Showing papers in "Dementia in 2019"
TL;DR: An overview of the role of technology in dementia care, treatment and support is provided by mapping existing technologies – by function, target user and disease progression.
Abstract: The extent to which technology may be able to support people with dementia and their carers along the care pathway and in different care settings is of interest to policy makers and governments. In this paper we provide an overview of the role of technology in dementia care, treatment and support by mapping existing technologies - by function, target user and disease progression. Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings. The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention. The second largest number of interventions aims to enhance people's memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers. While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely on everyday technologies re-purposed to meet their needs.
120 citations
TL;DR: It is shown that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities.
Abstract: The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities.
107 citations
TL;DR: A scoping review of studies exploring decisions associated with the EoLC of people with dementia highlights several challenges that need to be addressed in order to provide adequate and effective care for people with Alzheimer's disease as they near the end of their life.
Abstract: Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care. We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member). Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.
88 citations
TL;DR: The dementia friendly initiatives research base is primarily qualitative and descriptive focused on environmental design, dementia awareness and education, and the development of dementia friendly communities.
Abstract: BackgroundDementia friendly initiatives share similarities with the age-friendly movement in a focus on active engagement and creating a good quality of life for older adults. Dementia friendly initiatives offer a welcoming optimistic narrative in dementia studies by embracing dignity, empowerment, and autonomy to enable well-being throughout the dementia trajectory.PurposeThe purpose of this review is to explore the current science of dementia friendly initiatives, identify gaps, and inform future research.MethodQuantitative, qualitative, and conceptual/theoretical peer-reviewed dementia friendly research literature were evaluated for their current evidence base and theoretical underpinnings.ResultsThe dementia friendly initiatives research base is primarily qualitative and descriptive focused on environmental design, dementia awareness and education, and the development of dementia friendly communities. Person-centered care principles appear in dementia friendly initiatives centered in care sett...
82 citations
TL;DR: This literature review synthesizes and critically appraises different approaches to safety and highlighting areas of debate to promote the safe participation of people with dementia in qualitative research to contribute to the development of inclusive research methods.
Abstract: AimDeveloping strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of demen...
68 citations
TL;DR: A multicomponent dementia friendly community intervention supported: research; the establishment of a Dementia Advisory Group and Alliance; an awareness campaign and education in community organisations; and the direct involvement of people living with dementia as spokespeople and educators was an effective way to improve positive attitudes and reduce the negative stereotypes associated withLiving with dementia.
Abstract: Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Dementia friendly communities aim to address this by empowering people with dementia and increasing their social inclusion. As a part of a Community Based Participatory Action Research (CBPAR) process, a multicomponent dementia friendly community intervention supported: research; the establishment of a Dementia Advisory Group and Alliance; an awareness campaign and education in community organisations. Educational events were co-designed and co-facilitated by people with dementia and their care partners. To assess project reach and changes in attitudes of community members, two cross sectional surveys were conducted with adults (aged over 18 years) using validated scales. Independent samples t-tests compared responses to the surveys prior to the commencement of the project (2014) and two years later (2016). In 2016, respondents showed increased agreement with the statements: ‘Pe...
63 citations
TL;DR: An exercise involving individuals with dementia as co-researchers in a qualitative analysis improved overall research quality by enhancing validity of the findings through application of multiple perspectives while also generating sub-themes for exploration in subsequent interviews.
Abstract: Patient and public involvement is widely accepted as good practice in dementia research contributing substantial benefits to research quality. Reports detailing involvement of individuals with deme...
59 citations
TL;DR: The diagnosis and communication of diagnosis of dementia are intertwined processes and should be concurrently addressed in interventions that could include guideline development, practitioner education, anti-stigma public health campaigns, and sufficient reimbursement for practitioners for time spent managing dementia.
Abstract: The aim of this study is to systematically review practitioners’ practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as ‘memory problems’ are more often used to describe dementia than medical terms. Practitioners’ decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communication; (b) patient circumstances including...
53 citations
TL;DR: The aim was to search the qualitative research, integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers on young onset dementia, and identify 23 qualitative articles.
Abstract: BackgroundThe qualitative research on young onset dementia is providing insights about the ‘lived experience’ of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers.MethodThe search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles.ResultsIn the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and ar...
53 citations
TL;DR: An up-to-date overview of research into psychosocial interventions and their impact on psychossocial outcomes is provided, focusing on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015.
Abstract: An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015, since the earlier review. The search of PsychInfo, Medline and the Cochrane database of systematic reviews yielded 61 relevant articles, organised into four themes echoing key phases of the care pathway: Living at home with dementia (five reviews, eight studies), carer interventions (three reviews, four studies), interventions in residential care (16 reviews, 12 studies) and end-of-life care (three reviews, two studies), along with an additional group spanning community and institutional settings (six reviews, two studies). Community findings suggested that appointment of dementia specialists and attention to case management can produce positive outcomes; physical therapies, cognitive training and modified cognitive behaviour therapy also had a range of benefits. There was more limited evidence of positive benefits for people with dementia through interventions with family carers. Thirty-two articles focused on the management of 'behavioural symptoms' through a range of interventions all of which had some evidence of benefit. Also a range of multi-component and specific interventions had benefits for cognitive, emotional and behavioural well-being of people with dementia in residential settings, as well as for quality of life. Overall, interventions tended to be short term with impact only measured in the short term. We recommend further research on interventions to promote living well in the community post-diagnosis and to address end-of-life care. Development of psychosocial interventions would benefit from moving beyond the focus on control of behaviours to focus on wider aspects of life for people with dementia.
48 citations
TL;DR: An extensive variety of technical interventions were found, with a broad range of methodological heterogeneity to explore their effect, and wide-spanning outcomes to support the potential of technology solutions and the challenges presented by such intervention were found.
Abstract: Health and social care provision needs to change in order to meet the needs of an increase in the number of people living with dementia. Environmental design, technology and assistive devices have the potential to complement care, help address some of the challenges presented by this growing need and impact on the lived experience of this vulnerable population. This systematic review was undertaken to identify the research on the use of electronic assistive technology within long-term residential care settings. A total of 3229 papers published from the inception of each of the databases up until May 2016 were retrieved from searches in four major databases. Sixty-one were identified to be included in the review. The inclusion criteria were: original peer reviewed journals; an electronic assistive technology intervention; with residents or tenants living with dementia or their family or paid caregivers; in supported living environments or residential care. The data extracted from the included studies focus...
TL;DR: The challenges to recruiting people with dementia to studies are highlighted, and strategies that nurses, and in particular, nurse researchers can use for overcoming them are identified.
Abstract: BackgroundLow participation in research is one of the key challenges to advancing understanding of dementia, and improving the care and treatment of those who live with this condition. Nurses and n...
TL;DR: Supportive strategies such as rapport building, establishing buy-in, and communication are illustrated to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future.
Abstract: This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs). The foundation of SHARE is built upon assessing and documenting the person living with dementia's care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one's desires before the onset of disease progression when the demand for making care decisions is high. Through working together with a SHARE Counselor, the care dyad begins to identify other sources of support, such as family and friends and service providers, in order to build a more balanced and realistic plan of care for the future. Data were collected from 40 early-stage dementia care dyads to determine the acceptability of having structured discussions about future care in the early stages of dementia. Findings from this study demonstrate the importance of planning in the early stages when persons with dementia can voice their care values and preferences for future care. Finally, this paper illustrates the use of supportive strategies such as rapport building, establishing buy-in, and communication to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future.
TL;DR: This paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementsia Working Group and EDUCATE.
Abstract: The involvement of people living with dementia in research has traditionally been located in the realms of ‘subject’ or ‘participant’. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014–2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.
TL;DR: A critical approach is proposed to understanding how creativity is used by people living with dementia and by their carers and family members as a way of negotiating changes in their everyday lives, comprised of six dimensions: everyday creativity; power relations; ways to operationalise creativity; sensory and affective experience; difference and reciprocity.
Abstract: In recent years there has been a growing interest in person-centred, ‘living well’ approaches to dementia, often taking the form of important efforts to engage people with dementia in a range of cr
TL;DR: To ensure consistent opportunities for participation, effective practices and approaches to supporting the participation of people living with dementia in care planning needs to be developed and rolled out in all care settings through increased training and adoption of standardised approaches.
Abstract: In recent years, there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the ...
TL;DR: Seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice and current issues in the design, development and economic model of assistive technologies for people with dementia are discussed.
Abstract: Assistive technologies (AT) became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Mederic Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyse how AT can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where AT can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This article summarizes how these concepts took momentum in professional practice and public policies in the past fifteen years (2000-2015), discusses current issues in the design, development and economic model of AT for people with dementia, and covers how these technologies are being used and assessed.
TL;DR: This study provides information in the form of overlapping themes from first-person perspectives of numerous individuals affected by Alzheimer’s disease and related dementia in order to understand the experiences of people who live with ADRD.
Abstract: Limited research takes a socio-biographical approach to study the experiences and perspectives of individuals affected by Alzheimer’s disease and related dementias. The purpose of this study was to thematically analyze blog narratives written by people with Alzheimer’s disease and related dementia and care partners in order to increase understanding of their experiences. Nineteen blogs written by people with Alzheimer’s disease and related dementia and 44 blogs written by care partners were analyzed. The first two authors utilized line-by-line open coding to analyze five posts from each group for the development of a codebook. Using NVivo software, the first author proceeded to code the remaining blogs for emergent themes and subcategories. Emergent themes included (1) effects of Alzheimer’s disease and related dementia on the person with Alzheimer’s disease and related dementia and/or the care partner; (2) seeing the positives; (3) feeling out of control; (4) advocacy and empowerment; (5) coping mechanis...
TL;DR: It is indicated that filial obligation can be maintained through social support, even though the nature of filial piety has been changed by social transitions.
Abstract: The filial piety model of family centred care has dominated Chinese society for thousands of years. The ways in which filial piety is presented are being modified and modernised as China undergoes ...
TL;DR: The role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home is examined and the implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
Abstract: People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
TL;DR: A qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers indicates that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers.
Abstract: The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family’s non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effectiv...
TL;DR: An integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia highlights how dementia is defined in the literature and describes 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.
Abstract: 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...
TL;DR: The findings suggest the need for supportive responses that address unique emotion and identity-related aspects of driving cessation for people with dementia and their family caregivers.
Abstract: The purpose of this study on driving cessation was to explore the process of coping, decision-making and adaptation through this major life transition. We sought to examine understandings of the em...
TL;DR: It is indicated that home is an important setting and is likely to change significantly responding to the changing nature of dementia, and needs to remain flexible to accommodate changes and challenges.
Abstract: BackgroundThe domestic home is the preferred site for care provision for people with dementia and their families, therefore creating a dementia and caring friendly home environment is crucial. This systematic review synthesised qualitative studies to explore the role of the home environment and identify potential barriers and facilitators in home dementia care and support to inform future practice and research.MethodsA systematic search in 12 databases identified international qualitative literature on perceptions and experiences of community-dwelling people with dementia, family and formal carers regarding the role of the home environment and ways to tackle daily challenges.ResultsForty qualitative studies were included and analysed using thematic synthesis. The main three themes were: ‘home as a paradox’, ‘there is no magic formula’ and ‘adapting the physical space, objects and behaviour’. Findings indicate that home is an important setting and is likely to change significantly responding to the changin...
TL;DR: This study presents data from four cohorts of undergraduate college students and people with dementia and their family members, using an intergenerational choir as the process through which to begin to create a dementia friendly community.
Abstract: A dementia friendly community is one that is informed about dementia, respectful and inclusive of people with dementia and their families, provides support, promotes empowerment, and fosters qualit
TL;DR: Group animal-assisted activity (AAA) seems to create engagement in PWDs, and might be a suitable and health promoting intervention for both NH residents and participants of a day care centre.
Abstract: The need for meaningful activities that enhance engagement is very important among persons with dementia (PWDs), both for PWDs still living at home, as well as for PWDs admitted to a nursing home (NH). In this study, we systematically registered behaviours related to engagement in a group animal-assisted activity (AAA) intervention for 21 PWDs in NHs and among 28 home-dwelling PWDs attending a day care centre. The participants interacted with a dog and its handler for 30 minutes, twice a week for 12 weeks. Video-recordings were carried out early (week 2) and late (week 10) during the intervention period and behaviours were categorized by the use of an ethogram. AAA seems to create engagement in PWDs, and might be a suitable and health promoting intervention for both NH residents and participants of a day care centre. Degree of dementia should be considered when planning individual or group based AAA.
TL;DR: It is concluded that the multimedia features available with the The authors' Story app offer a unique opportunity for people living with dementia to store, access and generate memories, capture them in writing and audio; and the ability to continue adding to the original stories.
Abstract: The purpose of these three case studies was to analyse and theoretically explain the contribution of digital multimedia personalisation to stimulate and share long-term memories of people who live with mild to moderate dementia. We investigated how the use of a freely available iPad app can, in a supporting context, facilitate the creation of personalised multimedia stories, including the participants’ audio recordings, texts and photos of items, places or people important to them. Three people who were recruited from a club for people living with dementia created personalised multimedia stories using their own photographs and/or pictures downloaded from the internet, with written captions and audio-recorded voiceovers. Our analysis focuses on the themes and symbols across the three final stories of the participants and the process of creating stories with the Our Story iPad app. The discussion concerns the theoretical value of multimedia and the practical value of story-making apps for people with dementia. We conclude that the multimedia features available with the Our Story app offer a unique opportunity for people living with dementia to store, access and generate memories, capture them in writing and audio; and the ability to continue adding to the original stories.
TL;DR: The role of homecare workers supporting a person with dementia up to the end of life remains under-researched, with unmet needs for informational, technical and emotional support reported.
Abstract: This systematic review of the literature explores the perspectives and experiences of homecare workers providing care for people with dementia living at home up to the end of life. A search of major English language databases in 2016 identified 378 studies on the topic, of which 12 met the inclusion criteria. No empirical research was identified that specifically addressed the research question. However, synthesis of the findings from the broader literature revealed three overarching themes: value of job role, emotional labour and poor information and communication. The role of homecare workers supporting a person with dementia up to the end of life remains under-researched, with unmet needs for informational, technical and emotional support reported. The effective components of training and support are yet to be identified.
TL;DR: Whether the patient’s hospital experience was positive or negative was powerfully influenced by family involvement and ward staff actions and communication, and a requirement for a ward based activity service for patients with cognitive impairment was identified.
Abstract: It is acknowledged that there are many challenges to ensuring a positive hospital experience for patients with cognitive impairment. The study (‘Improving hospital care for adults with cognitive im...
TL;DR: Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.
Abstract: Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves-i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.