5.1.4 Supporting Adults Living with Dementia through Safeguarding Processes

1. Introduction

This guidance is taken from the publication Supporting People Living with Dementia to be Involved in Adult Safeguarding Enquiries (Department of Health and Social Care et al).

In England, there are over 900,000 adults living with dementia and approximately 540,000 carers of adults with dementia (Dementia, NHS). As dementia can cause difficulties with memory, thinking, language and problem-solving, adults living with the condition may be at increased risk of abuse and neglect.

Adults with dementia may experience psychological abuse (especially verbal aggression), as well as physical, financial or sexual abuse. Abuse can occur in the community or in domiciliary care settings or care homes. Adults with dementia may also be victims of financial abuse and exploitation in the community and be targeted by rogue traders or financial scams.

The effects of dementia mean adults may not realise that they are experiencing abuse or neglect or be able to report this. They may need support to be able to recognise any concerns and to articulate choices about how they would like their situation to be managed.

When a safeguarding referral is made, practitioners must always seek the adult’s views on the alleged abuse or neglect and should ensure that they are central to decision-making. Adults with dementia should be as central to safeguarding processes as those without dementia; they should be supported to be involved in the enquiry and be given choice and control about the proposed response to the concerns raised.

Decision making processes and safeguarding enquiries should look at levels of risk and make proportionate judgements to keep the adult safe. Adults living with dementia, carers and professionals may each interpret risk in different ways; adults with dementia do not usually use the term ‘risk’ when talking about their situation.

2. Practice Principles and Legislation

In the UK, the human rights of people living with dementia are protected by the Human Rights Act 1998 and the Convention on the Rights of Persons with Disabilities. The principles of fairness, respect, equality, identity, dignity and autonomy (known as the the FREDA principles) are a useful way of remembering how to apply human rights laws in practice.

Effective safeguarding is about seeking to promote the adult’s rights as well as protecting their physical safety and taking action to prevent the occurrence or reoccurrence of abuse or neglect. It involves enabling the adult to understand any risks of abuse and the actions that they, or others, can take to reduce those risks.

Strengths-based approaches are key in supporting the human rights of people living with dementia. Practitioners should use this approach to identify the adult’s strengths and then support them to build on these. Consideration should also be given as to how culture and diversity may impact on decisions that need to be taken (see Equality, Dignity and Human Rights chapter).

Key legislation and guidance can support adults living with dementia to take part in safeguarding enquiries. Practitioners should, therefore, have knowledge and understanding of the:

• Care Act 2014 and Care and Support Statutory Guidance (see Care Act chapter);
• Mental Capacity Act 2005 (MCA) and Code of Practice (see Mental Capacity chapter); and
• Making Safeguarding Personal approach (see Making Safeguarding Personal chapter).

Supported decision-making frameworks can be used to help adults living with dementia to make decisions. These include listening to the adult, asking them about their preferences and choices in supportive way, and providing them with clear written information as appropriate. Decision-making aids can be used to help adults make decisions.

Under the Mental Capacity Act 2005 practitioners must do all they can to provide adults with accessible and relevant information to help them make informed decisions.  The Act also states that a person should not be treated as unable to make a decision unless all practicable steps to help them to do so have been taken, without success. This means that professionals should provide appropriate support to adults who have dementia to maximise their ability to make decisions.

It is important, however, not to make assumptions about a person’s mental capacity. Capacity should be considered separately for each decision at the time it needs to be made; a person can have mental capacity to make some decisions but not others or may be able to make decisions if they are provided with appropriate support.

2.1 Advocacy

Under the Care Act, local authorities have a legal duty to provide independent advocacy to support adults through safeguarding processes if they would otherwise have substantial difficulty in being involved.

If the adult already has an advocate who has been arranged under the Care Act or the Mental Capacity Act then, unless inappropriate, the same advocate should be used for any safeguarding enquiry.

For more information, see Independent Advocacy chapter.

3. Suggestions for Good Practice

Supporting People Living with Dementia to be Involved in Adult Safeguarding Enquiries (Department of Health and Social Care et al) outlines six different areas for good practice when there are safeguarding concerns in relation to an adult with dementia.

Step 1: Providing people with clear information about safeguarding

Local authorities and safeguarding adults boards should provide information to the adult concerned, and the wider public and practitioners, to explain what abuse and neglect are and what action should be taken if people are concerned about an adult, especially if they are living with dementia.

Step 2: Think about the person and their environment

When discussing a safeguarding concern with an adult living with dementia, it is important to plan how to best communicate with them and also where such conversations should take place (to help put the adult at ease and ensure they are not put at any  further risk). Because of the symptoms of dementia – which include memory loss and difficulty in thinking, problem-solving or speaking – adults may find it difficult to talk about safeguarding concerns and their preferred outcomes, particularly in just one session. More than one session may be needed, as well as providing follow up material in a format that is appropriate to the individual adult, for example written information that they can refer to on an ongoing basis.

Step 3: Building relationships with the person living with dementia

Adults living with dementia can find it difficult to communicate with new practitioners. Where possible, staff who are carrying out safeguarding enquiries should work alongside practitioners who already have an established and trusting relationship with the adult. Alternatively, under the Care Act, local authorities can ask another organisation or professional to carry out a safeguarding enquiry on its behalf. Therefore, if there is no conflict of interest, it may be more appropriate for another organisation to undertake a safeguarding enquiry with an adult who is living with dementia.

If the adult is not previously known to services, practitioners should take steps to build a relationship with them, in however many sessions are needed, although this may depend on the level of risk presented. Principles of person-centred care and support should guide this process. Particular attention should be paid to treating the adult with respect and dignity, and taking time to learn about their individual life story. Activities such as assessments and developing plans should be individualised to their particular needs. Practitioners should be aware of and sensitive to the adult’s religious, spiritual and cultural beliefs (see Safeguarding Adults and Culturally Competent Practice). They should also recognise that aspects of the adult’s behaviour which they may find challenging could be an indication of unmet need/s.

In building relationships with adults living with dementia, it is important to go at their own pace and make sure they do not feel rushed. This means ensuring that there is sufficient time to spend with the adult to build an effective rapport. Where appropriate, carers and family members can help to support effective communication and build relationships. An independent advocate may also be required (see Independent Advocacy chapter).

Step 4: Using decision-guides

Conversations about safeguarding can be distressing and are often complex. It is important therefore to consider how the adult living with dementia can be supported to participate in the discussions. Adults living with dementia often have difficulty in understanding complicated information; particularly if they are offered too many choices at once. As part of any safeguarding enquiry (whether or not the allegation is substantiated), an adult living with dementia may need support to identify and weigh up options available to them. Supporting People Living with Dementia to be Involved in Adult Safeguarding Enquiries (Department of Health et al, p 30-32) cites frameworks adapted from the Ottawa Personal Decision Guide, which can be used to highlight concerns, map out the available options and identify support which may help the adult to make a decision.

Consider how meetings / discussions are recorded

As adults living with dementia often have difficulty in remembering decisions (including when how they were made and when they were made), in cases where an alleged abuser does not have access to their information, they could be given a copy of a safeguarding decision in writing and in appropriate language so that they keep referring to it. Suggested examples include using postcards or recording meetings with practitioners which they can replay (or be played to them).

Reviewing practice

The Making Safeguarding Personal approach ensures that identifying what the adult wants is central to the safeguarding process. Practitioners should record the adult’s views so that the outcomes they want to achieve from the safeguarding process can be reviewed on an ongoing basis, and at case closure. This record should provide a short summary of whether the outcomes identified by the adult or their advocate/s have been met, partly met or not met. For example, it could ask:

• Have things changed? How have they changed?
• How do you think that you / we have progressed towards the wishes and outcomes you identified?
• What helped or prevented the achievement of outcomes?
• Was there anything that could have been done differently?’