Nurse Practitioner Care, Scope of Practice, and End-of-Life Outcomes for Nursing Home Residents With Dementia.

Importance: Nursing home residents with Alzheimer disease and related dementias (ADRD) often receive burdensome care at the end of life. Nurse practitioners (NPs) provide an increasing share of primary care in nursing homes, but how NP care is associated with end-of-life outcomes for this population is unknown. Objectives: To examine the association of NP care with end-of-life outcomes for nursing home residents with ADRD and assess whether these associations differ according to state-level NP scope of practice regulations. Design, Setting, and Participants: This cohort study using fee-for-service Medicare claims included 334 618 US nursing home residents with ADRD who died between January 1, 2016, and December 31, 2018. Data were analyzed from April 6, 2015, to December 31, 2018. Exposures: Share of nursing home primary care visits by NPs, classified as minimal (<10% of visits), moderate (10%-50% of visits), and extensive (>50% of visits). State NP scope of practice regulations were classified as full vs restrictive in 2 domains: practice authority (authorization to practice and prescribe independently) and do-not-resuscitate (DNR) authority (authorization to sign DNR orders). Main Outcomes and Measures: Hospitalization within the last 30 days of life and death with hospice. Linear probability models with hospital referral region fixed effects controlling for resident characteristics, visit volume, and geographic factors were used to estimate whether the associations between NP care and outcomes varied across states with different scope of practice regulations. Results: Among 334 618 nursing home decedents (mean [SD] age at death, 86.6 [8.2] years; 69.3% female), 40.5% received minimal NP care, 21.4% received moderate NP care, and 38.0% received extensive NP care. Adjusted hospitalization rates were lower for residents with extensive NP care (31.6% [95% CI, 31.4%-31.9%]) vs minimal NP care (32.3% [95% CI, 32.1%-32.6%]), whereas adjusted hospice rates were higher for residents with extensive (55.6% [95% CI, 55.3%-55.9%]) vs minimal (53.6% [95% CI, 53.3%-53.8%]) NP care. However, there was significant variation by state scope of practice. For example, in full practice authority states, adjusted hospice rates were 2.88 percentage points higher (95% CI, 1.99-3.77; P < .001) for residents with extensive vs minimal NP care, but the difference between these same groups was 1.77 percentage points (95% CI, 1.32-2.23; P < .001) in restricted practice states. Hospitalization rates were 1.76 percentage points lower (95% CI, -2.52 to -1.00; P < .001) for decedents with extensive vs minimal NP care in full practice authority states, but the difference between these same groups in restricted practice states was only 0.43 percentage points (95% CI, -0.84 to -0.01; P < .04). Similar patterns were observed in analyses focused on DNR authority. Conclusions and Relevance: The findings of this cohort study suggest that NPs appear to be important care providers during the end-of-life period for many nursing home residents with ADRD and that regulations governing NP scope of practice may have implications for end-of-life hospitalizations and hospice use in this population.

Assessing the Quality of ChatGPT Responses to Dementia Caregivers' Questions: Qualitative Analysis.

Background: Artificial intelligence (AI) such as ChatGPT by OpenAI holds great promise to improve the quality of life of patients with dementia and their caregivers by providing high-quality responses to their questions about typical dementia behaviors. So far, however, evidence on the quality of such ChatGPT responses is limited. A few recent publications have investigated the quality of ChatGPT responses in other health conditions. Our study is the first to assess ChatGPT using real-world questions asked by dementia caregivers themselves. objectives: This pilot study examines the potential of ChatGPT-3.5 to provide high-quality information that may enhance dementia care and patient-caregiver education. Methods: Our interprofessional team used a formal rating scale (scoring range: 0-5; the higher the score, the better the quality) to evaluate ChatGPT responses to real-world questions posed by dementia caregivers. We selected 60 posts by dementia caregivers from Reddit, a popular social media platform. These posts were verified by 3 interdisciplinary dementia clinicians as representing dementia caregivers' desire for information in the areas of memory loss and confusion, aggression, and driving. Word count for posts in the memory loss and confusion category ranged from 71 to 531 (mean 218; median 188), aggression posts ranged from 58 to 602 words (mean 254; median 200), and driving posts ranged from 93 to 550 words (mean 272; median 276). Results: ChatGPT's response quality scores ranged from 3 to 5. Of the 60 responses, 26 (43%) received 5 points, 21 (35%) received 4 points, and 13 (22%) received 3 points, suggesting high quality. ChatGPT obtained consistently high scores in synthesizing information to provide follow-up recommendations (n=58, 96%), with the lowest scores in the area of comprehensiveness (n=38, 63%). Conclusions: ChatGPT provided high-quality responses to complex questions posted by dementia caregivers, but it did have limitations. ChatGPT was unable to anticipate future problems that a human professional might recognize and address in a clinical encounter. At other times, ChatGPT recommended a strategy that the caregiver had already explicitly tried. This pilot study indicates the potential of AI to provide high-quality information to enhance dementia care and patient-caregiver education in tandem with information provided by licensed health care professionals. Evaluating the quality of responses is necessary to ensure that caregivers can make informed decisions. ChatGPT has the potential to transform health care practice by shaping how caregivers receive health information.

Teamwork and Nurse Care Coordination in Home Healthcare.

Home healthcare agencies provide interdisciplinary care to millions of individuals annually. Care is typically led by registered nurses who often determine additional disciplines need to be included in the plan of care. We found that, although persons living with dementia represent about 30% of the home healthcare population, data from our home healthcare system showed that over a 1-year period with 36,443 home care episodes, only 29.6% had one or more social worker visits. Recognizing Alzheimer's disease-related dementia as a terminal condition and shifting toward a palliative care approach can be a challenge in home healthcare where care is focused on restorative care or rehabilitative goals with a primary focus on improvement in condition. The goal of this article is to present insights into nurse-led care coordination and teamwork and provide implications for practice.

General practice nurse perceptions of barriers and facilitators to implementation of best-practice dementia care recommendations-a qualitative interview study.

INTRODUCTION: With an aging population and a growing prevalence of people living with dementia, the demand for best-practice dementia care in general practice increases. There is an opportunity to better utilise the nurse role within the primary care team to meet this increasing demand in the provision of care for people living with dementia. However, general practice nurses have limited knowledge in the provision of best-practice care for people living with dementia and their carer(s). A number of best-practice dementia care recommendations contained in the Australian Clinical Practice Guidelines and Principles of Care for People with Dementia have been identified as highly relevant to the role of the general practice nurse. AIMS: To explore general practice nurses' perspectives on published best-practice dementia care recommendations relevant to their role and identify barriers and facilitators to their implementation into clinical practice. METHODS: Thirteen Australian general practice nurses took part in this qualitative interview study. The research questions for this study were addressed within a paradigmatic framework of social constructionism. Data were transcribed verbatim and thematically analysed. RESULTS: There was a high level of agreement between general practice nurses that the recommendations were important, reflected best-practice dementia care and were relevant to their role. However the recommendations were perceived as limited in their usefulness to nurses' clinical practice due to being too vague and lacking direction. Four main themes were identified describing barriers and facilitators to operationalising best-practice dementia care.: creating a comfortable environment; changing approach to care; optimising the general practice nurse role and working collaboratively. Nine sub-themes were described: physical environment; social environment; complexity of care; care planning for the family; professional role and identity, funding better dementia care, education, networking and resources; different roles, one team; and interagency communication. CONCLUSION: This study identified several factors that need addressing to support general practice nurses to integrate best-practice dementia care recommendations into daily clinical practice. The development of interventions needs to include strategies to mitigate potential barriers and enhance facilitators that they perceive impact on their delivery of best-practice care for people living with dementia and their carer(s). The knowledge gained in this study could be used to develop multi-faceted interventions informed by theoretical implementation change models to enable the general practice nurse to operationalise best-practice dementia care recommendations.

Community support for families affected by dementia.

This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.

Feasibility and Preliminary Impact of a Web-Based Mind Body Intervention for Older Dementia Caregivers.

BACKGROUND: Mind-body interventions focused on intentional breathing and movement have been found to mitigate the negative effects of caregiving such as such as stress, psychosocial distress, and emotional distress associated for persons living with Alzheimer's disease and related dementias. OBJECTIVE: The objective was to assess the feasibility and acceptability and preliminary impacts of our 12-week mind body intervention "Gentle Yoga and Yogic Breathing" for caregivers of persons living with dementia on health outcomes including mutuality, depression and anxiety, loneliness and social support, quality of life, and physical function. METHODS: We conducted a single-group cohort study in which 20 caregivers were enrolled. Data were collected at baseline and at the 12-week post-intervention endpoint. RESULTS: The intervention was acceptable; 75% (n = 15/20) completed the study; 16 completed post-study questionnaires. Very few experienced technical issues; 31% (n = 3) most commonly reported as poor internet connectivity, 75% (n = 12/16) perceived a health benefit, 88% (n = 14/16) perceived improved day-to-day mood, and 100% (n = 16/16) would recommend the intervention to other caregivers. Although there was minimal change from baseline to 12 weeks, for health outcomes, there were very small improvements noted in anxiety and overall health. There were no reported adverse events. CONCLUSION: The intervention was well received and is feasible and acceptable for future studies of stress and health management interventions for caregivers of persons living with dementia.Registered with https://www.ClinicalTrials.gov (NCT03853148).

El arte gráfico como medio de comunicación y cuidados en personas con demencia temprana y Alzhéimer / A arte gráfica como meio de comunicação e cuidado em pessoas com demência precoce e Alzheimer / Graphic art as a means of communication and care in people with early dementia and Alzheimer’s

El presente trabajo analiza la repercusión de la técnica de grabadono tóxica Collagraph, en personas con Demencia tempranatipo Alzhéimer, en el programa de educación artística “Retalesde una vida”. El objetivo es conectar a los participantes conprogramas de carácter cultural para fomentar la comunicacióne interacción entre participantes. La experiencia se llevó a caboen el Centro de Referencia Estatal para personas con Alzheimery otras Demencias de Salamanca (CREA). Una vez adaptadala metodología del taller a las características personales y desalud de las personas enfermas de Alzheimer, se considera lautilización del grabado genera importantes beneficios en losparticipantes, relacionados con el incremento de la inteligenciacristalizada, la conducta prosocial y la valoración positiva desí mismos, favoreciendo la inclusión social y familiar.Asimismo, el empleo del grabado puede ofrecer un soporte deayuda terapéutica individual y cooperativa a los participantes,desarrollar habilidades funcionales, sociales y cognitivas, ampliandosus recursos emocionales y disfrutar de la experiencia. A suvez fortalecen su autoestima y seguridad ante su capacidady valía. Por último, planteamos una serie de pautas para laplanificación e implementación de este proceso artístico paraque sirva de referente a profesionales de la salud.(AU)

The present work analyzes the repercussion of the non-toxic engraving technique Collagraph, in people with EarlyAlzheimer’s Dementia, in the artistic education program “Retalesde una vida”. The objective is to connect the participants withprograms of a cultural nature to encourage communication and interaction between participants. The experience wascarried out at the State Reference Center for people withAlzheimer’s and other Dementias of Salamanca (CREA). Oncethe methodology of the workshop has been adapted to thepersonal and health characteristics of people with Alzheimer'sdisease, it is considered that the use of engraving generatesimportant benefits in the participants, related to the increasein crystallized intelligence, prosocial behavior and positiveassessment. of themselves, favoring social and family inclusion.Likewise, the use of engraving can offer support for individualand cooperative therapeutic help to the participants, developfunctional, social and cognitive skills, expanding theiremotional resources and enjoying the experience. In turn,they strengthen their self-esteem and security in the faceof their ability and worth. Finally, we propose a series ofguidelines for the planning and implementation of this artisticprocess so that it serves as a reference for health professionals.(AU)

O presente trabalho analisa a repercussão da técnica degravura atóxica Collagraph, em pessoas com DemênciaInicial de Alzheimer, no programa de educação artística“Retales de una vida”. O objetivo é conectar os participantes aprogramas de cunho cultural para estimular a comunicação ea interação entre os participantes. A experiência foi realizadano Centro Estadual de Referência para Pessoas com Alzheimere outras Demências de Salamanca (CREA). Uma vez quea metodologia da oficina foi adaptada às característicaspessoais e de saúde das pessoas com doença de Alzheimer,considerase que o uso da gravura gera importantes benefíciosnos participantes, relacionados ao aumento da inteligênciacristalizada, comportamento prósocial e avaliação positivade si mesmos, favorecendo a inclusão social e familiar.Da mesma forma, o uso da gravura pode oferecer suporte paraajuda terapêutica individual e cooperativa aos participantes,desenvolver habilidades funcionais, sociais e cognitivas, ampliandoseus recursos emocionais e desfrutando da experiência. Porsua vez, fortalecem sua auto-estima e segurança diante de suacapacidade e valor. Por fim, propomos uma série de diretrizespara o planejamento e implementação desse processo artísticopara que sirva de referência para os profissionais de saúde.(AU)

Peer Support for Caregivers of People Living with Posterior Cortical Atrophy in Melbourne, Australia: A Feasibility Study.

Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers' mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.

Do clinical guidelines support person-centred care for women affected by dementia: A content analysis.

BACKGROUND: Dementia disproportionately affects women including persons living with dementia and caregivers. Person-centered care, rather than disease-focused, is recommended to improve care for affected persons including caregivers. General practitioners play a central role in dementia care but find it challenging due to inadequate training. The study aimed to assess if and how dementia guidelines provide clinicians with guidance on person-centred care for women affected by dementia. METHODS: We searched for publicly available English-language guidelines on the overall management of dementia in MEDLINE, EMBASE and the Guidelines International Network repository. We employed deductive and summative content analysis, and categorized person-centered care guideline content based on established frameworks, and conveyed our results using summary statistics, text, and tables. RESULTS: We reviewed 15 guidelines published from 2006 to 2020 in eight countries. Few (4, 23%) involved persons living with dementia or caregivers in guideline development. Regarding general person-centred care, guidelines mostly addressed the domains of exchange information (93%), share decisions (93%), enable self-management (93%) and address emotions (87%), while few offered content on manage uncertainty (33%) or foster a healing relationship (13%). Regarding dementia-specific person-centred care, most guidelines addressed intersectionality (tailoring care for diverse characteristics) (80%), but few included content on the domains of quality of life (67%), dignity (53%) or sex/gender issues (20%). Even when mentioned, the guidance was typically brief. We identified 32 general and 18 dementia-specific strategies to achieve person-centered care by compiling information from these guidelines. CONCLUSIONS: This study identified inconsistent and insufficient guideline content on person-centred care for women with dementia. Compiled strategies for achieving person-centred care could be used by developers to enhance existing and future dementia guidelines; and inform the development of policies or programs, education, tools for clinicians, and quality improvement measures for evaluating dementia care. Future research is crucial for promoting person-centred dementia care for women living with dementia.

Do people with dementia and carers get what they need? Barriers in social care and carers needs assessments.

BACKGROUND: People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care. METHODS: Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data. FINDINGS: Twenty-seven unpaid carers (n = 21) and professionals (n = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services. CONCLUSIONS: To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care.

Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.

This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice.

Experiences of Indonesian people with dementia and carers undertaking an online-delivered exercise program.

Participating in physical activity is beneficial for older people with dementia. Little is known however about the perceptions of people living with dementia undertaking an online-delivered exercise program. This study aimed to explore the experiences and perceptions of older people with dementia and their carers in Indonesia participating in an online-delivered exercise program, and factors that may influence acceptability to the program. An exploratory qualitative study design using semi-structured interviews was used. Data were recorded, transcribed verbatim, translated into English, and analyzed thematically. Twelve participants with dementia (mean age = 63.3 years) and 30 carers (26 family carers and 4 paid carers) (mean age = 37.9 years) were interviewed separately. Seven themes were identified: (i) Motivating factors to participate; (ii) Benefits for people with dementia; (iii) Impacts on carers; (iv) Challenges and enablers to exercising; (v) Carers' strategies for exercise engagement; (vi) Roles, relationships and supports; and (vii) Participants' receptiveness to online delivery of the exercise program. This study illustrated that an online-delivered exercise program was acceptable for people with dementia and their carers in Indonesia and reinforced the importance of carers' support for the exercise program. These findings can help physiotherapists and other exercise practitioners in considering the aspects of delivery that people with dementia and their carers value in participating in online-delivered exercise programs.

Duelo anticipado en familiares de personas con demencia. Variables psicosociales asociadas y su impacto sobre la salud del cuidador. Una revisión de literatura / Anticipatory grief in family caregivers of persons with dementia. Psychosocial correlates and impact on caregiver's health: A literature review

Introducción Cuidar de un familiar con demencia puede suponer consecuencias negativas en el bienestar del cuidador. Uno de los procesos que se pueden vivenciar es el duelo anticipado, que se define como los sentimientos de dolor y pérdida que aparecen en el cuidador previamente al fallecimiento de la persona cuidada. Objetivos La revisión tuvo como objetivos conceptualizar el duelo anticipado en esta población, estudiar las variables psicosociales relacionadas, y conocer las repercusiones para la salud del cuidador. Método Se realizó una búsqueda sistemática siguiendo las directrices PRISMA en las bases de datos ProQuest, PubMed, Web of Science (WOS) y Scopus, incluyendo los estudios publicados en los últimos 10 años (2013-2023). Resultados Se obtuvo un total de 160 artículos, seleccionándose 15 finalmente. Se observa que el duelo anticipado se define como un proceso ambiguo al aparecer antes de la muerte del familiar enfermo. Ser cuidadora mujer, cónyuge del familiar con demencia, tener una relación más cercana con él y/o tener una importante responsabilidad en el cuidado se asocian a una mayor probabilidad de experimentar duelo anticipado. Respecto a la persona cuidada, si esta se encuentra en una fase severa de la enfermedad, es más joven y/o presenta comportamientos problemáticos, también se observa un mayor duelo anticipado en el cuidador. El duelo anticipado tiene un impacto significativo en la salud física, psicológica y social de los cuidadores, asociándose con una mayor sobrecarga, sintomatología depresiva y aislamiento social. Conclusiones El duelo anticipado resulta un concepto relevante en el contexto de las demencias, siendo necesario incluirlo en programas de intervención para esta población (AU)

Introduction Taking care of a relative with dementia may be linked to negative consequences for the caregiver. One of the processes that can be experienced is anticipatory grief, that is defined as the feelings of pain and loss that appear in the caregiver before the death of the person cared for. Objectives The review aimed to conceptualize anticipatory grief in this population, to study the related psychosocial variables, and to know the repercussions for the health of the caregiver. Method A systematic search was made under the directives of PRISMA statement in the ProQuest, PubMed, Web of Science (WOS), and Scopus databases, including studies published in the last 10 years (2013–2023). Results A total of 160 articles were obtained, 15 being finally selected. It is observed that anticipatory grief is defined as an ambiguous process since it appeared before the death of the sick family member. Being a female caregiver, spouse of a family member with dementia, having a closer relationship with him and/or having an important responsibility in care, are associated with a greater chance of experiencing anticipatory grief. In relation to the person cared for, if he or she is in a severe phase of the disease, is younger, and/or presents problematic behaviours, there is also greater anticipatory grief in the family caregiver. Anticipatory grief has a significant impact on caregivers’ physical, psychological, and social health, being associated with greater burden, depressive symptomatology, and social isolation. Conclusions Anticipatory grief turns out to be a relevant concept in the context of dementia, being necessary to include it in intervention programs for this population (AU)

Valoración de un programa de formación de cuidadores sobre la capacidad cognitiva de personas con demencia / Assessment of a caregiver training program on the cognitive capacity of people with dementia

Objetivos: El incremento de la población mayor ha hecho que se eleve el porcentaje de personas con demencia que requieren una atención especializada dirigida a mantener o retrasar su declive cognitivo y físico. El objetivo de esta investigación ha sido analizar si un grupo de personas con demencia mejoran cognitivamente al ser atendidos por cuidadores profesionales que han sido formados en un módulo de estimulación cognitiva del programa CUIDA-2 siguiendo los principios de la atención centrada en la persona. Metodología: La muestra estuvo formada por 47 personas con demencia (divididas en grupo tratamiento y grupo control) y 5 cuidadores formales de un centro de día de personas con demencia de Granada. El grupo tratamiento de personas mayores fue atendido durante 3 meses por cuidadores que recibieron el programa de formación. Todos los participantes fueron evaluados antes y después de la intervención con diversas pruebas de evaluación cognitiva. Resultados: Las personas con demencia que fueron atendidas por los cuidadores formados en el programa mantuvieron o mejoraron sus puntuaciones en todas las pruebas analizadas, si bien estas mejoras solo fueron significativas en diversas subescalas de los test empleados. Conclusiones: Se ha comprobado que el programa de formación de cuidadores aquí analizado produce un efecto positivo para las personas con demencia, ya que ayuda a mejorar y mantener sus funciones cognitivas. Esta investigación abre nuevas líneas de trabajo en el ámbito de la intervención cognitiva en personas con demencia que pueden ser de gran utilidad cuando se trabaje con esta población (AU)

Objectives: The increase in the elderly population has led to a rise in the percentage of people with dementia who require specialized attention aimed at maintaining or delaying their cognitive and physical decline. The aim of this research was to analyze whether a group of adults with dementia improve cognitively when being attended by professional caregivers who were trained in a cognitive stimulation module of the CUIDA-2 program following the principles of the person-centered-care model. Methodology: The sample consisted on 47 people with dementia (divided into treatment group and control group) and 5 professional caregivers of a day center for people with dementia in Granada. The older people treatment group was treated for three months by caregivers who received the training program. All participants were assessed before and after the intervention with various cognitive assessment tests. Results: People with dementia who were treated by caregivers trained in the program maintained or improved their scores in all the tests analyzed, although these improvements were only significant in various subtest. Conclusions: The caregiver training program produced a positive effect in the adults with dementia, as it helps to improve and maintain their cognitive functions. This research opens new lines of work in the field of cognitive intervention in people with dementia that can be very useful when working with this population (AU)

Impacto de una investigación-acción participativa en el manejo del dolor de mayores con demencia (AU) / Impact of a participatory action research on pain management in older adults with dementia

Objetivo: Evaluar el impacto del uso de la investigación-acción participativa como método de investigación en la mejora del manejo del dolor de las personas mayores con demencia atendidos en una unidad de geriatría de agudos. Metodología: Estudio descriptivo-interpretativo enmarcado en las fases 3 y 4 de una investigación-acción participativa según el modelo propuesto por Kemmis y McTaggart. Las participantes fueron las enfermeras de la unidad de geriatría de agudos que habían participado en las 2 fases anteriores. Para la recolección de datos se usó un cuestionario con preguntas cerradas y preguntas abiertas. Para los datos cuantitativos se utilizó un análisis descriptivo y para los cualitativos, análisis del contenido. Resultados: El programa formativo, como intervención investigación-acción participativa, mejoró el conocimiento de las enfermeras. Este aprendizaje podría contribuir a modificar su práctica y a mejorar los resultados en los pacientes. Además, las enfermeras manifestaron que el programa les motivó a reflexionar sobre su práctica tanto a nivel individual como colectivo y les ha hecho tomar conciencia de la importancia que tiene un óptimo manejo del dolor en los mayores con demencia. El hecho de participar en las reuniones y discutir con sus compañeras sobre su práctica contribuyó a aprender nuevas formas de llevar a cabo acciones en relación con el manejo del dolor y promocionó el trabajo en equipo. Conclusiones: Un proceso de investigación-acción participativa puede ser una buena metodología para introducir y mantener cambios en la práctica enfermera para la mejora del manejo del dolor en personas mayores con demencia (AU)

Objective: To evaluate the impact of the use of participatory action-research as a research method to improve pain management in older people with dementia treated in a Geriatric Acute Unit. Methodology: Descriptive-interpretive study framed in phases three and four of a participatory action-research according to the Kemmis and McTaggart's model. Participants were the nurses from the acute geriatrics unit who had participated in the 2 previous phases. For data collection, a questionnaire with closed questions and open questions was used. Descriptive analysis was used for quantitative data and content analysis for categorical data. Results: The training program, as a participatory action research intervention, improved the nurses’ knowledge. This learning could help modify nurses’ practice and improve patient outcomes. In addition, the nurses stated that it motivated them to reflect on their practice both individually and collectively and made them aware of the importance of optimal pain management in the elderly with dementia. The fact of participating in the focus group and discussing their practice with their colleagues contributed to learning new ways of carrying out actions in relation to pain management and promoted teamwork. Conclusions: A participatory action-research process can be a good methodology to introduce and maintain changes in nursing practice to improve pain management in older people with dementia (AU)

Resiliencia y sobrecarga en cuidadores familiares de enfermos con demencias en Navarra / Resilience and burden in family caregivers of patients with dementias in Navarre

Objetivos: Evaluar la adaptación de los cuidadores familiares de enfermos con demencias. Otros objetivos son establecer una relación entre sobrecarga y resiliencia, analizar las diferencias significativas de sexo entre cuidadores, detectar diferencias económicas y comparar las estrategias de afrontamiento utilizadas frente al estrés. Metodología: Se han utilizado cuatro cuestionarios distintos. El primero consta de una entrevista sociodemográfica de diseño propio; el cuestionario CD-RISC 10 (Connor-Davidson Resilience Scale), el cual mide el grado de resiliencia del paciente; el tercer formulario es la Escala de Carga del Cuidador, con el cual se consiguen evaluar los diferentes grados de sobrecarga, y el último instrumento es el cuestionario COPE-28, que evalúa las diferentes formas de respuesta ante el estrés. Resultados: El perfil más común del cuidador es una mujer de entre 50 y 60 años de edad, que lleva alrededor de 6 años cuidando a un enfermo de Alzheimer. Además, la mayoría de las personas encuestadas tienen resiliencia y sobrecarga medias, aunque los hombres obtuvieron mayor resiliencia (con significación estadística) y menor sobrecarga que las mujeres (sin ella). Respecto a la resiliencia, predominan las estrategias de aceptación, afrontamiento activo y planificación, de acuerdo con los resultados en CD-RISC-10, confirmados por los de COPE-28. Conclusiones: Se ha conseguido ofrecer datos dirigidos a mejorar los enfoques de intervención psicológica en familiares cuidadores de enfermos con demencia, específicamente en el ámbito de Navarra, ya que establecen estrategias que COPE-28 ha probado que tienen correlación con la resiliencia. En definitiva, obtener evidencia científica sobre la que modificar los programas terapéuticos (AU)

Objectives: To assess the adaptation of family caregivers of patients with dementias. Other objectives are to establish a relationship between burden and resilience, to analyze significant gender differences among caregivers, to detect economic differences and to compare strategies used in order to deal with stress. Methods: Four different tests have been used. The first one consists of a sociodemographic interview made by ourselves; the CD-RISC-10 (Connor-Davidson Resilience Scale) questionnaire, which measures the degree of patient resilience; the Caregiver Burden Interview, which measures the different degrees of burden; the last one is the COPE-28 questionnaire, which evaluates the different ways of stress response. Results: It has been obtained that the most common profile of the caregiver is a woman between 50 and 60 years of age who has been caring for an Alzheimer's patient for about 6 years. Furthermore, most of the people surveyed have medium resilience and overload, although men obtained greater resilience (with statistical significance) and less overload than women (without it). Regarding resilience, acceptance, active coping and planning strategies predominate, according to the results in CDRISC-10, confirmed by those of COPE-28. Conclusions: It has been possible to offer data aimed at improving psychological intervention approaches in family caregivers of patients with dementia, specifically in the area of Navarra, since they establish strategies that COPE-28 has proven to correlate with resilience. Definitely, obtaining scientific evidence on the basis of which to modify therapeutic programs (AU)

"Falling between the cracks": Experiences of Black dementia caregivers navigating U.S. health systems.

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.

Interventions to promote dementia knowledge among racial/ethnic minority groups: A systematic review.

BACKGROUND: Certain racial/ethnic minority groups have a higher risk of developing dementia, yet studies have demonstrated that they often have limited knowledge and understanding of this disease. An increasing number of educational and advocacy programs have been developed to promote dementia knowledge. We aimed at assessing current evidence and quality regarding educational interventions for promoting dementia knowledge. METHODS: We searched for intervention studies published in English that focused on educational interventions for promoting dementia knowledge among racial/ethnic minority groups. We identified 25 relevant studies through PubMed, PsycINFO, CINAHL, and Scopus, using tailored search terms. We screened titles and abstracts, reviewed full texts, synthesized relevant evidence, and evaluated the studies' quality based on the Mixed Methods Appraisal Tool. Relevant intervention studies took place in communities, hospitals or clinics, and schools, and online. RESULTS: Most studies were conducted in the United States (n = 21), followed by the UK (n = 3). Over half of the studies included Asian/Pacific Islander groups (n = 14), followed by Black groups (n = 12) and Hispanic groups (n = 11). The intervention delivery mode varied across studies-from workshops hosted in a faith community to talk shows on YouTube. Target populations included middle-aged and older adults, caregivers and family members, health students and professionals, and elementary school students. Common content included symptoms and signs of dementia, protective and risk factors, and local resources. The assessment of study outcomes varied across studies. Improvement in dementia knowledge and attitudes towards dementia was reported in many studies. Among the included studies, intervention satisfaction was high. The overall quality of the interventions was low. CONCLUSION: Formally evaluated educational interventions promoting dementia knowledge are at an early stage. Existing published interventions showed adequate acceptability and promise in promoting better understanding and awareness of dementia in minority groups. More well-designed randomized controlled trials are needed.

Caregiver Tele-Assistance for Reduction of Emotional Distress During the COVID-19 Pandemic. Psychological Support to Caregivers of People with Dementia: The Italian Experience.

BACKGROUND: COVID-19 pandemic worsened vulnerability of patients with dementia (PWD). This new reality associated with government restriction and isolation worsened stress burden and psychological frailties in PWD caregivers. OBJECTIVE: To give tele-psychological support to caregivers and evaluate the effect of this intervention by quantifying stress burden and quality of life during the first COVID-19 lockdown. METHODS: 50 caregivers were divided into two groups: "Caregiver-focused group" (Cg) and "Patient-focused group" (Pg). Both groups received telephone contact every 2 weeks over a 28-week period, but the content of the call was different: in Cg, caregivers answered questions about the state of the PWD but also explored their own emotional state, stress burden, and quality of life. In Pg instead, telephone contacts were focused only on the PWD, and no evaluation regarding the caregiver mood or state of stress was made. Psychometric scales were administered to evaluate COVID-19 impact, stress burden, and quality of life. RESULTS: Considering the time of intervention, from baseline (W0) to W28, Zarit Burden Interview and Quality of Life-caregiver questionnaires remained unchanged in Cg as compared with baseline (p > 0.05), whereas they worsened significantly in Pg (p < 0.01), showing increased stress over time and decreased quality of life in this group. Moreover, Impact on Event Scale values improved over the weeks in Cg (p = 0.015), while they remained unchanged in Pg (p = 0.483). CONCLUSION: Caregivers who received telephone support about their mood and stress burden did not worsen their psychological state during the time of intervention, as did instead those who did not get such support.