Person-centred Dementia Care Research Articles

A systematic scoping review and synthesis of dementia and communication theory.

Aim This review considers the theoretical literature concerning communication between a person with dementia and a person without dementia. Methods Theoretical accounts of communication between a person with dementia and a person without dementia were identified through database searches, hand searching of reference lists and contacting experts in the topic area. Results Twenty-one articles were included in the final review, yielding 18 different theoretical accounts of communication in the context of dementia. Thematic synthesis showed that four categories could account for the majority of the material described in these theories, even though they were derived from very different perspectives. These categories were mutuality, personhood, anxiety reduction and environmental considerations. Discussion The four categories identified in the thematic synthesis were reminiscent of Kitwood’s theory of person-centred dementia care. Different interpretations of this finding are considered. Most theoretical accounts focused on the relational aspects of communication. This meant that societal and individual accounts of communication in the context of dementia were relatively impoverished in terms of theory. Conclusions There is widespread agreement regarding the important components of good quality communication in the context of dementia. This suggests exciting opportunities for collaboration between apparently disparate bodies of literature. Individual and societal accounts of communication in the context of dementia are relatively neglected and would benefit from more research.

Medication and care in Alzheimer's patients in the acute care setting: A qualitative analysis.

The acute hospital admission of patients with dementia is associated with poor outcome and higher costs. Much of our knowledge on how hospital stays are experienced by patients and staff is generated from short and fragmented data collections, in which the significance of knowledge about day-to-day care might be overlooked, and might partly explain why the poor outcome for this group of patients is not fully understood. This study used participant observation to follow patients with Alzheimer’s disease admitted to orthopaedic wards after fall incidents. To gather longitudinal data, patients were followed during day and evening shifts, from admission to discharge. The data were interpreted from a phenomenological-hermeneutic perspective, inspired by Ricoeur's interpretation theory. The data showed that, despite having little specific knowledge about dementia care, staff were able to gather information about the patient’s needs and wishes relevant to administrating medicine in a person-centred way. However, much of this valuable information was lost between shifts or became hidden among the overwhelming amount of information in electronic patient records. As a consequence, much of the knowledge about individual patients’ needs and wishes had to be collected all over again at every shift. The study concludes that careful handover of information on person-centred dementia care can play an important role in making hospital stays more dementia-friendly.

Person-centred communication in dementia care: a qualitative study of the use of the SPECAL® method by care workers in the UK

Communication has featured prominently in person-centred dementia care research, but no consensus has been reached on which communication techniques are most helpful in supporting person-centred care. This qualitative study explored communication techniques used by domiciliary and community care workers of people with dementia in the UK. Care workers trained in the SPECAL® method (Specialised Early Care for Alzheimer’s) were invited to semi-structured interviews. The data were analysed using a constructivist grounded theory approach. Themes from the data were discussed as a potential basis for developing a substantive theory. The care workers contributed to client well-being through modifying their communication techniques, expressing a protective, empathetic and reassuring approach, underpinned by reflection. Clients exhibited greater well-being and less anxious behaviour. The care workers’ use of SPECAL® communication methods, supported by supervision, may provide a unique combination of techniques, contributing to the development of caring relationships, to care worker and client well-being, and to the maintenance of client personhood.

The intersection of culture in the provision of dementia care: A systematic review.

To understand the intersection of healthcare professionals' and care workers' culture and their provision of person-centred care for people with dementia. Due to the nature of global immigration and recruitment strategies, health care is provided by a culturally diverse workforce. Consequently, there is a need to understand healthcare professionals' and care workers' cultural values of illness, disease and dementia. Cultural values and beliefs regarding dementia and care of the older person differ, and currently, there is a lack of clarity regarding the intersection of culture in the provision of person-centred dementia care. A search of the following databases was completed: Medline, CINAHL, Psychology and Behavioural Sciences, PsycINFO and PubMed for papers published from 1st January 2006 to 31st July 2016. A total of seven qualitative studies met the inclusion and exclusion criteria, all explored the impact of healthcare professionals' and care workers' culture in relation to their provision of person-centred dementia care. A meta-synthesis of the data from these studies identified four themes: cultural perceptions of dementia, illness and older people; impact of cultural perceptions on service use; acculturation of the workforce; and cross-cultural communication. Limited evidence was found on the impact of healthcare professionals' and care workers' culture on their provision of person-centred dementia care. The intersection of culture and dementia included the understanding of dementia, care and family roles. Acculturation of migrant healthcare workers to the culture of the host country, workplace, and support with the communication was identified as necessary for the provision of person-centred dementia care. Open access education and training to support communication is required, alongside the development of robust interventions to support the process of acculturation of migrant healthcare professionals and care workers to provide culturally competent person-centred dementia care.

A mixed method study of an education intervention to reduce use of restraint and implement person-centered dementia care in nursing homes

BackgroundPeople living with dementia in nursing homes are most likely to be restrained. The primary aim of this mixed-method education intervention study was to investigate which factors hindered or facilitated staff awareness related to confidence building initiatives based on person-centred care, as an alternative to restraint in residents with dementia in nursing homes. The education intervention, consisting of a two-day seminar and monthly coaching sessions for six months, targeted nursing staff in 24 nursing homes in Western Norway. The present article reports on staff-related data from the study.MethodsWe employed a mixed-method design combining quantitative and qualitative methods. The P-CAT (Person-centred Care Assessment Tool) and QPS-Nordic (The General Nordic questionnaire for psychological and social factors at work) instruments were used to measure staff effects in terms of person-centred care and perception of leadership. The qualitative data were collected through ethnographic fieldwork, qualitative interviews and analysis of 84 reflection notes from eight persons in the four teams who facilitated the intervention. The PARIHS (Promoting Action on Research Implementation in Health Services) theoretical framework informed the study design and the data analysis. Six nursing homes were selected for ethnographic study post-intervention.ResultsQualitative data indicated increased staff awareness related to using restraint - or not- in the context of person-centered care. A slight increase in P-CAT supported these findings. Thirteen percent of the P-CAT variation was explained by institutional belonging. Qualitative data indicated that whether shared decisions of alternative measures to restraint were applied was a function of dynamic interplay between facilitation and contextual elements. In this connection, the role of the nursing home leaders appeared to be a pivotal element promoting or hindering person-centered care. However, leadership-staff relations varied substantially across individual institutions, as did staff awareness related to restraint and person-centeredness.ConclusionsLeadership, in interplay with staff culture, turned out to be the most important factor hindering or promoting staff awareness related to confidence building initiatives, based on person-centered care. While quantitative data indicated variations across institutions and the extent of this variation, qualitative data offered insight into the local processes involved. A mixed method approach enabled understanding of dynamic contextual relationships.Trial registrationThe trial is registered at Clinical Trials gov. reg. 2012/304 NCT01715506.

071An Innovation to Delivering Person-centred Dementia Care in the Acute Hospital Setting: Dementia Companion Role

071An Innovation to Delivering Person-centred Dementia Care in the Acute Hospital Setting: Dementia Companion Role

The Experiences of People with Dementia and Their Caregivers in Dementia Diagnosis.

People can live well with dementia if they are diagnosed early and receive early interventions and appropriate dementia management and care. However, dementia is currently under-detected and under-diagnosed. The diagnosis rate is around 50% only in higher-income countries and 5-10% only in low- and middle-income countries. Studies on consumers' experiences in engaging in dementia diagnosis in a socio-cultural context are much needed in order to generate research evidence to inform person-centered dementia care and services. The aim of the study was to understand the experiences of people with dementia and their caregivers in engaging in dementia diagnosis. An interpretative study design informed by Gadamer's hermeneutic principles was applied to the present study to achieve the aim of the study. The study was strengthened by applying a social ecological framework to the study design. In total, 23 participants contributed to the interviews or focus group. Thematic analysis was applied to data analysis. Four themes were determined from data and described as: capabilities to detect the memory loss in an early stage, perceptions and beliefs of dementia in the community, different journeys toward the diagnosis and expectations of a smooth journey for others. These findings illuminate a social ecological perspective of improving early detection and timely diagnosis of dementia in the community settings. The findings of this study have implications for policy, resource, and practice development. Consumers expect that government subsidized dementia care services in primary care and specialist care settings are needed in order to enable consumer-driven timely diagnosis and dementia management in home care settings.

Assistive Technologies to Address Capabilities of People with Dementia: From Research to Practice.

Assistive technologies 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 Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyze how assistive technologies 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 assistive technologies 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 15 years (2000-2015), discusses current issues in the design, development and economic model of assistive technologies for people with dementia, and covers how these technologies are being used and assessed.

A NATIONAL APPROACH TO IMPROVING DEMENTIA CARE: THE DEMENTIA DYNAMICS TOOLKIT

Under the Encouraging Better Practice Initiative, the Australian Commonwealth Department of Health and Aged Care funded a team from Flinders University to develop and disseminate the Dementia Dynamics Toolkit to all residential aged care homes in the country with the aim of building capacity in person-centred dementia care. The DD Toolkit comprises a manual, eLearning and micro-training DVDs, and a website which provides access to technical and implementation support. A national sample of aged care staff and management were surveyed pre/post the dissemination of the toolkit. Data was also collected during the project via workshop evaluations, pop-up surveys online, email surveys and telephone interviews. Of the 2768 residential aged care homes in Australia, 60% have staff and management completing the eLearning. This paper provides an overview of the project and presents data collected specific to examining staff-based measures of individualised care (ICI), work practices, person-centred leadership and responsive behaviour in relation to completion of the eLearning. Data analysis indicates that in care homes where a critical mass of staff have completed the eLearning the general institutional climate has shifted, with a consequential decrease in responsive behaviour expressed by residents with dementia. Overall, staff and management who have completed the eLearning have higher individualised care scores, report more person-centred work practices and feel more empowered in their workplace. The flexibility of the toolkit is highlighted through descriptions of the different ways care homes have made use of the resources.

Respite in Dementia: An Evolutionary Concept Analysis.

There is a lack of conceptual clarity around 'respite' as it relates to people with dementia and their carers. This study provides clarification on the use and meaning of the term and considers the concept in relation to the dominant care paradigm in dementia, i.e. person-centred care. Rodgers' (1989) evolutionary framework was employed. A systematic search was conducted on the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia'. Papers with primary qualitative data and literature reviews were included. This search was supplemented with snowballing techniques (back/forward searching, generic search engines). Data were analysed thematically, through an iterative process of constant comparison. Respite is understood both as a service that provides a physical break for the carer and as a psychological outcome, i.e. a mental break for the carer, which can be facilitated by formal services, under certain conditions. The conceptual model outlines how client factors (dyadic relations, recognising/accepting need, carer psychosocial issues, restorative occupation, and stigma) and service factors (model/characteristics, care quality, staff expertise, meaningful occupation for people with dementia and communication and support), interact to influence a respite outcome. The key antecedent for a positive respite experience is that the carer perceives that mutual benefit is garnered from service use. The term respite can be interpreted as both a service and an outcome. However, it is clear that 'respite', as currently understood, acknowledges the relational experience of the carer only; it is, therefore, potentially damaging to the planning and delivery of person-centred dementia care. We suggest 'restorative care' as a potential alternative nomenclature to respite care, thereby highlighting the importance of providing mutual, personalised health and social care services that serve to enhance care relationships rather than diminish them.

Managing Person-Centered Dementia Care in an Assisted Living Facility: Staffing and Time Considerations.

To describe (a) the unlicensed staff time necessary to provide quality activities of daily living (ADL) care to residents receiving dementia care within an assisted living facility and (b) a staff management approach to maintain quality ADL care. Supervisory staff used a standardized observational method to measure ADL care quality and the staff time to provide care during the morning and evening across 12 consecutive months. Staff were given individual feedback about the quality of their care provision following each observation. The average staff time to provide ADL care averaged 35 (± 11) minutes per resident per care episode with bathing and 18 (± 6) minutes/resident/care episode without bathing. Morning ADL care required significantly more staff time than evening care. There was not a significant relationship between residents' levels of cognitive impairment or ADL dependency and the staff time to provide ADL care. Quality ADL care was maintained for 12 months. This study provides novel data related to the amount of staff time necessary to provide quality ADL care for persons with dementia in an assisted living care setting. This study also describes a standardized approach to staff management that was effective in maintaining quality ADL care provision. Assisted living facilities should consider these data when determining the necessary unlicensed staffing level to provide person-centered ADL care and how to effectively manage direct care providers.

Person-Centered Dementia Care in the Community: A Perspective From the United Kingdom.

Dementia is a global concern. Although effort is being put toward finding a cure, many advances have been made in ensuring excellence in dementia care. In the United Kingdom, the concept of person-centered dementia care has transformed what is expected for individuals with dementia. Now embraced in national policy in the United Kingdom, it was pioneered by Thomas Kitwood and Kathleen Bredin and driven by a concern for the quality of care for individuals with dementia in care homes. The purpose of the current article is to describe key concepts of Kitwood's pioneering work in person-centered dementia care and to use them to inform current community-based supports and services for individuals with dementia in their own homes, whether alone or with family carers. [Journal of Gerontological Nursing, xx(x), xx-xx.].

Personalised participation: an approach to involve people with dementia and their families in a participatory design project

This paper presents a personalised approach to participatory design, where several aspects of the project, such as brief, process and artefacts, are left open to be redefined by the participants, in accordance with their individual needs, preferences and availabilities. Drawing upon person-centred dementia care values, personalisation is seen as an invitation for people with dementia and their families to participate. It is also a way of dealing with the uniqueness of participants, and providing opportunities for meaningful communication, so that social relationships are maintained. This approach emerged from the specificity of involving people with dementia and their families in a participatory design project, in an effort to best include them in a respectful and convivial manner. Relations between use, design and participation, which are in constant negotiation with participants, are analysed and the qualities of this personalised participation, relating to ethics, empathy and conviviality, are outlined.

Person-centered dementia care: current perspectives.

Person-centered dementia care is widely accepted as a value-based commitment to supporting people with dementia and is a guiding principle in care services. Policy ambitions to put people at the center of their own care are being developed internationally. These may be seen as part of the evolution of person-centered care which has its origins in critical perspectives on practice and social responses to people with dementia. In England, one further development of person-centered care has been personalization – a government policy to extend individuals’ choice and control over their social care and, latterly, ways to meet their health care needs. This paper charts the evolution of the concept of person-centered care to the policy of personalization (which has international comparators) and summarizes emerging and conflicting evidence about the implications of personal budgets in England on older people with mental health problems such as dementia and their families. It focuses on the evidence base of personalization and on emerging lessons for practice, drawing from the implementation of personalization and the adoption of personal budgets by this group. While personalization may be one policy initiative, the values and practices of person-centered dementia care remain fundamental to practice and are inspiring new ideas related to rights and justice for people with dementia.

Using appreciative inquiry to implement person-centred dementia care in hospital wards.

The quality of care of persons with dementia in hospitals is not optimal and can be challenging. Moreover, staff may find difficulty in translating what they have learned during training into practice. This paper report the development and evaluation of a set of workshops using an appreciative inquiry approach to implement person-centred dementia care in two hospital wards. Staff worked collaboratively to develop a ward vision and to implement a number of action plans. Using appreciative inquiry approach, staff attitudes towards persons with dementia improved, inter-professional collaboration was enhanced and small changes in staff practices were noted. Dementia care in hospitals can be enhanced by empowering staff to take small but concrete actions after they engage in appreciative inquiry workshops, during which they are listened to and appreciated for what they can contribute.

The relation between mood, activity, and interaction in long-term dementia care

ABSTRACTObjective: The aim of the study is to identify the degree of association between mood, activity engagement, activity location, and social interaction during everyday life of people with dementia (PwD) living in long-term care facilities.Method: An observational study using momentary assessments was conducted. For all 115 participants, 84 momentary assessments of mood, engagement in activity, location during activity, and social interaction were carried out by a researcher using the tablet-based Maastricht Electronic Daily Life Observation-tool.Results: A total of 9660 momentary assessments were completed. The mean age of the 115 participants was 84 and most (75%) were women. A negative, neutral, or positive mood was recorded during 2%, 25%, and 73% of the observations, respectively. Positive mood was associated with engagement in activities, doing activities outside, and social interaction. The type of activity was less important for mood than the fact that PwD were engaged in an activity. Low mood was evident when PwD attempted to have social interaction but received no response.Conclusion: Fulfilling PwD's need for occupation and social interaction is consistent with a person-centred dementia care focus and should have priority in dementia care.

Person-centred dementia care: a reality check in two nursing homes in Ireland.

The introduction of a person-centred care (PCC) approach to dementia care has been a major paradigmatic shift in the care provision in residential settings for older adults in Ireland. However, policy implementation in nursing homes relies very much on the preparedness of nursing staff. This study explored this through semi-structured interviews with care assistants in two nursing homes which professed to support the PCC philosophy. We addressed their knowledge and perspectives of person-centred dementia care and views on various factors affecting its delivery. Findings showed considerable disparity between policy and practice, in particular because care assistants lacked clarity on what PCC is and reported that they were not educated in it. Notwithstanding this, carers' perspectives on 'good care' for people with dementia included elements of PCC which suggested its 'implicit' use in practice. Besides the necessity of more (and more explicit) training on PCC, the findings also suggest concerns around communication between staff and management and the need for improvement of staffing resources and available time in residential settings in order to make the delivery of person-centred dementia care a reality.

Presence redefined: The reciprocal nature of engagement between elder-clowns and persons with dementia.

Elder-clowns are a recent innovation in arts-based approaches to person-centred dementia care. They use improvisation, humour, and empathy, as well as song, dance, and music. We examined elder-clown practice and techniques through a 12-week programme with 23 long-term care residents with moderate to severe dementia in Ontario, Canada. Analysis was based on qualitative interviews and ethnographic observations of video-recorded clown-resident interactions and practice reflections. Findings highlight the reciprocal nature of clown-resident engagement and the capacity of residents to initiate as well as respond to verbal and embodied engagement. Termed relational presence, this was achieved and experienced through affective relationality, reciprocal playfulness, and coconstructed imagination. These results highlight the often overlooked capacity of individuals living with dementia to be deliberately funny, playful, and imaginative. Relational presence offers an important perspective with which to rethink care relationships between individuals living with dementia and long-term care staff.

Volunteers improving person-centred dementia and delirium care in a rural Australian hospital

The aim of the present study was to address the challenges faced by staff in an acute rural hospital in Australia when providing person-centred care for patients with dementia and/or delirium. This was done by training volunteers to provide personal support to these patients, then measuring the outcomes of this intervention. Volunteers were given training, then allocated patients with dementia/delirium or at risk of delirium. A quasi-experimental pre-post design assessed outcomes of the intervention. Quantitative measures were clinical outcome data for the 64 patients who passed through the program; questionnaire data related to the stress and attitudes of the 18 participating nurses; and attitudes, knowledge and confidence of the 18 volunteers. Qualitative measures assessed acceptability and feasibility of the intervention to staff and volunteers. There was a significant reduction over time in length of stay for patients, and an increase in the use of analgesic medications. Only one patient fell while volunteers were on duty. There were no effects on the stress of nursing staff or their attitudes to dementia. Volunteers gained significantly in confidence and attitudes to dementia. The program was highly acceptable, with 96% of staff and 100% of volunteers perceiving the program as beneficial for patients, staff and volunteers. The program has continued and is now being expanded to other rural sites. It is feasible to introduce and then sustain a relatively inexpensive program to improve quality of care for people with dementia and/or delirium in an acute rural hospital. Reasons for the program's effectiveness are canvassed in the paper, but further research is needed to investigate the effectiveness of a similar program in urban hospitals.

Care staff training based on person-centered care and dementia care mapping, and its effects on the quality of life of nursing home residents with dementia

ABSTRACTObjectives: To assess the effects of care staff training based on person-centered care (PCC) and dementia care mapping (DCM) on the quality of life (QOL) of residents with dementia in a nursing home.Methods: An intervention of staff training based on PCC and DCM was conducted with 40 care staff members at a geriatric nursing home. The effects of the staff training on the QOL of residents with dementia were evaluated by the DCM measurements of 40 residents with dementia three times at about one-month intervals (first, baseline; second, pre-intervention; third, post-intervention).Results: The well-being and ill-being values (WIB values) of the residents with dementia measured by DCM were not different between the first and second rounds before the staff training (p = 0.211). Meanwhile, the WIB values increased from the first and second rounds to the third post-intervention round (p = 0.035 and p < 0.001, respectively); over 50% of the residents had better WIB values. The behavior category ‘interactions with others’ in DCM also demonstrated a significant increase in the third round compared to the first round (p = 0.041).Conclusion: Staff training based on PCC and DCM could effectively improve the QOL of residents with dementia.