Research review finds ‘disconnect’ in care planning between dementia patients and healthcare teams

People with dementia are legally entitled to have a say in their treatment but are rarely included when it comes to their care planning, according to a review of research.

There are around 1 million people aged 65 or over with the condition in the UK, according to the Alzheimer’s Society, and there is more than 70,000 people with young onset dementia.

Dementia is a term used to describe a group of diseases that result in progressive damage to nerve cells in the brain which affect memory, language, perception, problem-solving and behaviour. Globally, dementia is the seventh leading cause of death and a major cause of disability.

A new review paper, conducted by a St Andrew’s Healthcare researcher, which has looked at dementia care planning across the country, has just been published.

The article in the Social Policy and Society journal, suggests there is a “disconnect” between service providers and the people who have the dementia diagnosis themselves.

Lead researcher, Dr Inga Stewart, who is also a Consultant Clinical Psychologist at St Andrew’s, said: “We know that many people who have dementia want to be involved in their care planning. This is the same for their unpaid carers, who can become partners in their loved one’s care.

“Involving the person in their care decisions is commonly called co-production. But, this is not just about talking things through together, it is about understanding that what the person knows about themselves, or what their loved ones know about them, is just as important. It’s their own form of non-clinical ‘expertise’. Therefore, they should be invited to play an active role in discussions and decisions around care planning. Sadly, we found a significant lack of co-production in healthcare practice.

“Our previous review of the published literature found evidence of many people expressing dissatisfaction at being treated as passive recipients when it directly involves them and their health. This is despite the fact that co-production is specifically included in the Care Act 2014 legislation for England, which states that ‘everyone should experience control in their own care’.

“We wondered about this disconnect, and therefore went on to review the legislation, policy, and guidance for England on care planning co-production within dementia care.

“We have concluded that in general, as healthcare professionals, we must do better at involving people with dementia in the process of planning their care. They have the same rights as any adult, and having dementia should not change this. Having the condition should not mean they are side-stepped when it comes to making decisions about what they can still do and how they wish to be cared for as their condition progresses.”

Dr Maria Livanou, Senior Lecturer at King’s College London and co-author, said: “We found the guidance given to service providers about how to approach co-production of the care planning process is not as clear as it could be. So, we’re calling for more practical support to be given so healthcare professionals can deliver co-production in the way it should be.” 

St Andrew’s Healthcare is already working to improve co-production practice in healthcare. Some of the people being looked after in the hospital have some very complex mental health conditions, which include dementia, and the team are already involving patients and carers in developing what their care looks likes.

This forms part of the Co-production Framework which ensures there is equal partnership between staff, patients and carers. Adopting and implementing this means the person with the diagnosis is at the very centre of their care and receives the treatment they want and deserve.

The framework document can be accessed by all staff, people using St Andrew’s services and the public, and provides a structure for service level quality improvement plans, laying out clear priorities and measurable criteria to help describe, track and provide recognition for what good co-production practice looks like. 

It also lays out the right infrastructure which will support the monitoring and delivery of high-quality co-production initiatives, underpinned with a robust governance structure.