Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future.

OBJECTIVES: Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer. METHODS: Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of - and barriers to - using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education). RESULTS: Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes. CONCLUSIONS: Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances.

Meeting the Practice Challenges of COVID-19: MSW Students' Perceptions of E-Therapy and the Therapeutic Alliance.

The COVID-19 pandemic prompted a radical shift in social work practice. Overnight, social work intervention models provided in-person gave way to the utilization of Information and Communication Technologies to facilitate direct practice in virtual environments (e-therapy). Social work's slow acceptance of e-therapy prior to the pandemic resulted in a lack of training for many social work practitioners and MSW student interns, who were required to make rapid transitions to using and operating in online environments. It appears likely that e-therapy will continue after the COVID-19 pandemic subsides, so integrating education about effective e-therapy techniques into social work curricula seems like a logical next step. A social worker's ability to establish the therapeutic alliance, which is at the heart of all helping relationships, will be central to this curricula. Understanding social work students' perceptions of e-therapy and the therapeutic alliance can help shape the development of this new curriculum. Using internal student email, students at two Research I universities were invited to participate in a fully online anonymous survey dealing with attitudes towards e-therapy and the therapeutic alliance. Surveys were conducted in 2018 and April-May 2020. Survey questions were based on the only prior comprehensive study of student attitudes towards e-therapy (Finn in J Soc Work Educ 38(3), 403-419. 10.1080/10437797.2002.10779107, 2002). Study results indicate that students have e-therapy experience, believe that a practitioner can build a good therapeutic alliance, and think that some form of e-therapy will continue after the pandemic. These results confirm that further exploration about the inclusion of e-therapy education and its efficacy in social work curricula requires urgent attention.

Effect of transitional care stroke case management interventions on caregiver outcomes: the MISTT randomized trial.

This study reports on outcomes for 169 caregivers enrolled in the Michigan Stroke Transitions Trial (MISTT), an RCT of social work case management for stroke patients returning home. A mixed-model approach examined the mean change from 7- to 90-days post-discharge with group-by-time interactions for differences between treatment groups. Caregivers reported few life changes or depressive symptoms from caregiving. There was no significant change over time or treatment effects. Negative aspects of stroke caregiving may take longer to develop. Focused caregiver assessment at discharge and a better understanding of how caregiving develops over time may improve the type and timing of support.

Unmet Needs of US Acute Stroke Survivors Enrolled in a Transitional Care Intervention Trial.

BACKGROUND: Needs of patients that go unmet after a stroke can compromise the speed and extent of recovery. While unmet needs in long-term survivors has been studied, less is known about the unmet needs of acute stroke survivors. We examine unmet needs in the immediate postdischarge period among 160 participants in the (blinded for review) a transitional care intervention conducted in (blinded for review [1 US state]) during 2016 and 2017. METHODS: Bivariate and multivariate analyses using Poisson models were used to examine the relationship between total number of unmet needs and demographics, stroke type and severity, stroke effects, and stroke risk factors. RESULTS: The mean number of unmet needs was 4.55; number of unmet needs ranged from 2 to9; all participants had some unmet need. The most common unmet needs were stroke education (73.8%), financial (33.8%), and health-related (29.4%). In the final multivariate model income and education were inversely associated with number of unmet needs. As total number of stroke effects increased, so did number of unmet needs. Demographic variables (age, gender, and race), stroke risk factors, stroke type, and stroke severity were not statistically significantly associated with the number of unmet needs. CONCLUSIONS: These results identify that in the acute post discharge period stroke survivors have many unmet needs that range from physical to psychosocial. Targeting interventions to those with the potential for greater numbers of unmet needs might be a salient clinical approach to improving stroke recovery and rehabilitation.

Michigan Stroke Transitions Trial.

BACKGROUND: To test whether access to home-based social worker-led case management (SWCM) program or SWCM program combined with a website providing stroke-related information improves patient-reported outcomes in patients with stroke, relative to usual care. METHODS AND RESULTS: The MISTT (Michigan Stroke Transitions Trial), an open (unblinded) 3-group parallel-design clinical trial, randomized 265 acute patients with stroke to 3 treatment groups: Usual Care (group-1), SWCM (group-2), and SWCM+MISTT website (group-3). Patients were discharged directly home or returned home within 4 weeks of discharge to a rehabilitation facility. The SWCM program provided in-home and phone-based case management services. The website provided patient-orientated information covering stroke education, prevention, recovery, and community resources. Both interventions were provided for up to 90 days. Outcomes data were collected by telephone at 7 and 90 days. Primary patient-reported outcomes included Patient-Reported Outcomes Measurement Information System Global-10 Quality-of-Life (Physical and Mental Health subscales) and the Patient Activation Measure. Treatment efficacy was determined by comparing the change in mean response (90 days minus 7 days) between the 3 treatment groups using a group-by-time interaction. Subjects were aged 66 years on average, 49% were female, 21% nonwhite, and 86% had ischemic stroke. There were statistically significant changes in Patient-Reported Outcomes Measurement Information System Physical Health ( P=0.003) and Patient Activation Measure ( P=0.042), but not Patient-Reported Outcomes Measurement Information System Mental Health ( P=0.56). The mean change in Patient-Reported Outcomes Measurement Information System Physical Health scores for group-3 (SWCM+MISTT Website) was significantly higher than both group-2 (SWCM; difference, +2.4; 95% CI, 0.46-4.34; P=0.02) and group-1 (usual care; difference, +3.4; 95% CI, 1.41-5.33; P<0.001). The mean change in Patient Activation Measure scores for group-3 was significantly higher than group-2 (+6.7; 95% CI, 1.26-12.08; P=0.02) and marginally higher than group-1 (+5.0; 95% CI, -0.47 to 10.52; P=0.07). CONCLUSIONS: An intervention that combined SWCM with access to online stroke-related information produced greater gains in patient-reported physical health and activation compared with usual care or case management alone. There was no intervention effect on mental health. CLINICAL TRIAL REGISTRATION: URL: https://www.clinicaltrials.gov . Unique identifier: NCT02653170.

Technology-based tools and services for people with dementia and carers: Mapping technology onto the dementia care pathway.

The extent to which technology may be able to support people with dementia and their carers along the care pathway and in different care settings is of interest to policy makers and governments. In this paper we provide an overview of the role of technology in dementia care, treatment and support by mapping existing technologies - by function, target user and disease progression. Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings. The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention. The second largest number of interventions aims to enhance people's memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers. While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely on everyday technologies re-purposed to meet their needs.

Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol.

BACKGROUND: For some stroke patients and caregivers, navigating the transition between hospital discharge and returning home is associated with substantial psychosocial and health-related challenges. Currently, no evidence-based standard of care exists that addresses the concerns of stroke patients and caregivers during the transition period. Objectives of the Michigan Stroke Transitions Trial (MISTT) are to test the impact of a social worker home-based case management program, as well as an online information and support resource, on patient and caregiver outcomes after returning home. METHODS: The Michigan Stroke Transitions Trial is a randomized, pragmatic, open (un-blinded), 3-group parallel designed superiority trial conducted in 3 Michigan hospitals. Eligible participants are adult acute stroke patients discharged home directly or within 4 weeks of being discharged to a rehabilitation facility. The patient's primary caregiver is also invited to participate. Patients are randomized on the day they return home using a randomized block design. Consented patients discharged to a rehabilitation facility who do not go home within 4 weeks are dropped from the study. The 2 study interventions begin within a week of returning home and conclude 3 months later. The 3-group design compares usual care to either a home-based social worker stroke case management (SWSCM) program, or a combination of the SWSCM program plus access to an online information and support resource (MISTT website). Outcomes data are collected at 7-days and 90-days by trained telephone interviewers. Primary patient outcomes include the PROMIS global 10 score (a generic Quality of Life scale), and the Patient Activation Measure (PAM). Caregiver outcomes include the Bakas Caregiving Outcomes Scale. Final analysis will be based on 214 randomized acute stroke patients. To accommodate subjects excluded due to prolonged rehabilitation stays, as well as those lost-to-follow-up, up to 315 patients will be consented. DISCUSSION: The MISTT study will determine if a home-based case management program designed around the needs and preferences of stroke patients and caregivers, alone or in combination with a patient-centered online information and support resource can improve stroke survivor and caregiver outcomes 3 months after returning home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02653170 (Protocol ID: 135457). Registered April 9, 2015.

Effects of digital engagement on the quality of life of older people.

It is often asserted that older people's quality of life (QOL) is improved when they adopt information and communication technology (ICT) such as the Internet, mobile phones and computers. Similar assumptions are made about older people's use of ICT-based care such as telecare and telehealth. To examine the evidence around these claims, we conducted a scoping review of the academic and grey literature, coving the period between January 2007 and August 2014. A framework analysis approach, based on six domains of QOL derived from the ASCOT and WHOQOL models, was adopted to deductively code and analyse relevant literature. The review revealed mixed results. Older people's use of ICT in both mainstream and care contexts has been shown to have both positive and negative impacts on several aspects of QOL. Studies which have rigorously assessed the impact of older people's use of ICT on their QOL mostly demonstrate little effect. A number of qualitative studies have reported on the positive effects for older people who use ICT such as email or Skype to keep in touch with family and friends. Overall, the review unearthed several inconsistencies around the effects of older people's ICT use on their QOL, suggesting that implicit agreement is needed on the best research methods and instrumentation to adequately describe older people's experiences in today's digital age. Moreover, the available evidence does not consider the large number of older people who do not use ICT and how non-use affects QOL.