Peer support workers in the dementia care, can contribute to letting people stay longer at home

For more than a year, the peer support workers Marit, Heidi, Line and Randi have used their experience from life, work and being relatives in meeting residents with dementia in the municipalities of Frøya and Indre Fosen. In the two pilot municipalities, they have now gained good experience of how people with relatives’ experience can be a useful supplement in the memory teams.

Pilot project extended

With fresh project funds in, Marit, Heidi, Line and Randi can continue the important work that both provides an increased quality of life to those they are there for – and important knowledge about how relatives’ knowledge can be implemented in dementia care. The State Administrator in Trøndelag granted an application for funds to continue this venture last year – and we are very happy that the State Administrator sees the value of the project! The new funds have the label innovation and renewal.

Peer support workers gains trust from people with dementia and their relatives

When we had the last project meeting, in the spring of 2022, the 4 Peer support workers said that the people who had agreed to get help from them had shown them enormous trust. Sometimes almost too much.

In December 2022, we had a new meeting, to gain more knowledge about what works and what can be done differently. Peer support workers, managers and other functions in dementia care attended the meeting to exchange experiences from the project. It then emerged that relatives have also gained a lot of trust in the experienced staff.

“The next of kin trust the Peer support workers, trust that they see them in a different way than what home nursing can do. Home care follows up more people,” says one in the project.

A new role in the dementia care

While peer support worker are becoming a familiar term in the mental health and substance abuse field, at the start it was completely unknown to those who worked in dementia care in the pilot municipalities. Therefore, the project encountered some uncertainty in the service at the start – should they take over tasks from home nursing?

It gradually became clear to them that the peer support workers have other functions – they are a complementary part of the services. Home care has many people to visit in a day, and often a number of concrete tasks, such as bringing medicines. The peer support worker adapt to each individual, both their routines and wishes. Some need a conversation partner over a cup of coffee, others someone who can accompany them to the doctor or help with shopping.

Time and trust

The peer support workers have both a social and practical function in the lives of people with dementia. This means that they have time to get to know each other. The peer support worker becomes more than one of many faces who are just stopping by.  And they come in their own clothes instead of a uniform. Another success factor is that work has been done in advance to match peer support workers  and users of the low-threshold service based on, among other things, common interests.

“You get to hear quite a few stories. They are confident in me, so they share a lot. Of both good and bad. Experiences from earlier in life are there, so things can come up in conversations. But also nice things! The memories emerge when you take them around in the area”

Contributes to people being able to stay at home for longer

One of the purposes of peer support workers in dementia care is to help people live at home longer. So far it seems to be something that has worked. By supporting and helping people in their everyday lives, Line, Marit, Randi and Heidi have contributed to people functioning better in their homes. They have done this in many ways – based on what each individual has needed. For example:

• They have helped with everyday activities, such as going to the shops or baking bread.
• They have helped someone find a system to drink enough fluids.
• They have seen that someone has needed an exercise program for a stiff hip, helped to get that and did the program with them.
• They have been there to listen to concerns that have been difficult for some to share with others.
• They have knowledge of the service apparatus and how to get in touch with the right service at the right time

Got her faith back that she could do things herself

It can be easy to think that with a diagnosis of dementia there is only one way – you just have to look at the headlines in the tabloid newspapers when they mention someone who has been diagnosed with dementia. “The dreaded diagnosis”, “Got Alzheimer’s shock”. People living with dementia can also lose hope and faith in their own abilities.

Therefore, there was one story in particular from the project gathering in December that made an impression:

A person who has used peer support had had a stay in a nursing home. Previously, she had been very fond of baking, which she had been doing all those years. But when she returned home, she had lost faith that it was something she could do. She had simply given up a bit and thought that “now I won’t be able to bake anymore”.

     She told this to the peer support worker, who  had not lost hope at all. Perhaps because she knew the person in question, perhaps because she recognized something from her experience as a relative. Maybe a combination. In any case, it turned out that they still tried their hand at baking together – which went just fine.

     It went so well that after a period where the two of them baked together, the lady started baking on her own again, completely without assistance from the peer support worker. Mastering may not be a term you associate with dementia, but this story shows that there can be both mastering, hope and faith also for someone living with dementia.

The peer support worker knew the lady and had some idea of what lived in her and how she could react to adversity. She might have seen something similar happen when she was a relative. She had time to see, listen, support, and bake with her. Because that’s her job.

The relatives’ experience means that the peer support workers can be at the forefront

After more than a year of pilot project, the reflections begin about what kind of role the experience of being a relative of someone with dementia plays. Both in contact with the people with dementia, the service apparatus, and relatives.

For example, they have been through the same grieving process as the relatives of those they help. They have experienced different stages of grief and been through the process. They can also recognize things in those they meet at work from when they were relatives themselves, which means they can be at the forefront.

With this experience, they can also guide relatives, for example when it comes to planning. As the dementia diagnosis progresses, it can become more difficult to plan.

“They can get stressed if you say ‘so-and-so is coming at the weekend’, they can’t understand when the weekend is compared to today. It becomes more important that the person comes, and they are stressed to get everything ready. Most are in the present.”

By having experienced this type of stress in the past, they can guide relatives in how to make agreements in practice, so that they prevent mother or father from being stressed by them coming to visit.

Spokesperson for people with dementia

In the pilot project, there has been a focus on trying out the role of peer support workers in dementia care, among other things with the aim of preventing loneliness. During the months that have passed, they have experienced that that role entails many different things.

The fact that they are so close to people, and get to know them in everyday life, means that they also understand what the people they help both want and need. This has meant that in some cases they have also become a spokesperson for the users, both in communication with the service apparatus and with relatives.

It is also a role we can recognize when it comes to peer support workers in psychiatry and addiction, and in this way an interesting discovery.

Training program for experienced employees

Closely connected to this pilot project is a project KBT Fagskole is working on, PIA (Peer supporters as an innovative force in Advocacy in dementia care). The international project, which is financed by Erasmus+, will, among other things, develop a training program for peer support workers in dementia care.

The experiences from the pilot project in Frøya and Indre Fosen are very useful here. At the meeting in December, we went through both the recruitment plan and the training program so that the project participants could provide input. For example, that the job requires interest, patience and life experience. And that you can be a bit “round and generous” and should be confident in yourself – because strong stories from the past can come to light at work.

Knowledge of different forms of dementia can be important for experienced employees

Even if an peer support worker has a lot of knowledge about what it’s like to live close to someone with dementia, you don’t know everything about different forms of dementia or all the conditions surrounding the diseases. Therefore, the peer support workers went through training before they started working with users in the pilot project, where they went through, among other things, how to communicate with someone who has dementia.

After working as peer support workers for quite some time, they now know more about the kind of knowledge they need in their job, and were able to provide good input on the training that project manager Roger Santokhie and others have prepared.

The program includes a review of different types of dementia, and how it develops. For example, that some people become very quiet while others become very “babbling”. That the type of memory you lose depends on different forms. That some people register what those around them do, but not what they themselves do.

In the Erasmus project, there are organizations from Romania, Greece and Italy in addition to Norway. The training program will be translated and adapted to the various countries. It will be exciting to see what the small pilot project can lead to for dementia care, not only in Norway, but also in several countries in Europe in the future.