Factors Affecting Resilience and Prevention of Alzheimer's Disease and Related Dementias.

Alzheimer's disease (AD) is a devastating, age-associated neurodegenerative disorder and the most common cause of dementia. The clinical continuum of AD spans from preclinical disease to subjective cognitive decline, mild cognitive impairment, and dementia stages (mild, moderate, and severe). Neuropathologically, AD is defined by the accumulation of amyloid ß (Aß) into extracellular plaques in the brain parenchyma and in the cerebral vasculature, and by abnormally phosphorylated tau that accumulates intraneuronally forming neurofibrillary tangles (NFTs). Development of treatment approaches that prevent or even reduce the cognitive decline because of AD has been slow compared to other major causes of death. Recently, the United States Food and Drug Administration gave full approval to 2 different Aß-targeting monoclonal antibodies. However, this breakthrough disease modifying approach only applies to a limited subset of patients in the AD continuum and there are stringent eligibility criteria. Furthermore, these approaches do not prevent progression of disease, because other AD-related pathologies, such as NFTs, are not directly targeted. A non-mutually exclusive alternative is to address lifestyle interventions that can help reduce the risk of AD and AD-related dementias (ADRD). It is estimated that addressing such modifiable risk factors could potentially delay up to 40% of AD/ADRD cases. In this review, we discuss some of the many modifiable risk factors that may be associated with prevention of AD/ADRD and/or increasing brain resilience, as well as other factors that may interact with these modifiable risk factors to influence AD/ADRD progression. ANN NEUROL 2024.

The Listening Guide: Illustrating an underused voice-centred methodology to foreground underrepresented research populations.

AIM: To highlight the value of utilizing the Listening Guide methodology for nursing research and provide an exemplar applying this methodology to explore a novel concept in an underrepresented group-inner strength in persons newly diagnosed with mild cognitive impairment along with their care partners. DESIGN: Methodology discussion paper. METHODS: The exemplar study used the Listening Guide methods for data elicitation and analysis. Methods included adaptations for the study population and novice qualitative researchers. RESULTS: The Listening Guide methodology with adaptations enabled the research team to centre the voices of persons living with mild cognitive impairment, highlight an abstract phenomenon and attend to the influences of the sociopolitical context. Further, this methodology helped address common challenges emerging qualitative researchers encounter, including understanding methods of application, engaging reflexively and immersing in the data. CONCLUSION: The Listening Guide is a voice-centred qualitative methodology that is well suited to foreground the experiences of groups underrepresented in research and explore emerging phenomena. IMPLICATIONS FOR NURSING: Nurses are central to striving for health equity. The Listening Guide methodology offers a valuable and accessible research tool to understand the experiences and needs of underrepresented groups and shape healthcare in response. IMPACT: The Listening Guide methodology can be broadly applied to research with persons with mild cognitive impairment, and other underrepresented groups, to explore other phenomena beyond inner strength and move the science forward in representing the perspectives of groups underrepresented by research. PATIENT OR PUBLIC CONTRIBUTION: Persons living with cognitive impairment and their care partners participated in study conceptualization, interview guide development, methods development and dissemination plans.

Time out weekly smile: A pilot test of a virtual respite program.

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.

Opportunities for Poetic Analysis in Qualitative Nursing Research.

BACKGROUND: The voices of people living with serious, life-limiting illnesses are often underrepresented in research. Furthermore, a biomedical bias toward treatment and stigma associated with illness prevents healthcare providers from engaging with topics critical for people living with serious illness, such as existential communication and inner strength. Poetry is an established method of analysis and dissemination in qualitative research but is underutilized by nursing researchers. OBJECTIVES: The purpose of this article is to demonstrate the inherent opportunities in using poetry in nursing research to highlight the voices and issues of people whose experiences are outside the assumed norms of the biomedical paradigm. METHODS: We apply methods of poetic analysis to qualitative data sets that highlight the voice of people living with serious illness-in naturally occurring palliative care conversations and dyadic interviews of people with dementia and their care partners. Methods of poetic analysis include poetic transcription and voice poems. RESULTS: Methods of poetic analysis allowed us to engage with the data reflexively to intensify and evoke the deeper meaning of narratives. Poetic analysis served to center the participant's voices by using their own words to demonstrate themes. Poems are a uniquely accessible method of disseminating complex findings, as poems relay layered cognitive and emotional meaning resonant of universal human experiences in a concise and relatable format. DISCUSSION: Especially in circumstances where participant's voices are underrepresented, poetic analysis enables nurse researchers to challenge normative assumptions and reimagine a difference-centered society. Our findings offer opportunities to incorporate poetry into clinical and research nursing training to better meet the needs of the populations we serve.

Feasibility and acceptability of a web-based advance care plan for dementia.

While advance care planning (ACP) can help elicit preferences and is associated with improved end-of-life outcomes, persons living with dementia (PLWD) in nursing homes are rarely included in ACP. Web-based decision aids are a readily available tool to engage PLWD in ACP, but none are designed for the unique needs of PLWD, particularly those residing in nursing homes. Our Memory Care Wishes (OMCW) was adapted from a publicly available web-based ACP tool in collaboration with dementia care experts. This study aimed to explore the acceptability of OMCW. We used a convergent, mixed methods design to describe PLWD and surrogates' experiences using the OMCW website. Participants described ease of use, comfort with viewing, helpfulness for planning, and likelihood to recommend. Overall, OMCW is acceptable, however, PLWD continue to have difficulties understanding and engaging with some website content. Modifications were incorporated based on these findings, setting the stage for implementation and effectiveness testing.

A dimensional analysis of inner strength in people ageing with serious illness.

Nursing models of care show promise in addressing the needs of older adults facing serious illness through supporting inner strength. However, previous conceptual and theoretical models of inner strength are limited. This concept analysis used dimensional analysis methods to explore inner strength in people ageing with serious illness to address limitations by defining a pragmatic, data-driven model. This study analyzed published literature of adults with serious illness that describes inner strength. Thirty articles were selected after review. The result was an explanatory matrix that describes inner strength from the perspective of where have I been, where am I going? within the context of being a person who is living and dies and you have a serious illness. The conditions spotlighting by actors around me and taking stock of others and ideas lead to processes of looking in/looking out and seeing me as I'm seen. The final consequence of this process is meeting me. This updated concept analysis of inner strength improves upon previous models by providing a clinically relevant situation-specific model of inner strength for people with serious illness. Implications for nursing scholarship and practice are described including exploration of person-centered care, relational practice, and health communication.

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

An integrative review of measures of transitions and care coordination for persons living with dementia and their caregivers.

Introduction: High rates of hospital visits and readmissions are common among persons living with dementia, resulting in frequent transitions in care and care coordination. This paper identifies and evaluates existing measures of transitions and care coordination for persons living with dementia and their caregivers. Methods: This integrative review builds off a prior review using a systematic search of online databases (PubMed, EBSCO, CINAHL, PsycInfo, and Scopus) to identify records and locate reports (or articles) that use measures of care transitions and care coordination. Identified measures were compared to the Alzheimer's Association's Dementia Care Practice Recommendations to evaluate strengths and weaknesses of the measure in this population, such as if measures were person- and family-centered. Results: Seventy-one reports using measures of transitions in care and care coordination for persons living with dementia and their caregivers were identified. There were multiple measures identified in some reports. Three main areas of measures were classified into: identification of the population (3 measures, 8 reports), transitional care and care coordination delivery (14 measures, 17 reports), and transitional care and care coordination outcomes (e.g., health-care use, cost, and mortality; 17 measures, 60 reports). A strength of the three main areas of measures was that a portion of the measures were person- and family-centered. Variability in the operational definitions of some measures and time intensiveness of collecting the measure (e.g., number of items, the time it takes to complete the items) were common weaknesses. Discussion: Transitions and care coordination measures are varied across studies targeted at persons living with dementia and their caregivers. Existing measures focus heavily on outcomes, specifically health-care resource use, and cost, rather than the elements of transitional care or care coordination. Future measure development focused on care transitions and service coordination is needed.