Supporting people living with dementia through safeguarding processes

New guidance has been published to steer professionals supporting people living with dementia through safeguarding processes.

The new guidance, aimed at social workers, brings together research from Dr Jeremy Dixon at the University of Bath, alongside people living with dementia, their family carers and professionals in the sector to find out how people central to the adult safeguarding process could be involved more, and given choice and control about how their case is managed.

Studies focussing on the abuse of people living with dementia have identified high levels of abuse in the community, the research found, with most studies relying on self-reports by family or informal carers. They suggest that psychological abuse – including verbal aggression or abuse – is the most common form of abuse, with physical abuse and neglect being less common.

Several studies looked at as part of the research also highlighted issues of abuse and neglect of people living with dementia in care homes.

The research found self-reports by care staff identified several forms of abuse within this setting: most notably threats to residents, avoiding residents with challenging behaviours, not providing enough time when supporting residents to eat and not taking enough care when helping residents to move.

Higher levels of abuse were found in cases where the person living with dementia was perceived by carers to be resistant to care, irritable or displaying challenging behaviours. Higher levels of abuse were also found where family carers had experienced emotional distress, anxiety or depression.

As a result of the research, the guidance found that many members of the public are likely to be unaware of the principles of the Care Act 2014, or what safeguarding means, and that local authorities should provide people with clear information about safeguarding.

In addition to producing information, the guidance says Safeguarding Adults Boards should engage with communities, particularly people who may need safeguarding services either now or in the future.

People living with dementia who took part in the consultation also said that they would find it difficult to make safeguarding decisions over one session.

Responding to the consultation, one woman said: “I wouldn’t be able to understand it [the safeguarding concern] in one day. I would need one session to understand it and would need the person to put the concerns in writing, so that I had time to consider it, with someone returning. It is about understanding how each person likes to work.”

In order that practitioners can promote a person’s wellbeing throughout any safeguarding processes, the authors recommend that they identify what is important to and for the person in question, providing a tool to help people involved in the safeguarding process to get to know the person.

The guidance also recommends that practitioners think about where the conversation is held – considering that people who are living with dementia may become confused when going into new environments for the first time, and that practitioners be mindful of where the alleged abuse or neglect has taken place.

People living with dementia who took part in the consultation said that they would find it easier to take part in a safeguarding decision if they had someone with them that they knew well, while others said that they would like to speak for themselves but would find the presence of someone they knew well reassuring.

The guidance recommends that professionals should ask people living with dementia whether they would like to have someone with them during a safeguarding meeting and should make efforts to hold the meeting at a time at which that person can attend.

People living with dementia and carers who took part in the consultation said that those living with dementia often struggle to process complicated information. Specifically, people identified that it can be unhelpful for those living with dementia to be offered too many choices at one time.

“As my dementia has progressed, I find it more and more difficult to choose. For example, I have avoided going to the optician for the last few years because I find it impossible to choose between 40 pairs of glasses. What I need is a decision-tree. Giving me ‘either/or’ options would be helpful, so I can decide between two things and then maybe consider a third against that,” one respondent said.