What are the Challenges and Resilience Resources Identified by Informal Carers During the First UK COVID-19 Lockdown? A Longitudinal Qualitative Study Using Naturalistic Data.

COVID-19 has posed serious challenges for informal carers living in the UK. This article examines some of the specific challenges facing carers and the resources they used to manage them throughout the first UK lockdown. We used a framework approach to analyse naturalistic, longitudinal data from 30 carers taking part in 96 of Mobilise's daily Virtual Cuppas between March and July 2020. We found that lack of information and social restrictions cumulatively impacted carers' sense of certainty, control and motivation. This took an emotional toll on the carers, leading to exhaustion and burden. However, carers quickly established new routines and used humour and self-care to actively manage their wellbeing. Carers received support but also provided it to those in need, including fellow members of the caregiving community, supporting an ecological approach to carer resilience. Our findings may be used to anticipate challenges and promote protective resilience resources in future lockdowns.

Assistive technology and telecare to maintain independent living at home for people with dementia: the ATTILA RCT.

BACKGROUND: Assistive technology and telecare have been promoted to manage the risks associated with independent living for people with dementia, but there is limited evidence of their effectiveness. OBJECTIVES: This trial aimed to establish whether or not assistive technology and telecare assessments and interventions extend the time that people with dementia can continue to live independently at home and whether or not they are cost-effective. Caregiver burden, the quality of life of caregivers and of people with dementia and whether or not assistive technology and telecare reduce safety risks were also investigated. DESIGN: This was a pragmatic, randomised controlled trial. Blinding was not undertaken as it was not feasible to do so. All consenting participants were included in an intention-to-treat analysis. SETTING: This trial was set in 12 councils in England with adult social services responsibilities. PARTICIPANTS: Participants were people with dementia living in the community who had an identified need that might benefit from assistive technology and telecare. INTERVENTIONS: Participants were randomly assigned to receive either assistive technology and telecare recommended by a health or social care professional to meet their assessed needs (a full assistive technology and telecare package) or a pendant alarm, non-monitored smoke and carbon monoxide detectors and a key safe (a basic assistive technology and telecare package). MAIN OUTCOME MEASURES: The primary outcomes were time to admission to care and cost-effectiveness. Secondary outcomes assessed caregivers using the 10-item Center for Epidemiological Studies Depression Scale, the State-Trait Anxiety Inventory 6-item scale and the Zarit Burden Interview. RESULTS: Of 495 participants, 248 were randomised to receive full assistive technology and telecare and 247 received the limited control. Comparing the assistive technology and telecare group with the control group, the hazard ratio for institutionalisation was 0.76 (95% confidence interval 0.58 to 1.01; p = 0.054). After adjusting for an imbalance in the baseline activities of daily living score between trial arms, the hazard ratio was 0.84 (95% confidence interval 0.63 to 1.12; p = 0.20). At 104 weeks, there were no significant differences between groups in health and social care resource use costs (intervention group - control group difference: mean -£909, 95% confidence interval -£5336 to £3345) or in societal costs (intervention group - control group difference: mean -£3545; 95% confidence interval -£13,914 to £6581). At 104 weeks, based on quality-adjusted life-years derived from the participant-rated EuroQol-5 Dimensions questionnaire, the intervention group had 0.105 (95% confidence interval -0.204 to -0.007) fewer quality-adjusted life-years than the control group. The number of quality-adjusted life-years derived from the proxy-rated EuroQol-5 Dimensions questionnaire did not differ between groups. Caregiver outcomes did not differ between groups over 24 weeks. LIMITATIONS: Compliance with the assigned trial arm was variable, as was the quality of assistive technology and telecare needs assessments. Attrition from assessments led to data loss additional to that attributable to care home admission and censoring events. CONCLUSIONS: A full package of assistive technology and telecare did not increase the length of time that participants with dementia remained in the community, and nor did it decrease caregiver burden, depression or anxiety, relative to a basic package of assistive technology and telecare. Use of the full assistive technology and telecare package did not increase participants' health and social care or societal costs. Quality-adjusted life-years based on participants' EuroQol-5 Dimensions questionnaire responses were reduced in the intervention group compared with the control group; groups did not differ in the number of quality-adjusted life-years based on the proxy-rated EuroQol-5 Dimensions questionnaire. FUTURE WORK: Future work could examine whether or not improved assessment that is more personalised to an individual is beneficial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN86537017. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 19. See the NIHR Journals Library website for further project information.

Many people with dementia living at home are recommended assistive technology and telecare to help them remain living safely and independently in the community. These devices are meant to assist and support activities such as taking medication or cooking, or to raise an alert when there is an issue, such as a fire; however, there is currently little evidence to support such claims. This trial investigated whether or not assistive technology and telecare could delay people moving into residential care and keep them any safer than alternatives, and whether or not they were cost-effective. We recruited 495 people with dementia and their unpaid caregivers, who were randomly assigned to receive either a package of assistive technology and telecare recommended by a health or social care professional or alternative support involving only basic assistive technology and telecare. We monitored the residential status, the use of health-care services and the health and well-being of participants with dementia and their caregivers over a 2-year period. Researchers also spent time with participants to see how they were living with the technology. The trial found no difference in the time that people with dementia with full assistive technology and telecare remained at home, nor any reduction in the number of safety incidents, compared with the participants who received basic assistive technology and telecare only. Full assistive technology and telecare did not increase health and social care costs. It did not improve the well-being of people with dementia or that of their caregivers. People with dementia who had full assistive technology and telecare rated their quality of life poorer than those with basic assistive technology and telecare did, but their caregivers rated their quality of life as about the same as caregivers of people with basic assistive technology and telecare. The technology sometimes averted crises but also disrupted people's everyday lives. These results suggest that assistive technology and telecare for people with dementia provided in real-world conditions may not be as beneficial as previously claimed. The way that assistive technology and telecare services are organised bears further investigation to see how these services could be improved.

Placing assistive technology and telecare in everyday practices of people with dementia and their caregivers: findings from an embedded ethnography of a national dementia trial.

BACKGROUND: Policy makers and care providers see assistive technology and telecare as potential products to support people with dementia to live independently in their homes and communities. Previous research rarely examined how people with dementia and their caregivers actually use such technology. The study examined how and why people living with dementia and their caregivers used assistive technology and telecare in their own homes. METHODS: This study used an ethnographic design embedded within the NIHR-funded Assistive Technology and Telecare to maintain Independent Living At home for people with dementia (ATTILA) randomised controlled trial. We collected 208 h of observational data on situated practices of ten people with dementia and their ten caregivers. We used this data to construct extended cases to explain how technologies supported people with dementia in home and community settings. RESULTS: We identified three themes: placing technology in care, which illustrates how people with dementia and caregivers 'fit' technology into their homes and routines; replacing care with technology, which shows how caregivers replaced normal care practices with ones mediated through technologies; and technology displacing care and everyday life, which highlights how technologies disrupted the everyday lives of people with dementia. DISCUSSION: This study exemplifies unintended and unanticipated consequences for assistive technology and telecare uptake in 'real world' community-based dementia care. It underlines the need to identify and map the context of technological provision over time within the changing lives of people with dementia and their caregivers.