Dementia Action Week

17 – 23 May 2021 is Dementia Action Week. To mark the week we are promoting recently published guidance on involving people living with dementia in adult safeguarding enquiries.

Research has shown that older adults with dementia are more likely to experience abuse and neglect than those without a diagnosis. People who are living with dementia are entitled to be free from abuse and neglect and where abuse is experienced, and action should be taken to stop and prevent it. The guidance which explains what is known about the abuse and neglect of people who are living with dementia and identifies principles and suggestions for good practice. The guidance is aimed at social workers, however will be of value to all professionals involved in safeguarding adults who are living with dementia. The guidance sets out good practice for working people living with dementia, suggesting ways in which professionals can provide quality safeguarding and best involve people in decision-making.

Dementia can cause difficulties with memory, thinking, language and problem-solving. People living with
dementia may find it difficult to report abuse or to make choices about how they would like their situation to be managed. Because of this, thought needs to be given as to how individuals can be supported to make decisions within enquiries, in line with the requirements of the Mental Capacity Act 2005.

Principles for Practice

• Strengths-based approaches are a useful way of supporting the human rights of people who are living with dementia. Workers using this approach should identify things which the person is already successful at and seek to build on these. The approach also involves thinking about how issues of culture and diversity might have an impact on the decision in question.
• Knowledge and understanding of relevant legislation and guidance is important for understanding how people living with dementia may be helped to partake in safeguarding enquiries. This includes knowledge of the Care Act 2014 and the related Care and Support Statutory Guidance, as well as the Mental Capacity Act 2005 and its Code of Practice and the Making Safeguarding Personal approach.
• Supported decision-making frameworks can be used to assist people living with dementia to make decisions. Previous research has identified useful ways to assist decision-making. These include listening to the person, asking the person about their preferences and choices in an open and non-challenging way, and providing the person with clear written information. Decision-making aids can be used to help people to structure such decisions.

Suggestions for good practice

• Providing people with clear information about safeguarding – Many members of the public are likely to be unaware of the principles of the Care Act 2014, or what safeguarding means. Local Authorities should provide publicly accessible information which sets out what abuse is and how people can report it. Visit our information for adults at risk and family members page which is where you will find this information in Newcastle.
• Thinking about the person’s communication and cultural needs – Dementia is an umbrella term for several conditions (see DH, 2015 for information about the different types of dementia). Because of this people may experience a range of symptoms. It is important to start by assessing the difficulties that an individual experiences and what kinds of help they may find useful. Additionally, a person’s cultural needs may affect the type of support they would find it useful to receive. Checklists can be used to identify these needs. For example, identifying the type of dementia, the method of communication that the person prefers as well as their ethnicity, religious views or sexuality.
• Thinking about where the conversation is held – Safeguarding enquiries involve talking to people about abuse and neglect. This is a sensitive issue and so thought needs to be given about where conversations take place.
• Building relationships with the person living with dementia – Where possible, people who are conducting safeguarding enquiries should work with members of staff who already have an established and trusting relationship with the person concerned. In cases where the person living with dementia is not known to services, then workers should try and build a relationship with the person over more than one session, where this is possible given the level of risk presented. Please read our Principles of Engagement or watch our short principles of engagement video which highlights good practice when involving people in the safeguarding adults process.
• Consider advocacy – Whilst many people living with dementia will wish to speak for themselves, others will feel reassured if someone close to them can help them to communicate or speak on their behalf. Professionals should include friends or family members if this is what the person wants or should consider a referral to advocacy services where the person is unsupported. In Newcastle, advocacy services for safeguarding adults enquiries or reviews are provided by Your Voice Counts and referrals are made by Social Workers.
• Consider decision-making guides – Conversations about safeguarding can be upsetting and are often complex. Because of this, practitioners need to consider how people living with dementia might be supported to take part in discussions, in line with the requirements of the Mental Capacity Act 2005. Decision-guides can help to break down information into chunks and may make it more manageable. For example, such guides can list options in a way that can help individuals to consider the reasons for and against taking different decisions, can identify the extent to which a person may feel pressurised by other individuals and can identify the role the person would prefer to take when making the decision.
• Consider how to record the outcomes of safeguarding meetings in an accessible way – Meetings which take place as a result of a safeguarding enquiry should be minuted. However, people with living dementia may find it difficult to remember the outcome of a safeguarding decision. Professionals should explore ways of providing reminders to the person about the outcome of a meeting. They should also review their practice to ensure that future services might better address the needs of people living with dementia.