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Could mindfulness improve quality of life for people living with ALS?

Research stories June 28, 2021

Discovery Grant will fuel an interdisciplinary mindfulness study for people living with ALS and their caregivers

“Research suggests that being more mindful may allow people a greater sense of perceived control. This is doubly relevant because an ALS diagnosis can bring about elements of fear and grief, as people anticipate loss of control over various aspects of their lives.” - Lana Kim McGeary

Thanks to joint funding from Brain Canada and ALS Canada through the 2020 Discovery Grant Program, a team based at The Neuro (Montreal Neurological Institute-Hospital) will be able to pioneer a study on mindfulness in ALS, with the goal of helping health care professionals, people living with ALS and their primary caregivers enjoy better quality of life.

The project was conceived by Lana Kim McGeary, a spiritual care counsellor in The Neuro’s ALS program. She is in good company: a team of researchers and clinical practitioners will collaborate on the coming study. Her co-applicants span clinical neurology, physical therapy, speech language pathology, psychology, nursing, nutrition, occupational and respiratory therapy, leveraging the full strength of the interdisciplinary clinic in support of people living with ALS, primary caregivers and health care professionals’ quality of life.

Mindfulness – what is it?

The pilot study will focus on the mindfulness framework developed by Harvard psychologist Ellen Langer. The core component of this framework is that everything changes and the ability to navigate uncertainty, to find new ways of ‘seeing,’ may be correlated to greater quality of life. In other words, mindfulness is being aware that everything can be perceived from different perspectives and being attentive to this may bring about a more mindful, enlivened and creative state. This habit of perception can be learned, and several decades of study within the mindfulness field indicate that such learning may increase our ability to navigate grief and benefit quality of life. McGeary says. “Research suggests that being more mindful may allow people a greater sense of perceived control. This is doubly relevant because an ALS diagnosis can bring about elements of fear and grief, as people anticipate loss of control over various aspects of their lives.”

Prior ALS mindfulness research by Drs. Ellen Langer, Francesco Pagnini and Deborah Phillips have indicated that practicing mindfulness can produce a range of benefits for people living with ALS and their primary caregivers as they contend with their illness and its impact on their lives. In speaking of Dr. Langer’s framework, McGeary notes that “Mindfulness is the opposite of mindlessness. Mindless thinking is automatic and based on past assumptions about the world, whereas mindfulness makes us attentive to small changes in ourselves and our environment; perceiving novelty helps us become more open to change and more accepting of uncertainty.”

The “eureka” moment that sparked international collaboration

A quick exchange provided the inspiration: a colleague returning from a conference abroad handed McGeary an article about Italian researcher Dr. Francesco Pagnini’s work in ALS. “She said to me, ‘Lana, this sounds so much like your work,’ and I had to agree.”

McGeary went to Dr. Angela Genge, director of the ALS clinic and the Clinical Research Unit at The Neuro. “I asked her if she would be open to bringing something like this to our clinic, and she immediately said yes,” relates McGeary. “She really creates an environment for innovation to be possible.” Genge also supported McGeary in connecting with Drs. Langer, Pagnini and Phillips, who agreed to participate in this novel Canadian research project. Thanks to this funding, the team is now well into the implementation of phase one.

“The Discovery Grant Program gives bold new ideas a head start,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “We’re proud to fund unique interdisciplinary teams like this one, as they expand our understanding of ALS in ways that will ultimately improve outcomes for Canadians affected by this devastating disease.”

An embodied approach for better patient uptake

The two-year qualitative study will explore whether a mindfulness approach combining home- and clinic-based practices, can improve quality of life for people living with ALS and their primary caregivers In phase one, Drs. Deborah Phillips and Francesco Pagnini, experts in the mindfulness field, will train the clinic’s interdisciplinary team in a Langerian mindfulness framework. The care providers will then integrate this approach into their clinical practice and help people living with ALS and primary caregivers find innovative ways to incorporate mindfulness into their daily routines. “The occupational therapist, nutritionist, and physiotherapist may help people living with ALS innovate new approaches for daily living tasks, the neurologist, and nurse invite a shift in the framing of symptoms, while the respiratory therapist may encourage attention to variability in breathing,” says McGeary. “It was very important to me that this be a team effort, not just the spiritual care counsellor alone. We feel that collaboration between the team, people living with ALS and primary caregivers will encourage better uptake.”

According to McGeary, The Neuro team already focuses on people living with ALS and primary caregiver’s quality of life, and this project just brings it to another level. Dr. Langer’s approach was chosen because it may prove easier to access for the care team, people living with ALS and primary caregivers than a formal meditation practice. The team agreed that especially for people dealing with ALS, it was important to implement an approach that patients could access easily. McGeary highlights that the involvement of trusted caregivers will also help: “patients tell us that the clinic becomes an increasingly important part of their support as things progress, and this will enhance that connection.”

If results from the upcoming study at The Neuro prove that a teamed approach to mindfulness has value, she hopes to see whether the study may influence clinical practice in other environments, with an eye towards widely integrating mindfulness techniques into standard care for ALS. McGeary shares that “given that there is currently no cure for ALS, I think that any applicable skill set which helps maintain and/or improve quality of life for people living with ALS and primary caregivers may indicate a best practice approach within health care.”

An “auspicious” grant for future discovery

The Discovery Grant Program takes a holistic approach in ensuring studies that focus on quality of life for people living with ALS are considered for funding.” Dr. David Taylor, Vice President of Research for the ALS Society of Canada, explains: “We always want to make sure that the research we support has a comprehensive view – that in addition to addressing disease mechanisms and future treatments, we’re also making sure that people currently living with ALS are empowered to live better.”

This will be McGeary’s first time doing funded research of this type. She says the timing is right: “with the pandemic, healthcare professionals are experientially stepping into the world of uncertainty that people with severe diagnoses already live in; I hope that learning mindfulness in this context will translate into even greater empathy.” Even the name of the funding feels meaningful: “it’s auspicious to me that it is a Discovery Grant,” she emphasizes. “The movement toward understanding disease and care holistically is growing exponentially right now.” With three decades of work in the field, she has seen a shift towards a more interconnected model, with therapies like mindfulness gaining currency within traditional healthcare.

McGeary adds, “I’m an optimist, and I see this attitude of ‘discovery’ continuing. So being part of this Discovery Grant is very dear to me.”

Funding that makes a difference

The Discovery Grant Program makes these connections possible with a funding model that favours interdisciplinary collaboration, bringing the best minds together to tackle complex problems. A key component of the ALS Canada Research Program, Discovery Grants give promising novel ideas the fuel they need to gain traction; in 2021, up to eight projects will benefit from $1M in total funding.

Since 2014, ALS Canada’s partnership with Brain Canada has resulted in more than $23 million being invested in leading-edge ALS research that has helped further understanding of the disease. The Discovery Grant Program is designed to fuel innovation that will accelerate our understanding of ALS, identify pathways for future therapies and optimize care to improve quality of life for people and families affected by this devastating disease.

The Discovery Grant Program has been made possible by Brain Canada, through the Canada Brain Research Fund (with financial support from Health Canada) and the generosity of provincial ALS Societies, ALS Canada donors and community-based efforts, including 40 per cent of net proceeds from the Walk to End ALS. 

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