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The brain and person-centred care: 2. Making sense of the paradoxes of dementia
- Author:
- MILWAIN Elizabeth
- Journal article citation:
- Journal of Dementia Care, 18(1), January 2010, pp.23-25.
- Publisher:
- Hawker
Dementia is defined as a syndrome of acquired intellectual loss, in which memory and at least one other cognitive function are damaged to such a degree that a person's normal life and functions are adversely affected. In this second article of a series on the brain and dementia care, the author explains how an understanding of the organisation of the human brain, and the fact that it is not one structure but many, can help with understanding some aspects of dementia including Alzheimer's disease. The article gives a brief overview of how the brain is organised, highlighting how certain structures of the brain are vulnerable to the causes of dementia but others less so and that of all the structures of the brain it is the cerebral cortex which is most involved in the symptoms of dementia, and noting that it is vital that each person is assessed individually, because different kinds of dementia will affect different parts of the brain.
What is the current state of care for older people with dementia in general hospitals? a literature review
- Authors:
- DEWING Jan, DIJK Saskia
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(1), 2016, pp.106-124.
- Publisher:
- Sage
This paper summarises a literature review focusing on the literature directly pertaining to the acute care of older people with dementia in general hospitals from 2007 onwards. Following thematic analysis, one overarching theme emerged: the consequences of being in hospital with seven related subthemes. Significantly, this review highlights that overall there remains mostly negative consequences and outcomes for people with dementia when they go into general hospitals. Although not admitted to hospital directly due to dementia, there are usually negative effects on the dementia condition from hospitalisation. The review suggests this is primarily because there is a tension between prioritisation of acute care for existing co-morbidities and person-centred dementia care. This is complicated by insufficient understanding of what constitutes person-centred care in an acute care context and a lack of the requisite knowledge and skills set in health care practitioners. The review also reveals a worrying lack of evidence for the effectiveness of mental health liaison posts and dementia care specialist posts in nursing. Finally, although specialist posts such as liaison and clinical nurse specialists and specialist units/shared care wards can enhance quality of care and reduce adverse consequences of hospitalisation (they do not significantly) impact on reducing length of stay or the cost of care. (Publisher abstract)
Moving beyond patient and client approaches: mobilizing ‘authentic partnerships’ in dementia care, support and services
- Authors:
- DUPUIS Sherry L., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 11(4), July 2012, pp.427-452.
- Publisher:
- Sage
The notion of a client-centred or person-centred approach was first introduces in the 1940s. Over the past several decades, however, the true intent behind its original relational approach has been lost, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of people living with Alzheimer's disease who, due to the stigma and misunderstanding surrounding dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on the experience of the authors, working directly with persons with dementia, family members and professionals, and systematic research on a number of mutual partnership initiatives, this paper present an alternative approach, one that views persons with dementia as equal partners in the context of dementia care, support and formal services.
Managing agitated behaviour in people with Alzheimer's disease: the role of live music
- Authors:
- COX Elissa, NOWAK Madeleine, BUETTNER Petra
- Journal article citation:
- British Journal of Occupational Therapy, 74(11), November 2011, pp.517-524.
- Publisher:
- Sage
Agitation due to Alzheimer's disease (AD) presents a challenge to occupational therapists working in the older people's care sector. The therapeutic value of music is not new but background music and music therapy are emerging as promising tools in the management of agitation in AD. This exploratory study investigated whether individually focused live music could reduce agitated behaviour in this group. This quasi-experimental one-group design investigated the effect of a live, one-to-one, musical violin intervention (evidence suggests the most effective intervention is not heavily percussive) on agitated behaviour in people with moderate-severe AD in a residential care setting in North Queensland. A relevant repertoire was developed with the help of older people without dementia. All seven participants received the musical intervention on three occasions. They were videoed before, during and after each session and behaviour was assessed by the investigator and a blinded assessor, using a modified Cohen-Mansfield Agitation Inventory. Thirty agitated behaviours were examined. Overall agitated behaviour was reduced. Significant reductions were observed in pacing/aimless wandering, performing repetitious mannerisms and general restlessness. The total number of agitated behaviours decreased significantly (median 5 behaviours before the intervention to 1 during and 1 after). The authors conclude that live music may be an effective strategy for reducing short-term agitated behaviour among people with AD.
Good practice in relation to working with older people experiencing dementia
- Author:
- ROGER ROWETT AND ASSOCIATES
- Publisher:
- Care Council for Wales
- Publication year:
- 2009
- Pagination:
- 110p.
- Place of publication:
- Cardiff
This study was commissioned in order to identify and promote good practice in relation to working with older people experiencing dementia. The study was conducted in a number of Welsh locations and involving a range of different organisations such as social services, housing associations, residential care homes, community care providers and charities. The study was in three phases. First the study collated a directory of resources and existing good practice. These included good practice guidelines, worksheets, audit tools, training materials, templates, toolkits and books. The study then identified which ‘person-centred’ tools and approaches were most effective. Finally the study gathered feedback on approaches from participants using log sheets, manager questionnaires; and direct responses from staff, managers, and other key stakeholders. Recommendations centre on the quality of time spent between carer and service user and specifications for future tools.
The brain and person-centred care. 4. Memory, belief, emotion and behaviour
- Author:
- MILWAIN Elizabeth
- Journal article citation:
- Journal of Dementia Care, 18(3), May 2010, pp.25-29.
- Publisher:
- Hawker
The focus of this article is the changes that dementia often brings to memory functions, particularly in Alzheimer’s disease. Memory loss is the cardinal symptom of dementia and most people with dementia experience memory problems from early in the condition, particularly with learning and retention of new information or experiences. The link to memory loss is particularly strong in Alzheimer’s disease. The aim of this article is to explain how the human memory is organised and the consequences of persistent but gradual damage to some parts of this system. Two key messages emerge from this review. First, that it is not correct to think of people with Alzheimer’s disease as having no memory, and second, that life history work is vital for helping to understand many of the confusions that people with dementia experience. The second message leads to the issue of whether or not it is right to lie to people with dementia. This article concludes with some thoughts on this topic.
Family-centeredness in dementia care: what is the evidence?
- Authors:
- HAO Zhichao, RUGGIANO Nicole
- Journal article citation:
- Social Work in Health Care, 59(1), 2020, pp.1-19.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Over the last decade, person-centered practices in care for adults with Alzheimer’s disease and related dementias (AD/RD) has received significant attention from the health care and social service literature, though less attention has been paid to family-centered care (FCC). Initially conceptualized for application in pediatric care, FCC is an approach where clinicians develop partnerships with care recipients’ family members and views family members as having expertise to contribute to the clinical team. More recently, FCC has been extended to the literature on AD/RD care, though little is known about the extent to which family-centered interventions have been developed for use in AD/RD clinical practice, or the effectiveness of family-centered care for this population. To contribute to gaps in scholarship, this systematic review identified and evaluated intervention studies examining FCC in AD/RD clinical care. Implications for research and practice are discussed. (Edited publisher abstract)
Workforce development to provide person-centered care
- Authors:
- AUSTROM Mary Guerriero, et al
- Journal article citation:
- Aging and Mental Health, 20(8), 2016, pp.781-792.
- Publisher:
- Taylor and Francis
Objectives: To describe the development of a competent workforce committed to providing patient-centred care to persons with dementia and/or depression and their caregivers; to report on qualitative analyses of our workforce's case reports about their experiences; and to present lessons learned about developing and implementing a collaborative care community-based model using our new workforce that we call care coordinator assistants (CCAs). Method: Sixteen CCAs were recruited and trained in person-centred care, use of mobile office, electronic medical record system, community resources, and team member support. CCAs wrote case reports quarterly that were analysed for patient-centred care themes. Results: Qualitative analysis of 73 cases using NVivo software identified six patient-centred care themes: (1) patient familiarity/understanding; (2) patient interest/engagement encouraged; (3) flexibility and continuity of care; (4) caregiver support/engagement; (5) effective utilization/integration of training; and (6) teamwork. Most frequently reported themes were patient familiarity – 91.8% of case reports included reference to patient familiarity, 67.1% included references to teamwork and 61.6% of case reports included the theme flexibility/continuity of care. CCAs made a mean number of 15.7 (SD = 15.6) visits, with most visits for coordination of care services, followed by home visits and phone visits to over 1200 patients in 12 months. Discussion: Person-centred care can be effectively implemented by well-trained CCAs in the community. (Edited publisher abstract)
A different story: exploring patterns of communication in residential dementia care
- Authors:
- WARD Richard, et al
- Journal article citation:
- Ageing and Society, 28(5), July 2008, pp.629-651.
- Publisher:
- Cambridge University Press
This article reports findings from a three-year project that explored communication in dementia-care settings. As the proportion of people with dementia living in British care-homes continues to grow, there is a need to understand better their care. Using a range of qualitative methods, the project set out to identify the constituent elements of dementia-care practice and the patterns that characterise day-to-day relations in care homes. The tightly prescribed and standardised nature of the interactions between staff and residents is described: it raises questions about the capacity for dementia care to be truly person-centred. The project found that people with dementia are both capable of communication, and invest much effort in seeking to engage those around them, but are excluded from the monitoring, planning and provision of care in ways that the authors argue are discriminatory. The case is made for promoting and supporting communication as key skills and competencies for care workers. The value of measuring the level and quality of communication as a means to evaluate care is demonstrated. The authors question the priorities that currently guide care practice and argue that people with dementia need to be listened to and that there needs to be a rethink about what lies at the heart of dementia care.
End-of-life care: bridging disability and aging with person centred care
- Editors:
- GAVENTA William C., COULTER David L., (eds.)
- Publisher:
- Haworth Pastoral Press
- Publication year:
- 2005
- Pagination:
- 122p.
- Place of publication:
- Binghamton, NY
Features two primary papers on the controversial issue of end-of-life care within the disabled and aging populations. Each paper explains the multitude of issues involved in using person centered care. The first is from a father and nationally known advocate for the disabled—Rud Turnbull—speaking from a disability perspective about his disabled son. The second is from respected theologian M. J. Iozzio speaking from the aging perspective about her father's Alzheimer's disease. Responses from experts in the field follow, thoughtfully raising further points to consider about policies, ethics, quality of life, and consent. The two central papers from End-of-Life Care focus on person centered, interdependent care using the personal reflections of two close family members and their views about end-of-life care. The responses that follow each are direct, thoughtful, and concentrate on the issues in end-of-life planning using person centered care. This difficult and important issue is discussed in detail by lawyers, theologians, clinical practitioners, and professional service providers, and includes several revealing personal stories about end-of-life experiences.