Title: Risk Assessment and Increasing Safety in Dementia – RAISe-Dementia study
Funder: Dunhill Medical Trust

Abstract: Around 850 000 people live with dementia in the UK and this is expected to almost triple by 2050, due to the welcome reduction in premature mortality(3). Approximately 70% of people with dementia live at home and are supported mainly by their families(3,5), but because of complex needs, including comorbid physical illness, they also use both health and social care services(6). A policy priority is to find the best ways to help people with dementia to live well at home(7). Part of the initial assessment of all people with dementia is to evaluate and manage risk, to enable people with dementia to live safely and well at home. As cognition deteriorates, people with dementia become vulnerable through self-neglect, accidents and greater risk of abuse and exploitation(1,8). Society places a high ethical value on autonomy(9). Trying to avoid risk altogether can lead to excessive restrictions. Therefore, risk management must balance the rights of a person with dementia with those of society and families’ usually beneficent wishes to reduce risks(10,11). Risk enablement aims to find the right balance by protecting autonomy as much as possible(1). However, there is no validated tool available to assess or manage and re-assess risk in dementia to enable this to happen consistently and to allow evaluation of risk enablement. The Islington Dementia Navigator Risk Assessment Tool is used to generate a plan for people with dementia and stratifies the level of risk to inform frequency and method of follow-up. We intend to evaluate its validity, the feasibility of the risk management plans derived from it, their acceptability and outline costs. We will examine 1. Validity - How well the tool identifies risks (compared to gold standard semi-structured clinical assessments) 2. Feasibility - Whether the plan derived after using the tool is implemented over the subsequent 6 months. 3. Acceptability - What people with dementia, family carers and workers think of the process and how it can be improved? We aim to provide a validated, valuable tool for use by professional and support staff working with people with dementia throughout the UK. If shown to be effective in practice, it would promote positive risk enablement, offering a tailored approach to the management of risk and support person-centred care in people with dementia living at home. This is consistent with best practice and is relatively inexpensive and translatable to wider clinical settings.

Lay abstract: As a consequence of the welcome reduction in premature mortality, increasing numbers of people are living with dementia. This poses a growing challenge for health and social care services to find the best ways to support them to live well in their own homes, communities and neighbourhoods. People with dementia are often more vulnerable to risks than other people. These risks include problems such as self-neglect through forgetting to eat and drink properly or take medication; vulnerability to crime and abuse from others; risk to self and others from fire at home to maintaining road safety. Most people wish to remain at home for as long as possible, and managing these risks within dementia should help this. Good risk assessment is very important to enable people with dementia and their families to find the right balance for them between independence and safety. Currently, risk assessment conducted by health and social care professionals is variable and subjective. There are no proven valid and reliable tools to help professionals assess risk in dementia. The main aim of our study is to examine the effectiveness of using a new risk assessment tool for people with dementia, which is currently being used in one NHS Trust (Camden and Islington NHS Foundation Trust). This dementia risk assessment tool helps identify concerns about risk, the actions needed to reduce risk, and how often people living with dementia should be followed up, either through frequent visits to the home or regular telephone calls. We want to see how well it identifies and mitigates risks for people with dementia and whether these risks are reduced over a period of 6 months. We also plan to ask people with dementia and family carers about their experiences and involvement in this process and whether it has helped to enable them to continue to live safely and independently at home. We will then talk with service user and professional groups about the risk assessment tool, to identify what they liked about it and any concerns they have about its use, and gather suggestions for how it can be improved and shared with others. The findings will be of benefit to people with dementia and their families through supporting choice, independence and preferences for care. If the risk assessment tool is shown to be effective in practice, we will actively share it with other UK NHS clinical areas and publish our results.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL