Why stories are not enough – the importance of the science

By: Eva van der Ploeg

Introduction Video:

Eddie had become an annoyance not to say a hazard to himself and his environment. Living with Alzheimer’s in a nursing home, staff would recognize his ‘bad days’ when he was standing up more than his usual bent posture. He would create chaos by starting to move around all the furniture in the shared living space, putting chairs on tables using the odd swearing word. In the process, he would agitate his co-habitants (imagine a snowball effect)and consequently the staff. Family members would arrive in a potentially chaotic and unpleasant environment. A depressing story for all those involved.

At the time, we were starting our research project about Original Montessori for Dementia (copyright dr Cameron Camp). We were looking for people who lived in a nursing home, had a diagnosis of a dementia and displayed agitated behaviors. Eddie fitted the profile perfectly. I went to interview staff to find out more, but I came back disheartened questioning if I could do anything for Eddie and somewhat frightened that he would attack me. I spoke to his daughter, and from a misunderstood and daunting disease, Eddie became a person again. A man with an interesting life story, some spunk and a sense of humor.

In the meantime, a colleague who knew Eddie and his family well, approached Eddie during one of his ‘moods’. We had just been schooled in Montessori for Dementia and she immediately applied the teachings by asking Eddie ‘Why are you moving all the furniture?’. ‘Well’, said Eddie, ‘I am preparing my workplace for the day’. Eddie used to be a car- and motor mechanic. Although his behavior looked odd, erratic from the outside, Eddie felt he was doing something useful, something he had done for most his life. And with his straightforward explanation, he communicated that he was looking for a role, activity, meaning in his daily life. He basically told us he was bored.

Taking all this information together, we designed an activity program for Eddie. And it was my pleasure to include Eddie as the first participant in my project and do activities with him. I spend time with Eddie doing so-called Montessori activities, which was a pleasure. Eddie sat down. He made contact with me. He smiled. Most importantly, he did not get up to redesign the living room. He stayed, was calm and we both had a good time. A staff member stopped in her tracks and stared at us. Later she told me she could not believe what she had seen. Before, I started my work, she had told me ‘there was no use’ to work with this man.

Great success story right? Are your hands itching to try Montessori for Dementia? Did a specific person come to mind? Hold your horses! Here are a couple of questions, and imagine me sitting on the chair of your supervisor, general management, financial manager, policy maker:

• Was Eddie not just happy to have some company?
• Who says it works for other people?
• Who is going to do this intervention? We don’t have time!
• What does this cost? Why should I invest in this?

Now this is were science can support you. As I mentioned my ‘intervention’ was part of a research project. It was a great opportunity, as we were both helping people who needed it then and there, as well as trying to create scientific evidence to support Montessori for Dementia. We designed a randomized cross-over trial. A what? A trial is a specific, quite precise type of study where your try to control certain factors to help you to be able to give meaning to your results. For example, you choose clear criteria which people can and cannot participate in the trial. As I mentioned before our ‘participants’ had to have a diagnosis of dementia, live in a nursing home and display at least one ‘agitated behavior’.

Cross-over refers to the study conditions. All participants were offered the Montessori visits, but they were also offered what we called a series of normal visits. The frequency and duration of these two types of visits were exactly the same. During Montessori visits, we did Montessori activities especially tailored to the skills and needs of this individual. During normal (or control) visits, we just read a newspaper not tailoring to any skills or needs, so for example reading at normal speed and not focusing on topics that may capture their attention. Now why would we do this? Basically, to be able to answer question 1 (Was Eddie not just happy to have some company?). Control visits represented the added value of the study of having more company (than before). We were studying the added value of Montessori for dementia, not of increased contact. After 4 Montessori visits, I visited Eddie to read the newspaper. And let me tell you, it was not half as pleasant. During my first visit, he was happy to see me, smiled, held my hand and sat down for a while. After that it went downhill, Eddie got bored with this newspaper reading and would get up and start looking for something meaningful to do, which could be ‘preparing his workplace’. We were back to square one.

So in Eddie’s case Montessori visits performed much better than control visits, but I am still only presenting positive results with one individual. Which brings us to question 2 – does it work for other people? This is another characteristic of a trial: you study more than one person. In our case, we studied 40 people. And we tried to have a representative number of men and women in our study group. And every participant was ‘randomised’: they either started with Montessori visits and finished with control visits. Or they started with control visits to then switch to Montessori visits. We do this to make sure that the Montessori visits do not’ infect’ the control visits. The same facilitator would work with a participant for all study visits, so we needed to make sure that the Montessori principles and interests were not carried over into the control visits.

So in a nutshell, we compared people with themselves in how they responded to the two different kind of visits. And within in the group, we tried to make sure that the order of interventions did not impact on the results. It is getting technical now and I will stop here. I just wanted to give you some insight into the process of doing a research project.

The results? Well, it is a nuanced story. Let me start with the good news and then continue with more good news. Firstly, Montessori activities reduced the time that participants were engaged in those agitated behaviors. By half! But: the control activities had a similar effect. Just keeping people company also led to a large reduction in agitated behaviors. Although it is not supporting the Montessori activities, this is good news too: a simple intervention can help to create a more calm environment. Imagine, volunteers coming to read the newspaper to people at that time of day that they are most agitated and disrupting others! We found further support for Montessori activities: they elicited much more active engagement, interest and positive emotions than the control activities. Meaning: that even though during control activities participants were not agitated, they were not terribly engaged or happy with the activity. So when looking for actively engaged, interested and joyful people the Montessori activities outperform the simple reading of a newspaper. A final interesting finding was, that when people had lost their English language fluency, they benefitted more from the Montessori activities than those who had maintained this ability. So Montessori activities can be helpful to target people who have referred back to their first language, like Indonesian immigrants in the Netherlands might do.

I have not answered questions 3 and 4, simply because we did not study this yet. Our impression was that this requires an investment and when everybody is doing this (staff, volunteers and family members), it will save time and money. Dr Camp is studying this atm, for example if the activities reduce the use of anti-psychotic medication (costly!).

Now, I will repeat my question: will you do this Montessori intervention? I’ll leave that to you. The evidence is mixed, but it is honest. It reveals the plot under the different story lines. You can choose the follow the plot or you can be happy and proud with the success stories. Every happy, peaceful moment for a person living with dementia counts. I would and I do. And I use the evidence (all of it, not only the convenient part) to share the whole story, so everyone can make their own decision about what to do.

 

Dr. Eva van der Ploeg has a PhD in Public Health from the Erasmus Medical Centre in Rotterdam. She has worked and lived in the U.S.A., the Netherlands and Australia. She is now based in Indonesia. She works internationally as a researcher, consultant and trainer of ‘Original Montessori for Dementia’ hoping to improve the life of people with dementia and those caring for them.