Self-reported needs and experiences of people with dementia living in nursing homes : a scoping review

Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have frequently been shown to be unreliable. Therefore, this literature review aims to explore the self-reported needs and experiences of people with dementia in nursing homes. Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences. Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care. Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribution towards guiding evidence-based practice that is tailored to the needs of nursing home residents with dementia

Interkulturní srovnání přístupů v péči o člověka s demencí

Existují značné interkulturní rozdíly v pojetí nemoci a péče o seniory s demencí. Tyto přístupy rozšiřují a v mnohém upevňují pohled na tuto problematiku. Pro-rodinná orientace afroamerických národů významně redukuje pečovatelskou zátěž. Z hlediska kvality a úrovně poskytované péče v rodině se ukazuje jako relevantní samotné chápání podstaty nemoci demence. Rodinní pečující národnostních menšin u nás jen zřídka využívají služeb konzultační činnosti a dalších.There are considerable intercultural differences in the concept of the disease and care for the elderly with dementia. These approaches are expanding and in many ways strengthening the view of this issue. The pro-family orientation of African-American nations significantly reduces the caregiver burden. From the point of view of the quality of care provided in the family, the understanding of the essence of dementia is relevant. Family caregivers of national minorities only use at least consulting services and others.495

COVID-19 highlights the need for universal adoption of standards of medical care for physicians in nursing homes in Europe.

To access publisher's full text version of this article, please click on the hyperlink in Additional Links field or click on the hyperlink at the top of the page marked DownloadThe nursing home sector has seen a disproportionately high number of deaths as part of the COVID-19 pandemic. This reflects, in part, the frailty and vulnerability of older people living in care homes but has also, in part, been a consequence of the failure to include care homes in the systematic planning of a response to COVID, as well as a measure of neglect of standards and quality improvement in the sector. In response, the EUGMS published a set of medical standards of care developed in consultation with experts across its member national societies in 2015. The standards consisted of seven core principles of medical care for physicians working in nursing homes as a first step in developing a programme of clinical, academic and policy engagement in improving medical care for older people who are living and frequently also dying as residents in nursing homes. The gravity of the concerns arising for nursing home care from the COVID-19 pandemic, as well as emerging insights on care improvement in nursing homes indicate that an update of these medical standards is timely. This was performed by the writing group from the original 2015 guidelines and is intended as an interim measure pending a more formal review incorporating a systematic review of emerging literature and a Delphi process. Keywords: COVID-19; MeSH; Nursing home; Physicians; Standard of care

Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative

This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities undertaken by the Palliare project supported through the Erasmus+ K2 Strategic Partnerships funding programme.info:eu-repo/semantics/publishedVersio

COVID-19 highlights the need for universal adoption of standards of medical care for physicians in nursing homes in Europe

The nursing home sector has seen a disproportionately high number of deaths as part of the COVID-19 pandemic. This reflects, in part, the frailty and vulnerability of older people living in care homes but has also, in part, been a consequence of the failure to include care homes in the systematic planning of a response to COVID, as well as a measure of neglect of standards and quality improvement in the sector. In response, the EUGMS published a set of medical standards of care developed in consultation with experts across its member national societies in 2015. The standards consisted of seven core principles of medical care for physicians working in nursing homes as a first step in developing a programme of clinical, academic and policy engagement in improving medical care for older people who are living and frequently also dying as residents in nursing homes. The gravity of the concerns arising for nursing home care from the COVID-19 pandemic, as well as emerging insights on care improvement in nursing homes indicate that an update of these medical standards is timely. This was performed by the writing group from the original 2015 guidelines and is intended as an interim measure pending a more formal review incorporating a systematic review of emerging literature and a Delphi process

Experiences of advanced dementia care in seven European countries: implications for educating the workforce

Background: There is a paucity of robust research concerning the care experiences of people with advanced dementia within Europe. It is essential to understand these experiences if we are to address care inequalities and create impactful dementia policies to improve services that support individuals and enable family caring. Objectives: To identify the strengths and weaknesses in daily life perceived by people with dementia and family caring across Europe by exemplifying experiences and the range of typical care settings for advanced dementia care in seven partner countries. Methods: Twenty two in-depth qualitative case studies were completed in seven European countries across a range of care settings considered typical within that country. Narrative accounts of care illuminated a unique set of experiences and highlighted what was working well (strengths or positive aspects) and not so well (weaknesses or negative aspects) for people with advanced dementia and family caring. A constant comparative method of analysis through thematic synthesis was used to identify the common themes. Results: Eight key themes were identified; Early diagnosis, good coordination between service providers, future planning, support and education for carers, enabling the person with dementia to live the best life possible and education on advanced dementia for professional and family caregivers were all significant and recurring issues considered important for care experiences to be positive. Conclusion: People with advanced dementia may have limited opportunities for self-realization and become increasingly reliant on the support of others to maximize their health and well-being. Careful attention must be given to their psychosocial well-being, living environment and family caring to enable them to live the best life possible. Building on what the case studies tell us about what works well, we discuss the potential for integrating the findings into interprofesional learning solutions for the professional workforce across Europe to champion practice-based change.The project was funded by the EU Erasmus+ programme with 290.000€ and coordinated by the University of the West of Scotland, Scotland. The research was conducted within the project’s interprofessional experiential learning (IPE) solutions: equipping the qualified dementia workforce to champion evidence on informed improvement to advanced dementia care and family caring (Palliare) (2014-1-UK01-KA203-001819)

FTLD-TDP with motor neuron disease, visuospatial impairment and a progressive supranuclear palsy-like syndrome: broadening the clinical phenotype of TDP-43 proteinopathies. A report of three cases

<p>Abstract</p> <p>Background</p> <p>Frontotemporal lobar degeneration with ubiquitin and TDP-43 positive neuronal inclusions represents a novel entity (FTLD-TDP) that may be associated with motor neuron disease (FTLD-MND); involvement of extrapyramidal and other systems has also been reported.</p> <p>Case presentation</p> <p>We present three cases with similar clinical symptoms, including Parkinsonism, supranuclear gaze palsy, visuospatial impairment and a behavioral variant of frontotemporal dementia, associated with either clinically possible or definite MND. Neuropathological examination revealed hallmarks of FTLD-TDP with major involvement of subcortical and, in particular, mesencephalic structures. These cases differed in onset and progression of clinical manifestations as well as distribution of histopathological changes in the brain and spinal cord. Two cases were sporadic, whereas the third case had a pathological variation in the progranulin gene 102 delC.</p> <p>Conclusions</p> <p>Association of a "progressive supranuclear palsy-like" syndrome with marked visuospatial impairment, motor neuron disease and early behavioral disturbances may represent a clinically distinct phenotype of FTLD-TDP. Our observations further support the concept that TDP-43 proteinopathies represent a spectrum of disorders, where preferential localization of pathogenetic inclusions and neuronal cell loss defines clinical phenotypes ranging from frontotemporal dementia with or without motor neuron disease, to corticobasal syndrome and to a progressive supranuclear palsy-like syndrome.</p

Vybrané aspekty zdravotní a dlouhodobé péče o stárnoucí populaci

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