens due to health disparities. Defining the unique rural barriers and facilitators to cognitive health yields insight. The strengths and resilience of rural residents can mitigate ADRD-related challenges. A novel "location dynamics" model guides assessment of rural-specific ADRD issues.

Medical Aid in Dying: How Might U.S. Policy Prevent Suffering at the End of Life?

Medical aid in dying refers to policies that allow terminally ill patients to seek assistance from their medical providers to obtain medications to hasten death. In this paper, we used a 7-point policy analysis model to examine the diversity of medical aid in dying policies that exist in jurisdictions (states and territories) in the U.S. and the implications of these policies for suffering at end of life. As of this writing, these practices are available in 12 jurisdictions, including 11 states and the District of Columbia. Legalization has occurred via statutory approaches in 10 jurisdictions and permissive approaches in two jurisdictions. We discuss the structures of these laws, the requirements for participation, and the limitations created by having jurisdiction-specific policies on such broad, bioethical issues. Existing laws appear to relieve suffering in patients at end of life. Jurisdictional differences create barriers to comprehensive expansion but provide insights into practice in different contexts.

Identifying Aging Adults' Housing Preferences: An Age-Friendly Initiative.

Community planning around housing needs of older adults is, at present, very understudied. This study stemmed from a practical need to determine the housing preferences of residents as part of an Age Friendly Community initiative. Data presented in this paper focus on the quantitative component of a sequential mixed methods study examining attitudes and preferences about housing. This first phase of this project involved data collected from 1,514 residents aged 30+ using a researcher-devised survey of 43 items. There was little difference in housing preferences between older and younger respondents or among those with varying financial means. Analysis revealed the most important housing considerations were safety in home, affordability, privacy, proximity to services frequently used, and accessibility. An unexpected finding was that almost half of older respondents expressed a willingness to share a home with a roommate. There were also differences in preferences on home environment based on current marital status. Data suggests that city planners and property developers should prioritize these preferences when planning for the housing-related needs of older residents. Future research should examine the interpretation of housing preferences, such as qualitative exploration of what it means for housing to be "safe" or 'affordable.'

Conversations about Community, Connection to Place, and Housing Preferences among Aging Adults in Lexington, Kentucky.

While many researchers have called for housing to be addressed in age-friendly cities and communities, little research exists to guide communities through this process. To maximize the potential for adults to age in place, researchers partnered with a local Age-Friendly community initiative to conduct focus groups and learn more about residents' preferences related to housing and residential space. The focus group data offered a glimpse into aging residents' perspectives on housing to inform planning and development of housing in a mid-size city. This second phase of a sequential mixed methods study included qualitative focus groups with 19 aging individuals. Focus group sessions sought to better understand previously identified housing preferences, aging adults' sense of community, and their connection to place. Findings suggest that aging participants cared not only about the physical structure of their home, but also the community-based aspects of where they live. Study implications suggest that social workers, working with and alongside community members and aging-service providers who have local knowledge, can support age-friendly housing models that consider the housing preferences of older residents, as well as the resources and limitations of their community.

A Policy Mapping Analysis of the U.S. Congressional Approach to Medical Aid-in-Dying.

This study examines the goals of medical aid-in-dying (MAID) legislation introduced to the US Congress from 1994-2020 using a policy mapping analysis approach. Using congress.gov, we identified 98 bills, 23 bills were analyzed in this study. Most of the bills aimed to restrict the use of federal funds, to regulate the drugs commonly used for MAID, to prohibit the development of policies or practices supporting MAID, and to regulate practitioners' roles in MAID. In practice, these bills would limit patient access to MAID by restricting drugs, funds, health care services, legal assistance, policy, and research. These findings suggest there lacks congressional support for MAID, even though polls of the public are divided yet favorable. Policymakers who support MAID should consider affirmative policies that 1) prevent MAID policies from discriminating against vulnerable groups, 2) support funding to study the use of MAID, and 3) build avenues to allow all qualified people to access MAID in places where it is legal.

Comparison of behaviors characteristic of autism spectrum disorder behaviors and behavioral and psychiatric symptoms of dementia.

BACKGROUND: Similarities exist in behavioral expression of autism spectrum disorder (ASD) and Alzheimer's disease and related dementias (ADRD). The purpose of this study was to assess presence of behavioral and psychiatric symptoms of dementia (BPSD) and ASD-like behaviors in adults with ADRD. METHODS: Using a cross-sectional design, data from University of Kentucky Alzheimer's Disease Center participant cohort were used. Hierarchical linear regression was used to assess (1) the relationship between ASD-like behaviors (measured by the Gilliam Autism Rating Scale-Second Edition, GARS-2) and BPSD measured by the Neuropsychiatric Inventory (NPI), and (2) the relationship between ASD-like behaviors and dementia severity (measured by the Clinical Dementia Rating [CDR] sum of boxes), when controlling for BPSD. RESULTS: Complete data were available for 142 participants. Using α of 0.05, analyses identified ASD behaviors were significantly associated with BPSD severity ratings (r = 0.47; p < 0.001) and dementia severity (r = 0.46; p < 0.001). GARS-2 explained 6.1% (p < 0.001) of variance in CDR sum of boxes when controlling for NPI and other covariates. DISCUSSION: There is significant overlap in behaviors characteristic of ASD and BPSD as assessed by the NPI and GARS-2, despite the use of these instruments in disparate developmental vs. aging settings. ASD behaviors appear to not be solely present in early childhood as a manifestation of ASD but are also present in older adults with neurodegenerative cognitive impairment. Such associations warrant additional research into causation, assessment, and behavioral interventions to further enable new therapeutic approaches targeting ASD behaviors across the lifespan.

The Tele-STELLA protocol: Telehealth-based support for families living with later-stage Alzheimer's disease.

AIMS: We aim to establish the feasibility and acceptability of the Tele-STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. DESIGN: This is a multi-component, quasi-experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia. METHODS: Family Care Partners (n = 124) for persons with Alzheimer's disease will participate in two 8-week videoconferencing components that address behavioural symptoms-in both the persons with Alzheimer's disease and their Care Partners. In the first component ('Nova'), Care Partners work with one nurse for an hour/week for 4 weeks, then they join a small group for another 4 weeks. In the second component ('Constellation'), Care Partners work in a larger group to hone skills and knit supportive relationships. Behavioural symptom frequency and Care Partner reactivity to the behaviours will be measured prior to, during and after the intervention. The study is funded by the United States National Institute on Aging (R01AG067546); funding was initiated as on February, 2021. DISCUSSION: Tele-STELLA fills a gap in current videoconference-based psychoeducational interventions in that it offers real-time interaction with nurses and peers. The intervention was designed with feedback by pilot participants. This study will assess Tele-STELLA in its current, novel format; thus, preparing it for a larger, future randomized controlled trial. IMPACT: Tele-STELLA addresses symptoms that occur in the later stages of dementia, providing families with tools to facilitate effective behavioural management. Because Tele-STELLA is implemented via videoconferencing, it targets Care Partners who face barriers to support, such as cost and transportation. TRIAL REGISTRATION: This trial is registered with ClinicalTrials.gov (#NCT04627662).

Structural Characteristics of Nursing Homes and Social Service Directors that Influence Their Engagement in Disaster Preparedness Processes.

Nursing home residents are an at-risk population during disaster situations, and nursing homes face unique challenges in managing disasters. Nursing home social service departments can support their nursing homes in meeting the needs of residents during disasters, yet there is little research exploring their involvement. To address this gap, we use secondary data from the 2019 National Nursing Home Social Service Directors' study to explore social service directors' and their departments' involvement in disaster preparedness and response, and personal- and nursing home-level characteristics that predict involvement. Results show that nursing home social service directors and their staffs are predominantly involved; 61.9% (n = 562) of respondents stated always participating, and an additional 20.3% (n = 184) usually participating in disaster planning. The age of the director significantly predicted involvement, with older directors being most likely to always be involved. Further research is needed to understand why some nursing homes involve their social service directors in disaster planning and others do not, what roles those directors play, and to identify strategies to increase involvement within this role.

Identifying Adaptive and Maladaptive Behaviors Following a Diagnosis of Mild Cognitive Impairment.

INTRODUCTION: Individual reactions to a diagnosis of mild cognitive impairment (MCI) can vary in a wide range of both adaptive and maladaptive responses. Understanding such reactions to diagnosis is important to maximize adaptive responses that can promote continued independence. METHODS: In this pilot study, the Aging and Memory Quality of Life survey was developed to facilitate an understanding of adaptive and maladaptive behaviors results from a diagnosis of MCI. The Aging and Memory Quality of Life was administered to 45 individuals diagnosed with MCI and 45 cognitively normal participants serving as control subjects matched for age, sex, and education. Study partners were surveyed to collect corroborating and or discrepant observer responses. RESULTS: Inconsistent with study partners' reporting, MCI subjects may be underreporting physical limitations, and overreporting medication compliance. MCI subjects identified challenges to managing financial affairs. DISCUSSION: Developing strategies to circumvent the development of maladaptive behaviors could significantly reduce morbidity and mortality in MCI patients.

Considerations for Developing Online Bereavement Support Groups.

The loss of a family member or friend can have profound psychological and physical implications, particularly for individuals without bereavement support services. Online support groups can be an effective means of extending services beyond the traditional modes of delivery. This is especially true for populations that include isolated individuals and those with limited support networks, limited transportation, challenging time commitments, or reside in communities with limited services available. The literature over the last 10 years was reviewed to discern the potential opportunities and challenges of providing online bereavement support group services. Discussed are challenges for recruitment of participants, availability of technology resources, addressing privacy and confidentiality issues, participants' knowledge of technical equipment, legal considerations, ethical considerations, accessibility, and other best practices. Diverse populations such as adolescents, older adults, and rural communities must be uniquely considered when using online support groups.

A Theoretical Exploration of Live Discharge from Hospice for Caregivers of Adults with Dementia.

Patients with dementia may be discharged from hospice if their condition stabilizes. The loss of professional support and an already complex grief process needs careful attention. A live discharge presents a unique experience for each hospice patient, caregiver, and hospice team, which varies from traditional bereavement theories used to describe the grieving process. This article explores live discharge from hospice for caregivers of adults with dementia through a theoretical lens of Symbolic Interactionism (SI) and Attachment Theory (AT). The theories of SI and AT support and assist in understanding the experience of caregivers who lose hospice support due to ineligibility. In addition, caregivers watch the gradual deterioration and psychological loss of someone with dementia while they remain alive described as an ambiguous loss. Ambiguous loss as a subset of traditional bereavement theories provides a framework for this exploration and provides a relevant illustration of the complex needs. This article will conclude with implications for social work practice. It is important for hospice clinicians to be aware of current termination practices necessary to manage appropriate attachments, support the symbolic meaning of the hospice experience, validate the ambiguous losses, and maintain a sense of hope through a live discharge from hospice.

Dying Online: An Analysis of End-of-Life Narratives.

Technology is changing many aspects of our daily lives including how we share our experiences. While there have been many advances in technology to sustain life, it has also led to changes in how we die. This study utilized publicly available online narratives (vlog postings) written by individuals diagnosed with a terminal illness to explore themes on what dying individuals wished to say about their experiences (n = 39). While the content of the messages varied, universally all postings provided advice for living a good life. The implications of these narratives are still unknown. Questions remain about the role online peer support plays in the dying process and the extent to which sharing one's digital story can affect others online. The act of being introspective at the end of life and the desire for social connection is similar to other forms of social work intervention such as dignity therapy suggesting an opportunity for further exploration. Additionally, these end-of-life narratives could also serve as a tool for educating future social work professionals about the experiences of those diagnosed with a terminal illness.

Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers' Perceptions of Supports and Services.

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers' unique concerns and challenges and that build upon their existing care networks are recommended.

What Can an Evaluation of the AGESW Predissertation Fellows Program Tell Us about the Mentoring Needs of Doctoral Students?

Good mentoring is a key variable for determining success in completing a doctoral program. The Association for Gerontology Education in Social Work (AGESW) provides leadership in the areas of gerontological social work education, research, and policy. In 2010, AGESW began offering the Pre-Dissertation Fellows Program (PDFP) to enhance social work doctoral students' professional development and skillset for academia. The purpose of this study was to examine student participants' perceptions of the PDFP in its role to providing mentorship and training for an academic position that encompasses research, teaching and professional service. This qualitative study examined eight cohorts (2010-2018) of the AGESW PDFP (N = 85). Participants identified a number of aspects of professional development gained, gratitude for the training, an appreciation for candid advice received, and areas of professional development they felt they were lacking within their doctoral training. Implications for doctoral education, doctoral mentorship programs, and the AGESW pre-dissertation program are discussed. Further, programs such as AGESW pre-dissertation fellowship program can serve as a model for other doctoral training initiatives to prepare students to work in academia.

Turning Doctoral Students into Faculty in Gerontological Social Work: The AGESW Experience.

Developing faculty interested in aging may help social work meet the needs of our growing aging population. However, doctoral students need a variety of supports to complete PhDs and become gerontological social work faculty. This study explored one program's role in supporting the development of social work doctoral students to faculty in gerontology. An e-mail invitation was sent to all former participants (2010-2016 cohorts) of the Association for Gerontology Education in Social Work (AGESW) Pre-Dissertation Fellows Program (PDFP). The 38-question online survey consisted of Likert-type scales, multiple answers, and one open-ended question per section about the program's impacts on their academic career development in teaching, research, mentoring, and support. Forty-five respondents, representing all six cohorts, completed the survey. More than half reported that the PDFP contributed to their ability to publish their research (64.4%, n = 29), grow their professional network (86.7%, n = 39, and teach (55.5%, n = 25). Doctoral programs provided different experiences than the PDFP, including mentoring, methodological training, professional development, networking, and peer support. Results suggest the PDFP provides content recipients value that supplements instruction received in their institutions. The program's ability to connect students to each other and to national leaders enhances their career development and socialization into academic roles.

Using Social Network Analysis to Assess Professional Network Development among AGESW Pre-Dissertation Fellowship Program Participants.

Professional networks are important for the success of doctoral students and early career faculty members, yet there is little research about what types of experiences help emerging scholars develop these networks. Social network analysis may be an ideal method for studying the effectiveness of training programs in nurturing network development among emerging scholars. We describe one application of this method, which was used to examine the professional networks formed through participation in the Association of Gerontological Education in Social Work (AGESW)'s Pre-Dissertation Fellowship Program (PDFP). Alumni (n = 12) from the first three cohorts of the program (2010-2012) reported meeting an average of 20 scholars (SD = 13.2) through AGESW, which led to potential professional interactions and collaborations on conference presentations and manuscripts. Although challenges with missing data limited the conclusions that can be drawn, we find that this method holds promise for helping to identify key factors that facilitate professional network development in pre-dissertation training programs such as the PDFP.

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer's disease during natural disasters.

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer's disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a "perfect storm" of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.