Lessons learned from the impact of Covid-19 on the work of disability support organisations that support employers of social care personal assistants in England.

Social care Personal Assistants (PAs) are directly employed by individuals to assist with activities of daily living such as help or support with personal care, shopping, household tasks and community participation. This option is encouraged by UK public funding. In England, disabled people's support organisations initially offered assistance with such arrangements, although numbers doing this have declined. The Covid-19 pandemic provided the opportunity to ask those remaining organisations providing support for PA employers about their activities during this time and the questions being posed to them by PA employers. This paper reports data from 15 interviews undertaken March-July 2021 with disability support organisation representatives. We identified one overarching theme 'Working to prevent and challenge marginalisation of PA employers', with three related subthemes: (1) Advocating for the voice of a forgotten group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Participant accounts focused on representing the needs of disabled people to the authorities and providing concise, timely and accurate information to PA employers, particularly around the use of public funds during Covid-19. Remote working amplified the digital-divide, resulting in these organisations working hard to ensure PA employers received important information about their support options. Befriending services and Covid-hubs were established by some organisations to reduce isolation and risks of poor mental health amongst PA employers. Many of the challenges facing PA employers existed pre-pandemic but were perceived to have been heightened during it, reflecting the value of and need for the work of these local support organisations. Our findings suggest areas where effective contingency planning drawn from closer collaboration between disability support organisations and central and local government might usefully be focussed. The potential for specific services or organisations to be commissioned to provide such support is discussed.

Adult safeguarding managers' understandings of self-neglect and hoarding.

Self-neglect and hoarding are behaviours that are hard to define, measure and address. They are more prevalent among older people because of bio-psycho-social factors, which may be exacerbated by advancing age. This paper aims to further understandings of self-neglect and hoarding in England's Care Act 2014 context, drawing on a study involving qualitative interviews with local authority adult safeguarding managers who play an important role in determining interventions with individuals who self-neglect and/or hoard. Online interviews were conducted with adult safeguarding leads and managers from 31 English local authorities in 2021. Interview data were subject to thematic analysis. This paper explores the commonalities and differences in adult safeguarding managers' understandings of the causes and consequences of self-neglect and/or hoarding among older people, which are likely to have tangible impacts on service provision in their local authority, and influencing of wider changes to policies and procedures. Most participants understood these phenomena as caused by a range of bio-psycho-social factors, including chronic physical conditions, bereavement, isolation. A minority took a more clinical or psycho-medical perspective, focusing on mental ill-health, or referred to the social construction of norms of cleanliness and tidiness. Whatever their understanding, by the time such behaviours are brought to the attention of safeguarding professionals a crisis response may be all that is offered. The implications of the findings are that other agencies should be encouraged to provide more early help to older people at risk of self-neglect and/or of developing harmful hoarding behaviours, and that sustained engagement with those affected may help to understand some of the causes of these behaviours to enable effective support or practice interventions.

Personal Assistants' role in infection prevention and control: Their experiences during the Covid-19 pandemic.

Personal Assistants (PA) or client-hired workers are directly employed by people needing care and support, often making use of government funding. In the context of Covid-19, questions emerged about how this workforce is supported to practice safely. This paper reports PAs' understanding and views of infection control during the early months of the Covid-19 pandemic in England. Telephone interviews were undertaken with 41 PAs between 16th April and 21st May 2020. PAs were recruited from a sample that had participated in a previous study in 2014-16. Interview questions focused on changes arising from the pandemic. Data were transcribed and analysed using Framework analysis. This paper focuses on PAs' perceptions of their role and responsibilities in preventing and managing infection. Arising themes were identified about barriers and facilitators affecting infection control in five areas: accessing information, social isolation, handwashing, hygiene, personal protective equipment and potential attitude to vaccines. Infection prevention and control are under-researched in the home care sector generally and efforts are needed to develop knowledge of how to manage infection risks in home settings by non-clinically trained staff such as PAs and how to engage home care users with these efforts, especially when they are the direct employers.

Experiences of adult social work addressing self-neglect during the Covid-19 pandemic.

Summary: Internationally there has been much interest in the impact of the COVID-19 pandemic on the care and support of older people including those with needs arising from self-neglect and/or hoarding. During the pandemic English local authorities' legal duties remained to respond to concerns about harm about people with care and support needs living in the community. This paper reports interviews with 44 participants working for adult safeguarding/adult protective services (APS) in 31 local authorities recruited from all English regions. Interviews took place online in November-December 2020 as the pandemic's second UK wave was emerging. Analytic induction methods were used to develop themes. Findings: Participants reported some of the variations in referrals to their services with more contact being received from community sources concerned about their neighbours' welfare. Participants provided accounts of the local organisation of adult safeguarding services during the pandemic, including in some areas the potential for offering early help to older people at risk of harm from self-neglect or hoarding behaviour. Online inter-agency meetings were positively received but were acknowledged to potentially exclude some older people. Applications: This article reports observations from adult safeguarding practitioners about their services which may be of interest internationally and in renewing services that can sustain public interest in the welfare of their older citizens and in developing early help. The findings reflect those from children's services where online meetings are also predicted to enhance professional communications post-pandemic but similarly need to ensure effective engagement with service users and their families.

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.

The effectiveness and cost-effectiveness of assistive technology and telecare for independent living in dementia: a randomised controlled trial.

OBJECTIVES: The use of assistive technology and telecare (ATT) has been promoted to manage risks associated with independent living in people with dementia but with little evidence for effectiveness. METHODS: Participants were randomly assigned to receive an ATT assessment followed by installation of all appropriate ATT devices or limited control of appropriate ATT. The primary outcomes were time to institutionalisation and cost-effectiveness. Key secondary outcomes were number of incidents involving risks to safety, burden and stress in family caregivers and quality of life. RESULTS: Participants were assigned to receive full ATT (248 participants) or the limited control (247 participants). After adjusting for baseline imbalance of activities of daily living score, HR for median pre-institutionalisation survival was 0.84; 95% CI, 0.63 to 1.12; P = 0.20. There were no significant differences between arms in health and social care (mean -£909; 95% CI, -£5,336 to £3,345, P = 0.678) and societal costs (mean -£3,545; 95% CI, -£13,914 to £6,581, P = 0.499). ATT group members had reduced participant-rated quality-adjusted life years (QALYs) at 104 weeks (mean - 0.105; 95% CI, -0.204 to -0.007, P = 0.037) but did not differ in QALYs derived from proxy-reported EQ-5D. DISCUSSION: Fidelity of the intervention was low in terms of matching ATT assessment, recommendations and installation. This, however, reflects current practice within adult social care in England. CONCLUSIONS: Time living independently outside a care home was not significantly longer in participants who received full ATT and ATT was not cost-effective. Participants with full ATT attained fewer QALYs based on participant-reported EQ-5D than controls at 104 weeks.

The impact of assistive technology on burden and psychological well-being in informal caregivers of people with dementia (ATTILA Study).

INTRODUCTION: Assistive technology and telecare (ATT) may alleviate psychological burden in informal caregivers of people with dementia. This study assessed the impact of ATT on informal caregivers' burden and psychological well-being. METHODS: Individuals with dementia and their informal caregivers were recruited to a randomized-controlled trial assessing effectiveness of ATT. Caregivers were allocated to two groups according to their cared-for person's randomization to a full or basic package of ATT and were assessed on caregiver burden, state anxiety, and depression. Caregivers' data from three assessments over 6 months of the trial were analyzed. RESULTS: No significant between- or within-group differences at any time point on caregivers' burden, anxiety, and depression levels were found. DISCUSSION: Full ATT for people with dementia did not impact caregivers' psychological outcomes compared to basic ATT. The length of follow up was restricted to 6 months.

Skill mix: The potential for personal assistants to undertake health-related tasks for people with personal health budgets.

Personal health budgets (PHBs) are being promoted in England as expanding the benefits of choice and control to individuals with healthcare needs. National Health Service (NHS) money is provided to eligible people to use as set out in approved care plans, including direct employment of personal assistants (PAs). The government plans to increase NHS-funded PHBs and to further introduce integrated personal budgets (IPBs). This potentially creates more demand for directly employed or self-employed PAs with health-related skills. The objective of this paper is to report findings from interviews with PAs (n = 105) and key informants (n = 26) from across England, undertaken between October 2016 and August 2017, about the potential for the PA workforce to undertake 'health-related' tasks as facilitated by the introduction of PHBs. PAs were purposefully recruited to ensure the sample included participants from different geographical locations. Key informants were purposefully selected based on their knowledge of policy and community services. Data were analysed quantitatively and qualitatively. This paper focuses on reporting qualitative findings, which are set within the theoretical framework of normalisation process theory to explore implementation challenges of PHBs. The majority (64%) of PAs confirmed that they saw their current roles as congruent with PHBs, were willing to engage with PHBs and undertake health-related tasks. However, 74% of PAs said they would need additional training if enacting such roles. Key informant interviews appraised the development of PHBs as complex, noting incongruences arising from NHS and social care-funded PAs carrying out similar roles within different organisational systems. We conclude the current PA workforce is willing to take on PHB work and is likely to interweave this with work funded by PBs and self-funding care users. Implications include the need for careful consideration of training requirements and delivery for PHB-funded PAs.

Assessment of need and practice for assistive technology and telecare for people with dementia-The ATTILA (Assistive Technology and Telecare to maintain Independent Living At home for people with dementia) trial.

INTRODUCTION: The objective of this study was to define current assistive technology and telecare (ATT) practice for people with dementia living at home. METHODS: This is a randomized controlled trial (N = 495) of ATT assessment and ATT installation intervention, compared with control (restricted ATT package). ATT assessment and installation data were collected. Qualitative work identified value networks delivering ATT, established an ATT assessment standard. RESULTS: ATT was delivered by public and not-for-profit telecare networks. ATT assessments showed 52% fidelity to the ATT assessment standard. Areas of assessment most frequently leading to identifying ATT need were daily activities (93%), memory (89%), and problem-solving (83%). ATT needs and recommendations were weakly correlated (τ = 0.242; P < .000), with ATT recommendations and installations moderately correlated (τ = -0.470; P < .000). Half (53%) of recommended technology was not installed. Safety concerns motivated 38% of installations. DISCUSSION: Assessment recommendations were routinely disregarded at the point of installation. ATT was commonly recommended for safety and seldom for supporting leisure.

Does telecare prolong community living in dementia? A study protocol for a pragmatic, randomised controlled trial.

BACKGROUND: Assistive technology and telecare (ATT) are relatively new ways of delivering care and support to people with social care needs. It is claimed that ATT reduces the need for community care, prevents unnecessary hospital admission, and delays or prevents admission into residential or nursing care. The current economic situation in England has renewed interest in ATT instead of community care packages. However, at present, the evidence base to support claims about the impact and effectiveness of ATT is limited, despite its potential to mitigate the high financial cost of caring for people with dementia and the social and psychological cost to unpaid carers. METHOD/DESIGN: ATTILA (Assistive Technology and Telecare to maintain Independent Living At Home for People with Dementia) is a pragmatic, multi-centre, randomised controlled trial over 104 weeks that compares outcomes for people with dementia who receive ATT and those who receive equivalent community services but not ATT. The study hypothesis is that fewer people in the ATT group will go into institutional care over the 4-year period for which the study is funded. The study aims to recruit 500 participants, living in community settings, with dementia or significant cognitive impairment, who have recently been referred to social services.Primary outcome measures are time in days from randomisation to institutionalisation and cost effectiveness. Secondary outcomes are caregiver burden, health-related quality of life in carers, number and severity of serious adverse events, and data on acceptability, applicability and reliability of ATT intervention packages. Assessments will be undertaken in weeks 0 (baseline), 12, 24, 52 and 104 or until institutionalisation or withdrawal of the participant from the trial. DISCUSSION: In a time of financial austerity, CASSRs in England are increasingly turning to ATT in the belief that it will deliver good outcomes for less money. There is an absence of robust evidence for the cost-effectiveness and benefit of using assistive technology and telecare. The ATTILA trial meets a pressing need for robust, generalisable evidence to either justify continuing investment or reappraise the appropriate scale of ATT use. TRIAL REGISTRATION: Current Controlled Trials ISRCTN86537017.