Validity of Dementia Care Mapping on a neuro-rehabilitation ward: Q-methodology with staff and patients

Abstract

Background: Measuring the quality of care for people using neuro-rehabilitation services is a complex area requiring reliable methods that account for variable communication abilities/cognitive functioning. Dementia Care Mapping (DCM) is an observational method widely used in dementia care to improve person-centred care, which may be usefully applied to neuro-rehabilitation settings. Evaluation is vital to determine the tool’s acceptability in this setting. Purpose: To explore the views of staff/patients regarding whether the use of DCM is acceptable in a neuro-rehabilitation setting. Method: DCM was conducted on an acute neuro-rehabilitation ward. Q-methodology, a technique for extracting subjective opinions, was used with 23 staff and 10 patients on the ward to evaluate the acceptability of DCM. Results: Factor analysis was performed separately for staff and patient Q-sorts. Each found a “consensus” factor where all participants indicated positive acceptability for the use of DCM. Further exploratory factors indicated that some staff/patients had additional views/concerns that were not captured by the first consensus factor. Conclusions: The results from this preliminary study are promising and indicate that DCM is potentially an acceptable tool to use in acute neuro-rehabilitation. Further research is needed to explore the acceptability of this tool more widely across neuro-rehabilitation settings.

• Implications for Rehabilitation

• Person-centred care is widely acknowledged as being important in all care settings, including neurorehabilitation.

• Dementia Care Mapping was deemed to be an acceptable approach for improving the quality of person-centred care on the basis of the views of staff and patients in a neurorehabilitation ward.

• Dementia Care Mapping, with adaptations for neurorehabilitation settings, successfully provides an acceptable framework for measuring and improving the quality of person-centred care in this setting.

     

The use of life story work with people with dementia to enhance person-centred care

mckeown j., clarke a., ingleton c., ryan t. & repper j. (2010) The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing 5 , 148–158 Background. Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. Aims and objectives. The study investigates how life story work is: understood and developed in practice; experienced by all participants and affects the delivery and outcomes of care. Design and methods. The experience of older people with dementia, family carers and care staff in using life story work was explored within an NHS Health and Social Care Trust. A multiple case study design was adopted within a constructivist approach. Semi-structured interviews, observation, conversations were employed. Findings. Life story work has the potential to: enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard, verbally and non-verbally; be enjoyable for all concerned and enable the person with dementia to feel proud about themselves and their lives. Conclusion and implications for practice. Life story work has the potential to enhance person-centred care for older people with dementia and their families. Taking a practice development approach ensures that life story work can be implemented sensitively and is sustained in practice.     

The challenges of achieving person-centred care in acute hospitals: A qualitative study of people with dementia and their families

Background

Person-centred care has been identified as the ideal approach to caring for people with dementia. Developed in relation to long stay settings, there are challenges to its implementation in acute settings. However, international policy indicates that acute care for people with dementia should be informed by the principles of person-centred care and interventions should be designed to sustain their personhood.

Objectives

Using Kitwood's five dimensions of personhood as an a priori framework, the aim of this paper was to explore the way in which current approaches to care in acute settings had the potential to enhance personhood in older adults with dementia.

Design

Data collected to explore the current experiences of people with dementia, family carers and co-patients (patients sharing the ward with people with mental health problems) during hospitalisation for acute illness were analysed using a dementia framework that described core elements of person centred care for people with dementia.

Settings

Recruitment was from two major hospitals within the East Midlands region of the UK, focusing on patients who were admitted to general medical, health care for older people, and orthopaedic wards.

Participants

Participants were people aged over 70 on the identified acute wards, identified through a screeing process as having possible mental health problems. 34 patients and their relatives were recruited: this analysis focused on the 29 patients with cognitive impairment.

Method

The study involved 72 h of ward-based non-participant observations of care complemented by 30 formal interviews after discharge concerning the experiences of the 29 patients with cognitive impairment. Analysis used the five domains of Kitwood's model of personhood as an a priori framework: identity, inclusion, attachment, comfort and occupation.

Results

While there were examples of good practice, health care professionals in acute settings were not grasping all opportunities to sustain personhood for people with dementia.

Conclusions

There is a need for the concept of person-centred care to be valued at the level of both the individual and the organisation/team for people with dementia to have appropriate care in acute settings.     

Using multimedia technology to enhance self-advocacy of people with intellectual disabilities: Introducing a theoretical framework for ‘Multimedia Advocacy’

Background

Multimedia Advocacy is the use of digital technology for people with intellectual disabilities as means of developing identities, being heard, connecting to family and care networks and, advocating for change.

Methods

We explore principles and theories that underpin Multimedia Advocacy, mapping disciplinary approaches that have influenced the concept and praxis.

Results

We describe relevant theories from cultural and media studies, personal therapeutic practices, communication, universal design, and systemic adoption of technology. We discuss new ways of achieving person-centred working with digital technology. We aim to develop a stronger theory/practice dialogue between these disciplines.

Conclusions

The theories described highlight the importance of embedding access and use of digital technology within everyday settings. Long-term implementation plans and buy-in from all organisational levels are required for Multimedia Advocacy tools to be embraced by health and social care systems so the voice of an individual is included and genuine person-centred practice is achieved.     

The impact of psychosocial training on staff attitudes towards people living with dementia: A systematic review

Background

As the prevalence of dementia increases, the need for appropriately trained and skilled care teams also increases. Staff attitudes towards people living with dementia have a significant impact on caregiving behaviours and staff and resident outcomes. Training within care settings is a potential way of improving staff attitudes towards residents in their care.

Objectives

This review aimed to (i) assess the effectiveness of psychosocial training in improving care staff attitudes towards dementia; and (ii) examine the content and focus of training.

Method

The review was conducted following PRISMA guidance and the protocol was registered on PROSPERO prior to conducting the review. A comprehensive search of peer-reviewed literature was undertaken using CINAHL, Medline and PsycINFO from inception to March 2021. All papers were evaluated using a quality appraisal tool.

Results

Ten studies met inclusion criteria and were of variable quality. However, six studies found significant improvements in staff attitudes towards dementia following staff training. The studies varied in terms of training focus and included behavioural, communication and cognitive-based approaches.

Conclusions

Staff training could be an effective method of improving staff attitudes towards dementia in care settings. Further research adopting high-quality randomised controlled designs to further explore staff attitudes following psychosocial training would make a valuable contribution to the literature base.     

A survey of staff attitudes and responses to people with dementia who are aggressive in residential care settings

Aggression is reportedly common among older people with dementia in residential care. The attitudes of staff in care homes and strategies they use are under researched. Theoretical models that may be used to both understand and respond to such behaviour exist. They are the standard and person-centred paradigms. The aim of this study was to explore the views of nursing staff about aggressive behaviour in people with dementia and strategies used in practice. A survey of the attitudes of staff in six dementia care units using the Management of Aggression in People with Dementia Attitude Questionnaire was conducted including an audit of aggressive incidents using the Staff Observation Aggression Scale-Revised over a 3-month period. Staff expressed views reflective of a person-centred as opposed to standard paradigm. They viewed aggressive behaviour by people with dementia as deriving from the environment, situation or interactions with others. Participants strongly supported interpersonal means of responding to aggression, the moderate use of medication, and were largely opposed to physical restraint. Aggressive incidents were managed using less intrusive strategies such as distraction and de-escalation. Responses to aggressive behaviour, while pragmatic, were largely underpinned by a person-centred ethic as reflected in the attitudes expressed by staff.     

Developing person-centred practice: nursing outcomes arising from changes to the care environment in residential settings for older people

mccormack b., dewing j., breslin l., coyne-nevin a., kennedy k., manning m., peelo-kilroe l., tobin c. & slater p. (2010) Developing person-centred practice: nursing outcomes arising from changes to the care environment in residential settings for older people. International Journal of Older People Nursing 5 , 93–107 Aim. To present the nursing outcomes from the evaluation of developments in the care environment in residential settings for older people. Design. The evaluation data reported here is derived from a larger national programme of work that focused on the development of person-centred practice in residential services for older people using an emancipatory practice development framework. A multi-method evaluation framework was utilised. Outcome data were collected at three time points between December 2007 and September 2009. The data reported here were collected using an instrument called the ‘Person-Centred Nursing Index’. Findings. Heavy workload was the main cause of stress among nurses. Personal and professional satisfaction with the job was scored highest by the total sample of nurses. Nineteen factors were examined using the Person-Centred Nursing Index. Statistically significant changes were observed in 12 of these. In addition, there were statistically significant changes in nurses’ perceptions of caring, indicating a shift from a dominant focus on ‘technical’ aspects of care, to one where ‘intimate’ aspects of care were more highly valued. Relevance to clinical practice. The findings highlight the importance of the development of effective teamwork, workload management, time management and staff relationships in order to create a culture where there is a more democratic and inclusive approach to practice and space for the formation of person-centred relationships.     

Using life story work to enhance care

Life story work has been promoted as a tool to enhance the care provided to older people, particularly those with dementia. The benefits for individuals, families and/or friends and for staff include improving understanding of the individual, promoting relationships and assisting in the delivery of person-centred care. However, professionals often experience difficulties using life story work. This article considers a range of life story tools and advice on gathering information about a person. It highlights the importance of leadership and developing positive cultures to ensure that life story work can be effectively sustained.     

Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Background

The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home.

Objectives

To explore how older people with dementia discuss their priorities and preferences for end-of-life care.

Methods

An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically.

Results

People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future.

Conclusion

For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia.     

Collecting data on the experiences and perspectives of people with dementia in the acute care hospital setting: A systematic scoping review

Background

People with dementia frequently experience poor health outcomes that require hospitalisation; however, the hospital setting is generally unsuitable for these patients. While it is well-recognised that understanding patient perspectives is crucial to providing person-centred care, current clinical care guidelines do not describe how to effectively collect feedback from people with dementia. Historically, people with dementia have generally been neglected from data collection exercises among practitioners and academic researchers, alike.

Objective

The objective of this review is to describe the data collection processes from peer-reviewed evidence sources that include direct consultation with, and elicit feedback from, patients with dementia about their care experience in the hospital setting.

Methods

The protocol for this systematic scoping review was pre-registered ( https://doi.org/10.6084/m9.figshare.16614667.v1 ). The review considered primary quantitative and qualitative research involving people with dementia as research participants, regarding the quality of hospital care from the patient's perspective. Four databases were searched (MEDLINE, CINAHL Complete, APA PsycINFO and Embase), with 14 studies meeting the eligibility criteria.

Results

There has been an increased interest in gaining the perspectives of people with dementia on their health care over the past 5 years. Sundry methodologies were employed by these studies, but most used informal qualitative interviews to support and enable participants with diverse symptoms and functional abilities to take part. Procedures concerning recruitment, ethics and consent, and data collection processes were, likewise, varied and not reported consistently across this body of evidence.

Conclusions

People with dementia can be meaningfully consulted as research participants in the hospital setting. Increased rigour when reporting the methodologies and strategies used during data collection is needed to provide guidance for health services and researchers to further enable the inclusion of people with dementia.

Implications for practice

Including people with dementia in data collection endeavours in the hospital setting is essential to improving health outcomes, increasing equity and providing better hospital service delivery to this vulnerable cohort.     

The impact of mindfulness interventions for staff on the care,treatment, and experiences of people with intellectual disabilities: A systematic review

Background

Mindfulness interventions have been shown to ameliorate stress in support staff working with people with intellectual disabilities. This review aimed to explore what impact mindfulness interventions for staff have on their care and support behaviours, and on the experiences of people with intellectual disabilities receiving support.

Method

A systematic search of PsycINFO, Web of Science, ASSIA, and PubMed identified nine studies meeting the inclusion criteria. Outcomes were collated and a quality assessment tool was used to inform the critical analysis of the studies.

Results

Despite identified methodological issues, positive results were consistently reported. These included reduced use of restrictive practices by staff, increased positive interactions between staff and people with intellectual disabilities, and reduced aggression displayed by people with intellectual disabilities.

Conclusions

Further research in this area is required; however, this review supports the benefits of mindfulness on staff behaviour and the quality of life of people with intellectual disabilities.     

Healthcare staffs’ experiences and perceptions of caring for people with dementia in the acute setting: Qualitative evidence synthesis

BackgroundDementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting.ObjectivesThe aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development.SettingsA screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings.ParticipantsTwelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers.MethodsFramework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings.ResultsKey themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia.ConclusionsThis review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.     

Pain in severe dementia: A comparison of a fine‐grained assessment approach to an observational checklist designed for clinical settings

Background

Fine‐grained observational approaches to pain assessment (e.g. the Facial Action Coding System; FACS) are used to evaluate pain in individuals with and without dementia. These approaches are difficult to utilize in clinical settings as they require specialized training and equipment. Easy‐to‐use observational approaches (e.g. the Pain Assessment Checklist for Limited Ability to Communicate‐II; PACSLAC‐II) have been developed for clinical settings. Our goal was to compare a FACS‐based fine‐grained system to the PACSLAC‐II in differentiating painful from non‐painful states in older adults with and without dementia.

Method

We video‐recorded older long‐term care residents with dementia and older adult outpatients without dementia, during a quiet baseline condition and while they took part in a physiotherapy examination designed to identify painful areas. Videos were coded using pain‐related behaviours from the FACS and the PACSLAC‐II.

Results

Both tools differentiated between painful and non‐painful states, but the PACSLAC‐II accounted for more variance than the FACS‐based approach. Participants with dementia scored higher on the PACSLAC‐II than participants without dementia.

Conclusion

The results suggest that easy‐to‐use observational approaches for clinical settings are valid and that there may not be any clinically important advantages to using more resource‐intensive coding approaches based on FACS. We acknowledge, as a limitation of our study, that we used as baseline a quiet condition that did not involve significant patient movement. In contrast, our pain condition involved systematic patient movement. Future research should be aimed at replicating our results using a baseline condition that involves non‐painful movements.

Significance

Examining older adults with and without dementia, a brief observational clinical approach was found to be valid and accounted for more variance in differentiating pain‐related and non‐pain‐related states than did a detailed time‐consuming fine‐grained approach.     

Person-centred care for people with dementia: a quality audit approach

This paper addresses the concept of person-centred care for people with dementia by consideration of an audit process using dementia care mapping as the audit tool. It is argued that this tool is best for identifying the lived experiences of the people in receipt of care. As a result it is able to identify the overall culture of care and its level of 'person-centred' approach. The audit was conducted on 12 units, half of which were day units and the others catering for inpatients. Five patients were mapped on each day for a 4-day period. The results give some idea of the quality of care and identify where improvement is necessary. Scores such as well-being values and the Dementia Care Index give clear signposts to the level of person-centred care and highlight where staff development is necessary. Recommendations are given to aid on-going planning.