Almost half of those living in long-term care homes struggle with loneliness and depression. Peer support is a cost effective solution to address these critical rates, however there are no mental health peer support initiatives specifically for older people. A new movement, Java Group Programs, is determined to change that.

Kristine Theurer, PhD Candidate in Rehabilitation Sciences

"My room is at the end of the world". That's what a resident said to me; it broke my heart. How she feels is by no means an exception. Studies suggest that almost one in two residents in long-term care homes suffer from loneliness and depression. 

When it comes to loneliness and depression, peers can help each other the way that no one else can. Yet according to the Mental Health Commission of Canada there are no mental health peer support initiatives specifically for older people, and they are rare within long term care.

The need for change

On March 20, 2016 the Toronto Star heralded the need for a national dementia strategy, a call led by the Alzheimer Society of Canada called "Raise your Voice".

The call includes setting out national objectives to address the crisis and support research to improve quality of care for those living with dementia.

Loneliness and depression have been linked with aggression. Aggression, or rather the expression of unmet needs, continues to make headlines despite our best efforts. 

Is there something different that we can do? 

Edwina’s story

Edwina was a short stocky woman with dementia who moved into a care home where I was working as a music therapist. I have to admit many of us were a bit scared of her. 

Edwina would walk down hallway clutching teddy bears - if you said hello, she'd swear at you. She refused all invitations to participate in programs and looked angry when invited.

Her daughter in tears said to me: "I'm so afraid she’ll be asked to leave. This is the third home we've tried". 

Edwina spent most of her time alone, in bed.

Evolutionary theory suggests we are hardwired to help. We look out for one another -because like animals, to be separated from the herd is dangerous. Anger can be self-perseveration, which is a reaction to fear. 

Everything we have learned about helping tells us to think of it as a one-way street: what we (the experts) can do to and for residents. But this fosters helplessness. 

Calling for a social revolution

This social environment is calling for a social revolution, a fundamental shift in how we provide care. 

This revolution is an overturning of the long standing tradition of superficial social programming based on entertainment and distraction to one that centers on resident's helping each other.

You may see many residents engaged in programs when you walk into a care home, but if you look a little closer, you’ll notice that it is always the same 30 percent or so there. The other 70 percent are off in their rooms. Some are fine, but many are suffering.

A growing body of research tells us that those who engage in peer support, who help others, are healthier and happier.

When I first mentioned I am developing a peer support program for residents living with dementia, I remember someone saying: "Surely those with dementia can't help others?" 

They can. Studies indicate as thinking abilities decline, emotional sensitivity increases.

Java Group Programs: A Peer Support Movement

This is the new movement underway based on my doctoral research, called Java Group Programs, of which I'm the founder and president. Over 600 Canadian and US organizations are already on board.

Why Java? Well, when you gather a few people together over a cup of coffee (Java) to support one another, amazing things happen.

The Java Music Club is an example of one of the Java Group Programs. This peer support group can be led by staff, volunteers and even higher functioning residents! They use a step by step guide to help residents connect. 

Imagine this. Every week, small groups of residents gather together throughout the home to support one another, and to reach out to their peers that are socially isolated. 

Group members take on roles. Photography, readings and music are used, and all kinds of creative ways residents can help each another.

Such as passing a warm handshake, sharing a story of loss and starting over, singing a familiar song together, playing calming windchimes to get centered, sharing a meaningful quote.

As I was developing these peer support programs, I did numerous evaluations with the residents involved and the staff, and observed countless groups in action. And this is what I learned: 

Residents love helping each other; they thrive in this emotionally supportive environment. There are tears and much laughter. The stuff that hope is made of.

Edwina’s story continued

I learned that Edwina loved chocolate and music, so I told her we were serving chocolate at our group. She got out of bed, came, ate all the chocolate and left. Sheesh. The next week she came again, ate all the chocolate, but this time, she stayed a little! 

So I quickly asked: "Edwina, would you take on the role of our music leader?" She hesitated but then grabbed a songbook and picked out a song. She became a regular group member. In the weeks that followed, she began helping others around her, even bringing residents to the program.  

This may not sound like much, but for Edwina this is huge. A month later her daughter came to me and said: "I just saw Edwina sashaying down the hallway, smiling and waving at everyone like she was in a parade".

Moving forward

I have much gratitude for the support of the UBC’s Public Scholars Initiative; it's helping me to get the research on peer support into the hands those who can use it. 

Although Java Group Programs are standardized, peer support groups can be facilitated by anyone, anywhere, and at no cost. The solution is not what we can do to and for residents, but what they can do for one another. 

I invite you to support this social revolution by joining with us. Peer support groups need to be a standard within care homes across Canada.

Help residents help one another. Connect with the Alzheimer Society of Canada. Consider starting a conversation at your local care home, assisted living or retirement home about adding peer support groups into their programming. 

This is a social revolution.

- Feature Image Credit (edited): Efe Peker (CC BY 2.0)