This bulletin covers person centred health care, and should be of interest to staff working in this area, within acute, community and social care sectors.
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Contents: Books |Activities | Acute Hospitals |Allied Health Professionals |Culture | Family Care | Intellectual Disability and Dementia | Medication | Nursing Homes | Patient Experience | Professional Skills and Education | Residential Care Homes
All books are available to borrow from or via your local NHS Scotland Library - see catalogue records for more details.
Middleton-Green, L., Chatterjee, J., Russell, S., & Downs, M. End of life care for people with dementia: a person-centred approach. Jessica Kingsley, London, 2017. Available to borrow in print.
Rahman, S. Enhancing health and wellbeing in dementia: a person-centred integrated care approach. Jessica Kingsley Publishers, London, 2017. Available to borrow in print.
Tanner, LJ. Embracing touch in dementia care: a person-centred approach to touch and relationships. Jessica Kingsley Publishers, London, 2017. Available to borrow in print.
Tetley, J (ed) Nursing older people at a glance. Wiley, Hoboken NJ, 2018. Available to borrow in print.
Sherlaw, C., Crump, HJ, Arora, S. Patient-centred care for older people with complex needs: evaluation of a new care model in outer east London. The Nuffield Trus, London, 2018. Available online here.
NG, Q.X., et al, 2017. Doll therapy for dementia sufferers: A systematic review. Complementary Therapies in Clinical Practice, 26, pp. 42-46. Dementia affects more than 47.5 million people worldwide, and the number is expected to continue to increase as the population ages. Doll therapy is an emerging nonpharmacologic management strategy for patients with advanced dementia, especially in patients with challenging behaviours. A total of 12 published studies (mainly cohort and observational studies) were identified and discussed in this systematic review. In most instances, cognitive, behavioural and emotional symptoms were alleviated and overall wellbeing was improved with doll therapy, and dementia sufferers were found to be able to better relate with their external environment. Despite the relative paucity of empirical data and ethical concerns, we are of the opinion that doll therapy is effective for dementia care, is well-aligned with the ethos of person-centred care and should be applied in the management of dementia patients. Future research should include more robust randomized controlled trials. Link to Full Text
For more information on Doll Therapy see:
CAMPBELL, S., et al, 2017. “Music in Mind” and Manchester Camerata: an exploratory qualitative evaluation of engagement in one care home in Northwest England. Quality in Ageing & Older Adults, 18(1), pp. 69-80. The purpose of this paper is to consider the work conducted by Manchester Camerata (an internationally renowned and world-class chamber orchestra) programme for people with dementia in one care home in the north west of England. Findings This analytical process generated three overarching themes: Making it Happen, which referred to the contextual, structural and organisational considerations necessary for setting up the engagement programme; Orchestrating Person-centred Care, which addressed the importance of building relationships through person to person communication; Making Musical Connections, which identified the sensory and embodied qualities of live music and the need to capture in-the-moment experiences.Originality/value Whilst each of these theme headings has slightly different meanings and applications to each of the participating stakeholders, the evaluation highlights the potential power of improvised music making to equalise and harmonise the group dynamics by co-creating “in-the-moment” experiences. Link to Full Text
ELFRINK, TR., ZUIDEMA, SU., KUNZ, M., WESTERHOF, GJ. Life Story for people with dementia: a systematic review. International Psychogeriatrics Published online (ahead of print) 18 July 2018. There is an increasing evidence that reminiscence therapy is effective in improving cognitive functions and reducing depressive symptoms in people with dementia. Life story books (LSBs) are frequently used as a reminiscence tool to support recollecting autobiographical memories. As little is known about how LSBs are used and what type of studies have been employed to evaluate LSB interventions, we conducted a systematic review.This systematic review confirms that the use of LSBs to support reminiscence and person-centered care is promising, but larger RCTs or implementation studies are needed to establish the effects of LSBs on people with dementia. Link to Full text
MCKINNEY, A., 2017. The value of life story work for staff, people with dementia and family members. Nursing Older People, 29(5), pp. 25-29. Dementia is a term used to describe a collection of symptoms that include problems with memory, self-care, reasoning and communication. Care interventions that focus on preserving people's dignity and identity are therefore essential. Using Driscoll's reflective model to guide critical thinking, this article reflects on the use of one intervention, namely life story work, to promote person-centred care for people with dementia. It explores the value or effect of life story work for healthcare staff, the person with dementia and family members. It also highlights best practice guidelines that are useful to consider to promote its optimal success as an intervention in dementia care, for example, instigating it early in the dementia journey and embedding it in a supportive culture. It is important to highlight to nursing students the many positive aspects of incorporating life story work into practice. Link to Full Text
MILESKI, M., TOPINKA, JB., BROOKS, M., et al (2018) Sensory and memory stimulation as a means to care for individuals with dementia in long-term care facilities. Clinical Interventions in Aging 13: 967-974. The primary objective of this study was to identify and further examine the facilitators and barriers of utilizing sensory and memory stimulation as a means to care for individuals with dementia who live in long-term care settings. The most common facilitator was improved communication. The top three barriers were access, staff training, and mixed results. Reminiscence therapy appears to provide a person-centered method of care for those who otherwise have problems communicating. These implementations will be more effective if they have the support of staff and management. Link to Full Text
WOODS, B., O'PHILBIN, L., FARRELL, EM., et al (2018) Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews 1;3:CD01120 Authors Conclusions: The effects of reminiscence interventions are inconsistent, often small in size and can differ considerably across settings and modalities. RT has some positive effects on people with dementia in the domains of QoL, cognition, communication and mood. Care home studies show the widest range of benefits, including QoL, cognition and communication (at follow-up). Individual RT is associated with probable benefits for cognition and mood. Group RT and a community setting are associated with probable improvements in communication. The wide range of RT interventions across studies makes comparisons and evaluation of relative benefits difficult. Treatment protocols are not described in sufficient detail in many publications. There have been welcome improvements in the quality of research on RT since the previous version of this review, although there still remains a need for more randomised controlled trials following clear, detailed treatment protocols, especially allowing the effects of simple and integrative RT to be compared. Link to Full Text
ALLWOOD, R., et al, 2017. Should I stay or should I go? How healthcare professionals close encounters with people with dementia in the acute hospital setting. Social science & medicine, 191, pp. 212-225. Around a quarter of hospital beds in the UK are occupied by patients living with dementia (PWD), and communication impairments are common across all types of dementia, often exacerbated by the hospital environment. Unsurprisingly, healthcare professionals (HCPs) report particular challenges in caring for this patient group, whilst trying to recognise and value their personhood as per the underpinning ethos of person-centred care. However, whilst there is a growing body of research that underlines the importance of communication in dementia care, there is far less that actually examines this communication in real time interaction. Suggestions and pointers for good communication do exist, but these do not tend to be empirically derived, and sometimes conflict with empirical findings. This paper focuses on a specific area of interaction which has previously received very little attention: the way in which healthcare encounters are ended or closed. Our findings underline the importance of examining best practice guidance as it is actually talked into being, using approaches which can unpack the interactional detail involved. They also emphasise the importance of context in the analysis of healthcare delivery, to avoid a ‘one size fits all’ approach. Link to Full Text
HUNG, L., et al, 2017. 'Little things matter!' Exploring the perspectives of patients with dementia about the hospital environment. International Journal of Older People Nursing, 12(3). Recognising demographic changes and importance of the environment in influencing the care experience of patients with dementia, there is a need for developing the knowledge base to improve hospital environments. Involving patients in the development of the hospital environment can be a way to create more responsive services. To date, few studies have involved the direct voice of patients with dementia about their experiences of the hospital environment. Patient participants persuasively articulated the supportive and unsupportive elements in the environment that affected their well-being and care experiences. They provided useful insights and pointed out practical solutions for improvement. This is the first study that demonstrates the possibility of using go-along interviews and videoing with patients with dementia staying in a hospital for environmental redesign. Researchers, hospital leaders and designers should further explore strategies to best support the involvement of patients with dementia in design and redesign of hospital environments. Link to Full Text
PINKERT, C., et al, 2018. Experiences of nurses with the care of patients with dementia in acute hospitals: A secondary analysis. Journal of Clinical Nursing, 27(1), pp. 162-172. To describe nurses' experiences in caring for people with dementia in acute hospital settings. Hospitals must minimise constraints to give every nurse the chance to perform person-centred care. Furthermore, it is important to sensitise nurses and give them sufficient training and education to enable them to care for people with dementia. Relevance to clinical practice The results may contribute to a better understanding of the factors that support or constrain person-centred nursing care for people with dementia in acute hospitals. Link to Full Text
TURNER, A., et al, 2017. The experience of caring for patients with dementia within a general hospital setting: a meta-synthesis of the qualitative literature. Aging & Mental Health, 21(1), pp. 66-76. The synthesis highlighted a lack of knowledge and understanding of dementia within general hospital staff, particularly with regard to communication with patients and managing behaviours that are considered challenging. This limited understanding, coupled with organisational constraints on a busy hospital ward, contributed to low staff confidence, negative attitudes towards patients with dementia and an inability to provide person-centred care. The benefits of dementia training for both ward staff and hospital management and peer discussion/support for ward staff are discussed. Link to Full Text
Allied Health Professionals
HALL, AJ., BURNS, L., LANG, IA., et al, 2018. Are physiotherapists employing person-centred care for people with dementia? An exploratory qualitative study examining the experiences of people with dementia and their carers. BMC Geriatrics 18:63. People with dementia may receive physiotherapy for a variety of reasons. This may be for musculoskeletal conditions or as a result of falls, fractures or mobility difficulties. While previous studies have sought to determine the effectiveness of physiotherapy interventions for people with dementia, little research has focused on the experiences of people receiving such treatment. The aim of this study was to gain an in-depth understanding of people’s experiences of receiving physiotherapy and to explore these experiences in the context of principles of person-centred care. Link to Full Text
BROOKE, J., CRONIN, C., Stiell, M., OJO, O., 2018. The intersection of culture in the provision of dementia care: a systematic review. Journal of Clinical Nursing 27(17-18): 3241-3253. "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." Link to Full Text
CHUNG, P.Y.F., et al, 2017. Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia. International Journal of Qualitative Studies on Health & Well-Being, 12(1). An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed. Link to Full Text
MEYER, C., et al, 2017. Sharing knowledge of falls prevention for people with dementia: insights for community care practice. Australian Journal of Primary Health, 23(5), pp. 464-470. People living with dementia (PLWD) fall more frequently, with more adverse consequences, than general community-dwelling older people; however, falls prevention evidence for PLWD is limited. Increased success of falls prevention strategies for PLWD may rely on tailored interventions to address dementia-specific risk factors. Results showed limited knowledge and understanding of evidence-based falls prevention strategies, but small incremental changes made by CCHPs through action research offered insights into enhancing knowledge and awareness. Appropriate professional development for community care health professionals is needed to support falls prevention for PLWD, along with associated organisational changes, to ensure knowledge is adequate. Link to Full Text
Intellectual Disability and Dementia
CLEARY, J. and DOODY, O., 2017. Nurses' experience of caring for people with intellectual disability and dementia. Journal of Clinical Nursing, 26(5), pp. 620-631. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach. Link to Full Text
DE BELLIS, A. and BRADLEY, S.L., 2017. Antipsychotic use for behaviours by persons with dementia in residential aged care: the relatives' perspectives. Australian Journal of Advanced Nursing, 35(1), pp. 23-32. Relatives of persons with dementia require support and education about the progression of dementia, BPSD (Behavioural and Psychological Symptoms)and the risks and benefits that antipsychotic medication may have on BPSD. Most importantly, relatives need to be involved in decision-making regarding the use of antipsychotic medication. Nurses have a role to educate care staff on the use of person centred care in preference to medication for better care of the person with dementia.
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BROOKER, D.J., et al, 2016. FITS into practice: translating research into practice in reducing the use of anti-psychotic medication for people with dementia living in care homes. Aging & Mental Health, 20(7), pp. 709-718. This paper reports on the acceptability and effectiveness of the FITS (Focussed Intervention Training and Support) into Practice Programme. This intervention was scaled up from an earlier cluster randomised-controlled trial that had proven successful in significantly decreasing antipsychotic prescribing in care homes. The FITS into practice programme was well evaluated and resulted in reduction in inappropriate anti-psychotic prescribing. Revisions to the intervention are suggested to maximise successful implementation. Link to Full Text
BOERSMA, P., et al, 2017. Study protocol Implementation of the Veder contact method (VCM) in daily nursing home care for people with dementia: an evaluation based on the RE-AIM framework. Aging & Mental Health, 21(7), pp. 730-741. People with dementia in nursing homes benefit from person-centred care methods. Studies examining the effect of these methods often fail to report about the implementation of these methods. The present study aims to describe the implementation of the Veder contact method (VCM) in daily nursing home care. By using the RE-AIM framework this study introduces a structured and comprehensive way of investigating the implementation process and implementation effectiveness of person-centred care methods in daily dementia care. Link to Full Text
BOERSMA, P., et al, 2017. Implementation of the Veder contact method in daily nursing home care for people with dementia: a process analysis according to the RE-AIM framework. Journal of Clinical Nursing, 26(3), pp. 436-455. To perform a process analysis of the implementation of the Veder contact method for gaining insight into factors that influence successful implementation. The Veder contact method can be applied in daily care without additional time investments. Although adopted by many caregivers, some were reluctant using the Veder contact method. Organisational factors (e.g. staffing and management changes, budget cuts) impeded long-term implementation. The findings from this study can be used for the development of successful implementation strategies for the Veder contact method and other person-centred care methods. Link to Full Text
JACOBSEN, F.F., et al, 2017. A mixed method study of an education intervention to reduce use of restraint and implement person-centered dementia care in nursing homes. BMC Nursing, 16, pp. 1-11. People 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. Leadership, 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.Link to Full Text
MILTE, R., et al, 2017. Struggling to maintain individuality – Describing the experience of food in nursing homes for people with dementia. Archives of Gerontology & Geriatrics, 72, pp. 52-58. The main themes identified tracked a journey for people with cognitive impairment in nursing homes, where they initially sought to have their individual needs and preferences recognised and heard, expressed frustration as they perceived growing barriers to receiving dietary care which met their preferences, and ultimately described a deterioration of the amount of control and choice available to the individual with loss of self-feeding ability and dysphagia. Further consideration of how to incorporate individualised dietary care is needed to fully implement person-centred care and support the quality of life of those receiving nursing home care. Link to Full Text
QUASDORF, T., et al, 2017. Implementing Dementia Care Mapping to develop person-Centred care: results of a process evaluation within the Leben- QD II trial. Journal of Clinical Nursing, 26(5), pp. 751-765. Dementia Care Mapping, an internationally applied method for supporting and enhancing person-centred care for people with dementia, must be successfully implemented into care practice for its effective use. Various factors influence the implementation of complex interventions such as Dementia Care Mapping; few studies have examined the specific factors influencing Dementia Care Mapping implementation. For successful Dementia Care Mapping implementation, it must be embedded in a systematic implementation strategy considering the specific setting. Organisational preconditions may need to be developed before Dementia Care Mapping implementation. Necessary steps may include team building, developing and realising a person-centred care-based mission statement or educating staff regarding general dementia care. The implementation strategy may include attracting and involving individuals on different hierarchical levels in Dementia Care Mapping implementation and supporting staff to translate Dementia Care Mapping results into practice. Link to Full Text
COLOMER, J. and DE VRIES, J., 2016. Person-centred dementia care: a reality check in two nursing homes in Ireland. Dementia (14713012), 15(5), pp. 1158-1170. 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. Link to Full Text
NICHOLSON, L., 2017. Person-centred care: experiences of older people with dementia. Nursing Standard, 32(8), pp. 41-51. Few articles pertaining to the views, perceptions and experiences of older people with dementia receiving person-centred care were identified, with most of the literature based in settings outside the UK. Four main themes were identified: shared decision-making; promoting individuality, independence and autonomy; person-centred care; and communication and giving voice to people with dementia. Knowledge of the lived experience of people with dementia is important to ensure they receive care that enhances their quality of life. It is essential to consider the views and experiences of older people with dementia to provide effective person-centred care and undertake appropriate research. Further research is required to evaluate the experiences of older people with dementia receiving care to inform practice. Link to Full Text
Professional Skills and Education
DIGBY, R., 2016. Nurse empathy and the care of people with dementia. Australian Journal of Advanced Nursing, 34(1), pp. 52-59. This paper details the relevant influences on the ability of nurses to care empathetically for people with dementia in hospital. The recognition that there are distinct factors related to this patient cohort is an important one and may assist nurses and health organisations to identify systemic and individual problems associated with hospitalisation and lead to the implementation of supportive strategies. Appropriate nurse-patient ratios which consider the additional workload attached to caring for people with dementia, clinical supervision and targeted nurse education must be considered to ensure health systems deliver appropriate person-centred care to people with dementia. Link to Full Text
** SCOTTISH PAPER**
DINGWALL, L., et al, 2017. Sliding doors: Did drama-based inter-professional education improve the tensions round person-centred nursing and social care delivery for people with dementia: A mixed method exploratory study. Nurse education today, 51, pp. 1-7. This educational intervention takes place when the population of older people with dementia is increasing. Health and Social care professionals must work jointly in increasingly complex contexts. Negative attitudes towards older people are cited as a contributor to poor care delivery, including the use of dismissive and/or patronising language, failing to meet fundamental needs and afford choice. ‘Sliding Doors to Personal Futures’ is a joint, drama-based, educational initiative between NHS Education Scotland and the Scottish Social Services Council, delivered using interprofessional education (IPE) towards encouraging person-centred health and social care. This paper considers whether ‘Sliding Doors’ had an impact on social work and nursing students' attitudes to older people, person-centred care and interprofessional collaboration. The paper concludes that there is an important difference between nurses' and social workers' frames of reference. It is suggested that IPE in its current form will not impact positively on outcomes for older people, unless both professions can openly acknowledge the reality of their professional contexts and develop an understanding of each other's professional restrictions, opportunities and aspirations. Link to Full Text
ROKSTAD, A.M.M., et al, 2017. The impact of the Dementia ABC educational programme on competence in person-centred dementia care and job satisfaction of care staff. International Journal of Older People Nursing, 12(2). The objective of the study was to evaluate the impact of the Dementia ABC educational programme on the participants' competence in person-centred care and on their level of job satisfaction. The evaluation of the Dementia ABC educational programme identifies statistically significant increases in scores of person-centredness and job satisfaction, indicating that the training has a positive impact. The results indicate that a multicomponent training programme including written material, multidisciplinary reflection groups and workshops has a positive impact on the development of person-centred care practice and the job satisfaction of care staff. Link to Full Text
SCALES, K., et al, 2017. Power, empowerment, and person-centred care: using ethnography to examine the everyday practice of unregistered dementia care staff. Sociology of health & illness, 39(2), pp. 227-243. In formal organisational settings, person-centred approaches place particular responsibility on 'empowered' direct-care staff to translate these principles into practice. These staff provide the majority of hands-on care, but with limited training, recognition, or remuneration. This paper examines the complex ways that dementia care staff engage with their own 'dis/empowerment' in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service ( NHS) wards and one private care home in England. The paper concludes with a discussion of how Foucault's understanding of power may help define and enhance efforts to empower direct-care staff to provide person-centred care in formal dementia care settings. Link to Full Text
SMYTHE, A., et al, 2017. A qualitative study investigating training requirements of nurses working with people with dementia in nursing homes. Nurse education today, 50, pp. 119-123. Background The care home workforce (over half a million people in the UK) has a pivotal role in the quality of care provided to the residents. Much care in this setting is inadequate, lacks a person-centred focus and neglects the dignity of residents. A combination of factors leads to burnout in nurses working in nursing homes, contributing to poor quality care. Recent reports have indicated that cultures of care need to be addressed through training, improved workforce support and supervision and that improving the quality of care for people with dementia can be achieved by the development of leadership in nursing and clarifying professional values. Participants reported that their work responsibilities revolved mainly around directing others, day to day care, paper work and supporting family carers. Nurses identified the importance of person-centred ways of being, communication and clinical skills when working in nursing home setting. They expressed their frustrations associated with managing staff levels, responding to behaviour that challenges and lack of time. Barriers to learning, experience of previous training and gaps in knowledge identified could inform the design of future training and support programmes. Link to Full Text
Residential Care Homes
BARBOSA, A., et al, 2017. Person-centredness in direct care workers caring for residents with dementia: Effects of a psycho-educational intervention. Dementia (14713012), 16(2), pp. 192-203. This study assessed the effects of a psycho-educational intervention on direct care workers' person-centredness during morning care to residents with dementia. The findings suggest that a psycho-educational intervention may increase care workers' person-centredness. Further research is needed to explore the long-term sustainability and extent of its benefits on workers and residents. Link to Full Text
DUCAK, K., et al, 2018. Implementing Montessori Methods for Dementia™ in Ontario long-term care homes: Recreation staff and multidisciplinary consultants’ perceptions of policy and practice issues. Dementia (14713012), 17(1), pp. 5-33. Montessori-based activities use a person-centred approach to benefit persons living with dementia by increasing their participation in, and enjoyment of, daily life. This study investigated recreation staff and multidisciplinary consultants’ perceptions of factors that affected implementing Montessori Methods for Dementia™ in long-term care homes in Ontario, Canada. The results demonstrate that when Montessori Methods for Dementia™ approaches are learned and understood by staff they can be used as practical interventions for long-term care residents living with dementia. Link to Full Text
HUNTER, P.V., et al, 2016. The influence of individual and organizational factors on person-centred dementia care. Aging & Mental Health, 20(7), pp. 700-708. Although some individual and organizational contributors to person-centred care or quality of care have been studied, they have rarely been examined together. Our goal was to investigate the association of personal and organizational–environmental characteristics with self-reported person-centred behaviours in long-term residential care settings. Organizational characteristics are associated with several aspects of person-centred dementia care. Individual characteristics, including gender, beliefs about personhood, and burnout, appear to be more important to some aspects of person-centred dementia care (e.g., respect for personhood and comfort care) than others. Link to Full Text
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