This blog introduces new guidance, “Supporting people living with dementia to be involved in adult safeguarding enquiries” following research undertaken by Dr Jeremy Dixon. Dr Dixon writes about his experience of working with experts by experience and how it informed the suggestions for good practice.
International research shows that people living with dementia are at greater risk of abuse and neglect than those without dementia. It is now well established that safeguarding practice should be rights-based, person-centred and strengths-based; drawing on the six principles laid out in the Care and Support Statutory Guidance and Making Safeguarding Personal.
However, whilst social workers agree that these principles are important, putting them into practice can be challenging. People living with dementia may find it difficult to report abuse. They may also need support to understand safeguarding concerns and to make choices about how they would like their situation to be managed.
When writing this guidance, I spoke to two groups of people living with dementia at memory cafes and members of the National Co-production Advisory Group. Most of the people that I spoke to were aware that dementia could make them a target for abuse, such as financial scamming.
However, few had heard of the Care Act 2014 and they did not have a clear view of what safeguarding meant. In their discussions, they highlighted the need for better public communications which would explain what safeguarding is and who people should go to if they were worried about abuse or neglect.
They also highlighted the ways in which dementia could impact on their ability to communicate, with some people saying that they would struggle to understand a safeguarding concern. People in these groups said that being given time to understand the concerns was important.
They also appreciated professionals finding ways to record decisions in creative ways, such as through using audio recordings, so that they could remind themselves of what they had agreed at a later time.
What carers and professionals think
The guidance was also informed by consultations with dementia carers, health and social care professionals and social workers. Conversations with family carers and professionals identified that they found safeguarding a challenging issue to navigate.
Family carers noted that their relatives often struggled to understand complicated information or to engage with lots of new professionals. Professionals agreed with human rights principles, but often found it difficult to think about how these could be applied in practice.
Nonetheless, both carers and professionals were able to reflect on what had worked in the past and to offer useful suggestions. Several professionals talked about working with the person to identify their strengths and preferences.
Both carers and professionals spoke about thinking carefully about where safeguarding conversations were held and of the need to work with carers and advocates to support effective communication. Several professionals spoke about the benefits of using supported decision-making tools to help people to consider their options and come to a decision.
Although people living with dementia, their carers and professionals all agree that safeguarding can be challenging, they also share the view there are practical actions we can take to improve this experience for all. I very much hope we can incorporate their practice suggestions, collated in the guidance, into our daily practice.