Effectiveness of interventions to prevent abuse in people living with dementia in community settings: A systematic review.

OBJECTIVES: This review examined the evidence for interventions to prevent the abuse of people living with dementia in the community. METHODS: The articles were retrieved from 2000 to 2023 from six databases, including MEDLINE via PubMed, CINAHL Plus via EBSCO, EMBASE, ProQuest Medical Library, Web of Science, and Scopus. The research articles that focused on finding the effectiveness of interventions for preventing abuse of people living with dementia in community settings were included in this review. The review included randomized controlled trials and pre-test post-test trials only. The quality appraisal of the eligible studies was done using ROB 2 and ROBINS II. The findings were tabulated and narratively synthesised. RESULTS: Out of 1831 articles, only three were included in this review. Only two RCTs were included in this efficacy review. Both the studies showed that the interventions were not effective in reducing abuse. The studies utilised family caregiver interventions like psychological interventions and online supportive education. The review identified psychological interventions with some evidence. Another study was a quasi-experimental study that used dialectical behaviour therapy as an intervention to reduce abuse occurrence. The study showed low evidence and focused only on reporting of elder abuse as an outcome. CONCLUSION: This review found very few studies and was not able to draw a conclusion on the effectiveness of interventions for abuse in people living with dementia. Given the paucity of research, there is a clear need to identify how to overcome the challenges faced in elder abuse research and further refine the development of approaches to reduce elder abuse among people living with dementia in community settings.

Caring burden and quality of life among the caregivers of people living with dementia - a cross-sectional study in Udupi district of Karnataka.

Dementia is a chronic disorder of the brain that affects cognitive performance. The caregivers of individuals with dementia experience a greater burden that affects their Quality of Life (QoL). This cross-sectional study conducted in India was designed to assess the caring burden and QoL among the caregivers of people with dementia, as well as to ascertain the relationship between QoL scores and burden. Our sample included 80 caregivers of people with dementia. Most of the caregivers (n = 59, 73.8%) had a higher level of caregiver burden. There was a negative correlation between caregiver burden scores and QoL. A higher level of caregiver stress and low QoL were experienced by caregivers of dementia patients. In developing countries like India, counseling, and education on home health care for people with dementia should be provided to reduce the burden and enhance the QoL of caregivers.

Dementia, Work and Employability: Using the Capability Approach to Understand the Employability Potential for People Living with Dementia.

The importance of remaining in, or re-entering, the labour market is emphasised by governments internationally. While this may bring benefits, progressive disabilities such as dementia affect an individual's employability. Although employers have legal obligations to support employees with disabilities, research suggests that employers are not providing this support to employees living with dementia and are undermining their capabilities. Drawing on interview data from 38 key informants collected over two studies, we explore the potential for supporting and promoting the employability of people living with dementia. A model of sustainable employability based on the Capability Approach is used as a lens to explore this issue. The findings demonstrate the implications of progressive disabilities for employability when the worker and their family are faced with dealing with a disability in a period of uncertainty with a lack of public and workplace understanding.

Living with dementia in supported housing: A systematic review and thematic synthesis of qualitative research.

Supported housing has been highlighted as a potential way to facilitate independent living for people with dementia by integrating housing with support or care services. However, the benefits and challenges of living with dementia in supported housing are not fully understood. This systematic review and thematic synthesis sought to understand how living in supported housing influences the lives of people with dementia, from the perspectives of people with dementia, their supporters, health and social care professionals. Seven databases were searched for qualitative research, date range: 1 January 2000-31 July 2021. Eleven published articles were included in the thematic synthesis. One core theme was generated, Maintaining Independence and Autonomy, divided into three subthemes - Support and Care, Social Relationships and the Physical Environment. Factors like person-centred care, social interaction and good environmental design contributed to the maintenance of independence and autonomy. Barriers like low staff ratios, stigma and limited access to the community led to a loss of independence and autonomy - often leading to people with dementia being referred or managed out of the settings. Although the articles acknowledged the importance of maintaining independence and autonomy for people with dementia, it appeared that supported housing settings often lacked the resources and facilities to make this a reality. More high-quality research is needed, particularly from the perspectives of people with dementia and their supporters, to understand if supported housing can delay care home admission, promote independence and autonomy and facilitate social networks and community connections for this population.

Dementia in the workplace: are employers supporting employees living with dementia?

OBJECTIVES: As working lives extend and there is better recognition of early-onset dementias, employers need to consider dementia as a workplace concern. With suitable support, people living with dementia can continue employment - although, this is not appropriate for all. The requirement for employers to support employees living with dementia has human rights and legal foundations. This article considers whether employers consider dementia as a workplace concern; and the policies and/or practices available to support employees living with dementia. Thus, it develops understanding of whether employers are meeting their human rights/legislative obligations. METHOD: A sequential mixed-methods approach was employed, with data collection undertaken in Scotland (United Kingdom). An online survey was sent to employers across Scotland, with 331 participating. Thirty employer interviews were conducted, with the survey results informing the interview approach. RESULTS: The survey and interview data were analyzed separately and then combined and presented thematically. The themes identified were (1) Dementia as a workplace concern, (2) Support for employees living with dementia and (3) Employer policy development and awareness raising. The findings demonstrate dementia awareness, but this knowledge is not applied to employment situations. There was little evidence suggesting that the rights of employees living with dementia are consistently upheld. CONCLUSION: This research sends out strong messages about the rights and legal position of person living with dementia which cannot be ignored. The continuing potential of employees living with dementia and their legal rights are not consistently recognized. This highlights the need for robust training interventions for employers.

Exposing the mechanisms underlying successful animal-assisted interventions for people with dementia: A realistic evaluation of the Dementia Dog Project.

There is increasing recognition of animal-assisted interventions as a promising area of practice within health and social care for people living with dementia. However, much of the research focuses on benefits for those living in care homes and not in their own homes. The Dementia Dog Project is an innovative project that aims to support people with dementia to engage with dogs and to promote the use of dogs in dementia care in the community. The pilot project introduced a dementia assistance dog to four couples where one person had a diagnosis of dementia. The aim of this paper is to explore the mechanisms that can successfully expose the benefits of integrating dogs into dementia care by drawing on the findings of a realistic evaluation of the pilot phase of the Dementia Dog Project (2013-2015). A realistic evaluation, with its focus on context, mechanisms and outcomes illuminates why an approach may work in some situations but not in others. This makes it especially appropriate to the unique, complex experience of living with dementia and the early development stage of the programme. The analysis triangulated data from a range of primary and secondary sources including interviews with the project team, case reports, team meeting notes and transcripts of interviews with participants. The findings identified three mechanisms that help to unlock the most positive outcomes for both the participants and the dogs. These were (1) the human-animal bond, (2) relationship dynamics and (3) responsibility of caring. The findings presented within this paper provide essential information to inform and advance the planning for the use of assistance dogs for people with dementia.

Meaningful activity in advanced dementia.

This article is part of a series in Nursing Older People exploring the nursing care of people living with advanced dementia. When someone with advanced dementia can no longer communicate verbally and has limited movement, activities they once enjoyed may no longer be possible. This limits opportunities for self-realisation and can lead to a preoccupation in advanced dementia care about the routines associated with the maintenance of comfort and nourishment, at the expense of contentment and moments of fulfilment. Such a narrow focus can lead to changes in behaviour, indicating boredom, frustration and distress. Yet there are opportunities for a more creative approach to activity that can be adapted to the person's changing needs and the human desire to feel connected and engaged. Examples of these evidence-informed, creative interventions for people living with advanced dementia care include music, doll-focused activity, animal-assisted interventions, multisensory experiences such as Namaste Care and complementary therapies. These activities can engage the person with advanced dementia in a close connection with another human being through individualised and sensory-based care.

Changing needs in advanced dementia.

This is the first article in a six-part series in Nursing Older People exploring the nursing care of people living with advanced dementia. This article discusses the changes that may occur as dementia progresses, from the perspective of the individual, their family and other carers. A person living with advanced dementia is likely to experience physical, cognitive and social changes that can be profound and debilitating. Healthcare needs intensify as new and co-existing issues result in increasing dependency on others for support with activities of daily living. These activities can include eating, drinking, mobility and personal care. Consequently, family carers may find their role has to develop and change to provide increasing support in response to these complex needs. These increasing needs can result in care transitions to hospitals or care homes. Careful and collaborative management of care is crucial to maintain quality of life for the person with dementia and family carers.

Introduction to living with advanced dementia series.

This is the introductory article in a six-part series in Nursing Older People exploring the nursing care of people living with advanced dementia. It discusses the complex and progressive array of nursing required to meet the needs of individuals, the provision of personal care, learning and leadership, meaningful activity, and palliative and end of life care. A main theme of the series is the exceptional nursing skills and knowledge required to deliver evidence-informed care with compassion and respect for people living with advanced dementia. This introductory article provides background information to contextualise advanced dementia and identify the main challenges facing nurses, nurse educators and nurse leaders.

The extended palliative phase of dementia - An integrative literature review.

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.

The relationship between frailty, functional dependence, and healthcare needs among community-dwelling people with moderate to severe dementia.

This paper examines the healthcare needs of community-dwelling older people living in Porto, Portugal, diagnosed with moderate or severe dementia, linked to functional dependency, cognitive decline, limitations in the activities of daily life, and frailty levels. A sample of 83 participants was recruited. Data were collected between 2013 and 2017. A sociodemographic questionnaire, the Clinical Dementia Rating (CDR), the Barthel Index (BI), the Lawton and Brody Instrumental Activities of Daily Living (IADL) Scale, and the Edmonton Frail Scale (EFS) were used. A set of 26 healthcare needs was defined to support the assessment. The Pearson chi-square or Fisher's exact test (as appropriate) was used to examine the association of the needs (unmet and met) with the levels of dementia and frailty. Participants were diagnosed previously with moderate or severe dementia and benefited from a structured home-care program. There was a high number rated as "severe dementia," "fully dependent," "severely or fully dependent in the activities of daily living (ADL)," and "severe frailty." There were statistically significant differences among needs identified in people with moderate or severe dementia and moderate or severe frailty. The most prevalent healthcare needs in the sample were food preparation, medication/taking pills, looking after their home, toilet use, sensory problems, communication/interaction, bladder, bowels, eating and drinking, memory, sleeping, and falls prevention. In particular, the study identifies a set of needs that are present simultaneously in both frailty and dementia stages. This study underlines that despite well-structured home-care programs for people with dementia, unmet health needs remain. Timely healthcare needs assessment may help professionals to avoid fragmented care and to tailor quality-integrated interventions, including the emotional and psychological balance of the caregiver.

Nurses' Recognition of Hospitalized Older Patients With Delirium and Cognitive Impairment Using the Delirium Observation Screening Scale: A Prospective Comparison Study.

The aim of the current study was to report findings about delirium detection when ward nurses screened for delirium in patients with cognitive impairment using the Delirium Observation Screening Scale (DOSS) in comparison to the Confusion Assessment Method (CAM). A secondary analysis was performed of research data collected in 2010 at a Swiss tertiary university hospital. During the first 5 days after admission, patients 70 and older with cognitive impairment were screened for delirium using the DOSS. Throughout patients' hospital stay, research assistants also completed the CAM on a daily basis. A total of 138 patients who did not have delirium initially participated in the study. Of these patients, 44 (32%) developed delirium with a median duration of 3 days (Q1 = 1.25; Q3 = 5.00). Ward nurses correctly identified delirium using the DOSS in 56% of cases (sensitivity) and no delirium in 92% of cases (specificity). Although the DOSS was 100% correct in detecting patients with hyperactive delirium, the identification rate decreased to 60% for patients with mixed delirium subtype and 38% for patients with hypoactive delirium. Delirium screening using observational methods may be insufficiently sensitive and should be supplemented with a formal attention test. [Journal of Gerontological Nursing, 44(12), 35-43.].

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 peoplewith advanced dementia within Europe. It is essential to understand these experiences if weare to address care inequalities and create impactful dementia policies to improve servicesthat 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 thebest life possible and education on advanced dementia for professional and family caregiverswere all significant and recurring issues considered important for care experiences to bepositive. 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 provision of accredited higher education on dementia in six European countries: An exploratory study.

BACKGROUND: The World Health Organization has identified developing the knowledge and skills of healthcare professionals who are involved in dementia care as a priority. Most healthcare professionals lack the necessary knowledge, skills and understanding to provide high quality dementia care. While dementia education amongst most UK university health and social care programmes is inconsistent, we know little about the provision of dementia education in European universities. OBJECTIVES: To examine the provision of accredited higher education on dementia in European countries, to illustrate that it is highly variable despite universities being the major provider of education for healthcare professionals internationally. DESIGN: An exploratory research design was used. SETTINGS: The providers of higher education undergraduate and postgraduate programmes in the Czech Republic, Portugal, Scotland, Slovenia, Spain, Sweden. PARTICIPANTS: Higher Education Institutions who provide undergraduate and postgraduate education in the fields of nursing, medicine, psychology, social work, physiotherapy, occupational therapy, and gerontology in six European countries. METHODS: The data was collected using a structured questionnaire. Researchers in each country conducted an internet-based search using the websites of Higher Education Institutions to identify existing accredited dementia education. RESULTS: These searches revealed a lack of dementia education in undergraduate health and social care study programmes. Three of the six countries offered postgraduate study programmes on dementia. There was a significant variation amongst the countries in relation to the provision of dementia education at undergraduate, postgraduate and doctoral levels. CONCLUSIONS: Dementia is a global challenge and educating and upskilling the workforce is a policy imperative. To deliver the best dementia care, investment in interprofessional evidence-based education is required if we are to respond effectively and compassionately to the needs of people living with dementia and their families. Higher Education Institutions have an important role to play in equipping health and social care professionals with the knowledge, skills and understanding to respond to this imperative.

Developing Evidence for Football (Soccer) Reminiscence Interventions Within Long-term Care: A Co-operative Approach Applied in Scotland and Spain.

Loneliness is a common experience within long-term care and, to promote well-being and quality of life among people with dementia, it is important to draw upon a repertoire of strategies that provide social stimulation, companionship, and enjoyment. This paper describes and reflects on a program of co-operative social participatory research that sought to introduce football-focused (ie, soccer-based) reminiscence based in 4 community settings within Spain and Scotland. Findings are reported and inform an original conceptual model that supports the introduction of sustainable approaches to the development of football-focused reminiscence with and for people with dementia.

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.

An international definition for "nursing home".

There is much ambiguity regarding the term "nursing home" in the international literature. The definition of a nursing home and the type of assistance provided in a nursing home is quite varied by country. The International Association of Gerontology and Geriatrics and AMDA foundation developed a survey to assist with an international consensus on the definition of "nursing home."

International survey of nursing home research priorities.

This article reports the findings of a policy survey designed to establish research priorities to inform future research strategy and advance nursing home practice. The survey was administered in 2 rounds during 2013, and involved a combination of open questions and ranking exercises to move toward consensus on the research priorities. A key finding was the prioritization of research to underpin the care of people with cognitive impairment/dementia and of the management of the behavioral and psychological symptoms of dementia within the nursing home. Other important areas were end-of-life care, nutrition, polypharmacy, and developing new approaches to putting evidence-based practices into routine practice in nursing homes. It explores possible innovative educational approaches, reasons why best practices are difficult to implement, and challenges faced in developing high-quality nursing home research.