Human capabilities in advanced dementia: Nussbaum's approach.

AIMS AND OBJECTIVES: To explore how Martha Nussbaum's approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes. BACKGROUND: Challenges experienced when supporting people with advanced dementia who express problematic behaviours include understanding their needs and ensuring a dignified life for them. DESIGN AND METHODS: Data were gathered using an ethnographic approach based on participatory observation. Nussbaum's capability approach was then used as a framework for the analysis. Four women diagnosed with advanced dementia who also expressed problematic behaviours were recruited from a nursing home in Northern Sweden. The data collection was performed during 2015. FINDINGS: Individuals with advanced dementia had difficulties in participating in the planning of their lives and achieving the human capability of practical reasoning. They were also at risk of being placed outside the social group, thus hindering them from attaining the human capability of affiliation. A dignified life for individuals with advanced dementia requires nursing staff to be present and to provide adapted support to ensure that the individual can actually pursue human capabilities. CONCLUSION: Creating opportunities for the human capabilities of practical reasoning and affiliation is essential as they permeate all other human capabilities. For these individuals, it was crucial not only to create opportunities for human capabilities but also to attend to their expressions and needs and to guide and steer them towards a dignified life. IMPLICATIONS FOR PRACTICE: The normative structure of the capability approach described by Nussbaum can ensure that nursing staffs move beyond fulfilling patients' basic needs to consider other capabilities vital for a dignified life.

US emergency nurses' perceptions of challenges and facilitators in the management of behavioural health patients in the emergency department: A mixed-methods study.

BACKGROUND: Behavioural health patients often have longer lengths of stay in the emergency department compared with general medical patients, and their modalities of care are not well documented. This study's purpose is to describe US emergency nurses' estimates of lengths of stay for behavioural health patients, explore factors affecting length of stay, and assess nurses' perceptions of their skills, beliefs/attitudes, and confidence in caring for this population. METHODS: Using a mixed-methods design with demographically-diverse samples of emergency nurses, survey data (N=1229) were analysed using descriptive statistics, correlation coefficients, and linear regression. Focus group participant data (N=20) were analysed for themes using constant comparison. RESULTS: Findings suggest that shorter lengths of stay are associated with higher levels of perceived nursing confidence/preparation to care for this population, along with the availability of appropriate resources and protocols/standards of care (p=0.01). Longer lengths of stay are associated with an absence of dedicated inpatient space for managing the care of these patients. CONCLUSIONS: Participants note a lack of education, resources, and treatment options tailored to the delivery of safe, effective care for behavioural health patients. The use of trained specialists and additional guidelines/protocols may help move patients through the emergency department faster and with greater surety.

The applied philosopher-scientist: Intersections among phenomenological research, nursing science, and theory as a basis for practice aimed at facilitating boys' healing from being bullied.

This article uses an exemplar of phenomenological research of middle school boys, experiences of being bullied as applied philosophy and science to illuminate the intersection of the moral and scientific realms for theory-oriented research and practice. As a consequence, a clear foundation for advancing nursing science and envisioning innovative nursing practice with boys who experience being bullied is provided. Included is a weaving together of phenomenological perspective for research and practice, Roger's (nursing) Science of Unitary Human Beings (SUHB), and SUHB-derived middle range theories of self-transcendence and power.

Healing patterns revealed in middle school boys' experiences of being bullied using Roger's Science of Unitary Human Beings (SUHB).

PROBLEM: Although two of the primary risk factors for being bullied include "male" and "middle school" status, a gap in knowledge exists of middle school boys' personal accounts and meanings of being bullied and their healing. METHODS: Giorgi's descriptive phenomenological approach using open-ended semi-structured individual interviews was used to collect and analyze evidence related to middle school boys' lived experiences of being bullied and healing. Roger's Science of Unitary Human Beings (SUHB) guided interpretation of the healing patterns. FINDINGS: Three patterns of healing were identified in boys' experiences: meaning-making, self-transcendence, and nonviolently claiming personal power. CONCLUSIONS: Evidence of healing patterns exists in middle school boys' experiences of being bullied, offering a foundation for further research and practice focused on healing. When working with middle school boys who have been bullied, nurses need to ask about their experiences and promote their healing.

Facing up to 'challenging behaviour': a model for training in staff-client interaction.

AIM: This paper draws on theory and evidence to develop a conceptual staff training model for the management of 'challenging behaviour'. BACKGROUND: Staff working with clients who are experienced as challenging commonly report negative feelings such as anxiety, anger, guilt, fear, self-blame and powerlessness, as well as dissatisfaction with their jobs. Current training programmes in challenging behaviour offer a 'smorgasbord' of content, without a clearly defined conceptual framework. DATA SOURCES: Medline and PsychInfo were searched for papers in English from 1998 to 2008, linking 'nurs*' to 'challenging behavio*' and its related terms. Additional hand-searching identified informative papers from disciplines outside nursing older than the search period. DISCUSSION: We developed an applied model for training educators in respect of challenging behaviours. The model directs educators to consider: the influence of the nurse, including their values, emotional processes and behavioural skills; features of the client; and features of the situation in which the behaviour occurs, including its culture and working practices and physical environment. IMPLICATIONS FOR NURSING: The most striking implication of the model is that it explicitly recognizes the importance of domains of learning other than skill. This enables educators to find educationally appropriate responses to resource limitations that inevitably constrain training. CONCLUSION: Challenging behaviour should be considered as a product of several intertwined factors: the actors involved - nurses, clients and others - and the situation in which the behaviour occurs, including its culture and working practices and physical environment.

The effectiveness of multistrategies on disruptive vocalization of people with dementia in institutions: a multicentered observational study.

The aim of this study was to evaluate the effectiveness of the daily interventions used by the nurses on disruptive vocalization (DV). DV includes all types of disturbing or unacceptable vocal expression: repetitive vocalization, verbal or nonverbal utterances, presented as inappropriate language, repeated and insistent demands, repeated calling out, shouting, complaining, or moaning that does not pertain to their circumstances or environment. A convenience sample of five nursing homes from the north of Italy, in the Friuli Venezia Giulia region, was included in the study. A randomized selection of 87 daily shifts was selected. Institutionalized patients with dementia, but with no associated psychiatric disorders, were eligible. Nurses involved in the study added patients progressively. Nurses involved were asked to keep diaries to record strategies and durations for each episode of DV encountered during the allotted shift. In the total amount of observation time (36,540 minutes), 23.6% (8,653 minutes) of nursing care time involved working with and managing DV patients. The nurses recorded an average of 6.5 (302/46) vocalizations on morning shifts and 7.3 (302/41) during afternoon shifts, with an average duration of about a quarter of an hour each. Managing DV with multistrategies reduces the duration of the DV episode and increases the perceived effectiveness of management.

Associations between the working characteristics of nursing staff and the prevalence of behavioral symptoms in people with dementia in residential care.

BACKGROUND: Clinical experience suggests that the work characteristics of staff in residential care may influence the well-being of residents with dementia. However, few studies have explored those anecdotal experiences. The aim of this study was to investigate associations between work characteristics of nursing staff and prevalence of behavioral symptoms among people with dementia in residential care settings. METHODS: The self-report job strain assessment scale was used to measure staff perceptions of their working environment, and the Multi Dimensional Dementia Assessment Scale to measure the occurrence of behavioral symptoms among residents in 40 residential care units for people with dementia. RESULTS: The findings show that in settings where staff reported high job strain, the prevalence of behavioral symptoms was significantly higher compared to settings where staff reported low job strain. Furthermore, settings characterized by staff having a more positive caring climate had significantly less prevalence of escape, restless and wandering behaviors compared to settings having a less positive caring climate. There was no statistically significant association between staff members' self-reported knowledge in caring for people with dementia and prevalence of behavioral symptoms. CONCLUSIONS: This study provides evidence for the oft-cited clinical experience that the well-being of nursing staff is associated with the well-being of people with dementia in residential care settings.

Behavioural phenotypes: An emerging specialist role for nurses.

The idea that behaviour can be influenced by genetics is not new and developments in the field of behavioural genetics suggest this is an area of increasing relevance to healthcare professionals who support people who have learning disabilities associated with genetic disorders. This paper considers both the evidence for behavioural phenotypes and the possible roles healthcare professionals have when supporting affected individuals and their families. The paper argues that nurses in all areas of health care need to have a foundation of skill and knowledge of behavioural phenotypes to ensure effective care is provided for individuals and their families. In addition, the paper proposes that a specialist nursing role is essential in providing direct support to clients and their families as well as in providing a consultancy and educational role to the health and social care professionals who support these families.

Psychosocial interventions for disruptive symptoms of dementia.

An estimated 6% to 8% of the adult population age 65 and older and more than 30% of those age 85 and older are affected by a dementing disorder. The annual direct and indirect cost of caring for the 4.5 million people with Alzheimer's disease in the United States is estimated to be at least $100 billion. By 2030, when the entire Baby Boomer generation is age 65 and older, the increased number of people with Alzheimer's disease could exceed the ability to absorb the added cost. Both professional and familial caregivers should be familiar with the treatment interventions that are most effective in reducing the disruptive behavioral and psychological symptoms of dementia. This article discusses the various kinds of dementia, their associated symptoms, and the psychosocial treatment options that have been found to be effective in alleviating the effects of the disease on both people with dementia and their caregivers. Psychosocial strategies can be divided into four major subgroups: communication techniques, behavioral strategies, environmental modifications, and caregiver education. The ultimate goal is to optimize functioning of people with dementia and minimize caregiver strain.

Men with severe learning disabilities and challenging behaviour in long-stay hospital care: qualitative study.

BACKGROUND: Community-based health and social care professionals have little knowledge of the past experiences of people with severe learning disabilities and challenging behaviour who are living in institutions. AIMS: To gain a greater understanding of the experiences and needs of men who are living in a locked ward. METHOD: The study sample consisted of 20 men who were living in a locked ward of a long-stay institution. Qualitative (ethnographic) methods were used, involving participant observation (for around 250 hours) on the ward. All traceable families were interviewed. The analysis used grounded theory, and material was fed back into the resettlement process throughout. RESULTS: The men's lives were emotionally, socially and physically deprived. Their individual, gender and social identities were not recognised, and their general health and mental healthcare needs were inadequately addressed. CONCLUSIONS: People who live in long-stay institutions, segregated from society, lose their individual and social identity, which complicates the presentation of mental health and behavioural problems, and raises important adult protection issues.

The needs of older people with dementia in residential care.

BACKGROUND: People with dementia often move into care homes as their needs become too complex or expensive for them to remain in their own homes. Little is known about how well their needs are met within care homes. METHOD: The aim of this study was to identify the unmet needs of people with dementia in care and the characteristics associated with high levels of needs. Two hundred and thirty-eight people with dementia were recruited from residential care homes nationally. Needs were identified using the Camberwell Assessment of Needs for the Elderly (CANE). RESULTS: Residents with dementia had a mean of 4.4 (SD 2.6) unmet and 12.1 (SD 2.6) met needs. Environmental and physical health needs were usually met. However, sensory or physical disability (including mobility problems and incontinence) needs, mental health needs, and social needs, such as company and daytime activities, were often unmet. Unmet needs were associated with psychological problems, such as anxiety and depression, but not with severity of dementia or level of dependency. CONCLUSION: Mental health services and residential home staff need to be aware that many needs remain unmet and much can be done to improve the quality of life of the residents with dementia.

Balancing between contradictions: the meaning of interaction with people suffering from dementia and "behavioral disturbances".

Interacting with people who suffer from dementia poses a challenge for care providers, and the presence of behavioral disturbances adds a further complication. Our article is based on the assumption that behavioral disturbances are meaningful expressions of experiences. Six narrative interviews were conducted with care providers with the aim of illuminating the meaning of interaction with people suffering from dementia and behavioral disturbances. The interviews were tape-recorded, transcribed into text, and interpreted using a phenomenological hermeneutic methodology. The findings indicate that interacting with people with dementia and behavioral disturbances, as narrated by care providers, means balancing between contradictions concerning meeting the person in my versus her/his world, feeling powerless versus capable, and feeling rejected versus accepted. Interaction involves being at various positions along these continua at different points in time. Furthermore, it means facing ethical dilemmas concerning doing good for the individual or the collective. This is interpreted as a dialectic process and is reflected on in light of Hegel's reasoning about the struggle between the master and the slave.

A randomized controlled trial of a behavior advisory service for hospitalized older patients with confusion.

OBJECTIVE: To determine whether individualized advice on non-pharmacological strategies for hospitalized older patients with confusion and behavioral problems can improve levels of agitation and reduce the use of psychotropic medication. METHOD: Pragmatic randomized controlled trial in two metropolitan teaching hospitals in South Australia. Seventy-one older patients with confusion and a behavioral disturbance were randomly allocated to receive either an assessment and ongoing individualized advice from an extended practice nurse on non-pharmacological strategies or usual care. Usual care included an assessment by a geriatrician. MEASUREMENTS: Primary outcomes were levels of agitation (Pittsburgh Agitation Scale), appropriateness of psychotropic medication prescribing (Medication Appropriateness Index) and levels of psychotropics administered (chlorpromazine and diazepam dose equivalents). Secondary outcomes were length of stay, discharge destination, number of falls, restraint use and satisfaction from nursing staff and next of kin. RESULTS: Levels of agitation were modest at baseline with mean PAS intervention group 3.4 (SD = 0.5) and control group 4.0 (SD = 0.4) and both groups improved over time to 1.7 (SD = 0.4) for the intervention group and 1.8 (SD = 0.3) for the control group on the final day of data collection. Median length of follow-up was nine days. There was no effect of the intervention on levels of agitation, amount and appropriateness of psychotropic medication prescribed and administered, falls, length of stay, discharge destination, restraint use and nursing and next of kin satisfaction. CONCLUSION: A nursing consultation service providing individualized non-pharmacological advice does not improve patient agitation or use of psychotropic medication for older patients with confusion and behavioral problems in an acute hospital.

Family carers' responses to behavioural and psychological symptoms of dementia.

OBJECTIVES: To describe the responses of family carers to the behavioural and psychological symptoms associated with dementia. METHODS: Thirty family carers of people with dementia were identified in a survey of mental disorder in general practice. Another 20 were referred by local aged mental health services. Carers were interviewed using the Manchester and Oxford University Scale for the Psychopathological Assessment of Dementia (MOUSEPAD) which rates behavioural and psychological disturbances. Carers' customary responses to current symptoms were recorded verbatim and categorised using a structured typology. RESULTS: Symptom frequency increased in line with dementia severity. Disturbances were generally well tolerated. Most were ignored where possible, except for wandering from home. Other common responses included avoiding triggers, providing reassurance, reality orientation, diversion, and collusion with false beliefs. Restrictive or punitive responses were uncommon. CONCLUSIONS: Few carers articulated clear strategies to deal with behavioural and psychological symptoms. For most, tolerance proved more effective and less distressing than arguments and reprimands. Carers' responses are likely to be influenced by social and cultural factors and may differ in other settings.

A pilot study on a home-based caregiver training program for improving caregiver self-efficacy and decreasing the behavioral problems of elders with dementia in Taiwan.

OBJECTIVE: To investigate the effectiveness of a home-based caregiver training program for caregivers of elders with dementia and behavioral problems. METHODS: A prospective study was conducted in the communities of Northern Taiwan. Forty-eight patients with dementia and their family caregivers were included. The experimental group (n = 24) received a two-session in-home caregiver training program, and the control group (n = 24) received only written educational materials. The Chinese version of Cohen-Mansfield Agitation Inventory (CMAI), community form, was used to measure the behavioral problems of patients with dementia. The caregiver's self-efficacy, for managing the demented person's agitation, was measured by the Agitation Management Self-efficacy Scale (AMSS). The CMAI and AMSS were administered before (baseline), three weeks (1st post-test), and three months (2nd post-test) after the two-session training program. RESULTS: Except for the physically aggressive behavior subscale, the scores of physically non-aggressive behavior, verbally aggressive and non-aggressive behavior subscales as well as the overall CMAI decreased significantly and continuously in the experimental group and differed significantly from the changed scores from those in the control group (p < 0.05). Physically aggressive behaviors showed a decreasing trend for both groups. Scores of the Agitation Management Self-Efficacy Scale and its subscales increased significantly and continuously in the experimental group in comparison to those in the control group (p < 0.05). CONCLUSIONS: This home-based caregiver training program is helpful for decreasing problematic behaviors of elder people with dementia and it improves the caregiver's self-efficacy for managing problematic behaviors.

Behaviour problems in adult women with Rett syndrome.

BACKGROUND: Despite considerable interest in the genetic, physical and neurological aspects of Rett syndrome (RS), there have been few studies of associated behavioural and emotional features. Furthermore, few case studies or surveys have included adult women with RS. The main aim of the present study was to compare behaviour problems in a sample of women with RS against data from normative samples. METHODS: The primary carers of 50 women with RS completed the community version of the Aberrant Behavior Checklist. RESULTS: Women with RS were rated as having lower levels of irritability, hyperactivity and inappropriate speech behaviours than normative samples of adults with intellectual disability. CONCLUSIONS: A number of factors may affect the presentation of behaviour problems in women with RS (e.g. cognitive impairments or physical disabilities). Therefore, more research is needed in order to generate information about the behavioural phenotype of RS. The implications of the present data for future research are also discussed.

Effects of behavioral interventions on disruptive behavior and affect in demented nursing home residents.

BACKGROUND: Disruptive behaviors are prevalent in nursing home residents with dementia and often have negative consequences for the resident, caregiver, and others in the environment. Behavioral interventions might ameliorate them and have a positive effect on residents' mood (affect). OBJECTIVES: This study tested two interventions-an activities of daily living and a psychosocial activity intervention-and a combination of the two to determine their efficacy in reducing disruptive behaviors and improving affect in nursing home residents with dementia. METHODS: The study had three treatment groups (activities of daily living, psychosocial activity, and a combination) and two control groups (placebo and no intervention). Nursing assistants hired specifically for this study enacted the interventions under the direction of a master's prepared gerontological clinical nurse specialist. Nursing assistants employed at the nursing homes recorded the occurrence of disruptive behaviors. Raters analyzed videotapes filmed during the study to determine the interventions' influence on affect. RESULTS: Findings indicated significantly more positive affect but not reduced disruptive behaviors in treatment groups compared to control groups. CONCLUSIONS: The treatments did not specifically address the factors that may have been triggering disruptive behaviors. Interventions much more precisely designed than those employed in this study require development to quell disruptive behaviors. Nontargeted interventions might increase positive affect. Treatments that produce even a brief improvement in affect indicate improved quality of mental health as mandated by federal law.