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Pilot study tells two stories of aging with MS

By Debra L. Beck

credit: KatarzynaBialasiewicz/Getty Images

For individuals with multiple sclerosis the experience of aging appears to follow along one of two paths – some people feel their preexisting disability gives them an advantage in coping and tolerating age-related difficulties, while others feel more acutely the double burdens of MS and aging. 


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Two perspectives on aging

Interestingly, what appears to impact the path is the age at diagnosis. When queried about their aging experiences, those diagnosed with MS in early adulthood reported less impairment from aging, whilst those diagnosed in middle age reported a sharp progression of age-related and MS symptoms.

“What really struck me was that there were two very different stories. Some of the people diagnosed younger felt that having had, essentially, aging experiences in their 20s and 30s kind of got them used to it, and they described the aging experience as the boomers catching up with them or finally feeling just like everyone else,” said Emma V. Richardson, PhD, a postdoctoral fellow at the University of Alabama at Birmingham.

“They didn’t feel with aging that they were having symptoms that really impacted their quality of life,” she added. 

One the flip side, Dr. Richardson found that, in those who were diagnosed later in life, the burden of MS and aging was cumulative, with aging making their MS worse and vice versa. Many reported a sharp progression of age-related and MS symptoms, but stated that “everyone has something” and perceived the diagnosis of MS was less impactful in older age with regards to what is expected at this life stage.

Despite most participants reporting a continued progression of physical and cognitive deficits, those diagnosed younger were more likely to express that having health problems was “normal” over 60, resulting in a sense of belonging that they had not experienced since being diagnosed. The investigators did not measure illness severity.

Dr. Emma V. Richardson

Dr. Richardson noted that many of those diagnosed at a younger perceived that they were aging more successfully than their peers without MS because they had developed health-enhancing behaviors after their diagnosis that were serving them well in later life, including coping strategies and diet and exercise habits.

Concerns remained, however, regarding whether a new physical or cognitive experience was aging or MS, what the future holds regarding losing independence, losing spouses and caregivers, and growing “too old” such that quality of life is completely diminished.

“It’s interesting to see what the experiences of aging looks like through a different lens. I think that maybe what we’re seeing is that at a point in life where you might perceive yourself as more vulnerable and fragile, you might be more impacted by the blow of being diagnosed with MS, whereas when you’re feeling more sturdy and able to conquer the world, your ability to bounce back and cope is much greater,” said coinvestigator Robert W. Motl, PhD, in an interview.

I know even for myself, as I’m about to turn 50, I’m starting to see some potential chinks in the armor and it’s daunting,” he added.

Dr. Motl is the director of research in the department of physical therapy at the University of Alabama at Birmingham as well as the project director for the Healthy Aging Through Lifestyle in Multiple Sclerosis Center at UAB, who funded this study.

Dr. Richardson’s and Dr. Motl’s study was presented as an abstract at the virtual annual meeting of the Consortium of Multiple Sclerosis Centers in late May.

Dr. Robert W. Motl

Qualitative study of aging to inform interventions

“About 15 years ago we started to think more about the changing demography of MS. Because MS has a young age of onset, we tended to think of it as a disease of young people, but as the population ages and as life expectancy for individuals with MS approaches that of average lifespans, we started thinking about how older adults with MS versus older adults without MS experience aging and how we might help them age better,” said Dr. Motl.

 To gain a better understanding of the experiences of aging with MS, Dr. Richardson, conducted semistructured interviews with 40 individuals with MS aged 60 years or older. She then took that qualitative data and applied a pluralistic analysis approach utilizing phenomenological and narrative traditions.

“The focus of this qualitative research was to create a patient-informed empirical foundation that would then help us develop interventions that really targeted what people older people with MS experience, and what they need to do to improve not this their quantity of life, but also quality of life,” she said in an interview.

“These are only two stories of aging with MS and many more exist. These are not absolute but highlight that aging with MS is as complex and unique an experience as every experience with MS,” she added.

Participants were asked about their life experiences, experiences with MS, experiences aging with MS, perceptions of wellness, and concerns regarding aging with MS. The data collected have, thus far, resulted in two peer-reviewed papers, both of which are currently under review.

This study is only the start. “The HALT MS Center is all about trying to create the evidence base on physical function, cognitive function, psychological function, health and wellbeing in older adults with MS,” said Dr. Motl.

He added that more research is planned that will focus on using this knowledge base to design interventions to maintain quality of life and ensure successful aging in older persons with MS.