Fiona Kelly

Care home design for people with dementia: What do people with dementia and their family carers value?

Objectives: To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers. Method: Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male). Results: Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to ‘bricks and mortar versus people’. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision. Conclusion: The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.

Human rights, citizenship and dementia care nursing

Background.  Human rights and citizenship are concepts widely used in health and social care literature. However, they are applied less frequently and less rigorously in dementia care. This paper briefly presents these concepts before exploring how they have been applied to dementia care policy and practice. We highlight areas of dementia care where human rights can be violated and citizenship can be denied. We suggest reasons why people with dementia can be denied their human and civil rights and discuss how such concepts provide a way to address cultural and practice change in dementia care. Aims and objectives.  To demonstrate how these concepts can be used to challenge and improve dementia care nursing. Conclusions.  This paper contributes to emerging discussion about dementia care nursing by challenging conventional ways of understanding dementia and the care practices that result. Taking a rights-based approach allows nurses to examine inequity in services and address poor practice. Implications for practice.  Looking at dementia through the lenses of citizenship and human rights provides a way to broaden the scope of contemporary dementia care nursing, to enable nurses to challenge inequity and to develop and improve the direct nursing care offered to people with dementia.BACKGROUND Human rights and citizenship are concepts widely used in health and social care literature. However, they are applied less frequently and less rigorously in dementia care. This paper briefly presents these concepts before exploring how they have been applied to dementia care policy and practice. We highlight areas of dementia care where human rights can be violated and citizenship can be denied. We suggest reasons why people with dementia can be denied their human and civil rights and discuss how such concepts provide a way to address cultural and practice change in dementia care. AIMS AND OBJECTIVES To demonstrate how these concepts can be used to challenge and improve dementia care nursing. CONCLUSIONS This paper contributes to emerging discussion about dementia care nursing by challenging conventional ways of understanding dementia and the care practices that result. Taking a rights-based approach allows nurses to examine inequity in services and address poor practice. IMPLICATIONS FOR PRACTICE Looking at dementia through the lenses of citizenship and human rights provides a way to broaden the scope of contemporary dementia care nursing, to enable nurses to challenge inequity and to develop and improve the direct nursing care offered to people with dementia.

Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics

Background With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge. Objective The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research. Methods Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases. Results According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies. Conclusions Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them.

'I want to feel at home': establishing what aspects of environmental design are important to people with dementia nearing the end of life.

BackgroundThe design of environments in which people with dementia live should be understandable, reinforce personal identity and maintain their abilities. The focus on supporting people with dementia to live well has omitted considering the needs or wishes for a supportive physical environment of those who are nearing the end of their lives. Using a combination of focus groups and a Delphi survey, this study explored the views of people with dementia, family carers and professionals on what aspects of the physical environment would be important to support a good quality of life to the very end.MethodsThree focus groups were carried out in three cities along the East Coast of Australia using a discussion guide informed by a literature review. Focus groups comprised recently bereaved family carers of people with dementia (FG1), people with dementia and family carers of people with dementia (FG2) and practitioners caring for people with dementia nearing or at the end of their lives (FG3). Focus group conversations were audio-recorded with participants’ consent. Audio files were transcribed verbatim and analysed thematically to identify environmental features that could contribute to achieving the goal of providing a comfortable life to the end. A list of design features derived from analysis of focus group transcripts was distributed to a range of experts in the dementia field and a consensus sought on their appropriateness. From this, a set of features to inform the design of environments for people with dementia nearing the end of life was defined.ResultsEighteen people took part in three focus groups: two with dementia, eleven current or recently bereaved family carers and five practitioners. There were differences in opinion on what were important environmental considerations. People with dementia and family carers identified comfort through engagement, feeling at home, a calm environment, privacy and dignity and use of technology to remain connected as important. For practitioners, design to facilitate duty of care and institutional influences on their practice were salient themes. Twenty one experts in the dementia field took part in the survey to agree a consensus on the desirable features derived from analysis of focus group transcripts, with fifteen features agreed.ConclusionsThe fifteen features are compatible with the design principles for people with dementia who are mobile, but include a stronger focus on sensory engagement. We suggest that considering these features as part of a continuum of care will support good practice and offer those with dementia the opportunity to live well until the end and give their families a more positive experience in the last days of their lives together.

Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach

BackgroundThis paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.MethodsSystematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.ResultsOf 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.ConclusionsIn many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.

Designing a Spoken Dialogue Interface to an Intelligent Cognitive Assistant for People with Dementia

Intelligent cognitive assistants support people who need help performing everyday tasks by detecting when problems occur and providing tailored and context-sensitive assistance. Spoken dialogue interfaces allow users to interact with intelligent cognitive assistants while focusing on the task at hand. In order to establish requirements for voice interfaces to intelligent cognitive assistants, we conducted three focus groups with people with dementia, carers, and older people without a diagnosis of dementia. Analysis of the focus group data showed that voice and interaction style should be chosen based on the preferences of the user, not those of the carer. For people with dementia, the intelligent cognitive assistant should act like a patient, encouraging guide, while for older people without dementia, assistance should be to the point and not patronising. The intelligent cognitive assistant should be able to adapt to cognitive decline.

Improving care home design for people with dementia

With more people with dementia living in care homes in the UK than ever before, there is growing recognition that the design of such internal and external spaces should meet dementia friendly principles. This paper reports on one part of a study to evaluate the reliability and validity of two tools: The Design Audit Tool and the Environmental Audit Tool developed to audit how dementia-friendly internal and external environments (specifically care homes) are for people with dementia, and presents a qualitative analysis of the reports presented to care homes following each audit. Thirty care homes took part in the study to evaluate the design audit tools and, following good practice, received a home report detailing up to five design strengths and five limitations following the audit. Analysis of the home reports identifies variation and variability in meeting dementia-friendly principles as specified by both tools. Areas of variability included wayfinding, the use of colour and contrast, access to outside spaces, individualization of personal and communal spaces, lighting and opportunities to engage with the environment. This paper provides valuable insights into variability in care home design and identifies common areas of weakness and strength in care homes of different type, ownership and localities.

The nourishing soil of the soul-: The role of horticultural therapy in promoting well-being in community-dwelling people with dementia

Two-thirds of people with dementia reside in their own homes; however, support for community-dwelling people with dementia to continue to participate in everyday activities is often lacking, resulting in feelings of depression and isolation among people living with the condition. Engagement in outdoor activities such as gardening can potentially counteract these negative experiences by enabling people with dementia to interact with nature, helping to improve their physical and psychological well-being. Additionally, the collaborative nature of community gardening may encourage the development of a sense of community, thereby enhancing social integration. Despite increasing evidence supporting its therapeutic value for people with dementia in residential care, the benefits of horticultural therapy have yet to be transposed into a community setting. This paper will examine the theoretical support for the application of horticultural therapy in dementia care, before exploring the potential of horticultural therapy as a means of facilitating improved physical and psychological well-being and social integration for people living with dementia within the community.

Facilitating independence: The benefits of a post-diagnostic support project for people with dementia:

Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and self-confidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps.

Can a systems approach reduce adverse outcomes in patients with dementia in acute settings? (innovative practice)

Abstract People with dementia experience adverse outcomes such as pressure sores during their stay in acute hospitals. The application of a systems approach in an acute setting places an emphasis on the patient’s journey in addition to the organisational factors that are present within a hospital context. This article draws upon principles obtained from a theoretical model, which was extracted from the work of Edwards (1972), Hawkins (1987) and Zecevic et al. (2007), in order to illustrate how the application of a novel systems approach (human interaction, environment, equipment and policy) could be used in acute hospital settings to reduce adverse health outcomes by using an imaginary patient with dementia.