Dementia Care Practice Research Articles

Academic reawakening: Situated experiences of undertaking a post graduate masters course in dementia

Master's level education can play important function in developing the knowledge and skills for nurses and allied professionals working in advanced roles in dementia care. However, little is known about the challenges experienced by professionals when making the transition to post-graduate study. This was a qualitative study comprising individual interviews with 15 graduates, nine of whom were nurses, who had experience of attending a part-time Master's in Dementia Care in the Northwest of England. Four sequential themes emerged from the data: ‘Deciding what to do’, ‘Taking it on’, ‘Keeping going’ and ‘Endings and New beginnings’. Findings confirmed that Master's education for nurses and other professionals is significant in developing knowledge and instilling confidence in changing practice. Nevertheless, professionals experienced challenges in juggling the competing demands of education, family and work and were seen to navigate and negotiate their student journey by drawing on internal resources and external supports. The study adds to evidence that Master's level study is likely to benefit practice in dementia care; however, employers and Higher Education Institutions need to develop effective and flexible supports to enable nurses and allied professionals to engage effectively in part-time taught post graduate education.

Person-centered dementia care in acute hospital wards—The influence of staff knowledge and attitudes

Person-centered dementia care practices in acute hospital wards are suboptimal and not commonly measured. Although previous research has indicated that the work environment of staff influences their perceptions of person-centeredness, few studies have examined how their personal attributes, such as their level of dementia knowledge and attitudes, influence their person-centered dementia care practices. A questionnaire was distributed to test the relationship between staff perceptions of person-centered dementia care and their dementia knowledge and attitudes in general medical wards. The results showed that staff with better dementia knowledge were significantly more critical about the extent they were using evidence-based guidelines and external expertise. Staff with better attitudes perceived themselves as using more individualized care practices. The findings demonstrate that to enhance person-centered dementia care in acute hospitals, staff training programs should develop both their intellectual and interpersonal skills to improve their knowledge and attitudes.

Connections with nature for people living with dementia

Purpose The benefits of “green dementia care”, whereby people living with dementia are supported to connect with nature, are increasingly being recognised. Evidence suggests that these benefits span physical, emotional and social spheres and can make a significant contribution towards quality of life. However, care settings often present specific challenges to promoting such connections due to a range of factors including risk-averse cultures and environmental limitations. The purpose of this paper is to report on a project that aims to explore the opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in residential care and extra care housing schemes in the UK. Design/methodology/approach Data were gathered from 144 responses to an online survey by managers/staff of extra care housing schemes and care homes in the UK. In depth-case studies were carried out at three care homes and three extra care housing schemes, involving interviews with residents, staff and family carers. Findings A wide variety of nature-based activities were reported, both outdoor and indoor. Positive benefits reported included improved mood, higher levels of social interaction and increased motivation for residents, and greater job satisfaction for staff. The design and layout of indoor and outdoor spaces is key, in addition to staff who feel enabled to promote connections with nature. Research limitations/implications This paper is based on a relatively small research project in which the participants were self-selecting and therefore not necessarily representative. Practical implications The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes. Social implications Outdoor activities can promote social interaction for people living with dementia in care settings. The authors’ findings are relevant to the recent policy focus on social prescribing. Originality/value The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes.

The significance of overlooked objects: Materiality and care at home for people with dementia.

An increase in the number of older people with dementia is currently a trend around the world. In low and middle countries, effective public health services are not yet well-developed, and family care-givers may be overwhelmed by the requirements of care. This paper has two purposes: to share findings from an ethnographic study about family dementia care practices in Brazil and to draw attention to the significance of the materiality of care practices in the family context. The study was conducted in Belo Horizonte, Brazil. We describe the care trajectory of one family and, analysing data using the insights of Actor Network Theory, show the significance of objects in a networked relation of care. In particular, we show how incontinence products such as adult diapers assume different positions in the network, acting as either mediator or intermediary of care in relation to other elements of the network composed of family members and their living situation, the person with dementia herself, the doctor, and Brazilian health policies. Although the diaper is often seen as an ordinary object for care providers, its participation in a care network shapes relations, activating conflict, financial constraint, and disciplining the body of the person with dementia.

Uncertainty and health literacy in dementia care.

The number of dementia cases increases with age, and the prevalence of dementia at the age above 80 is approaching 20% in Taiwan. Dementia is not simply a neurological disorder, but also a long-term care issue in public health and a matter of social adaptation. Scientific discoveries about dementia diagnostics, therapeutics, and preventive strategy have become the focus of media attention, but always updated and overwhelmed, which appears to increase rather than decrease the uncertainty and complexity of health communication in dementia care. Health literacy is essential for patients to understand medical information, utilize medical resources, and make shared decisions; however, the capacity to handle health information is often compromised in older adults with cognitive decline. Both ends of the increased uncertainty in dementia science and the reduced capacity in older adults are major challenges in dementia care. Dementia literacy, defined as knowledge and beliefs regarding dementia that aid recognition, management, or prevention, plays a vital role in effective care risk assessment and communication. However, little is known about the current state of dementia literacy among older adults, people with dementia, and their caregivers, and how well the dementia care practice can be implemented at the individual level is questionable. Empowering caregivers with adequate dementia literacy and developing a risk communication model in practice will translate the power of knowledge to effective care strategies, thus ameliorating the caregiver burden and enhancing the life quality of people with dementia in the long run.

Vulnerabling People

In dementia research and care practice and there has been a turn to try to offer approaches that acknowledge the patient’s personhood and agency and protect the rights of the vulnerable. Yet while defining people as demented or vulnerable, the focus is on the disabilities of and dysfunctions in the patient, and the strengths are left undiscussed, thus ignoring an important part of being a person. I move the focus from disabilities to strengths and call for more attention to be paid to other ways of interaction with vulnerable people. As an example, I consider ‘making’ as a form of creative interaction and how this applies to people living with dementia. My focus is on the phenomenological experience of the world. I argue that this offers a perspective that shows the value in embodied knowledge and making practices in a manner that acknowledges the agency and ability to interact with the world, even when other forms of interaction might not seem possible.
 Keywords: agency, art, dementia, making, phenomenology, vulnerability

Ethical practice in dementia care.

This article draws on a range of case study examples from dementia care and explains how ethical theory can be applied to enhance professional practice. Ethical concepts are critically examined in this context and tensions between them are explored. The article demonstrates how an established ethical framework can assist with application in practice situations. It also argues that cultivating virtues, such as courage and receptivity, is an essential aspect of providing ethical nursing care for people with dementia.

Fake bus stops for persons with dementia? On truth and benevolent lies in public health

Fake bus stops are one strategy to keep persons with dementia (PwD) from wandering. By setting up authentic looking shelters and benches in hallways or gardens, nursing homes create the illusion of bus stops, for the purpose of preventing wandering PwD from leaving the facility and getting lost. By attracting wandering PwD to sit down and wait for the bus, they can be supervised more easily by caregivers. However, concerns are expressed that the use of fake bus stops could cause more harm than good for PwD, due to their deceptive nature and the potential stigmatisation of individuals seated at a fake bus stop. This article discusses the ethical aspects of using fake bus stops and outlines considerations prior to setting up fake bus stops in nursing homes in keeping with good clinical practice in dementia care. Moreover, the article assesses whether or not fake bus stops can be ethically justifiable, and if so, how they can be ethically justified and implemented in Israeli and other facilities for PwD.

The Significance of Local Community in Dementia Care Practices: Focusing on Preserving and Deconstructing the Coherent Identity of People with Dementia

The Significance of Local Community in Dementia Care Practices: Focusing on Preserving and Deconstructing the Coherent Identity of People with Dementia

A Needs Assessment of Family Physicians to Inform Development of Educational Resources on Antipsychotic Use in Dementia.

Objectives: Objectives of this study were to (1) assess the needs and preferred resources of Iowa physicians to inform the development of educational resources for best practice dementia care and (2) compare the responses of nursing home medical directors with nonmedical directors. Methods: Of 498 physicians, 101 (20%) completed and returned the survey. Family physicians were obtained from a list of family physicians from the Iowa Board of Medical Examiners. Respondent answers were summarized and presented as total numbers and percentages in tables. Significant differences between medical directors and nonmedical directors were evaluated using chi-square tests, Fisher exact tests, and Wilcoxon rank-sum tests. Results: Medical directors and nonmedical directors had similar preferences for resources used and information needs. Online resources, pocket guides, a handbook, consulting pharmacists, and facility in-services were the most commonly preferred sources of new information. Medical directors were significantly more aware of the Food and Drug Administration warning on antipsychotic use in dementia and treated more nursing home patients. No differences were observed between groups related to confidence in and use of nondrug strategies instead of antipsychotics to manage behavioral symptoms of dementia. Conclusion: The results of this survey illustrate physician preferences for information and resources on the management of behavioral and psychological symptoms in dementia. Information was used to inform the development of resources to aid physicians and other health care providers in making decisions about managing these symptoms.

ALL BEHAVIOUR HAS MEANING: CONCEPTUALIZING CHALLENGING ASSUMPTIONS IN DEMENTIA CARE

“All behaviour has meaning” is one of the central tenants of dementia care research and education. Yet, the question, “What is behaviour?” is often left unasked within dementia care research, education, practice and policy. Drawing from perspectives in cultural gerontology, interpretive sociology and critical disability studies, this presentation theorizes ‘challenging’ assumptions about behaviour in discourses of dementia care. Our constructivist conceptual analysis of behaviour leads to a consideration of the behaviourist tradition in psychology, and the biopsychosocial model of dementia care and Thomas Kitwood’s and Carl Rogers’ seminal works on meaning, personhood and relationships. Within this tradition and these works, what behaviour means and why it matters is informed by ideas about adaptation and adjustment; concepts which posit behaviour as an expression (and measure) of the ‘person-environment fit’, and by virtue of that, a means of recognizing some people as out of place. Through unpacking the meaning of behaviour as a ‘challenging assumption’ in dementia care, we trace the relations between behaviour and personality. We contend that scholarly work of this nature within gerontology is critical to understanding the social significance of person-centred dementia care, and the challenges and opportunities a behaviourist approach poses for recognizing personhood in dementia.

Music therapy and dementia care practice in the United Kingdom: A British Association for Music Therapy membership survey

The place of music therapy in the spectrum of musical interventions in dementia care needs to be better understood in light of the ‘supply’ and ‘demand’ of this provision. A semi-structured, online survey of British Association for Music Therapy members and affiliates was undertaken in summer 2017. It asked respondents to report on employment practice and settings, and experience in dementia-related music therapy. It asked about training received and given, and what barriers prevent wider availability of music therapy for people with dementia in the United Kingdom. Replies came from 188 people, 142 of whom were working with people with dementia. Most respondents reported working in the public or voluntary sector, but one in five was self-employed. Most (61%) were employed in residential care or hospital settings, for an average of 20 hours per week. The main factor that would increase music therapy provision in dementia care was seen as ‘greater awareness’ of music therapy amongst the general public and within the National Health Service. Nearly one-quarter (23%) thought that training and development could help increase provision. This was the largest survey undertaken to date of dementia practice by Music Therapists in the United Kingdom. It has implications for recruitment, professional development, promotion of the specialism and research.

Response to Justine Schneider’s article ‘Music therapy and dementia care practice in the United Kingdom: A British Association for Music Therapy membership survey’

Response to Justine Schneider’s article ‘Music therapy and dementia care practice in the United Kingdom: A British Association for Music Therapy membership survey’

Indirect Music Therapy Practice and Skill-Sharing in Dementia Care.

Public interest in the benefits of music for people with dementia has rapidly increased in recent years. In addition to clinical work with clients, music therapists are often required to support and train staff, families, and volunteers and skill-share some music therapeutic skills. Six music therapy researchers from six countries agreed it was timely to organize a roundtable and share their indirect music therapy practice and examples of skill-sharing in dementia care. This article was developed following the roundtable at the World Congress of Music Therapy in 2017 and further discussion among the authors. This process highlighted the diversity and complexity of indirect music therapy practice and skill-sharing, but some common components emerged, including: 1) the importance of making clinical decisions about when direct music therapy is necessary and when indirect music therapy is appropriate, 2) supporting the transition from direct music therapy to indirect music therapy, 3) the value of music therapy skill-sharing in training care home staff, 4) the need for considering potential risks and burdens of indirect music therapy practice, and 5) expanding the role of music therapist and cultivating cross-professional dialogues to support organizational changes. In indirect music therapy practice, a therapist typically works with carers and supporters to strengthen their relationships with people with dementia and help them further develop their self-awareness and sense of competence. However, the ultimate goal of indirect music therapy practice in dementia care remains the wellbeing of people living with dementia.

WITHDRAWN

Alzheimer's & DementiaVolume 14, Issue 7S_Part_31 p. P1643-P1643 Oral Sessions: O5-02: Dementia Care Practice: Dementia Care Delivery and Knowledge ExchangeFree Access O5-02-04: WITHDRAWN First published: 01 July 2018 https://doi.org/10.1016/j.jalz.2018.06.3004AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article. Volume14, Issue7S_Part_31July 2018Pages P1643-P1643 RelatedInformation

IMPROVING KNOWLEDGE AND PRACTICE THROUGH MASSIVE OPEN ONLINE DEMENTIA EDUCATION: THE UNDERSTANDING DEMENTIA AND PREVENTING DEMENTIA MOOCS

There is a documented need and growing demand for evidence-based consumer-friendly education to enable more effective dementia care and wider adoption of strategies to prevent dementia. The Wicking Dementia Research and Education Centre developed the Understanding Dementia Massive Open Online Course (UD-MOOC) to increase knowledge of dementia and person-centered care practices, particularly for those providing care. The Centre's Preventing Dementia MOOC (PD-MOOC) was developed to educate people on the scientific basis of dementia risk reduction, both those interested in reducing their own risk, and those providing related services. The 9-week UD-MOOC examined how the brain is affected by diseases that cause dementia, symptoms, diagnosis, stages, management, and perspectives of those affected and caregivers. The 5-week PD-MOOC explored non-modifiable and modifiable risk factors, myths about dementia risk and causes, and barriers and enablers of health-behaviour change. MOOC completion was defined as a passing grade of 70% on 3 quizzes. To assess MOOC impact, completing participants were asked how they had applied knowledge gained and a natural-language processing algorithm was used to identify common themes. Six iterations of the UD-MOOC from 2013 to 2017 attracted a total of 119,611 enrolments, with 47,793 (40%) completing the course. Two offerings of the PD-MOOC in 2016 and 2017 attracted 27,048 enrolments and 13,778 (51%) completed. 76% of 2017 UD-MOOC and 75% of 2017 PD-MOOC feedback survey respondents agreed they had already applied the knowledge gained from the MOOC. Thematic analyses revealed UD-MOOC completers were applying a more person-centered approach to care, changing work practices, and sharing knowledge with others, and had improved understanding of dementia, and more empathy for and confidence in supporting people experiencing dementia. PD-MOOC completers specified they were increasing physical, social and cognitive activity, improving their diet, losing weight, having check-ups for vascular risk factors, more motivated to reduce their risk, and sharing knowledge with others. The large enrolments and high completion rates for Wicking's dementia MOOCs highlight the scale of demand for accessible quality dementia education. Participant feedback demonstrates that the MOOCs are improving both knowledge and practice, with potential large-scale impacts for dementia care and prevention.

PLANNING FOR SUCCESS: A MODEL FOR GUIDING AND SUPPORTING FAMILIES IN LONG-TERM CARE

Losing a person loved to Alzheimer's disease or dementia is a very sad, stressful and emotional time for a family. Despite increasing numbers and awareness of Alzheimer's disease and dementia, many families receive little information about the disease process, what to do or what to expect. When care is more than a family can manage they turn to long-term care as the experts to provide that care. Many families lack experience with long-term care and are unaware of what to expect for themselves and those they love. They are often exhausted, defeated, frightened and guilt-ridden. Research and experience has shown that an initial and ongoing family education and support program can ease guilt, improve care, communication and relationships with staff, and overall family satisfaction. This session will share an organization – wide, proactive program designed to inform, enhance knowledge of disease progression, and facilitate communication and incorporate related recommendations from the Alzheimer's Association 2018 Dementia Care Practice Recommendations based on review of current evidence, best practice and expert opinion. This session will address: 1) market research on why/how families make the decision for long-term care; 2) providing dementia education and resources to families in need; 3) addressing preadmission fears and desires; 4) a family-oriented admission process; 5) developing systems for collecting from families and disseminating person-centered information; 6) ongoing mechanisms for communication; 7) a proactive approach for concerns and complaints; 8) effective care conferences; 9) educational and informational family meetings; 10) promoting and encouraging resident, staff and family relationships; 11) Evaluating systems and progress routinely for continuous improvement; and 12) family surveys. This session will offer practical methods for replication, share the research methods as well as the beneficial outcomes for families, residents, staff and facility.

DEVELOPING A SUCCESSFUL, PERSON-CENTERED MEMORY CARE WORKFORCE: 2018 DEMENTIA CARE PRACTICE RECOMMENDATIONS

It is imperative that long-term care begins to utilize leadership programs that espouse a person-centered approach by all staff, particularly for memory care. Employees who are prepared for their role - educated, supported, included in decisions, valued, cared for and nurtured - have greater job satisfaction and enhanced performance, and in turn will provide enhanced dementia care for those they serve. This session will share workforce recommendations from the Alzheimer's Association 2018 Dementia Care Practice Recommendations based on review of current evidence, best practice and expert opinion. The session will also incorporate a “people-centered” organizational and leadership model, “SERVICE,” developed in a successful Alzheimer's facility. SERVICE is grounded in the literature and based on 25 years of operational experience, incorporating domains of practice including: Service; Education; Respect; Vision; Inclusion; Communication; and Enrichment. This program will address the 2018 recommendations including: 1) Provide a thorough orientation and training program for new staff, as well as ongoing training; 2) Develop systems for collecting and disseminating person-centered information; 3) Encourage communication, teamwork, and interdepartmental/interdisciplinary collaboration; 4) Establish an involved, caring and supportive leadership team; 5) Promote and encourage resident, staff and family relationships; and 6) Evaluate systems and progress routinely for continuous improvement. Additional components to be discussed include expectations for performance, respect as a foundation, shared visioning, and creating an enriching environment for those who live and work in the community. Success is found in ongoing evaluation, process improvement strategies and collective information sharing, which will also be addressed. Attendees will learn how person-centered memory care based on the needs of residents, families and staff is addressed by the model and the impact made on resident and staff satisfaction, employee retention, facility reputation and overall quality. Research and results on the initial framework will be discussed, including a 90% employee retention rate and 98.5% family recommendation rate, multiple consecutive deficiency-free surveys, and several state and national awards. Outcomes from the replication of the model from other organizations will be shared as well as practical, effective tools and ideas for attendees to develop an effective memory care staff culture in their own environment.

Personalisation, customisation and bricolage: how people with dementia and their families make assistive technology work for them

AbstractAssistive technologies (ATs) are being ‘mainstreamed’ within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by ‘bricolage’ or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in their creative engagements with technology by statutory health or social care services, making bricolage a potentially frustrating and wasteful process. Bricolage provides a useful framework to understand how technologies are used in the everyday practice of dementia care, and how technology use can be supported within care. Rather than implementing standardised AT solutions, AT services and AT design in future should focus on how technologies can support more personalised, adaptive forms of care.

Development of a Self-Report Checklist to Assess Dementia Care by Nurses in Hospital Settings

Nurses working at general hospitals face difficulties in providing dementia care. The current study examined aged care nurses' dementia care practices in the hospital setting and developed a dementia care checklist that nurses can use to review their own care practice. A self-administered questionnaire was given to 676 participants; responses were collected from 595 participants. Exploratory factor analysis identified six factors (e.g., patient understanding prompted by concern and interest for the patient, respect for patients' voluntary behavior, early detection of abnormalities) among the questionnaire's 28 items. This analysis provided a framework for the checklist and verified that it had satisfactory internal consistency and construct validity. The frequency of care practices varied with participants' knowledge of dementia care requirements, satisfaction with their own dementia care practice, confidence in their ability to judge patients' physical condition, and cooperation with colleagues. This checklist might improve dementia care in hospital settings. [Res Gerontol Nurs. 2018; 11(2):91-102.].