Living With Muscular Dystrophy as a Senior

Many older adults are familiar with muscular dystrophy, likely due to the old “Jerry Lewis MDA Labor Day Telethon” that ran every year on national television. Its rather simplistic and stereotypical portrayal did not necessarily help the general public understand that muscular dystrophy (MD) is actually a group of neuromuscular diseases caused by a gene mutation resulting in progressive weakness and loss of muscle mass. The severity of these symptoms and the incidence of complications vary greatly from one type of MD to another and from one individual to another. The telethon focused on the most common form of MD, Duchenne muscular dystrophy, which mostly affects young boys. However, it ignored the fact that various types of MD affect all genders, ages, and races. While there is no cure for MD, treatments and in-home care can help delay or lessen debilitating effects and help improve quality of life.

Late-Onset Muscular Dystrophy in Seniors

Even some older adults end up with MD. For example, distal myopathy appears between ages 35 and 60, while Welander distal myopathy and Finnish (tibial) distal myopathy show up between ages 40 and 50. While these diseases are diagnosed in middle age, individuals will often live several years, even a few decades, past middle age and thus contend with MD in their senior years. The portrait of an older adult living with MD is very different than that of a child, which became the disease’s poster image.

The complications of progressive muscle weakness that comes with MD can include:

• Trouble walking. Some people with muscular dystrophy eventually need to use a wheelchair.
• Trouble using arms.
• Shortening of muscles or tendons around joints (contractures), which can further limit mobility.
• Breathing problems. Some individuals with MD might eventually need a breathing assistance device (ventilator).
• Curved spine (scoliosis).
• Heart problems.
• Swallowing problems, which in turn can cause nutritional shortfalls and contribute to aspiration pneumonia. A feeding tube is sometimes necessary.

For individuals with mild or late-onset muscular dystrophy, living to be a senior citizen is a distinct possibility. Seniors with MD generally need constant support. Along with their muscular problems, older adults with MD often experience challenges with their coordination and balance. Some may contend with speech, eyesight, or swallowing difficulties.

• Safe Movement: If the senior has mobility issues that are severe enough, they will need assistance transferring in and out of bed, a wheelchair, and vehicles. Canes, walkers, and scooters are potential mobility aids that may be required to ensure safe movement.
• Daily Activities Support: From personal grooming to dressing and eating, a senior with MD may need a high level of personal care, assistance, and attention.
• Exercise: Only a physician can devise a tailored exercise program for someone with MD, and then the family or professional caregiver can facilitate its implementation at home.

Individuals with a family history of MD are at higher risk of developing the disease or passing it on to their children.

Sarcopenia in Older Adults

There is a much more common neuromuscular disease, sarcopenia. It is not MD specifically, and it explicitly occurs in older adults. More than 20% of people over age 70 have sarcopenia. It is a type of muscle atrophy or loss of muscle tissue and muscle strength. While sarcopenia and MD share muscle loss as a feature, the processes behind them are different. Everyone experiences some muscle loss as they age, but sarcopenia accelerates that process. There are ways to treat and even reverse the effects of the condition.

Poor nutrition and a sedentary lifestyle are linked to sarcopenia, as are chronic diseases and low hormone levels. Exercise or physical therapy and an improved diet can help improve strength and mobility. Depending on the cause, hormone therapy or anti-inflammatory drugs may also be prescribed.

Being an MD Caregiver

Because many forms of MD first appear in childhood, adolescence, or young adulthood, and these patients sometimes live into middle age or beyond, parents often end up performing caregiving roles well into old age. If a person has been an MD caregiver for many years, that practical experience does lessen the load in terms of how to deliver care and what to expect. But fatigue also comes into play with years of uninterrupted care. Because MD is progressive and the features of that progression vary from person to person, it can seem as if one is always waiting for the next crisis or complication to appear. It can feel like an endless journey of setbacks, treatments, doctors’ visits, and only the smallest victories.

When a family member or friend takes on a caregiving role for someone in their life with MD, it’s important they learn as much as they can about the type of MD their loved one has in order to know its features, complications, progression, and treatments. That means closely consulting with the loved one’s primary care physician, specialist physician, and pharmacy team members. If the loved one with MD hires in-home care support, whether for respite purposes or as part of the care team, they need to ensure the professional caregiver is fully informed about their particular needs.

Getting Help for MD Family Caregivers

Because caregiving can be such a demanding role, experts advise that family caregivers devise and follow a self-care plan for their own physical, mental, and emotional health, including built-in respite breaks when someone else gives them time away from their caregiving duties.

The Muscular Dystrophy Association has chapters across the nation, and these centers are important resources for family caregivers who need information and support.

If an older person with MD is unable to perform routine daily living tasks and a family member or friend is not able or available to assist them, a specially trained caregiver from an agency such as Right at Home may be the answer to provide specialized or comprehensive support. A professional caregiver can assist with daily living activities, such as getting in and out of bed, using the toilet, showering/bathing, dressing, eating, medication supervision, chores, errands, and whatever else is needed. If you are choosing a professional in-home care agency, make sure it employs caregivers trained to handle the disabilities that your older loved one with MD presents. The professional caregiver should also be well versed in recognizing and responding to any emergencies or complications that may arise. Being your loved one’s advocate is essential to getting them the care they deserve.

How Right at Home Can Help

Right at Home offers a wide range of services to help those with chronic conditions such as muscular dystrophy. Our caregivers can help just a few hours a day, a few days a week, or even provide ongoing 24/7 care. Plus, family caregivers can benefit from respite breaks to refresh and recharge themselves. To find out more, use our office locator to contact the office nearest you.

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