Support for Life After a Stroke

More than 7 million Americans are survivors of a stroke, the “brain attack” that occurs when an area of the brain is cut off from normal blood flow. Every year in the United States, 800,000 people experience a new or recurrent stroke, and while some people recover completely from a stroke, nearly 70 percent of stroke survivors undergo rehabilitation to help recover from post-stroke disabilities such as limb weakness, paralysis, cognitive deficits or inability to speak.

Starting in the early 1950s, the American Heart Association pioneered stroke research and in 1998 founded its American Stroke Association (ASA) division to work with volunteers, researchers and other partners to prevent stroke, improve patient outcomes and maximize recovery from a stroke. The ASA and stroke associations in several other countries support World Stroke Day, October 29, and its 2018 theme, “Support for Life After Stroke.” This year’s campaign focuses on support and advocacy for stroke survivors and their caregivers.

“The American Stroke Association is the leading voice in the United Sates for stroke awareness and is devoted to saving people from a stroke,” said Dr. Mitchell Elkind, professor of neurology and epidemiology at Columbia University in New York City. “Stroke is the fifth-leading cause of death in the country, and the No. 2 cause of death worldwide. Stroke is also the leading cause of serious long-term disability in the U.S.”

Dr. Elkind is chair of the advisory committee to the ASA and a national board member of the American Heart Association. As a vascular neurologist, Dr. Elkind specializes in brain disease, particularly strokes and other conditions that affect blood vessels to the brain, and he explains that the ASA’s main focus is on: (1) stroke prevention, (2) treatment of people actively having strokes, and (3) recovery and life after a stroke. “We first learned a lot about how to prevent strokes, and more recently we learned how to treat them when they are occurring acutely, but the rehabilitation recovery is a bit of a black box still,” Dr. Elkind notes. “We are really just beginning to understand how to help the brain recover after a stroke.”

Key Challenges for Stroke Survivors

Recovery after a stroke is often a mix of hope and anxiety for patients and their families. Once a hospitalized stroke patient is stabilized, the individual can be moved to inpatient or acute rehabilitation, which requires several hours a day of therapy. Patients who do not meet the medical status or insurance requirements of inpatient rehab may be sent to a skilled nursing facility. The patient’s hospital medical team or personal physician can help with a referral to an accredited, reputable rehabilitation facility or home care therapist who can assist with further stroke care. Whenever possible, the goal for stroke patients is to return to their own safe, home environment.

Dr. Elkind, who is also an attending physician at New York-Presbyterian Hospital, one of the nation’s leading university hospitals, divides the challenges of stroke survivors into four main areas:

• Physical – “Physical challenges, like weakness, the inability to walk, a tendency to fall or trouble swallowing, affect daily activities,” Dr. Elkind said. “Pain can be a big problem after a stroke because a person’s shoulder is drooping, or they have pain from injury to the brain after a stroke, a central pain syndrome. Fatigue is also a common physical challenge after a stroke.”
• Communication – A stroke can leave a person with slurred speech or with aphasia, a language disorder that impairs one’s ability to speak or understand others. Cognitive changes post-stroke can also affect a stroke survivor’s social interactions because of decreased attention and ease of distractibility. Engaging with others is also hampered, as some stroke survivors cannot control inappropriate behaviors, or they repeatedly stay with one topic in conversation.
• Emotional – “Extremely common are emotional challenges like depression that occurs in at least a third of people after a stroke,” Dr. Elkind explains. “Anxiety is another. Some people have PTSD after a stroke the way you might after another adverse life event. Some people have episodes of laughter or crying. All those things take their toll.”
• Finances, Family, Social Roles, Etc. – Dealing with medical costs and loss of income during recovery certainly affects stroke survivors. It can feel overwhelming to learn new roles within the family and other relationships as well as adjust to one’s self-identity with a body that may not function the same way as it once did.

Help for Life After a Stroke

Recovery from a stroke depends on many factors including what section of the brain was affected, the overall health of the survivor, the survivor’s motivation to improve, and support from caregivers. Once home, patients may need ongoing rehabilitation through an outpatient rehab facility or through home-based therapy. Most stroke recovery happens within the first few months, but many survivors continue to make progress over time.

“The recovery curve after a stroke is steep, so the greatest recovery occurs early and it tends to plateau,” Dr. Elkind said. “But there’s still improvement for at least a year and probably longer after a stroke. Depending how hard people work at rehabilitation or are able to work at it, they can continue to see improvements, but it’s at a much slower rate. I encourage people to keep up their optimism and keep working at their recovery.”

Because the process for stroke recovery takes time, family caregivers are at risk for compromising their own health and responsibilities. “After a stroke, it is paramount that family caregivers develop a strong support system of medical staff, other family and friends, professional caregivers and community resources,” said Rosaleen Doherty, Co-Owner of Right at Home Boston and North. “One of the greatest needs outside post-stroke care and help with everyday activities is giving family members a break — some much-needed respite care for themselves such as going to a movie or out to lunch with friends.”

Doherty recommends that family caregivers stay in touch with the hospital case manager or social worker to learn about available rehabilitation services and community resources including stroke survivor and caregiver support groups. Doherty also shares these stroke care tips:

• Be aware that a change in condition can spur a change in treatment. A decline in a stroke survivor’s physical function may mean the loved one is eligible for more services.
• Consider a rehabilitation tune-up. “After initial rehabilitation, many stroke patients can use a bit of a tune-up, periodically doing more therapy or trying another course of therapy,” Dr. Elkind advises. “A good ongoing relationship with either a neurologist, physiatrist or rehabilitation specialist can be helpful for families, as well.”
• Stay updated on insurance coverage. Clarify what inpatient and outpatient services are covered and for what length of time, and what out-of-pocket expenses can be expected.

Regaining Health Post-Stroke

Stroke survivors are at higher risk for having another stroke if medical recommendations are not followed. The good news is that most ui;strokes can be prevented. Dr. Elkind and the medical community press for prevention of strokes and offer encouragement to the older population who face greater risk for stroke.

“There are studies that show that regular walking every day for as little as 20-30 minutes can reduce the risk of stroke substantially, so the message I like to give older folks is that they don’t have to be on a treadmill or go to the gym or be swimming,” Dr. Elkind stresses. “Whatever people can do physically is great, not only for reducing the risk of stroke, but also it’s one of the only things that’s been shown to benefit late-life cognitive decline and dementia, too. The more people can do with exercise, the better.”

Dr. Elkind points out that roughly 30 percent of the elderly will have smaller strokes, called transient ischemic attacks (TIAs), that can contribute to cognitive loss, gait difficulties, incontinence and other effects of aging. “It’s those tiny little strokes accumulating over time that lead to a huge burden of disability,” Dr. Elkind adds. “And that’s why it’s so important to focus on risk factors and prevention and a healthy lifestyle — exercise, eating right, not smoking, and taking medications for things like high blood pressure, diabetes and high cholesterol.”

And for the future of post-stroke care and rehabilitation, researchers are making promising advances that will affect the entire stroke community. “There are a lot of new developments in the recovery area that involve brain stimulation with electricity, or stem cells, robotic devices, and computer interfaces that stroke patients can use to train themselves to do things,” Dr. Elkind notes. “That’s a whole developing area that is exciting. We cannot remake a part of a brain that’s been severely damaged, of course, but we are beginning to help out along the margins.”

About Right at Home of Boston and North

Right at Home Boston and North is locally owned and operated by Rosaleen Doherty and Jay Kenney, serving communities in the North Shore, Merrimack Valley and Greater Boston Areas for the last sixteen years. Right at Home offers in-home companionship, hospice supportive care, personal care and assistance to seniors and adults with a disability who want to continue to live independently. Our corporate office is located at 19 Front Street in the heart of downtown Salem, MA. For more information, contact Right at Home of Boston and North at www.rightathome.net/salem-marblehead, 978-744-5151 or by email at info@rightathomemass.com. To sign up for Right at Home’s free adult caregiving e-newsletter, Caring Right at Home, visit http://caringnews.com.