Reframing person-centered nursing care for persons with dementia

Alzheimer's dementia manifests in a complex clinical presentation that has been addressed from both biomedical and phenomenological perspectives. Although each of these paradigmatic perspectives has contributed to advancement of the science, neither is adequate for theoretically framing a person-centered approach to nursing care. The need-driven dementia-compromised behavior (NDB) model is discussed as an exemplar of midrange nursing theory that promotes the integration of these paradigmatic views to promote a new level of excellence in person-centered dementia care. Clinical application of the NDB promotes a new level of praxis, or thoughtful action, in the care of persons with dementia.     

A Nightingale-based model for dementia care and its relevance for Korean nursing

This article addresses the synchrony between a Western middle-range theory of care for persons with dementia and traditional Korean nursing care. The Western theory is called a need-driven, dementia-compromised behavior model and is heavily influenced by the assessment categories outlined in Nightingale's work. This model is presented as congruent with Nightingale's work and then viewed from the perspective of traditional Korean nursing. Several congruencies and a few incongruencies are found between these Western and Eastern views, and suggestions are made for greater consistency between these views.     

Emotional intervention strategies for dementia-related behavior: a theory synthesis.

Behavioral disturbances of elders with dementia are prevalent. Yet the science guiding development and testing of effective intervention strategies is limited by rudimentary and often-conflicting theories. Using a theory-synthesis approach conducted within the perspective of the need-driven dementia-compromised behavior model, this article presents the locomoting responses to environment in elders with dementia (LRE-EWD) model. This new model, based on empirical and theoretical evidence, integrates the role of emotion with that of cognition in explicating a person-environment dynamic supporting wandering and other dementia-related disturbances. Included is evidence of the theory's testability and elaboration of its implications. The LRE-EWD model resolves conflicting views and evidence from current research on environmental interventions for behavior disturbances and opens new avenues to advance this field of study and practice.     

The tailored activity program (TAP) to address behavioral disturbances in frontotemporal dementia: a feasibility and pilot study

Purpose: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads).

Methods: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n?=?9; Control: n?=?11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman’s rho correlations) measured the impact of the program on the dyads.

Results: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: “carer perceived benefits”, “carer readiness to change”, “strategies used by carer to engage person with dementia”, “barriers to the Tailored Activity Program uptake/implementation”, and “person with dementia engagement”. Quantitative outcomes showed an overall reduction of behavioral symptoms (F_18.34?=?8.073, p?=?0.011) and maintenance of functional performance in the person with dementia (F_18.03?=?0.375, p?=?0.548).

Conclusions: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms.

• Implications for rehabilitation

• The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia.

• The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.

     

Sensoristasis and Imbalance in Persons with Dementia

Purpose: To present a model of sensoristasis and imbalance for use by health care professionals to deliver care to older adults with irreversible dementing illness.
Organizing Constructs: The Sensoristasis Model shows the need of people with dementia to experience a balance between sensory-stimulating and sensory-calming activity. This model builds on Lawton's environmental docility hypothesis and on Hall and Buckwalter's Progressively Lowered Stress Threshold Model.
Methods: The model was derived from empirical evidence, theory, and clinical experience. Levels of agitation of three acute care patients experiencing sensoristasis and imbalances in sensoristasis indicate tenets of the model.
Findings: Older adults with dementia experience intrapsychic discomfort because of imbalances in the pacing of sensory-stimulating or sensory-calming activity. Consequences of intrapsychic discomfort include agitated behaviors and episodic or premature decline in instrumental and social function.
Conclusions: Pacing of activity must be guided by interventions that facilitate optimum sensoristasis and often need to be adjusted during stress, environmental change, and progression of the illness. Interventions can ameliorate some of the negative consequences of imbalances in sensoristasis when optimal pacing is not attained.     

Representations of people with dementia – subaltern,person, citizen

GILMOUR JA and BRANNELLY T. Nursing Inquiry 2010; 17 : 240–247
Representations of people with dementia – subaltern, person, citizen This study traces shifts in health professional representations of people with dementia. The concepts of subaltern, personhood and citizenship are used to draw attention to issues around visibility, voice and inclusion. Professional discourses and practices draw upon, and are shaped by historical and contemporary representations. Until recently, people with dementia were subaltern in nursing and medical discourses; marginalised and silenced. The incorporation of contemporary representations foregrounding personhood and citizenship into health professional accounts provide space for transformative styles of care. Privileging personhood centralises the person with dementia in social networks, focusing on their experiences and relationships. Respecting citizenship involves challenging discrimination and stigma: nursing from a rights‐based approach necessitates listening and being responsive to the needs of the person with dementia. Incorporating contemporary representations in health professional practice requires the discarding of the historically dominant elite and authoritarian accounts of dementia still apparent in some nursing texts along with, perhaps, the historically burdened term of dementia itself.     

Information in dementia care: sense making and a public health direction for the UK?

Providing information is a core focus of policy and practice in dementia care. Information is a vehicle through which people can be enabled or disabled, so it is essential that we ensure that information is available in a way that is accessible and relevant for people with dementia and that it enables personal aspiration and collective identity to be advanced in a way that is to the benefit of those living with dementia. People with dementia need information to support autonomy in making decisions and in acting on those decisions. Information must be provided in a way that is appropriate to the individual and to achieve that requires knowledge of the needs of that individual. However, maintaining autonomy includes, but involves much more than, the provision of information - others need to listen and hear their views and be prepared to act on them. As professionals, we must be aware that the (dementia) information we provide may disrupt the biographical narrative that people with dementia value. Thus, a person-centred approach encourages the sharing of knowledge and information. The (mis)use of information also impacts on the way that society disables, discriminates and applies barriers against people with disability.     

Users’ and professionals’ contributions in the process of designing an easy-to-use videophone for people with dementia

Abstract

Purpose: To develop a design concept for an easy-to-use videophone for people with dementia and to evaluate the design and need of such a product. Method: In this project, we have used an inclusive design approach that includes the target users in the design process. In an earlier study, the need of a videophone was examined and a requirement specification was developed. In this study, a preliminary design concept was developed. Five focus groups of people with dementia, significant others and occupational therapists working with people with dementia were formed to capture their experiences, expectations and thoughts concerning the videophone and the design concept. Data were analysed using a grounded theory approach. Findings: The participants pointed out that the design of the videophone should be flexible in order to meet the needs of people with dementia, be easy-to-use and not look like assistive technology. In order to facilitate learning, the videophone should be introduced in an early stage of the disease. Conclusions: A videophone has potentials to enable videophone calls without assistance, add quality in communication and provide possibilities for monitoring. Further work will focus on developing a prototype to be empirically tested by people with dementia and significant others.

• Implications for Rehabilitation

• An easy-to-use videophone was viewed as an important device that could support people with dementia in making videophone calls without assistance. It was also viewed as a product that significant others could use for monitoring the person with dementia, for example to judge the well-being of the person. But monitoring should be used with caution and not without the consent of the person with dementia.

• It was viewed as important that the videophone be introduced in an early stage of the disease in order to facilitate learning, so that the person can get used to the new way of making telephone calls and incorporate the new habit in his/her routines.

• In order to motivate people with dementia to start using a videophone, it was recommended that the videophone should be introduced as a product which is a pleasure to use, and not as a compensation for impairment or to solve a problem.

     

居家痴呆病人照料者负担及其相关因素

[目的]了解居家痴呆病人照料者的负担及相关因素。[方法]采用问卷及访谈相结合的方法进行调查。用于照料者的问卷包括:Zarit照料者负担问卷、社会支持问卷、简易应对方式问卷、自行设计的知识技能问卷;用于病人的问卷有:痴呆临床分级量表、日常生活能力量表、简易智能状态量表、加利福尼亚痴呆行为问卷。[结果]居家痴呆病人照料者主观感受的负担较重,中度、重度负担者占67.5%。影响照料者负担的因素有痴呆严重程度、病程、行为和心理症状、认知功能及日常生活能力、照料者同病人之间的关系质量、已照料病人时间、应对方式、社会支持、痴呆知识和照料技能掌握情况。[结论]痴呆病人照料者负担是病人、照料者和社区或社会总体反应的结果,应进行综合干预。     

Information provision services in dementia care

There are currently 25 million people with dementia worldwide, and this number is rising. Dementia has been highlighted as a major priority for health care and research because of the enormous economical and health burden associated with it. Consultations with people with dementia and carers have highlighted that timely well-targeted information services are a key priority for enabling them to 'live well with dementia'. Despite this, the evidence base for the optimal design and delivery of an information provision service is limited. Findings from randomised controlled trials and other studies have indicated that information provision does confer some benefit in carer outcomes and in the symptoms and well-being of people with dementia. However, there is limited understanding of the optimal design of such a service because of the variety of approaches that have been evaluated, the wide range of settings and locations and the lack of a clear conceptual framework. The existing evidence base supports the importance of an optimised information provision service and strongly indicates the need for a large-scale RCT to identify the most effective and cost-effective design for people with dementia and their carers.     

The use of drama to support reflection and understanding of the residents’ situation in dementia care: a pilot study

Background. One key aspect of person‐centredness is striving to understand both the patients’ experiences and behaviours from their perspective. These aspects are precisely those that staff in dementia care highlight as causing them most difficulty because the people in their care have major problems expressing themselves. There is thus a need to develop a method to help the staff to achieve interpretation through reflection. Aim. The aim of this study was to explore the use of drama as a tool to support reflection among staff working in the residential care of people with dementia. Design. A qualitative evaluation of a programme consisting of three drama sessions with staff working in residential care (n = 10 nurse assistants). Methods. Data comprised observations and tape recordings of the sessions, the researchers’ reflections after each session and a focus‐group interview with the participants. The texts were analysed using qualitative content analysis. Results. The analysis showed that: (i) the exercises stimulate reflection about daily caring practice; (ii) the participants must receive extensive information about the purpose of the sessions; (iii) the research team must secure the defined frames and conditions and have practical knowledge about caring for people with dementia and (iv) the management needs to be stable, committed and supportive. Conclusion. Drama seems to be a valid tool to aid reflection, but several adjustments are needed concerning both the content of the sessions and the methodology. When designing a larger intervention study, it would be preferable to the sessions to be combined with staff support to effect changes in care provision resulting from their increased awareness of the residents’ situation and experience. Implications for practice. Our results showed that drama can be a means to enhance reflection among staff in residential care for people with dementia. Further research is however needed concerning the effects for the staff's situation and nursing care quality.     

Demonstration of the usefulness of a theoretical framework for humanising care with reference to a residential aged care service in Australia

Aims and objectives. To demonstrate the usefulness of a theoretical framework for humanising care of dementia patients. Background. The term humanisation of care has been increasingly used to describe an approach to health care that is informed by core dimensions of what it means to be human. Recent developments in dementia care highlight the importance of maintaining personhood in people with dementia. Design. A conceptual framework is proposed by which the humanisation of care can be understood and applied. Eight dimensions that articulate core features of what needs to be attended to in order for a person to feel more deeply ‘met’ as a human being are discussed. Evidence from an evaluative study of a dementia outreach service is used to illustrate the usefulness of the humanising framework. Methods. Case study examples demonstrate the value of this framework by describing how a dementia outreach service enables care staff in residential aged care facilities to change their focus in the provision of care to residents with dementia. Each of the eight dimensions of humanisation/dehumanisation is used to illustrate how the dementia outreach service team have led to the improvements in resident care. Results. Positive outcomes can be achieved by providing humanised care to residents with dementia. Conclusion. The paper highlights the potential for the humanising framework to be used in dementia care and shows how the framework can be helpfully translated into practice so that carers are supported to adopt an inclusive view of care delivery. Relevance to clinical practice. A comprehensive framework, grounded in a strong philosophical foundation, can name a breadth of criteria for humanly sensitive care and can be translated into practice in such a way as to potentially transform the provision of care to residents in residential aged care facilities.     

Promoting safer home environments for persons with Alzheimer's disease. The Home Safety/Injury Model

This article describes a Home Safety/Injury Model derived from Social Cognitive Theory. The model's three components are safety platform, the person with dementia, and risky behaviors. The person with dementia is in the center, located on the safety platform composed of the physical environment and caregiver competence. The interaction between the underlying dementia and indicators of frailty can lead to the person with dementia performing risky behaviors that can overcome the safety platform's resources and lead to an accident or injury, and result in negative consequences. Through education and research, the model guides proactive actions to prevent risky behaviors of individuals with dementia by promoting safer home environments and increased caregiver competence.     

The communication challenges faced in adopting a palliative care approach in advanced dementia

This paper discusses one aspect from the findings of an Australian study aimed at understanding the needs of people with advanced dementia. Specifically, this paper focuses on the communication issues that might potentially inhibit the implementation of a palliative care approach for a person with advanced dementia in a residential aged care facility (RACF). Six focus groups consisting of 34 participants and 24 semistructured interviews were conducted. Participants were drawn from palliative care specialty staff, palliative care volunteers, designated aged or dementia specialist staff from an area health service, general practitioners, RACF staff and family carers. The findings show communication issues identified by the participants were a significant factor impacting on their capacity to adopt a palliative care approach in caring for people with advanced dementia. The findings support the need for education, skill development and networking to occur among the key providers of care in RACFs to ensure the provision of 'best practice' palliative care to residents with advanced dementia and their families.     

Assisted living nursing practice: the language of dementia: theories and interventions

The person with dementia uses behavior to communicate, but their behavior is altered by the combination of neurological damage and impairment, altered interpersonal relationships and reactions of others, and the individual's loss or weakening of their lifelong defenses or coping mechanisms. This article discusses the routes by which behavior can be understood and describes a constellation of needs of a person with dementia that has a unique fit with person-centered care. Three evidence-based models (theories) and interventions specific to dementia behaviors are discussed: the Need-Driven Dementia-Compromised Behavior Model, the Progressively Lowered Stress Threshold Model, and the utilization of self-identity roles. Montessori-based activities are another approach to person-centered dementia care that respect, as do the models, the dignity, worthiness and interests of the person afflicted with dementia. The models discussed in this article all seek to improve the quality of life of the person with dementia. Other than those at the profound end stage of dementia, most sufferers can communicate feelings. Subjective quality of life must be determined based on the self-report of the person suffering with dementia so that treatment interventions and effectiveness are grounded in that person's reality.     

Behaviors associated with dementia: whether resisting care or exhibiting apathy, an older adult with dementia is attempting communication. Nurses and other caregivers must learn to 'hear' this language

Seemingly simple adjustments in care routines and approaches can make a significant difference in the experiences of people with dementia. This article provides an overview of cognitive impairment in older adults and suggests interventions that can help providers understand the "behavioral symptoms" of dementia, which are often considered a way of communicating unmet needs. By focusing on the person rather than on the disease, nurses promote comfort and functional autonomy in older adults whose cognitive impairments have progressed and yet who are very much alive and deserving of respectful, dignified care.