Early onset dementia: A narrative review of the literature

Over the past forty years, significant research has been conducted on the epidemiology of late onset dementia. Less is known however, about the prevalence, incidence and burden of illness of early onset dementia (occurring prior to 65 years of age). The purpose of this narrative review is to examine existing literature regarding the experiences and implications of living with early onset dementia for patients, caregivers, and family members. The following questions were addressed: (1) What is the impact of early onset dementia on patients, families and carers? and; (2) What are the needs of patients with early onset dementia and their family and carers? Key findings form this review are presented.

Translating training in the NYU Caregiver Intervention in Australia: Maintaining fidelity and meeting graduate standards in an online continuing professional education setting

The aim of this study was to develop an Internet-based self-directed training program for Australian healthcare workers to facilitate learning and competence in delivery of a proven intervention for caregivers of people with dementia: The New York University Caregiver Intervention (NYUCI). The NYUCI is a nonpharmacological, multicomponent intervention for spousal caregivers. It is aimed at maintaining well-being by increasing social support and decreasing family discord, thereby delaying or avoiding nursing home placement of the person with dementia. Training in the NYUCI in the United States has, until now, been conducted in person to trainee practitioners. The Internet-based intervention was developed simultaneously for trainees in the U.S. and Australia. In Australia, due to population geography, community healthcare workers, who provide support to older adult caregivers of people with dementia, live and work in many regional and rural areas. Therefore, it was especially important to have online training available to make it possible to realize the health and economic benefits of using an existing evidence-based intervention. This study aimed to transfer knowledge of training in, and delivery of, the NYUCI for an Australian context and consumers. This article details the considerations given to contextual differences and to learners’ skillset differences in translating the NYUCI for Australia.

A theoretical framework for designing and evaluating strategies to identify cases of serious child abuse and neglect

A central dimension of the State’s responsibility in a liberal democracy and any just society is the protection of individuals’ central rights and freedoms, and the creation of the minimum conditions under which each individual has an opportunity to lead a life of sufficient equality, dignity and value. A special subset of this responsibility is to protect those who are unable to protect themselves from genuine harm. Substantial numbers of children suffer serious physical, emotional and sexual abuse, and neglect at the hands of their parents and caregivers or by other known parties. Child abuse and neglect occurs in a situation of extreme power asymmetry. The physical, social, behavioural and economic costs to the individual, and the social and economic costs to communities, are vast. Children are not generally able to protect themselves from serious abuse and neglect. This enlivens both the State’s responsibility to protect the child, and the debate about how that responsibility can and should be discharged. A core question arises for all societies, given that most serious child maltreatment occurs in the family sphere, is unlikely to be disclosed, causes substantial harm to both individual and community, and infringes fundamental individual rights and freedoms. The question is: how can society identify these situations so that the maltreatment can be interrupted, the child’s needs for security and safety, and health and other rehabilitation can be met, and the family’s needs can be addressed to reduce the likelihood of recurrence? This chapter proposes a theoretical framework applicable for any society that is considering justifiable and effective policy approaches to identify and respond to cases of serious child abuse and neglect. The core of the theoretical framework is based on major principles from both classical liberal political philosophy (Locke and Mill), and leading political philosophers from the twentieth century and the first part of the new millennium (Rawls, Rorty, Okin, Nussbaum), and is further situated within fundamental frameworks of civil and criminal law, and health and economics.

Acceptability of a rice-based oral rehydration solution in Port Moresby General Hospital's Children's Outpatient Department

The guardians of children brought to the Port Moresby General Hospital's Children's Outpatient Department with a chief complaint of diarrhoeal disease were questioned regarding their preference of glucose-based vs rice-based oral rehydration solution (ORS) in order to determine the acceptability of a rice-based ORS. Of the 93 guardians interviewed, greater than 60% preferred the glucose-based solution in its mixability, appearance and taste, and 65% initially reported that their children preferred the taste of the glucose solution. However, after a 30-minute trial, only 58% of children still preferred the glucose solution. In a country where diarrhoeal disease is a leading cause of child death and guardians are the primary health care providers, the acceptability of an ORS is critical to the morbidity and mortality of Papua New Guinea's children. Killing an estimated 2.9 million children annually, diarrheal disease is the second leading cause of child mortality worldwide. Diarrheal disease is also the second leading cause of child mortality in Papua New Guinea (PNG), killing an average 193 inpatient children per year over the period 1984-90. However, despite the high level of diarrhea-related mortality and the proven efficacy of oral rehydration therapy (ORT) in managing diarrhea-related dehydration, standardized ORT has been underutilized in PNG. The current glucose-based oral rehydration solution (ORS) does not reduce the frequency or volume of a child's diarrhea, the most immediate concern of caregivers during episodes of illness. Cereal-based ORS, made from cereals which are commonly available as food staples in most countries, better address the short-term concerns of caregivers while offering a superior nutritional profile. A sample of guardians of children brought to the Port Moresby General Hospital's Children's Outpatient Department complaining of child diarrhea were asked about their preferences on glucose-based versus rice-based ORS in order to determine the acceptability of a rice-based ORS. More than 60% of the 93 guardians interviewed preferred the glucose-based solution for its mixability, appearance, and taste. 65% initially reported that their children preferred the taste of the glucose solution. However, after a 30-minute trial, only 58% of children still preferred the glucose solution.

The first episode of psychosis: The experience of relatives

Objective The aim was to determine the extent of and the correlates of the distress and impact of care families of patients with first episode psychosis were experiencing when they first came for treatment. Method Subjects were 238 individuals who had presented with a first episode of psychosis and their family members. Family members were assessed with the Psychological General Well-Being Scale, and the Experience of Caregiving Inventory. Patient data included assessment of positive and negative symptoms, depression, quality of life, and substance use. Results Family members of these first-episode patients were experiencing distress and difficulties. It was the family's appraisal of the impact of the illness that was associated with their psychological well-being. Conclusion As the majority of these first episode families are keen to be involved early and have engaged in an intervention programme, the next step should be an evaluation of their involvement to determine if it is effective.

Community-based social marketing: Effects on social norms

Purpose This research investigates whether application of a community-based social marketing principle, namely increasing the visibility of a target behaviour in the community, can change social norms surrounding the behaviour. Design/methodology/approach A repeated measures quasi-experimental design was employed to evaluate the Victorian Health Promotion Foundation’s Walk to School 2013 programme, which increases the visibility of walking to and from school through programme participation to promote active transportation for primary school children. The target population for the survey were caregivers of primary school children aged between 5-12 years old. The final sample size across the three online surveys administered was 102 respondents. Findings The results suggest that the programme increased caregivers’ perceptions that children in their community walked to and from school and that walking to and from school is socially acceptable. Originality/value The study contributes to addressing the recent call for research examining the relationship between community-based social marketing principles and programme outcomes. Further, the results provide insight for enhancing the social norms approach, which has traditionally relied on changing social norms exclusively through media campaigns.

Aggressive surgical interventions for severe stroke: Impact on quality of life, caregiver burden and family outcomes

Introduction: Decompressive hemicraniectomy, clot evacuation, and aneurysmal interventions are considered aggressive surgical therapeutic options for treatment of massive cerebral artery infarction (MCA), intracerebral hemorrhage (ICH), and severe subarachnoid hemorrhage (SAH) respectively. Although these procedures are saving lives, little is actually known about the impact on outcomes other than short-term survival and functional status. The purpose of this study was to gain a better understanding of personal and social consequences of surviving these aggressive surgical interventions in order to aid acute care clinicians in helping family members make difficult decisions about undertaking such interventions. Methods: An exploratory mixed method study using a convergent parallel design was conducted to examine functional recovery (NIHSS, mRS & BI), cognitive status (Montreal Cognitive Assessment Scale, MoCA), quality of life (Euroqol 5-D), and caregiver outcomes (Bakas Caregiver Outcome Scale, BCOS) in a cohort of patients and families who had undergone aggressive surgical intervention for severe stroke between the years 2000–2007. Data were analyzed using descriptive statistics, univariate and multivariate analysis of variance, and multivariate logistic regression. Content analysis was used to analyze the qualitative interviews conducted with stroke survivors and family members. Results: Twenty-seven patients and 13 spouses participated in this study. Based on patient MOCA scores, overall cognitive status was 25.18 (range 23.4-26.9); current functional outcomes scores: NIHSS 2.22, mRS 1.74, and BI 88.5. EQ-5D scores revealed no significant differences between patients and caregivers (p=0.585) and caregiver outcomes revealed no significant differences between male/female caregivers or patient diagnostic group (MCA, SAH, ICH; p=""0.103).<"/span><"/span> Discussion: Overall, patients and families were satisfied with quality of life and decisions made at the time of the initial stroke. There was consensus among study participants that formal community-based support (e.g., handibus, caregiving relief, rehabilitation assessments) should be continued for extended periods (e.g., years) post-stroke. Ongoing contact with health care professionals is valuable to help them navigate in the community as needs change over time.

Risk assessment of wandering behavior in mild dementia

Objective This prospective longitudinal study aims to determine the risk factors of wandering-related adverse consequences in community-dwelling persons with mild dementia. These adverse consequences include negative outcomes of wandering (falls, fractures, and injuries) and eloping behavior. Methods We recruited 143 dyads of persons with mild dementia and their caregivers from a veteran's hospital and memory clinic in Florida. Wandering-related adverse consequences were measured using the Revised Algase Wandering Scale – Community Version. Variables such as personality (Big Five Inventory), behavioral response to stress, gait, and balance (Tinetti Gait and Balance), wayfinding ability (Wayfinding Effectiveness Scale), and neurocognitive abilities (attention, cognition, memory, language/verbal skills, and executive functioning) were also measured. Bivariate and logistic regression analyses were performed to assess the predictors of these wandering-related adverse consequences. Results A total of 49% of the study participants had falls, fractures, and injuries due to wandering behavior, and 43.7% demonstrated eloping behaviors. Persistent walking (OR = 2.6) and poor gait (OR = 0.9) were significant predictors of negative outcomes of wandering, while persistent walking (OR = 13.2) and passivity (OR = 2.55) predicted eloping behavior. However, there were no correlations between wandering-related adverse consequences and participants' characteristics (age, gender, race, ethnicity, and education), health status (Charlson comorbidity index), or neurocognitive abilities. Conclusion Our results highlight the importance of identifying at-risk individuals so that effective interventions can be developed to reduce or prevent the adverse consequences of wandering.

Turnover intentions of employees with informal eldercare responsibilities: The role of core self-evaluations and supervisor support

As longevity increases, so does the need for care of older relatives by working family members. This research examined the interactive effect of core self-evaluations and supervisor support on turnover intentions in two samples of employees with informal caregiving responsibilities. Data were obtained from 57 employees from Australia (Study 1) and 66 employees from the United States and India (Study 2). Results of Study 1 revealed a resource compensation effect, that is, an inverse relationship between core self-evaluations and turnover intentions when supervisor care support was low. Results of Study 2 extended these findings by demonstrating resource boosting effects. Specifically, there was an inverse relationship between core self-evaluations and subsequent turnover intentions for those with high supervisor work and care support. In addition, employees' satisfaction and emotional exhaustion from their work mediated the inverse relationship between core self-evaluations and subsequent turnover intentions when supervisor work support and care support were high. Overall, these findings highlight the importance of employee- and supervisor-focused intervention strategies in organizations to support informal caregivers.

Employees’ eldercare demands, strain, and perceived support

Purpose In many countries, both the number of older people in need of care and the number of employed caregivers of elderly relatives will increase over the next decades. The purpose of this paper is to examine the extent to which perceived organizational, supervisor, and coworker support for eldercare reduce employed caregivers’ strain and weaken the relationship between eldercare demands and strain. Design/methodology/approach Survey data were collected from 100 employed caregivers from one organization. Findings Results showed that eldercare demands were positively related to strain, and perceived organizational eldercare support (POES) was negatively related to strain. In addition, high POES weakened the relationship between eldercare demands and strain. Research limitations/implications The cross-sectional design and use of self-report scales constitute limitations of the study. Practical implications POES is a resource for employed caregivers, especially when their eldercare demands are high. Originality/value This research highlights the relative importance of different forms of perceived support for reducing employed caregivers’ strain and weakening the relationship between eldercare demands and strain.

Eldercare demands, strain, and work engagement: The moderating role of perceived organizational support

Demographic changes give rise to an increasing number of middle-aged employees providing home-based care to an elderly family member. However, the potentially important role of employees' perceptions of organizational support for eldercare has so far not been investigated. The goal of this study was to examine a stressor–strain–outcome model (Koeske & Koeske, 1993) of eldercare strain as a mediator of the relationship between eldercare demands and caregivers' work engagement. Perceived organizational eldercare support was expected to attenuate the positive relationship between eldercare demands and eldercare strain and to buffer the negative relationship between eldercare strain and work engagement. Results of mediation and moderated mediation analyses with data collected from 147 employees providing eldercare supported the hypotheses. The findings suggest that perceived organizational eldercare support is especially beneficial for employees' work engagement when eldercare demands and strain are high.

Prevention of foot ulcers in the at-risk patient with diabetes: A systematic review

Background Prevention of foot ulcers in patients with diabetes is extremely important to help reduce the enormous burden of foot ulceration on both patient and health resources. A comprehensive analysis of reported interventions is not currently available, but is needed to better inform caregivers about effective prevention. The aim of this systematic review is to investigate the effectiveness of interventions to prevent first and recurrent foot ulcers in persons with diabetes who are at risk for ulceration. Methods The available medical scientific literature in PubMed, EMBASE, CINAHL and the Cochrane database was searched for original research studies on preventative interventions. Both controlled and non-controlled studies were selected. Data from controlled studies were assessed for methodological quality by two independent reviewers. Results From the identified records, a total of 30 controlled studies (of which 19 RCTs) and another 44 non-controlled studies were assessed and described. Few controlled studies, of generally low to moderate quality, were identified on the prevention of a first foot ulcer. For the prevention of recurrent plantar foot ulcers, multiple RCTs with low risk of bias show the benefit for the use of daily foot skin temperature measurements and consequent preventative actions, as well as for therapeutic footwear that demonstrates to relieve plantar pressure and that is worn by the patient. To prevent recurrence, some evidence exists for integrated foot care when it includes a combination of professional foot treatment, therapeutic footwear and patient education; for just a single session of patient education, no evidence exists. Surgical interventions can be effective in selected patients, but the evidence base is small. Conclusion The evidence base to support the use of specific self-management and footwear interventions for the prevention of recurrent plantar foot ulcers is quite strong, but is small for the use of other, sometimes widely applied, interventions and is practically nonexistent for the prevention of a first foot ulcer and non-plantar foot ulcer.

Measuring the impact of burn scarring on health-related quality of life: Development and preliminary content validation of the Brisbane Burn Scar Impact Profile (BBSIP) for children and adults

INTRODUCTION No burn-scar specific, health-related quality of life (HRQOL) measure exists. This study aimed to develop a patient-reported, evaluative HRQOL measure to assess the impact of burn scarring in children and adults. METHOD Semi-structured interviews, content validation surveys, and cognitive interviews were used to develop and test content validity of a new measure - the Brisbane Burn Scar Impact Profile (BBSIP). RESULTS Participants comprised Australian adults (n=23) and children (n=19) with burn scarring; caregivers of children with burn scarring (n=28); and international scar management experts (n=14). Items distinct from other burn scar measures emerged. Four versions of the BBSIP were developed; one for children aged 8-18 years, one for adults, one for caregivers (as proxies for children aged less than 8-years), and one for caregivers of children aged 8-18 years. Preliminary content validity of the BBSIP was supported. Final items covered physical and sensory symptoms; emotional reactions; impact on social functioning and daily activities; impact of treatment; and environmental factors. CONCLUSION The BBSIP was developed to assess burn-scar specific HRQOL and will be available at http://www.coolburns.com.au under a creative commons license. Further testing is underway.

Canadian Stroke Best Practice Recommendations: Mood, Cognition and Fatigue Following Stroke practice guidelines, update 2015

Every year, approximately 62 000 people with stroke and transient ischemic attack are treated in Canadian hospitals, and the evidence suggests one-third or more will experience vascular-cognitive impairment, and/or intractable fatigue, either alone or in combination. The 2015 update of the Canadian Stroke Best Practice Recommendations: Mood, Cognition and Fatigue Module guideline is a comprehensive summary of current evidence-based recommendations for clinicians in a range of settings, who provide care to patients following stroke. The three consequences of stroke that are the focus of the this guideline (poststroke depression, vascular cognitive impairment, and fatigue) have high incidence rates and significant impact on the lives of people who have had a stroke, impede recovery, and result in worse long-term outcomes. Significant practice variations and gaps in the research evidence have been reported for initial screening and in-depth assessment of stroke patients for these conditions. Also of concern, an increased number of family members and informal caregivers may also experience depressive symptoms in the poststroke recovery phase which further impact patient recovery. These factors emphasize the need for a system of care that ensures screening occurs as a standard and consistent component of clinical practice across settings as stroke patients transition from acute care to active rehabilitation and reintegration into their community. Additionally, building system capacity to ensure access to appropriate specialists for treatment and ongoing management of stroke survivors with these conditions is another great challenge.

Care for care: Studio REV's strategies of engagement

The artists at Studio REV-, along with their allies in the broader non-profit sector, address domestic workers’ rights in the United States. As a social practice art project, NannyVan works to improve how information about domestic rights is disseminated to these workers, whether nannies, elder caregivers or others. As part of a larger project named CareForce, the NannyVan project shows an ethics of care by using design traces as tactics and transversal methods as strategies.