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)

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.

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.

A Systematic Review of the Indirect and Social Costs in Early and Young Onset Dementias.

BACKGROUND: The World Health Organization has estimated that worldwide around 50 million people have dementia. The World Alzheimer Report estimated that between 2 and 10% of all cases of dementia begin before the age of 65. Early and young onset dementias (EYOD) provoke more working, social, family, and economic consequences than late onset dementias. All general studies about costs of dementias show that most of them are indirect or social costs. Despite that, very few studies have been performed in EYOD. OBJECTIVE: To do a systematic review of literature about indirect or social costs in EYOD to know the state of knowledge and to discover gaps that should be filled. METHODS: A systematic review was performed in the main database: Scopus, PsychInfo, Web of Science (Web of Science Core Collection, Medline and SciELO), and CINAHL. Additionally, we looked for reviews in Cochrane and in the International Prospective Register Of Systematic Reviews (PROSPERO). RESULTS: Most of the studies are about costs of dementias in general, but they do no differentiate costs for the case of EYOD. Many studies highlight the increased costs for EYOD but very little included evidence of that. 135 papers were selected. Finally, only two were studies providing data. EYOD reduce the odds to get or maintain a job. Most of the care is provided by informal caregivers. The costs in EYOD are 39.26% higher among EYOD than in late onset. CONCLUSION: There is a lack of studies about social and indirect costs in EYOD. More evidence is needed.

Rural Versus Non-Rural Residence and Psychosocial Outcomes Among Caregivers of Patients with Dementia and Related Disorders.

We used data on 718 dementia caregivers and multivariable linear regression to test associations between residential locale and psychosocial outcomes (grief, wellbeing, burden, quality of life [QOL], self-efficacy/mastery, and social networks). Rural residence (versus urban or suburban) was not associated with the psychosocial outcomes. However, for rural caregivers, greater self-efficacy/mastery was associated with lower grief (versus urban/suburban) and burden (versus suburban), and greater social network quality was associated with lower burden (versus suburban) and higher QOL (versus urban). Interventions targeting self-efficacy/mastery and social networks may be particularly effective at improving rural caregivers' mental health and QOL.

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.

The Effects of Virtual Reality-Based Education on Empathy and Understanding of the Physical Environment for Dementia Care Workers in Australia: A Controlled Study.

BACKGROUND: There is support for the effectiveness of virtual reality (VR) technology in dementia education. However, it is not yet known if VR is a useful tool for improving empathy and understanding of dementia care environments among dementia care workers. OBJECTIVE: This study compared learning outcomes of VR versus non-VR (control) workshops for dementia care workers of different ages and English-speaking backgrounds. METHODS: Dementia care workers enrolled in workshops on dementia care principles. Once participants were enrolled, workshops were assigned at random to deliver non-VR or VR-based education. Participants (N = 114, 91.8%female, mean age = 46.4; SD = 13.2; n = 60VR condition, 54control condition) completed self-report measures of empathy towards people living with dementia, understanding of dementia care environments, dementia knowledge, and attitudes towards dementia at pre- and post-workshop. RESULTS: Significant pre-post main effects were observed for empathy, understanding of dementia care environments, and attitudes. Interaction effects were not found; improvements in outcomes were similar between conditions. However, interaction effects were observed for subgroups. Empathy improved significantly more in the VR condition for older participants. Understanding of dementia care environments improved more in the VR condition for younger and non-English-speaking background participants. CONCLUSION: Using VR may not augment teaching outcomes for all learners. VR may differentially assist leaners of different ages and English-speaking backgrounds. More research is needed to understand for which variables and for whom VR is a useful teaching tool.

Hearing Screening for Residents in Long-Term Care Homes Who Live with Dementia: A Scoping Review.

BACKGROUND: Hearing loss is highly prevalent in older adults, particularly among those living with dementia and residing in long-term care homes (LTCHs). Sensory declines can have deleterious effects on functioning and contribute to frailty, but the hearing needs of residents are often unrecognized or unaddressed. OBJECTIVE: To identify valid and reliable screening measures that are effective for the identification of hearing loss and are suitable for use by nursing staff providing care to residents with dementia in LTCHs. METHODS: Electronic databases (Embase, Medline, PsycINFO, CENTRAL, and CINAHL) were searched using comprehensive search strategies, and a stepwise approach based on Arksey & O'Malley's scoping review and appraisal process was followed. RESULTS: There were 193 scientific papers included in the review. Pure-tone audiometry was the most frequently reported measure to test hearing in older adults living with dementia. However, measures including self- or other-reports and questionnaires, review of medical records, otoscopy, and the whisper test were found to be most suitable for use by nurses working with older adults living with dementia in LTCHs. CONCLUSION: Although frequently used, the suitability of pure-tone audiometry for use by nursing staff in LTCHs is limited, as standardized audiometry presents challenges for many residents, and specific training is needed to successfully adapt test administration procedures and interpret results. The whisper test was considered to be more suitable for use by staff in LTCH; however, it yields a limited characterization of hearing loss. There remains an urgent need to develop new approaches to screen hearing in LTCHs.

Modeling the Distress of Adult-Child Caregivers of People with Dementia: The Mediating Role of Self-Efficacy.

BACKGROUND: The increased tasks and responsibilities involved in supporting a parent with dementia (PWD) can induce distress in adult-child caregivers. Previous studies have shown that distress can be influenced by PWD and caregiver determinants, but few studies have considered the associations between these variables. OBJECTIVE: This study tested a complex model of adult-child caregiver distress in which PWD and caregiver determinants and their associations are considered. METHODS: 159 adult-child caregivers participated in this online study. PWD and caregiver determinants were assessed using questionnaires and their associations were investigated using the partial least squares path method. RESULTS: The model showed a significant partial mediation through self-efficacy (confidence in one's ability to organize and manage caregiving situations) between poor self-rated health and distress. Self-efficacy was a significant mediator of the relationship between informal social support and distress, and between preparedness and distress. The direct path between parental overprotection and distress was significant. The association between care and distress was significantly stronger for adult-child caregivers not living with their PWD. CONCLUSION: The model revealed the important mediating role of self-efficacy. Clinical interventions should improve the preparedness of adult-child caregivers and the quality of social support. The positive perception of their self-rated health may thus be promoted.

Key Intervention Categories to Provide Person-Centered Dementia Care: A Systematic Review of Person-Centered Interventions.

BACKGROUND: Person-centered care (PCC) is an important concept in many countries' national guidelines and dementia plans. Key intervention categories, i.e., a taxonomy of person-centered (PC)-interventions, to provide person-centered dementia care, are difficult to identify from literature. OBJECTIVE: This systematic review aimed to identify and categorize published PC-interventions into key intervention categories to guide the provision of person-centered dementia care. METHODS: Conduct of this systematic review followed Cochrane guidelines. A search of the dimensions 'Dementia', 'Person-Centered Care', and 'Intervention' combined was performed in PubMed, EMBASE, and Web of Science. Study selection was based on 2-stage screening against eligibility criteria, limited to controlled study designs. Information about interventions and outcomes was extracted into an "Effects Table". The identified PC-interventions were categorized in intervention categories to provide person-centered dementia care. RESULTS: Searches identified 1,806 records. 19 studies were included. These covered a range of psychosocial interventions, oftentimes multi-component interventions, which followed heterogeneous approaches. Studies were conducted in long-term care/hospital settings. Nine key intervention categories were identified: social contact, physical activities, cognitive training, sensory enhancement, daily living assistance, life history oriented emotional support, training and support for professional caregivers, environmental adjustments, and care organization. CONCLUSION: Our findings provide a current overview of published PC-interventions in dementia, which followed heterogeneous approaches under the PCC-concept. The heterogeneity made it challenging to identify a well-defined concept of PCC and common key intervention categories. An effectiveness-evaluation of "PC" - including "relationship-centered"-interventions may be valuable, to assess whether an explicit focus on relationships around PCC-interventions yields an added benefit. PROSPERO-ID: CRD42021225084.

A Longitudinal Study of Functional Unmet Need Among People with Dementia.

BACKGROUND: Understanding the changes of unmet need in dementia may enable effective targeting of help and allow people to stay in their homes longer. OBJECTIVE: We investigated changes in unmet need and functioning over a 4-year period and the role of socio-demographic factors in these changes among people with dementia. METHODS: 234 community-dwelling people with dementia at baseline were studied in three consecutive waves (four years) of the English Longitudinal Study of Ageing (ELSA). Unmet needs (self/informant-reported limitations for which no help was received) and functional limitations (self/informant-reported difficulties in activities/instrumental activities of daily living and mobility) were modelled with latent growth curves. Sex, age, partnership, and socioeconomic status at baseline were used as predictors. Admission to a care home was an additional outcome. RESULTS: Unmet needs increased over time, especially among those who initially had more functional limitations. Unmet needs contributed to faster decline in functional capability, except among those with many limitations initially. The major driver of increased unmet needs was not having a partner (direct effect). Age, sex, and wealth contributed indirectly via the initial level of functional limitations and/or unmet need. Those with several functional limitations but few unmet needs were most likely to move to a care home. CONCLUSION: Unmet need increases over time in those with dementia with mitigating effects of having a partner and initial levels of functioning. Meeting needs at early stages of dementia, especially for those living alone and when functional limitations are low may help slow functional decline.

Dementia Caregivers' Experiences Engaging Supportive Services While Residing in Under-Resourced Areas.

BACKGROUND: Family caregivers of people living with dementia benefit from supportive service use to address care needs associated with caregiving. Yet, research consistently demonstrates low rates of service use. Existing research has focused on barriers and facilitators to service use, with few studies examining the influence of caregivers' environmental context which often patterns social advantage and health services accessibility. OBJECTIVE: To describe the perspectives of caregivers residing in socially disadvantaged areas have in regards to utilizing supportive services. METHODS: Ten informal caregivers residing in socially disadvantaged areas participated in in-depth interviews that were analyzed using thematic analysis. RESULTS: Across all interviews, caregivers spontaneously described common precedents of service use (crisis or accumulation of unmet needs) and a distinct sequence of stages (seeking, initiating, and utilizing) surrounding service engagement. Major themes characterizing caregivers' experiences throughout service engagement highlight the varied influence of personal, familial, health, and social system-related factors. Findings demonstrate that caregivers may have different service needs as dementia progresses and that gerontological social work practice can facilitate service use. CONCLUSION: While preliminary, these findings provide important insights into new domains that can be further examined in future research and intervention efforts to improve supportive service use in socially disadvantaged and underserved communities.

Dementia care education interventions on healthcare providers' outcomes in the nursing home setting: A systematic review.

Given the increasing prevalence of people with dementia in long-term care, various educational interventions have been developed to enhance the dementia care competence of healthcare providers. The study aim was to appraise the evidence of the effects of dementia care educational programs on improving the preparedness of nursing home staff. Articles on dementia care education interventions for nursing home staff were searched from eight databases. The primary outcomes were staff knowledge, attitude, competence, and sense of competence or self-efficacy related to dementia. The secondary outcomes were psychological outcomes, including burnout, caregiving stress, well-being, and job satisfaction. The quality of evidence was appraised using the Joanna Briggs Institute Critical Appraisal tool. Out of the 3269 articles identified, 19 randomized controlled trials comprising 3947 participants from eight countries were included. The methodological quality of included studies was fair. A significant improvement in staff knowledge regarding dementia was reported. The intervention effects on attitudes and competence were insignificant, and the effects on the sense of competence or self-efficacy related to dementia care were inconsistent. The effects on psychological outcomes seem limited because few significant changes were found. Multiple teaching methods, peer support, qualified trainers, and post-training support were effective components in designing the educational interventions. However, given the variations in content and dose and the methodological limitations of the included studies, the effects of educational programs were inconclusive. The findings highlight the necessity of high-quality studies on dementia-care educational interventions, especially in other cultures than Western countries, such as in Asia.

Supporting older people with dementia to sleep well while in hospital.

Optimal sleep is essential for health, well-being and recovery from illness but can be challenging to achieve in the acute hospital setting. Older people with dementia may find it particularly challenging to sleep well in the unfamiliar and disruptive environment of a hospital ward. Suboptimal sleep may potentially accelerate the progression of dementia. Conversely, optimal sleep may slow disease progression. Nursing staff who care for older people with dementia in hospital therefore need to find ways of supporting them to sleep well. This article explores the causes and consequences of suboptimal sleep in hospitalised older people with dementia and discusses evidence-based interventions that nursing staff can use to support these patients to sleep well, including person-centred sleep care, changes to sleep hygiene, environmental adaptations and changes to medicine regimens.