Managing behavioural and psychological symptoms in community dwelling older people with dementia:1. A systematic review of the effectiveness of interventions

© 2018 The Author(s) This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence CC BY 4.0 (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.Background: Two-thirds of people living with dementia live at home in the UK and many experience distressing behavioural and psychological symptoms. This systematic review evaluates the effectiveness of non-pharmacological interventions for behavioural and psychological symptoms among community-dwelling people living with dementia. Methods: This two-stage review undertook an initial mapping of the literature followed by a systematic review of relevant randomised controlled trials. We searched electronic databases for pertinent studies reporting outcomes from interventions from January 2000 to March 2015 and updated searches in October 2016. We included studies that considered behavioural and psychological symptom management for older people living with dementia who live at home and excluded studies conducted in long-term care settings. This paper presents findings from a narrative synthesis of 48 randomised controlled trials evaluating interventions for people living with dementia alone, family carers alone and patient-carer dyads. Results: We retrieved 17,871 de-duplicated records and screened them for potential inclusion. Evidence from 48 randomised controlled trials suggests that family carer training and educational programmes that target problem behaviours and potential triggers can improve outcomes. Nurses and occupational therapists appear to help people with dementia with behavioural and psychological symptoms, but professional comparisons are lacking and there is no shared language about or understanding of behavioural and psychological symptoms amongst professionals, or between professionals and family carers. Conclusions: Future research should focus on the effectiveness of components of multi-faceted programmes and their cost effectiveness and include qualitative data to better target interventions for behavioural and psychological symptoms. It is important to consider family carer readiness to use non-pharmacological strategies and to develop a shared language about the inherent needs and communications of behavioural and psychological symptoms.Peer reviewe

Information and communication technology solutions for outdoor navigation in dementia

INTRODUCTION: Information and communication technology (ICT) is potentially mature enough to empower outdoor and social activities in dementia. However, actual ICT-based devices have limited functionality and impact, mainly limited to safety. What is an ideal operational framework to enhance this field to support outdoor and social activities? METHODS: Review of literature and cross-disciplinary expert discussion. RESULTS: A situation-aware ICT requires a flexible fine-tuning by stakeholders of system usability and complexity of function, and of user safety and autonomy. It should operate by artificial intelligence/machine learning and should reflect harmonized stakeholder values, social context, and user residual cognitive functions. ICT services should be proposed at the prodromal stage of dementia and should be carefully validated within the life space of users in terms of quality of life, social activities, and costs. DISCUSSION: The operational framework has the potential to produce ICT and services with high clinical impact but requires substantial investment

IDENTITY AND CAREGIVER BURDEN IN DEMENTIA: AN EVALUATION OF TELEHEALTH REMINISCENCE FOR INFORMAL CAREGIVERS

In the literature, informal caregivers’ perception of identity change/loss in their care-partner with dementia is anecdotally linked to loss of intimacy, while decreased intimacy and quality of the caregiver/partner relationship is associated with greater caregiver burden. A connection between perceived identity and burden is further implied by the potential benefit of reminiscence therapy for caregivers, and literature on reminiscence. Despite demonstrated benefit for persons with dementia, support for reminiscence with caregivers has been equivocal, though it is unclear as to why. The dissertation’s main objectives were therefore to 1) quantitatively examine support for a theoretical model of perceived identity change, intimacy/quality of relationship, and caregiver burden; and 2) using this model as a theoretical guide, evaluate efficacy of a basic reminiscence activity. Rural dwelling caregivers are at particular risk for negative outcomes due to limited service access, and interventions unrestricted by geographic location are needed. Thus, the reminiscence activity was delivered via both in-person and Telehealth videoconferencing formats, and a third project objective was to examine Telehealth feasibility for both service delivery and research purposes. Study 1 revealed caregivers’ perceived identity change in their care-partner with dementia significantly predicted caregiver burden. A mediational model was supported in which caregivers’ perception of identity change of the person with dementia reduced perceived quality of their relationship, which in turn increases caregiver burden. Study 2 involved random assignment of caregivers to respective in-person or Telehealth, control, or Reminiscence groups. Contrary to predictions based on Study 1’s model, no effect of the Reminiscence activity on identity change, intimacy, quality of relationship, or burden was observed despite most caregivers reporting a positive experience. Study 3 demonstrated good feasibility for Telehealth delivery, including considerable travel savings and satisfaction with the medium. No differences in acceptability in-person delivery were found. Identifying and understanding factors affecting caregiver burden is crucial towards development of effective intervention. Perceived identity change appears to be one possible factor in multifactorial prediction of caregiver burden, but reminiscence demonstrated no effect on burden. Telehealth proved to be a practical and acceptable format for rural service delivery and data collection. Limitations and implications of the project results are discussed

Implementing an Online, Integrative, Multi-Component, Group-Based Cognitive Behavior Therapy (CBT) for the Reduction of Caregiver Burden in Primary Familial Caregivers of Persons with Dementia: A Preliminary Test of Feasibility

The purpose of this study was to examine the preliminary feasibility of an online, manualized, group-based, multi-component, cognitive behavioral therapy (CBT) treatment approach for the reduction of caregiver burden among family caregivers of persons with dementia. This study had five primary hypotheses: (1) the recruitment plan, as outlined within this study, would yield the target number of participants within a 12-month period; (2) the proposed group therapy protocol would produce a positive therapeutic climate, as operationalized by increased levels of perceived social support, perceived group cohesion, positive therapeutic alliance, and positive engagement; (3) this study would maintain adequate participant retention, as operationalized by at least 80% of participants enrolled completing the entire course of treatment; (4) the online CBT group therapy would produce positive levels of satisfaction towards the therapy among group members; and (5) the proposed protocol would not create significant levels of perceived burdensomeness among participants. An additional exploratory hypothesis in this study was that the manualized protocol would produce significant reductions in overall levels of caregiver burden, anxious symptoms, depressive symptoms, and role captivity among participants. Dementia is a growing phenomenon around the world, and more families are choosing to provide informal at-home care for their loved-ones with dementia. While this removes financial burden and strain from institutions, it places a significant amount of stress, burden, and strain (physical, psychological, and financial) on the family caregivers. Caregiver burden, also referred to as caregiver burnout, is defined as the overall impact of the physical, psychological, social, and financial demands of caregiving. Caregiver burden is often associated with increased rates of depression, anxiety, psychotropic drug use, somatic disorders, and physical health concerns. With family members becoming primary caregivers to persons with dementia at increasing rates, so too are the experiences of caregiver burden. While interventions do exist for caregivers experiencing high levels of burden, many of these interventions are either (a) not efficacious, (b) not cost-effective, or (c) not flexible enough to work within the various constraints of caregiving. It is clear that this population is in need of an efficacious and cost-effective treatment approach for the reduction of caregiver burden. Results from this study were ultimately inconclusive for supporting feasibility of the research and treatment protocol as a whole; however, certain aspects of the data did suggest some potential areas for preliminary feasibility such as clinically significant improvement in group cohesion and caregiver burden scores across treatment time. It is strongly recommended that further studies continue to examine the preliminary feasibility of this treatment protocol and to explore areas in which accessibility to this intervention plan may be improved in order to better serve caregivers of persons with dementia

Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

BACKGROUND: In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers. OBJECTIVE: The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants' social networks. The study's secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers. METHODS: We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants' Facebook News Feed, allowing participants' Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers. RESULTS: In total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%). CONCLUSIONS: We found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers' self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD

Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Using Telehealth to Support Informal Caregivers of Elders with Urinary Incontinence: A Pilot/Feasibility Study

Urinary Incontinence (UI) is a prevalent and burdensome condition affecting care-dependent, community-dwelling elders (CRs) and their informal caregivers (CGs). Although treatable, UI remains inadequately managed resulting in negative medical, physical, psychosocial and economic impacts. A quasi-experimental, pre-posttest design was used to explore the feasibility and acceptability of a technology-facilitated behavioral intervention designed to enhance the home environment of CRs with UI and strengthen informal CG self-efficacy. CGs received a 6-week evidence-based, prompted voiding and educational program delivered via tablet-personal computer. CGs also received a supportive component in the form of weekly telephone calls from a UI nurse expert. Care-recipient (% change in wetness) and CG outcomes (technology usage, perceived ease of use, UI knowledge, self-efficacy, burden) were measured at 3-weeks and 6-weeks and analyzed descriptively. Qualitative feedback regarding CG satisfaction and perceptions of the intervention were obtained at the conclusion of the study. The development and implementation of the intervention were feasible. The major challenge to feasibility was the recruitment of eligible participants. CGs were adherent to technology usage, however adherence to prompted voiding was inconsistent. CGs demonstrated slight increases in UI-related self-efficacy, UI knowledge, and decreases in UI-related bother. CRs demonstrated a mean 62.53% reduction in wet checks. CGs consistently rated the intervention extremely high and found access to a UI expert beneficial. These preliminary findings suggest that the use of telehealth systems to deliver an evidence-based, UI intervention may be a feasible and acceptable way to improve CG confidence and knowledge in UI management and reduce CR wetness

Managing behavioural and psychological symptoms in people with dementia and their carers living at home/community- A mixed methods evidence synthesis for non-pharmacological interventions

Plain English Summary Background Two-thirds of people with dementia live at home and many experience distressing symptoms such as aggression, wandering, agitation, emotional problems, known as behavioural and psychological symptoms of dementia (BPSD), which result in poor outcomes. We aimed to combine evidence from various sources to find out what types of non-drug based interventions might be helpful for people with dementia and their carers. We also conducted focus groups (FG) and interviews with service users and providers around managing BPSD

Effectiveness of virtual Cognitive Stimulation Therapy (vCST)

Overview The three-part thesis explored the effectiveness of Cognitive Stimulation Therapy (CST) and its adaption to virtual implementation. The feasibility of the virtual CST and its impact on cognition were investigated. Part One: Systematic Review – A systematic review and meta-analysis was conducted to investigate the effectiveness of Cognitive Stimulation Therapy and its clinical implications. Only studies that adopted Spector et al 2001., and Spector et al., 2003 CST framework, and randomised controlled trials were included in the synthesis. Part Two: Empirical Paper – The feasibility of vCST and its impact on cognition were investigated in this study. Outcome measures on cognition were used to demonstrate any effectiveness found after the implementation of vCST. This project was a joint project with Nur Diyanah Abdul Wahab (DClinPsy, 2022). The distribution of work is summarised in Appendix A. Part Three: Critical Appraisal – The critical appraisal adopted a reflective standpoint to discuss the research process, including the feasibility of the study, study design, data analysis and personal and research challenges faced