A randomized controlled trial of a correspondence-based intervention for carers of relatives with psychosis

Background Family members play a crucial role in supporting the recovery of loved ones with psychosis. The journey of recovery is not only traversed by the person experiencing the mental illness but also by their family. Interventions to support these families have traditionally either focused on psychoeducation or addressed problematic interactions or expressed emotion. Family programmes have far less frequently emphasized supporting family members' adjustment to the challenges posed by their relative's disorder or their recovery from associated distress. The study compared a control condition that received only a psychoeducational booklet (Information) and a condition also receiving a correspondence-based interactive recovery-oriented intervention (Connections). The Connections group was expected to show greater improvements in recovery knowledge, well-being, experiences of caregiving, hopefulness and distress. Method A randomized controlled trial was conducted to evaluate the effectiveness of two correspondence-based family interventions delivered to 81 carers of relatives with psychosis. Results Intent-to-treat analyses showed no differential outcomes between conditions, but an analysis of participants who substantially completed their allocated treatment showed that carers receiving Connections had significantly more improvements in well-being, positive experiences of caregiving and distress. Conclusions Correspondence interventions that support carer's recovery may result in more positive mental health for those who complete key elements of the programme compared with information alone. However, many carers do not complete a correspondence programme and this may limit its impact.

Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai

Background: There is a paucity of research assessing health-related quality of life (HRQoL) and self-efficacy in caregivers of relatives with dementia in mainland China. Aims: To compare the level of HRQoL between caregivers and the general population in mainland China and to assess the role of caregiver self-efficacy in the relationship between caregiver social support and HRQoL. Methods: A cross-sectional study was conducted in Shanghai, China. The caregivers were recruited from the outpatient department of a teaching hospital. A total of 195 participants were interviewed, using a survey package including the Chinese version of the 36-Item Short-Form Health Survey (SF-36), demographic data, the variables associated with the impairments of care recipients, perceived social support and caregiver self-efficacy. The caregivers' SF-36 scores were compared with those of the general population in China. Results: The results indicated that the HRQoL of the caregivers was poorer compared with that of the general population when matched for age and gender. Multiple regression analyses revealed that caregiver self-efficacy is a partial mediator between social support and HRQoL, and a partial mediator between behavioral and psychological symptoms of dementia (BPSD) and caregiver mental health. Conclusion: Assisting with managing BPSD and enhancing caregiver self-efficacy can be considered integral parts of interventions to improve caregiver HRQoL.

Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai

We explored the mediation effect of caregiver self-efficacy on the influences of behavioral and psychological symptoms (BPSD) of dementia care recipients (CRs) or family caregivers’ (CGs) social supports (informational, tangible and affectionate support and positive social interaction) on CGs’ mental health. We interviewed 196 CGs, using a battery of measures including demographic data of the dyads, CRs’ dementia-related impairments, and CGs’ social support, self-efficacy and the Medical Outcome Study (MOS) Short-Form (SF-36) Health Survey. Multiple regression analyses showed that gathering information on self-efficacy and managing CG distress self-efficacy were the partial mediators of the relationship between positive social interaction and CG mental health. Managing caregiving distress self-efficacy also partial mediated the impact of BPSD on CG mental health. We discuss implications of the results for improving mental health of the target population in mainland China.

Stress and burnout amongst professional carers of people with intellectual disability : another health inequity

Purpose of review This paper summarizes trends in the research literature about stress and burnout in the lives of people who are the professional carers of people with intellectual disability. The principal time period considered was from 2004 to 2006. Recent findings Studies reviewed here focus on several themes including inequities affecting professional carers of people with intellectual disability and the possible effects of some models of care on inequities. Implications for people with intellectual disability are also considered. Summary The diaspora of people with intellectual disability into the community and their accompanying services found a whole new set of unpredicted and unprecedented challenges. Life in the community has rendered professional carers of people with intellectual disability more clearly vulnerable to stress and burnout for a variety of complex reasons, some identified and others as yet unrecognized. Lack of support and lack of role definition are particular problems. Presence of physical and mental health inequities result in major disparities in community care for people with intellectual disability.

Self-efficacy moderation and mediation roles on BPSD and social support influences on subjective caregiver burden in Chinese spouse caregivers of dementia patients

Background: This study aims to explore moderation and mediation roles of caregiver self-efficacy between subjective caregiver burden and (a) behavioral and psychological symptoms (BPSD) of dementia; and (b) social support. Methods: A cross-sectional study with 137 spouse caregivers of dementia patients was conducted in Shanghai. We collected demographic information for the caregiver–patient dyads, as well as information associated with dementia-related impairments, caregiver social support, caregiver self-efficacy, and SF-36. Results: Multiple regression analysis showed that caregiver self-efficacy was a moderator both between BPSD and subjective caregiver burden, and social support and subjective caregiver burden. Results also showed a partial mediation effect of caregiver self-efficacy on the impact of BPSD on subjective caregiver burden, and a mediation effect of social support on subjective caregiver burden. Caregiver self-efficacy and subjective burden significantly influenced BPSD and social support. Conclusion: Caregiver self-efficacy played an important role in the paths by which the two factors influenced subjective burden. Enhancing caregiver self-efficacy for symptom management (particularly BPSD) can be an essential strategy for determining interventions to support dementia caregivers in China, and possibly in other countries.

Connecting the person with dementia and family : a feasibility study of a telepresence robot

Background Maintenance of communication is important for people with dementia living in long-term care. The purpose of this study was to assess the feasibility of using “Giraff”, a telepresence robot to enhance engagement between family and a person with dementia living in long-term care. Methods A mixed-methods approach involving semi-structured interviews, call records and video observational data was used. Five people with dementia and their family member participated in a discussion via the Giraff robot for a minimum of six times over a six-week period. A feasibility framework was used to assess feasibility and included video analysis of emotional response and engagement. Results Twenty-six calls with an average duration of 23 mins took place. Residents showed a general state of positive emotions across the calls with a high level of engagement and a minimal level of negative emotions. Participants enjoyed the experience and families reported that the Giraff robot offered the opportunity to reduce social isolation. A number of software and hardware challenges were encountered. Conclusions Participants perceived this novel approach to engage families and people with dementia as a feasible option. Participants were observed and also reported to enjoy the experience. The technical challenges identified have been improved in a newer version of the robot. Future research should include a feasibility trial of longer duration, with a larger sample and a cost analysis.

Expanded review criteria : the case of nonpharmacological interventions in dementia

This paper challenges the assumptions underlying many reviews and offers alternative criteria for examining evidence for nonpharmacological interventions. We evaluated 27 reviews examining interventions for persons with dementia as they relate to the issues of selection based on randomized controlled trial (RCT) design. Reviews were described by type of intervention, level of cognitive function, and criteria for inclusion. Of the 27 reviews, 46% required RCTs for inclusion and most had stringent inclusion criteria. This resulted in poor utilization of the literature and low ecological validity. Eliminating most of the available data poses a critical problem to clinical and research development. Studies meeting strict methodological criteria may not generalize to the greater population or may exclude sub-populations and interventions. Limitations of double-blind RCTs and potential design solutions are set forth based on appropriate populations, problems, interventions, and settings characteristics.

"The red dress or the blue?" How do staff perceive that they support decision making for people with dementia living in residential aged care facilities?

Respect for a person's right to make choices and participate in decision making is generally seen as central to quality of life and well-being. When a person moves into a residential aged care facility (RACF), however, decision making becomes more complicated, particularly if the person has a diagnosis of dementia. Little is known about how staff in RACFs perceive that they support decision making for people with dementia within their everyday practice, and this article seeks to address this knowledge gap. The article reports on the findings of a qualitative study conducted in the states of Victoria and Queensland, Australia with 80 direct care staff members. Findings revealed that the participants utilized a number of strategies in their intention to support decision making for people with dementia, and had an overall perception that "a little effort goes a long way."

Insomnia : A Self Help Handbook

This book is a practical and useful tool for getting your sleep back on track. Even if you have suffered from insomnia for many years, this book contains simple, easy to learn strategies to manage your sleep loss through evidence-based techniques such as cognitive therapy and stimulus control. Dr. Sacre will guide you through these approaches and explain how they work and why they are recommended above other approaches. There is a chapter on special populations that tells you what to do if you are a shift worker, long distance traveller, parent, older adult, woman (including pregnancy and menopause) or an elite athlete. If you want to enjoy natural, healthy and satisfying sleep again, this handbook gives you all the tools you need to achieve it. You only need to have the motivation and discipline to apply the strategies and stick to them over time. This handbook first explains what normal sleep is all about and challenges some myths about sleep and insomnia. Then you will be guided through a thorough sleep assessment. Insomnia is then described in detail including different types of insomnia and the kinds of factors that contribute to sleep loss. Through the following chapters, you will be shown step-by-step what to do to bring about change in your sleeping patterns and habits, through addressing the factors that perpetuate poor sleep. These factors mainly revolve around unhelpful thinking, compensatory behaviors, poor sleep hygiene and environmental influences. These are all things that are within your control and Dr. Sacre will show you how. Dr. Sacre has worked in the fields of sleep health, mental health and addictive disorders for 25 years and over that time, she has encountered hundreds of people who have struggled with insomnia and sleep loss due to other causes. She currently heads the Therapy Programs department at Belmont Private Hospital in Brisbane, Australia, where there is an emphasis on Cognitive Behavioral Therapy, including a Cognitive Behavioral Therapy for Insomnia (CBT-i) program. A psychologist and nurse, Dr. Sacre is a long-time member of the Australasian Sleep Association and the Australian Psychological Society. She has conducted research into the function of dreaming, online sleep surveys and the usefulness of sleep self-help guides for students, older adults and carers of people with dementia. She has also published on diverse topics, including the management of nightmares in war veterans. She is an Adjunct Associate Professor at Queensland University of Technology, Brisbane and lectures professionals, including psychologists, school counselors and psychiatrists, on sleep disorders and their management as well as Cognitive Behavioral Therapy.

Nutritional challenges for the family caregiver and person with dementia dyad

ABSTRACT Background: The majority of people with dementia live at home until quite late in the disease trajectory, supported by family caregivers who typically take increasing responsibility for providing nutrition. Caregiving is highly stressful and thus both dyad partners are at risk of nutritional issues. Objective: This study evaluated the nutritional status of both dyad members and the associations between these. Design Descriptive, correlational Setting Community Participants 26 dyads of persons with dementia and caregivers Measurements: The nutritional status of each dyad member was evaluated at home using a comprehensive battery of measures including the Mini-Nutritional Assessment, Corrected Arm Muscle Area and a 3-day food diary. Stage of dementia and functional eating capacity was measured for the person with dementia. Caregivers completed a brief burden scale. Results: Of those with dementia (n = 26), a large proportion had nutritional issues (one was malnourished and another 16 were at risk). Six of the caregivers were at risk of malnutrition. In addition, fifteen of the people with dementia did not meet their recommended daily energy requirements. A moderate and significant positive correlation between functional eating skills and nutritional status (MNA score) among participants with dementia was found (r =.523, n = 26, p.006). Conclusion: These findings suggest that a dyadic perspective of nutritional status provides important insights into risk in this vulnerable group. Specifically, monitoring of the functional eating independence skills of the person with dementia is critical, along with assisting caregivers to be aware of their own eating patterns and intake.

Physical and functional implications of aquatic exercise for nursing home residents with dementia

Exercise has reported benefits for those with dementia. In the current study we investigated the feasibility of delivery and the physical and functional benefits of an innovative aquatic exercise program for adults with moderate to severe dementia living in a nursing home aged care facility. Ten adults (88.4 years, inter quartile range 12.3) participated twice weekly for 12 weeks. Anthropometric and grip strength data, and measures of physical function and balance were collected at baseline and post-intervention. Feasibility was assessed by attendance, participation, enjoyment and recruitment. Following exercise, participant's left hand grip strength had improved significantly (p = .017). Small to moderate effect sizes were observed for other measures. A number of delivery challenges emerged, but participant enjoyment, benefits and attendance suggest feasibility. Aquatic exercise shows promise as an intervention among those with dementia who live in a nursing home aged care facility. Greater program investigation is warranted.

The clinical utility of the Cornell Scale for Depression in Dementia as a routine assessment in nursing homes

Objective To examine the clinical utility of the Cornell Scale for Depression in Dementia (CSDD) in nursing homes. Setting 14 nursing homes in Sydney and Brisbane, Australia. Participants 92 residents with a mean age of 85 years. Measurements Consenting residents were assessed by care staff for depression using the CSDD as part of their routine assessment. Specialist clinicians conducted assessment of depression using the Semi-structured Clinical Diagnostic Interview for DSM-IV-TR Axis I Disorders for residents without dementia or the Provisional Diagnostic Criteria for Depression in Alzheimer Disease for residents with dementia to establish expert clinical diagnoses of depression. The diagnostic performance of the staff completed CSDD was analyzed against expert diagnosis using receiver operating characteristic (ROC) curves. Results The CSDD showed low diagnostic accuracy, with areas under the ROC curve being 0.69, 0.68 and 0.70 for the total sample, residents with dementia and residents without dementia, respectively. At the standard CSDD cutoff score, the sensitivity and specificity were 71% and 59% for the total sample, 69% and 57% for residents with dementia, and 75% and 61% for residents without dementia. The Youden index (for optimizing cut-points) suggested different depression cutoff scores for residents with and without dementia. Conclusion When administered by nursing home staff the clinical utility of the CSDD is highly questionable in identifying depression. The complexity of the scale, the time required for collecting relevant information, and staff skills and knowledge of assessing depression in older people must be considered when using the CSDD in nursing homes.

Development of an education program to improve care of patients with dementia in an acute care setting

As the population ages, the number of people with dementia in acute care environments is projected to increase rapidly. However, many acute care nurses have undertaken little or no dementia training, potentially leading to reduced quality of care for these patients. This article details the development and delivery of a tailored education program to improve the quality of care of people with dementia in a large, urban hospital in Australia. Designed specifically for the existing context, environment and knowledge levels, the program was developed from multiple inputs, including: expert opinion, literature on workplace and dementia care training, and feedback from participants. The program was delivered to acute care nurses and allied health staff within an outcome based, microteaching model. The broader applicability of the development and delivery techniques used in this program is also discussed.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia

Objectives: To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. Method: A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. Results: The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. Discussion: This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs.