What factors do people with MS say help them as they get older?
The more we learn about healthy aging, the better equipped we will be to focus on important aspects of life now that can make a difference in our quality of life later. The number of people with MS who are older adults is increasing. That’s probably due to improved longevity and more effective treatments. But that means it’s more important to learn from their experiences and discover what they think helps them to live well and stay more independent.
Researchers in Canada—where MS is more prevalent—wanted to know what factors older people living with MS thought are most significant in contributing to healthy aging. So they asked 683 adults living with MS (78 percent female) who were older than 55 years (average age 64) and living with MS symptoms for more than 20 years. The majority of the participants in the study lived in their own home (96 percent) with a spouse or partner (71 percent) and required some assistance for activities of daily living.
At the end of the survey, participants were asked: “From your point of view, what are the most important things that help you live long and healthy with MS?”
The responses could be grouped into seven overarching themes that contributed to healthy aging with MS from participants’ points of view. These included social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances. The top three themes — social connections, attitude and outlook on life, lifestyle choices and habits, which accounted for 29, 27, and 23 percent of responses, respectively — are factors of life that are most easily influenced by personal choice and conscious actions.
In a much less formal survey, I asked our Facebook community: “What would you tell your younger self about aging with MS?” The responses squarely fell within the top three themes identified by the Canadian study.
- “Enjoy summer weather before it becomes the time of year you have to stay in air conditioning.”–Ann
- “[Living with MS is] like a marriage. You have rough times and you have better times, except when you have taken all you can take, you can’t just divorce it. Just try to make the best of it.”–Robert
- “Food choices are important. Look into nutrients, supplements. Stay away from ‘frankenfoods’ [i.e. genetically modified foods].”–Marion
It’s very interesting when we delve deeper into the seven themes identified as important factors to healthy aging with MS. The responses provide a roadmap of sorts that we can use to set priorities.
Social connections. Older people with MS value social connections with family, friends, spouses/partners, children, grandchildren, neighbors, and even pets. Activities outside the home provide opportunities for engagement and a sense of purpose. Social networks provide encouragement, opportunities for activity (both mental and physical), and help with activities of daily living. Young- and middle-aged people with MS should consider taking steps to foster and preserve social connections that include intergenerational links and reciprocal relationships with friends, family, and the greater community.
Attitude and outlook. Adopting ways of thinking — positive attitude and being optimistic, determination and perseverance, acceptance, humor, hope, and gratitude — that help to cope with challenges of MS are important to older adults living with the disease. In this study, maintaining one’s self-identity was highly valued among participants aged 75 and older. Authors suggest that people who adjust their goals to accommodate challenges are better able to preserve self-identity in the face of adversity. Younger people with MS should seek to foster and maintain a positive sense of self to carry with them through life.
Lifestyle choices and habits. Responses could be grouped into two categories: lifestyle choices and habits that affect the body (physical health) or purpose (meaning in life or mental health). Lifestyle choices that affect the body include healthy eating, exercise, keeping active, adequate sleep or rest, managing medications, alternative therapies, weight management, body awareness, and taking care of oneself. Activities contributing to a sense of purpose include hobbies, work, finding resources and information about MS, being outdoors, choosing to balance life’s demands, using technology, and traveling and visiting.
Health care system. Having access to high quality care is vital, and older people with MS value health care professionals that listen to their opinions, acknowledge their feelings, and encourage them.
Spirituality and religion. Participants described how faith and belief in God helped them cope with the challenges of living with MS, and organized religion was found to be a source of social support and an opportunity to help others through volunteer work.
Independence. Making adaptations at home allow older people with MS to remain independent. Strategies include using home health devices, wheelchairs, accessible vans, as well as making modifications to homes. Young- and middle-aged people with MS planning for aging in place should identify resources in their communities that allow them to remain engaged in healthy lifestyle choices and habits as their abilities change.
Finances. Although only two percent of responses related to finances, participants describe the importance of working and providing for their families, government funding for equipment and services, the role of pensions, long-term disability, and insurance, and the power of adequate finances to allow them to make choices about their health and to have the freedom to participate in activities they enjoyed.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.