Does everything we do to support people living with dementia need to be evidence-based? (Note: The term “evidence-based” broadly means that a support, service, treatment, etc. is supported by scientific research¹.)

Really, I am asking for a friend.

Okay, that’s not really true. It’s for me.

But, actually, it is a for a friend, in a way.

I want to know, on behalf of people living with dementia, why everything has to be evidence-based. Because what if I am a person living with dementia, and things are not offered or available to me because they are not evidence-based?

What if there is a cool program where my friend living with dementia can volunteer with dementia-inclusive community organizations? In this awesome program, my friend receives support to participate in a volunteer opportunity with an organization (whether that means transportation, training, coaching, etc.) and the organization receives support to engage people living with dementia (that could be training, adaptations to support volunteers with dementia, etc.).

Oh, wait. The program is not evidence-based, so it’s not available to her. I am going to encourage her to get to the bottom of this. I encourage her to call the 1-800-EVI-DENCE hotline.

Hello. We are EVIDENCE based here. This is Amelia speaking. With whom am I speaking?

Hello, my name is Faith and I live with dementia.

Hi Faith, it is nice to meet you. I am happy to help you. I am glad you mustered the courage to call me on your own. You know, scientific evidence does indeed support the idea that people living with dementia should exercise their autonomy and set goals for themselves. So that makes it all okay that you called!

Okay….thank you. Yes, I am calling because I heard about this program called the Purpose Project but I have had trouble finding it. Then someone told me I can’t get it because it is not evidence-based. I am wondering if you can tell me how I can get into it so I can try it?

[Sounds of typing]…….Hmm. Can you tell me the name of that program again?

Sure, it is the Purpose Project. It was started by someone named Sonya Barsness but it hasn’t really gotten going yet. She seems pretty cool and passionate, by the way.

Faith, I think I see the problem. Has she gone through the necessary vetting to determine that it is evidence-based?

Um, I am not sure – what do you mean?

Well, has she evaluated the project in a quasi-experimental, or experimental design….

I don’t know. I just know that I would like to do it, and apparently, I can’t, because I read somewhere that I can only do things that are evidence-based.

Yes, that is correct, Faith.

Why, Amelia? I am not understanding.

Well, there are limited resources out there to support people living with dementia, and so, we need to be really careful about the types of programs and supports we suggest. We have to make sure that the things we suggest really work in order to invest in them.

But who decides whether they work? What does it even mean to work?

That is a complicated question, Faith. I have to say that you bringing this up is contrary to the evidence I have that says people with dementia are not able to reason very well. Not sure what to make of that.

Anywhoo…Each program or idea has to go through a rigorous process to determine whether it is effective – for one program, being effective might be that it results in people with dementia having improved scores on cognitive tests. For another program, it might mean that people with dementia need less anti-psychotics after they participate in that program. And for another program, effective might mean that they have less depression.

Well, to be honest, I am not interested in taking any more cognitive tests, and I definitely don’t want anti-psychotics. And I don’t think I am depressed. So, those things aren’t really important to me anyway.

What is important to you, Faith? Just so you know, I am using evidence-based principles of motivational interviewing.

That’s nice, Amelia. Well, there are lots of things that are important to me. I do want to feel needed, like I am useful. That is why I wanted to do the Purpose Project. Why can’t things be available to me because they could be helpful, or even because I think they are important? Why do I need someone else to tell me what will “work” for me?

[Sounds of shuffling of papers] Umm…..Faith, I literally don’t have answers to those questions in here……

But back to the program, sure, nothing stops Ms. Barsness from starting it. I mean, it isn’t on the list, so it is a bit of a risk for you because we don’t know whether it will be effective for you.

I will take the risk on finding purpose, Amelia.

Faith, I am struck by how you are both supporting the evidence that people with dementia have a sense of humor, and at the same time demonstrating poor judgment. Yay for Science!

Back to Ms. Barsness trying to offer the Purpose Project, even though it is not on our list. She can try, but because it is not on our list, we wouldn’t be able to help promote it, and it might not be seen as “legitimate” in the aging and dementia community. We couldn’t ask any of our partners, like large community organizations or healthcare systems to use it. I mean, they would want to know the evidence-base, of course. She probably would not get funding to start it, but she could try? And then once she has spent several years doing it, she can apply for more funding to do an experimental study, where she can compare people in the Purpose Project with people who are not in the Purpose Project, and try to confirm her hypothesis that people living with dementia will fare better when they have purpose – I assume that is her hypothesis…..Then she can get on the list, maybe.

I hear what you are saying, Amelia. But coming back to me…. I need this now. Not in 5 years. I don’t have the time for all that.

That is a pickle. According to research, the system does not adequately support people living with dementia, so you are right on target in identifying this gap.

Amelia, maybe you can make a note in your database that this is a gap? That would be great- maybe other people are also seeing this gap so we can try to get things moving forward with solutions.

I am sorry, Faith. I can only put information in here that is evidence-based. And although I really value your voice, it does not qualify as evidence-base. Your call is so important to us!

Sigh. Well, I am not sure what exactly to do next, but thanks?

You are so welcome, Faith. Please remember to work on the six or eight pillars of brain health, depending on what model you are talking about. And keep in mind that while some organizations kindly translate and report research results for public view, you would not typically have access to the actual research articles, to evaluate dementia supports for yourself, unless you are affiliated with an academic institution.

Seems a weird way to close a conversation, but okay. Thanks, Amelia!

I do not intend to send the message that seeking evidence for supports – programs, services, ideas, etc. is “bad”. Clearly, research has shed light on many things that have been helpful to people living with dementia and their care partners.

I do recognize that a program does not have to be evidence-based to be available. However, it needs to be acknowledged that supports that are not considered evidence-based might not be promoted, funded, accessible, or considered “legitimate” in the eyes of stakeholders in the dementia support community.

And this could be limiting to people living with dementia.

If service providers, families, and people with dementia are primarily encouraged to seek out evidence-based dementia supports, this inherently suggests that supports for which there is not an evidence-base are not “good enough”.

I do recognize the importance of determining whether supports are working, how they are working, and for whom. I also think we need to question whether supports that are non-medical need the same evaluation approach than supports that are medical. Would a dementia choir need to have an evidence-base in the same way that a medication management and reconciliation program might need an evidence-base?

I am trying to present the concept of “evidence-base” as it might be seen from people living with dementia and their support partners – they do not have the time to wait for something to help them, and might be taxed by the need to limit themselves to things that are only deemed evidence-based.

I do hope to inspire thought and conversation.

Here are a few questions we might consider:

Does everything we do for/with people living with dementia need to have an evidence-base?

Are there things to support people living with dementia that do not need an evidence-base?

How do we know whether a support works? Who gets to decide?

How do we address supports for people living with dementia for which there might not need to be an evidence-base? Do we still need some sort of vetting? Who does this vetting? Is there a need to educate the public on how to discern information and services related to dementia so that they can participate more fully in decisions about supports?

How do we balance the growing of ideas to support people living with dementia with the need to “vet” them as effective, not harmful, helpful, etc.?

If there are limited supports that are considered evidence-based, and we feel that things need to have some level of legitimacy to be offered to people living with dementia, how can we encourage more supports to go through a process to determine whether they are “effective”? How do we make them more widely available? And in a timely manner?

How do we ensure that supports are person-centered, whether we consider them evidence-based or not? Could supports for people living with dementia actually be evaluated based on whether they reflect person-centered values? (Or, support the human rights of people with dementia?)

1. There are details to how something becomes evidence-based and there is also a lot of variability in how that term is used. BIG topic in itself. How something achieves the “designation” of evidence-based is driven by guidelines set by the government as well as the research community. ↩︎

I have been thinking lately of the people I have met in all the nursing homes and senior living communities I have visited. Wow, what a privilege I have had. What a gift to uncover these humans, who are sometimes not seen.

I like to shine a light on them.

I’m thinking of my friend June, whom I met while I was volunteering at a nursing home. June lived with dementia and I would visit her every week and we would just hang out together. June told me how she was a former model, and also that she owned a dress shop for many years. She was very interested in fashion, so I would bring fashion magazines. We would look through them and comment on different styles.

June was very astute and I loved hearing her commentaries on both the outfits and the women who were wearing them. She was very in tune to their moods. “She certainly looks excited,” she would say and point to the model. “Oh my, she does not look happy with that,” she would frown.

I also learned that she loved parakeets and had several throughout her life. In fact, she had bred them. So I would pull up videos of parakeets on YouTube and we would look at them together, which just delighted her. I told her about my parakeet, Abu-Dabi “Larry” Bird (who we called Boo). And then about our cockatiel, Englebird Humperdinck, who I got for my husband as a birthday gift. Unfortunately, Englebird felt like I was his person, rather than my husband, so he would just peck at my husband incessantly when he got too close. This also delighted her.

She told me about her ex-husband, who she said was “good for nothing”. She said other things too about his character, but I cannot print them here. She told me how she “kicked him to the curb and never looked back”. I liked thinking of June all dressed up in her beautiful clothes, surrounded by her beautiful birds, slamming the door on this person who hurt her.

I really enjoyed getting to know June.

One day, as I was saying goodbye to her, she grabbed my hand, looked into my soul, and told me,

“You know, you’re my emotional and cognitive buddy.”

Wow. My heart just about exploded. Is that not the highest praise?

I would never have come up with that phrase on my own. It was perfect.

In my mind, she was telling me a few things. She was telling me about the value of our emotional connection. Maybe she was noticing that I was really interested in what she thought about things. That I wanted to hear what she had to say. I think she was interested in what I thought too. Perhaps she felt that I was a person that she could feel and think with.

Overall, I think she was saying that I got her.

What a beautiful, and unexpected, way of articulating our friendship.

She was my emotional and cognitive buddy too.

Shortly after, I went in to visit June and she wasn’t there in her room. I tried to ask the staff where she had gone. They weren’t really sure. They think she was transferred somewhere else, is all they said.

Transferred. Like a package. A package with beautiful ideas and vocabulary.

I was astounded and hurt that no one was able to tell me where she went. No one even thought of telling me that she wasn’t there anymore. I had been visiting her weekly for about six months.

It struck me that this was probably because nobody noticed I was even spending time with her. I don’t know that anyone noticed June in general.

This was a place where many of the people who worked there seemed to have pretty limited interaction with the people who lived there. I can’t fault them because this was the culture of this place. Probably no one was their emotional and cognitive buddy either. It was very institutional, so, it’s not surprising that the general milieu of the place was not based on connection but disconnection.

Still, it was somewhat devastating to me. Did they not know how beautiful this idea was – to be emotional and cognitive buddies?

I felt grief because this was a real loss to me. I was angry too. They did not see her. Maybe they did not think about where she went because they didn’t think she was there in the first place. How could anyone possibly think a person like June is no longer there, a shell, incapable? You don’t tell people about them being your emotional and cognitive buddy when you are not there.

I am at a place now where I feel sad for the people who were around her in that nursing home, who missed the chance to be June’s emotional and cognitive buddy. .

What does it mean to be a emotional and cognitive buddy? I can’t be sure. But knowing June, I feel like she was expressing this beautiful idea of how we make each other feel seen. June was needing to be seen, and her telling me that I saw her was so powerful to me. It made me feel seen too.

I didn’t just care about June (being an emotional buddy). I was also genuinely curious about her (being a cognitive buddy). And she did the same for me. I can’t stop thinking of how “an emotional and cognitive buddy” is such a great description of something so undefined. June was brilliant.

Do you have an emotional and cognitive buddy? Are you an emotional and cognitive buddy to someone? How do you know?

I never saw June again. I hope someone else is being her emotional and cognitive buddy.

Thanks, June, for being mine. I didn’t get a chance to tell her that, but I think she knew.