Person-centred Dementia Care Research Articles

EVALUATION OF DEMENTIA EDUCATION TRAINING IN GEORGIA NURSING HOMES

Abstract The increased use and misuse of antipsychotics and psychotropics in nursing homes have been well documented. Person-centered dementia care training that addresses skill development and practice change around communication strategies and non-pharmacologic approaches has the potential to impact the misuse of these drugs as chemical restraints. The goal of this study is to implement and evaluate an online team-based dementia education (Dementia Beyond Drugs: Changing the Culture of Care) program aimed at skill development and practice change. The program was delivered online over six weeks to teams of nursing home staff for a total of 12 hours of synchronous interactive learning. Teams were also assigned application exercises between meetings. Topics included “dementia, dementia beyond drugs, interpersonal approaches, and understanding personal expressions.” This study implemented the training with staff teams from 22 nursing homes in Georgia (N=97). Pre-post data analysis reveals a significant improvement in the nursing home environment and relationships as measured by the Kansas Culture Change Instrument, and increased attention to the use of antipsychotic drugs in staff meetings. This study indicates that team-based online learning has the potential to improve person-centered dementia care practices and attention to the use of non-pharmacological approaches to address behavioral expressions of residents living with dementia. Future research is needed to expand person-centered dementia care education programs to more nursing homes and evaluate their short and long-term effectiveness.

ASSOCIATION BETWEEN MOTOR ACTIVITY AND TOTAL NEUROPSYCHIATRIC INVENTORY NURSING HOME VERSION SCORES

Abstract Accurate neuropsychiatric symptoms (NPS) assessment monitoring is crucial for person-centered dementia care management. Doing so, however, is challenging, since current assessment tools rely on clinical observations, are time consuming, and are somewhat subjective in nature. The Neuropsychiatric Inventory Nursing Home Version (NPI-NH) is an informant-based assessment of 10 sub-domains of behavioral functioning where total NPI-NH score represents an overall behavioral disturbance level. We investigated the evidence pertaining to the diagnostic test accuracy (DTA) of motor activity tracking obtained via wearable sensor technology (WST) using total NPI-NH score as the gold standard in persons living with dementia (PLWD). This was part of a larger systematic review assessing the use of WST for NPS detection and monitoring carried out from inception until September 2022 (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=219917). A systematic literature search carried out in 7 library databases produced 12,928 articles from which 84 titles were retained for analysis. In total, 8 articles examined the validity of WST for assessing and monitoring of overall behavioral disturbance in PLWD, among which 5 studies used motor activity trackers. Dementia participants predominantly had Alzheimer’s, vascular or mixed dementia (40%, 20%, and 40% respectively), with mild-moderate severity. Three studies reported correlations between motor activity and total NPI score that ranged from 0.35 to 0.38. A random effects model indicated that the pooled correlation across studies was 0.37 (0.22-0.51), with no heterogeneity (I2=0%). While our sample reveals WST test accuracy as being consistently moderate, more research is necessary for confirmation.

PROVIDING DEMENTIA CARE ACROSS LOW-RESOURCE COMMUNITIES

Abstract The growing number of persons living with dementia (PLWD) require ongoing care and supportive services, but dementia care access and quality are more limited in communities with fewer health resources and these limitations are exacerbated by current dementia care workforce shortages. Across low-resource communities—including poorer urban and rural settings—health resources tend to be limited and PLWD are predominantly socioeconomically disadvantaged and have few personal financial resources to contribute to care provision. Although there is growing evidence about the consequences of care inequities for PLWD, less is known about key issues and opportunities for improving dementia care in low-resource communities. This symposium features presentations that highlight unique social and economic challenges and opportunities for providing dementia care in low-resource communities. The first presenter reports results from a community-based, participatory research study in four long-term care settings in federally designated medically underserved areas (two rural, two urban) that highlights strategies used by long-term care providers to recruit and retain dementia care staff and describes their perspectives on quality dementia care. The second presenter shares findings from an innovative pilot program of case management services to address challenges of PLWD who are living alone in the community through collaboration with local paramedicine services. The third presenter provides an overview of the Person-Centered Options Counseling Certification program with a discussion on strategies for implementing person-centered dementia care initiatives in low-resource communities. This symposium reveals complexities in providing care for PLWD in diverse low-resource communities and generates directions for addressing dementia care inequities.

FOSTERING CONSISTENT AND ENGAGING CARE FOR PEOPLE WITH DEMENTIA IN LONG-TERM CARE

Abstract Maintaining a stable and qualified direct care workforce in long-term care organizations has become increasingly difficult as shortages intensify, turnover increases, and the use of agency staff remains at high levels. Efforts to improve this situation need to include high quality training that is incorporated into onboarding, ongoing continuing education, and infused into the culture of the organization. Using data from our ongoing NIA-funded study, “Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia,” we describe the competencies used by direct care workers (DCWs) with exceptional capacity, or ability and resources to engage people with dementia, and the factors that promote or limit the development and use of these competencies. Focal residents with dementia (N=66) were followed at eight diverse assisted living communities for one year and 53 DCW were interviewed across three waves of data collection. Interview transcripts and fieldnotes from more than 2000 hours of observation were analyzed using a grounded theory approach. Organized by four engagement approaches: knowing the person, connecting with and meeting people where they are, being in the moment, and viewing all encounters as opportunities, we identified competencies and the multiple intersecting factors which impact meaningful engagement and competency development including community staffing, consistent assignment, scheduling, DCW training, DCW tenure, and community resources. Implications for practice, which emphasize the elaboration of specific competencies, have the potential to inform the development of DCW training, the promotion of supportive work environments, and social policy that support person-centered dementia care.

Dementia and communication.

People with dementia of all stages and subtypes can experience challenges with communicating. Therefore, it is vital that community nurses working with people with dementia have an understanding of the ways in which communication might be challenged, and that they have skills in communicating effectively. This article presents an overview of the ways in which dementia might impact on communication and offers the model of person-centred dementia care as a way of communicating effectively. The use of person-centred communication in practice is illustrated through a case study approach, highlighting the practical approaches that can be used by community nurses in their practice.

Clothing the Clown: Creative Dressing in a Day-center for People with Dementia in the Netherlands

ABSTRACT Creatief met clowns is a creative and art-based workshop for people living with dementia that invites participants to join in a collaborative process of creating an outfit and clothing a clown. In this article, I look at what happened in workshop sessions and how this mattered to those involved, including what participants with dementia valued about the activity — by listening to what they had to say, but also by attending to their performative, creative and affective ways of engaging in Creatief met Clowns. To further articulate values that came up in practice, I analyzed my findings in terms of the quality of psychosocial relations, the role of embodiment, material aspects, and playfulness in person-centered care. By combining an ethnographic study of art-based care-practice with a value-sensitive theoretical reflection on empirical findings, my approach offers an alternative to problematic efforts to quantify the value of art in person-centered dementia care.

Delivering person-centred dementia care: Perceptions of radiography practitioners within diagnostic imaging and radiotherapy departments.

Despite abundant literature on the diagnosis of dementia, limited research has explored the lived experiences of radiography practitioners when providing care to people living with dementia in the department. This qualitative study explored the perceptions and compatibility of current professional guidance by both diagnostic imaging and radiotherapeutic radiography practitioners as well as the key stakeholders involved with developing the Society and College of Radiographers clinical practice guidelines for caring for people with dementia. This was a two-phase multi-method study. Fifteen diagnostic imaging and two therapeutic radiography practitioners from across the UK participated with online focus group discussions. Four key stakeholders involved with the development of the Society and College of Radiographers guidelines took part with individual semi-structured interviews. Data analysis included narrative and thematic analysis. Participants from both phases identified enablers and barriers to providing person-centred dementia care. Three superordinate themes were identified linked to (1) Working with care partners, (2) Departmental environmental design, and (3) Communication and interprofessional infrastructure. Many radiography practitioners still feel unprepared when caring for people living with dementia despite the clinical practice guidelines. Care partners were identified as having the potential to help alleviate some of the challenges radiographers faced. Participants were also aware of the impact of the departmental environment and recognised that poor way finding designs could lead to frustration. Radiography practitioners were not always aware that a patient was living with dementia prior to their attendance in the department making it difficult for practitioners to make appropriate accommodations such as additional time at appointments or the departmental environment. Our findings suggest there is a need for profession specific education and training for radiography practitioners to support the provision of person-centred dementia care. There is also a need to support the design of dementia friendly diagnostic imaging and radiotherapy departments.

Supporting Sustained STAR-VA Implementation: Evaluation of a Sustainment Coaching Program.

The Veterans Health Administration (VA) STAR-VA program is a person-centered, interdisciplinary intervention for managing distress behaviors in dementia in VA nursing homes, called Community Living Centers (CLCs). Teams often struggle to sustain STAR-VA after site-lead partner turnover. The STAR-VA Sustainment Coaching Program was developed to support a new local STAR-VA behavioral coordinator and/or nurse champion (ie, site-leads) and engage the team to implement sustainment strategies. The aims of this evaluation were to document sustainment needs, barriers and facilitators, and effective strategies used during a sustainment intervention. We describe qualitative and quantitative findings of a program evaluation of the STAR-VA Sustainment Coaching pilot program. Eight CLC teams participated in the pilot program, 5 training a new nurse champion, 2 a new behavioral coordinator, and 1 both new site-leads. CLC teams completed a needs assessment, developed sustainment goals and plans, tracked sustainment interventions implemented, and reported case outcomes. Outcome assessment and tracking reports were summarized and themes identified using a qualitative inductive approach. Common sustainment needs were to train a new nurse champion, promote staff understanding of dementia and distress behaviors, and promote a culture of person-centered dementia care. Most sites selected sustainment goals of implementing training procedures and behavioral rounds. Sustainment barriers included limited staff time, staff turnover, lack of supportive routines and tools, and limited awareness of STAR-VA. Facilitators included leadership support, staff interest, and training resources. Most sites reported successful implementation of STAR-VA behavior rounds, whereas strategies to achieve training-related goals had variable success. The STAR-VA Sustainment Coaching Program helped CLC teams identify and implement strategies to support sustained STAR-VA implementation. The results of this project are informing ongoing efforts to integrate STAR-VA components into usual care processes for CLC residents with dementia.

The tradeoff between an open or closed unit for residents with dementia: a qualitative study

There is growing attention for freedom of movement as part of person-centred dementia care. Although a closed door can reduce safety risks, it also reduces quality of life. Care organization tanteLouise strives for maximum responsible freedom for residents with dementia. Nevertheless, residents are sometimes transferred from an open to a closed psychogeriatrics (PG) department. To explore healthcare professionals' considerations in transferring residents from an open to a closed psychogeriatrics [PG] ward within tanteLouise. Semi-structured in-depth interviews with carers and nurses from open and closed PG and a multidisciplinary focus group. The data has been analyzed thematically. According to the participants, both open and closed PG can provide a suitable living environment, depending on individual residents. Open PG facilitates freedom and self-direction, and closed PG offers security, structure and expert guidance. Before a transfer, the multidisciplinary team discusses possibilities and risks on open PG. Despite this, residents regularly move to closed PG without a valid reason. Participants strive for more freedom for residents with dementia, for which they believe preconditions are still lacking. The provided structure and expert guidance on closed PG must also be present on open PG to maintain freedom for residents with dementia. In addition, a culture change and preconditions from the organization are necessary.

Dementia education and training for caregivers supporting older people with intellectual disability: a scoping review of the literature

PurposeEducation and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related needs of people. This paper aims to examine the impact dementia education has on caregivers’ confidence to provide person-centred care for people with intellectual disability and identifies additional training needs.Design/methodology/approachA systematic scoping review was completed using preferred reporting items for systematic reviews and meta-analyses to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability.FindingsA search of five electronic databases identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age-related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers’ confidence in meeting the physical and psychological needs of older adults with intellectual disability.Originality/valueThis review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person-centred dementia care.

Person-attuned musical interactions (PAMI) in dementia care. Complex intervention research for constructing a training manual.

Music is of vital importance for cognition, human care, and the formation of social communities throughout life. Dementia is a neurocognitive disorder that affects cognitive domains, and in late-stage dementia, care is needed in all aspects of daily living. Within residential care home contexts, carers play a significant role for the "caring culture" but often lack professional training in verbal and non-verbal communication skills. Thus, there is a need for training carers to respond to the multidimensional needs of persons with dementia. Music therapists use musical interactions but are not trained to train carers. Therefore, our aim was to explore person-attuned musical interactions (PAMI), and additionally, to develop and evaluate a training manual to be used by music therapists when supporting and training carers in non-verbal communication with persons with late-stage dementia in residential care home contexts. With a realist perspective and systems thinking and within the framework for complex intervention research, the research group integrated several overlapping subprojects by applying a non-linear and iterative research process. Core elements related to person-centered dementia care as well as learning objectives were considered through the following four phases; Developing, Feasibility, Evaluation, and Implementation. The result was a training manual for qualified music therapists to use when teaching and collaborating with carers about how to implement PAMI in dementia care. The manual included comprehensive resources, a clear structure for training, defined learning objectives, and integration of theory. With increased knowledge about caring values and non-verbal communication, residential care home cultures may develop carer competencies and provide professional attuned care for persons with dementia. Further piloting and testing to examine the general effect on caring cultures is needed.

‘Making the most of time during personal care’: nursing home staff experiences of meaningful engagement with residents with advanced dementia

Objectives Dementia progressively affects cognitive functioning, including the ability to communicate. Those who struggle to communicate are often considered unable to relate to other people. Frontline care workers are in a position to connect with residents. However, we know little about their perspectives. The aim of this study was to understand how and when nursing home staff meaningfully engaged with residents with advanced dementia. Methods Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts. Results Four themes related to how staff engaged with residents with advanced dementia (initiating meaningful engagement, recognising subtle reactions, practising caring behaviours, patience and perseverance). Two themes related to when meaningful engagement occurred (lacking time to connect, making the most of time during personal care). Conclusion A key barrier to implementing formal interventions to improve care is lack of staff time. Staff overcome this by using personal care time for meaningful engagement with residents. Their approach, developed through experience, is consonant with person-centred dementia care. Building on this, future research should use participatory approaches building on practice wisdom to further develop and evaluate meaningful engagement with residents with advanced dementia.

EXPERIENCES OF DISTRICT NURSES WITH MAKING DECISIONS ABOUT THE USAGE OF INVOLUNTARY TREATMENT

Abstract District nurses play a key role in care of older Persons Living with Dementia (PLWD) who still live in their own home environment. Studies show that they often have to deal with decision-making about and the usage of involuntary treatment. Involuntary treatment is care provided that they resist to and/or have not given consent to, such physical restraints, psychotropic medication. This study aimed to describe district nurses’ experiences regarding the decision-making processes about and the usage of involuntary treatment among PLWD. A qualitative study design with a grounded theory approach was used. During semi-structured interviews, 16 district nurses shared experiences in 31 different cases of involuntary treatment use among PLWD. Results show that district nurses were often not involved in the decision-making process. In most cases, family caregivers decided solely to use involuntary treatment, and district nurses were asked to do also. District nurses experienced these situations as difficult to deal with. They felt that they were torn between providing “good care”, wishes of PLWD, and meeting the expectations of family caregivers. Their experiences were negatively affected if PLWD verbally rejected the care provided, they were unable to enter into a dialogue with the caregivers about the care provided, and if they did not have sufficient knowledge about how to deal with PLWD. These findings indicate the importance, of proactive case management in dementia care at home. District nurses can facilitate this by going into dialogue between PLWD and his caregivers, in order to provide person-centered dementia care at home.

Providing person-centred dementia care on general hospital wards.

Dementia is caused by conditions that result in a progressive loss of brain function. People with dementia often have complex multimorbidity which increases their risk of admission to hospital. However, care in acute hospitals is often not adapted to patients with dementia, who have reported negative experiences of their hospital stay from admission to discharge. Person-centred care has been shown to make a positive difference to how well people with dementia cope in hospital. This article discusses how nurses working on general hospital wards can enhance the experiences of people with dementia and improve their outcomes by providing person-centred care.

Person-centredness in dementia care: study protocol for an integrative review of theoretical approaches

IntroductionThe concept of personhood is particularly important in person-centred dementia care because its overall aim is to maintain the personhood of people living with dementia despite disease progression. In a...

Understanding person-centered dementia care from the perspectives of frontline staff: Challenges, opportunities, and implications for countries with limited long-term care resources.

Semi-skilled or unskilled nursing care aides primarily provide direct care to residents in long-term care (LTC) facilities in China and many other countries around the world. There has been a significantly increased commitment from nurses and other formally trained professionals to provide person-centered care (PCC) for people with dementia (PwD). However, it is still unclear how nursing care aides who provide direct care to older residents with dementia understand and adopt PCC in their daily work. It is of utmost importance to understand person-centered dementia care from the perspectives of care aides, and to identify implications to facilitate and sustain their efforts in providing quality care for older residents with dementia. We adopted a descriptive qualitative approach and interviewed 40 care aides from 5 nursing homes in China. The interview methods followed the consolidated criteria for a qualitative research report. We found that the seemingly beneficial mental models used by care aides in their work can hinder them from playing a more adaptive role in tailoring their care to the needs of older residents. Infantilizing older residents with dementia and labeling them using mother wit can prevent meaningful, equal, and person-centered conversations between both parties. Care aides do not have regular formal interactions and sense making with nurses and other professionals in nursing homes. Increasing interactions and communication between care aides and health care professionals in nursing homes can lead to insight for changing the approach to in-service training to achieve better acceptance by care aides. The current study derives implications for operationalizing and embedding the principles of PCC in daily care.

The role of interior design in promoting a sense of home in people with dementia living in care facilities

With the introduction of the person-centred dementia care model, the interior design of care facilities has increasingly emphasised the need to make people with dementia (PWD) feel at home. The sense of home can improve the quality of life after relocating to long-term care facilities. However, the effectiveness of the current design approach is debatable because it ignores the intrinsic meaning of home. Therefore, the purpose of this study is to propose a new design approach to interior design that brings a sense of home to PWDs through the intrinsic meaning of home. It first defines the intrinsic meaning of home as an ‘intimate relationship’ between people and space, and then proposes a hypothesis that PWDs can re-establish this relationship through bodily habits. The ethnographic case studies verified it and explained how the interior environment influences it. Finally, based on the previous findings, this research develops the design framework and design guidelines.

Supporting person-centred dementia care following the COVID-19 pandemic.

In recent years, nurses have experienced increased workplace pressures in part due to the coronavirus disease 2019 (COVID-19) pandemic, which exacerbated challenges in the delivery of person-centred dementia care. This article examines how people with dementia were affected by the COVID-19 pandemic, as well as exploring the ongoing effects on nurses and the care they provide for people with dementia. The author discusses the importance of dementia awareness and education for nurses that supports them to promote the needs of people with the condition. The article also outlines how nurse leaders can promote person-centred care for people with dementia through reflection and clinical supervision.

Using the Consolidated Framework for Implementation Research to Foster the Adoption of a New Dementia Education Game During the COVID-19 Pandemic.

Background and ObjectivesThe pandemic of coronavirus disease 2019 (COVID-19) challenged educators to move staff education online and explore innovative ways to motivate learning to support dementia care for patients in geriatric settings. This article presents how the Consolidated Framework for Implementation Research (CFIR) was used to support the adoption of an online dementia education game in Canadian hospitals and long-term care homes (LTC). The dementia education was co-developed with local staff and patient partners to teach practical person-centered care communication techniques.Research Design and MethodsCFIR guided our strategy development for overcoming barriers to implementation. Research meetings were conducted with practice leaders, frontline healthcare workers, and a patient partner. Our analysis examined four interactive domains: intervention, inner context, outer settings, and individuals involved and implementation process.ResultsOur analysis identified five effective strategies: Easy access, Give extrinsic and intrinsic rewards, Apply implementation science theory, Multiple tools, and Engagement of champion. The CFIR provided a systematic process, a comprehensive understanding of barriers, and possible enabling strategies to implement gamified dementia education. Interdisciplinary staff (n=3,025) in ten hospitals and ten LTC played online games. The evaluation showed positive outcomes in knowledge improvement in person-centered dementia care.Discussion and ImplicationsGamified education in dementia care offers a social experience and a component of fun to promote adoption. In addition, CFIR is useful for engaging stakeholders to conduct project planning and team reflection for implementation. The real-time discussion and adjustment helped overcome challenges and timely meet the needs of multiple organizations.

Overcoming COVID-19 Constraints on Person Centered Dementia Care: A Narrative Inquiry of Lived Experiences of Residential Care Staff in Belgium

Context: Person-centredness is integral to high-quality dementia care. The coronavirus prevention and control measures significantly disrupted delivery of person-centred dementia care.Objective: To explore the lived experiences of residential care staff of overcoming the coronavirus constraints on person-centred dementia care.Methods: A narrative correspondence inquiry undertaken between August and October 2020 engaged three (n = 3) residential care staff in Belgium. Criterion sampling included staff involved in caring for people with dementia in an organisation providing a multitude of residential care services.Findings: Four overarching themes were identified, comprising the chaos embedded in uncertainties, restructuring the service, transition shock, and reorienting the service to person-centred care. Working with unfamiliar procedures disorganised the care environment and the ability for residents to take part in meaningful activities. Residential care staff creatively remodelled person-centredness around the coronavirus prevention and control measures to restore continuity of good standards of dementia care.Limitations: The correspondence method of gathering narratives was opportune for undertaking qualitative research during the peak of the coronavirus pandemic and provided a means of exploring in-depth the experiences of staff. However, this study is limited to a small sample of participants from one organisation.Implications: The coronavirus pandemic not only introduced challenges but also prospects of effective ways of delivering care to adequately meet the needs of people with dementia. The hierarchical boundaries several disciplines often create in health and social care defy effective collaborations in dementia care.