Comparison of Behaviors Characteristic of Autism Spectrum Disorder Behaviors and Behavioral and Psychiatric Symptoms of Dementia
November 23, 2020
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 a of 0.05, analyses identified ASD behaviors were significantly associated with BPSD severity ratings (r¼0.47; p<0.001) and dementia severity (r¼0.46; 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.
September 16, 2020
The SARS-CoV-2 pandemic has wrought tremendous upheaval to daily life, spreading rapidly and causing millions to contract COVID-19. The long-term effects are yet unknown, but scientists are studying the disease and searching for solutions. In geriatric clinical trials research, the problems presented by COVID-19 are multifaceted: older adults face increased risk of morbidity and mortality due to COVID-19, and so ongoing clinical trials that enroll geriatric participants have been disrupted, appropriately so, in light of these increased risks. Yet, the interruption of ongoing trials may further increase risks to older adults as critical research on treatments for highly prevalent diseases and conditions is slowed or stopped. Further, older adults are substantially underrepresented in clinical trials research, and this situation may worsen this discrepancy. Scientists in aging appreciate the necessity of older adults’ inclusion within clinical trials, but the vulnerability to increased exclusion in clinical trials of this population is high, now more than ever. Attention to clinical trial development with special attention to need for inclusion of older adults and precautions is greatly needed to sustain current efforts, at minimum, and ideally, enhance recognition of the value of including older adults in clinical trial research. The COVID-19 crisis affects every aspect of clinical trial research engagement including: recruitment and retention; ability to ensure participant safety while engaged in experimental interventions; study procedures, including consideration of remote assessments, impact on populations with health disparities, and generalizability of future results; outcome measures, including biomarker assessment; impact on the clinical trial workforce, including attrition; impact on dissemination of results and scientific collaborations, which move the clinical trial infrastructure forward; current and future funding allocations; and regulatory considerations in regards to management of altered study conduct and change of outcome measures. The purpose of this article is to highlight the impact of disasters such as the COVID 19 pandemic on geriatric clinical trials research and propose approaches for the scientific community to continue pushing forward.
June 25, 2020
Coronavirus disease 19 (COVID-19) has dramatically altered everyday life, including the field of Alzheimer’s disease (AD) research. This perspective article explores some of the ways in which COVID-19 has already impacted the field, anticipates some of the long-lasting effects, and explores strategies for addressing current and future needs. Areas of impact include study integrity, regulatory and industry issues, and participant engagement. Proposed strategies for addressing these challenges include analytic methods to deal with large degrees of missing data and development of patient-centered, user-friendly, remote data collection tools and assessments. We also highlight the importance of maintaining participant well-being as a first and constant priority.
June 5, 2020
The COVID-19 pandemic has impacted almost every facet of life. For social work professionals, the implementation of social distancing policies have altered how we interact with clients. While many areas of practice have embraced remote offerings and telehealth, use of such methods with older adults continues to be a challenge. This letter is a call to action for gerontological social workers to make efforts to close the digital divide. This issue is a matter of social justice to ensure the information and resources from technology can be accessed by all. As a profession, we must make strides to ensure individuals of all ages have access to, and the ability to use, the technological resources available to support health and well-being.
April 12, 2020
The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Furthermore, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.
April 3, 2020
OBJECTIVES: The prevalence of Alzheimer's disease and associated disorders is increasing. Rural residents in the United States have less access to memory care specialists and educational and community resources than in other areas of the country. Over a decade ago, we initiated an interdisciplinary rural caregiving telemedicine program to reach Kentucky residents in areas of the state where resources for supporting individuals with dementia are limited. Telemedicine programs involve a short informational presentation followed by a question and answer session; programs are offered 4 times a year. The purpose of this study was to explore questions asked over 1 year of the rural caregiving telemedicine program-encompassing 5 programs-to identify the scope of dementia-related knowledge gaps among attendees.
METHODS: Questions from the 5 programs were recorded and content analyzed to identify areas of frequent informational requests.
RESULTS: There were a total of 69 questions over the 5 sessions. For each program, questions ended due to time constraints rather than exhausting all inquiries. The most common topical areas of questions related to risk factors, behavioral management, diagnosis, and medications.
DISCUSSION AND IMPLICATIONS: This study highlights that rural caregivers in Kentucky have diverse dementia educational needs. Rural communities may benefit from additional, targeted resources addressing these common areas of unmet informational needs. This article is protected by copyright. All rights reserved.
March 24, 2020
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.
March 30, 2020
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.
March 28, 2020
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.
Dying Online: An Analysis of End-of-Life Narratives
February, 3, 2020
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.
December 5, 2019
Communities across the globe, including the United States, face unprecedented environmental challenges influenced by factors such as climate change and an increasing global population. This chapter will focus specifically on natural disasters. While natural disasters have always existed, the current uptick in the frequency of disaster events, growing evidence that disasters negatively affect older adults disproportionally, and larger number of older adults comprising the world’s population than any other age group make it necessary to consider the specific impacts disasters have on the older adult population. Older adults have unique needs during disasters due to vulnerabilities common in late life, as well as social isolation. This chapter details the needs of older adults across the disaster event phases: pre-disaster mitigation and preparedness, during and post-disaster response, and long-term disaster recovery. The chapter concludes with future steps for social work research, policy, and practice.
October 30, 2019
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.
October 29, 2019
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.
October 25, 2019
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.
July 22, 2019
Background and Objectives: Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer’s disease. While barriers to participation are well documented, less is known about motivations for Alzheimer’s disease clinical research participation. The purpose of this study was to explore what motivates individuals—who ultimately develop an ongoing connection to research and frequently participate—to engage and stay involved in Alzheimer’s disease research.
Research Design and Methods: Individuals who had participated in multiple Alzheimer’s disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research.
Findings: Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer’s disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement.
Discussion and Implications: These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.
June 28, 2019
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.
March 1, 2019
Across the globe, communities are facing unprecedented environmental challenges in many cases because of climate change. The increase in urbanization, the movement of people from rural communities relocating into urban areas, the issue of population density, and a rise in extreme weather are all contributing to these challenges. Although natural and manmade disasters have always existed, the increase in urbanization as a result of the movement of people into urban areas, the resulting increase in population density, and a rise in frequency of extreme weather events are factors that contribute to these challenges. There is a growing field of evidence that individuals experiencing homelessness are disproportionately impacted by disasters due to factors such as exposure to the elements, lack of resources and services, as well as disenfranchisement, and stigma associated with homelessness, all while experiencing greater occurrences of environmental injustice. The shrinking support for funding such services, increasing income inequality between classes, and cultural justifications for criminalizing poverty and homelessness contribute to our collective understanding of disaster vulnerability when experiencing homelessness. Given that there are distinct needs for individuals experiencing homelessness when affected by disasters, this article proposes recommendations for improving policy, research, and services to address these disparities. Trends in income inequality and homelessness have serious implications for planning and response, and recovery from natural or manmade disasters. As such, there is a need to periodically review progress, identify current gaps and unmet needs, and identify opportunities for improvement.magazine. If your work only appears on certain pages, include that information so it’s easier for your readers to find.
October 1, 2018
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.
July, 23, 2018
Background: Given the stigma and fear associated with Alzheimer’s disease (AD), combined with the progressive nature of the disease, the diagnosis of AD or mild cognitive impairment (MCI) is often very difficult; yet, there may still be ways to experience some positive outcomes following diagnosis. We aim to assess the psychological impact of a diagnosis of MCI or early dementia on positive well-being.
Methods: Individuals with a diagnosis of MCI or AD were mailed surveys with the Silver-Lining Questionnaire.
Results: Completed surveys were returned from 38 individuals and were analyzed in relation to demographic and cognitive data. All respondents reported at least one positive response to diagnosis, with just over a quarter reporting positive responses to at least half of the items. Positivity was not significantly related to any of the demographic or cognitive variables examined.
Conclusions: These results suggest the importance of diagnostic disclosure and the need for additional research to better understand how to maximize the likelihood of a positive responses and support healthy behaviors and future care planning.
June 1, 2018
As older persons make up an ever greater proportion of the world's population, a range of concerns are being voiced by policy-makers, program managers, and care providers about best or optimal practices for serving this population's needs during all stages of disasters. Given that age-related vulnerabilities are common in late life, this article describes existing systems of care in the United States for the provision of disaster mental health services. Second, it evaluates the evidence for disaster treatment interventions with this subgroup of the population. Third, it synthesizes the findings of recent studies focusing on screening, assessment, and treatment approaches. To advance our current system of care and to adequately respond to the mental health needs of older persons, it is advantageous to periodically review progress, identify current gaps and unmet needs, and describe opportunities for improvement.
January 1, 2017
This study used an ethnocultural approach to explore how cultural factors influenced ethnically diverse dementia caregivers' experiences and use of services. A modified thematic analysis of in-depth interviews with 15 caregivers, ranging in age from 50 to 75 years, including spouses, daughters, sons, cousins, and a friend, from three minority groups-African American, Hispanic, and South Korean caregivers-was conducted by a team of multi-lingual researchers. Caregiver stress was pervasive across all subgroups. Several themes emerged that were qualitatively different across groups, including knowledge about dementia, language barriers, religion and spirituality, and cultural differences in attitudes about caring and formal services. A two-pronged intervention model that includes a generic intervention to reduce caregiver stress along with a culturally targeted intervention tailored to a family's language, food preferences, religious practices, gender norms, and other values was recommended to more successfully reach and support these caregivers.
February 1, 2017
Although most individuals experiencing cognitive impairment (CI) reside with a caregiver, an estimated 800,000 live alone. Such individuals may have an increased risk for injury to self or others through self-neglect as a result of the CI symptoms. While persons living alone with CI have been identified as an important area for needed research, few studies have been able to examine this population due to the challenges of identifying and recruiting study participants. By using the National Health & Aging Trends Study data set, the researchers explored the characteristics to describe this population. The results of this study indicated that the majority of persons living with CI were older, widowed females who were not diagnosed with Alzheimer's or dementia but tested positive on cognitive screening measures. Further, the majority of persons living alone with CI relied on adult children and paid professionals as the primary care providers.
December 1, 2016
Among adults of all ages, the devastating consequences of disasters elicit powerful emotional responses. Most healthy older adults, aged 65 and older, will successfully recover. Nonetheless, older adults, limited by time horizons, experience different psychological outcomes relative to their younger counterparts. Financial stress has been found to predict negative psychological outcomes following disasters. Research on targeted mental health interventions for older adults following disasters is scant, and even fewer studies address the impact of financial stress. By applying the Conservation of Resources Model, which posits that posttraumatic stress symptoms arise from perceived threats to extant resources (material, personal, or social), this review explored ways in which older adults may be affected by disasters, given their age and financial resources. This review synthesized the distinct biopsychosocial risk factors of older adults, specific to expensive and potentially complex out-of-pocket medical needs. Postdisaster clinical symptoms among older adults were considered along with the influence of predisaster financial risk factors. Costly medical comorbidities, increased poverty rates, limited time horizons, and fixed incomes may leave older adults uniquely susceptible to pecuniary anxieties following disasters compared with the general population. Policy and clinical applications for public health officials, mental health workers, and emergency managers were offered. This review is a first step toward understanding the multifaceted relationship between financial status and mental wellbeing postdisaster among older adults. A synthesis of the literature provides information that can inform future decisions regarding federal and state funding of recovery initiatives targeted to older adults to enhance postdisaster mental health outcomes.