The focus of this study is how respect for individual autonomy can be reconciled with responsibilities to protect and promote well-being in a context of significant risks and refusal to engage lies at the heart of this study.

Hoarding in a person's home

Aim of the project

The overall aim is to update and build upon evidence of ‘what works’:

1. Explore how legislative and policy changes (the Care Act 2014) and new service delivery models (specialist or generic; case management or other models) are impacting on local safeguarding infrastructure, practice and outcomes specifically for older people who self-neglect and/or hoard. This will include consideration of whether care professionals consider these legislative and policy changes support or work against best practice.

2. Examine influences on the development of these contrasting approaches for self-neglect practice. Prior to the main data gathering, we will develop a retrospective approach to track the impact of learning from Safeguarding Adults Reviews on practice and systems.

3. Assess the evidence of what constitute the effectiveness of the structural organisation and specific interventions for older people who self-neglect/hoard (building on our literature reviews). We will explore perceptions of which approaches/interventions deliver better outcomes for older people who self-neglect/hoard, and views about how and why they have these effects.

4. Explore the use of a balance of care approach to evaluate the economic case for addressing self-neglect and hoarding amongst older people. This will model circumstances in which social care needs (linked to self-neglect and hoarding) are met or not met (current care plans), and what impact this balance of care approach may have on the NHS and other services. We will then explore the potential economic impact of closing care gaps with alternative care plans or approaches.   

How the study will be carried out

Researchers will carry out a prospective, mixed methods study involving semi-structured, telephone or social conferencing technology) interviews, with local authority safeguarding leads in a sample of 27 local authority areas, then a further stage of interviews in six of these local authorities with safeguarding adults board members, independent sector service providers, older people and family members. The researchers will work with Age UK and  selected Local Authorities in England.

How patients and the public are involved in the research

Age UK London lead on continuing the engagement of older people in this study, drawing on its experiences in taking part in other NIHR studies and in its wide networks, offering to support the older people who will contribute to the Advisory Group. Age UK London will ensure that diverse groups of older people are aware of the study and will use its newsletters to inform wider stakeholders as well as linking with Age UK nationally to ensure the study is of relevance to older people across England.

Older people (service users, carers or both) will be integral to the study and the research team: the Advisory Group will comprise ten members, five of whom will be older people. As noted above, Age UK London will help ensure the study involves older people from diverse backgrounds and that their involvement is ongoing between meetings. Service user and carer advisors will act as ‘critical friends’, particularly commenting on and helping to shape the design of interview schedules, questionnaires and information sheets.

Service users and carers who take part in the study will also debate the emerging findings: this feedback will shape the direction of the data analysis. We will also enlist the support of older people identified by Age UK London and others to ensure key messages are developed and delivered to achieve maximum impact: on prevention, practice guidance and care worker training and continuing professional development, for example. We will use the NIHR Involve guidance on paying lay members of the Advisory Group and meeting their travel and carer costs; this will be administered by Age UK London.

Potential benefits of the research

This research could lead to a better understanding of how local agencies can successfully address hoarding and self-neglect behaviour. In addition, there could be a reduced likelihood of death, unplanned hospital admission, and admission into residential care. (These benefits are not being calculated within the study, though an economic analysis is planned to explore the feasibility of determining financial costs and benefits).

The research is funded by the NIHR School for Social Care Research. It was adopted in November 2020 and will be completed by August 2022.