Recently, Stanford University neuropsychologist Penelope Zeifert, PhD, member of the American Academy of Neurology (AAN), got a call from a man whose elderly wife is being cared for at Stanford Hospital and Clinics. (A neuropsychologist evaluates the effect of brain illness or injury on mental performance.) “The husband said to me ‘She's been receiving care here for a while, but I just learned that I'm a ‘caregiver.’ I didn't have a name for it before. I knew I was on my own and overwhelmed, but my wife's psychiatrist said that I needed to talk to somebody about my own needs, not just hers,’” Dr. Zeifert recalls.
When you're the caregiver for someone with a serious neurologic condition—especially one that's chronic—you need to “put on your own oxygen mask first,” as they say on an airplane. In other words, you can't care for someone else if you don't take care of yourself first. With that in mind, Neurology Now's new regular “For the Caregiver” department—of which this is the first installment—focuses entirely on the issues that caregivers face and the tools and support they need.
You may have been thrust into the role of caregiver for a loved one with a neurologic condition suddenly—perhaps as the result of a traumatic brain injury or stroke. Or it may have happened more slowly, with the progression of multiple sclerosis, Alzheimer's disease, or Parkinson's disease. Either way, you will need a team of experts to help you coordinate your loved one's care. These professionals can be of enormous help, but sometimes just figuring out who is involved in your loved one's care, and what they do, can seem insurmountable.
To help you, we've identified some of the key healthcare professionals involved in caring for someone with a serious neurologic condition. Here's how you can work with them.
THE NEUROLOGIST AS HEAD COACH
Think of yourself as the manager of the team—the person organizing everything from behind the scenes. The first thing a manager does is find the right head coach—someone who knows what everyone else is doing. Often, that is the neurologist—a doctor with expertise in diagnosing, treating, and managing disorders of the brain and the nervous system. The American Academy of Neurology's “Find-a-Neurologist” tool (patients.aan.com/findaneurologist) can help you locate a neurologist in your area.
Your loved one's neurologist may be his or her primary healthcare provider, especially if you live close to a hospital with a good neurology program. If you don't, the primary care doctor may be your main provider and coach, consulting frequently with your neurologist.
“The main thing is that everybody who is caring for your loved one keeps in touch with each other. You need a central person, someone who keeps track of all of the services and interventions and medications being used,” says Dr. Zeifert. That person is the primary healthcare provider.
THE NEUROPSYCHOLOGIST AS ASSISTANT COACH
The next expert that many people with neurologic conditions may need—especially those who have problems with memory or cognitive tasks—is a neuropsychologist, like Dr. Zeifert.
“Neuropsychologists evaluate the effect of brain dysfunction on mental performance and behavior, using standardized tests as well as information about functioning from the patient and the family,” Dr. Zeifert says. “Often, we assist the neurologist with the diagnosis. Then, we help the patient and the family focus on strengths and weaknesses the person has, including how to cope with the person's changed functioning and how to find outside support.”
For example, if your loved one has dementia that has impaired executive function, he or she will have difficulties with motivation, planning, problem-solving—in other words, executing activities. (Dementia can be caused by Alzheimer's disease, frontotemporal degeneration, vascular disease, Parkinson's, and other diseases. Go to bit.ly/NN_Dementia for the full collection of Neurology Now articles on dementia.)
“In that case, you're going to have to be the person's frontal lobes, in a sense,” says AAN member Janet Jankowiak, MD, a geriatric neurologist and neurorehabilitation specialist, retired from clinical practice in Boston, MA. (The frontal lobes are involved in problem solving, judgment, impulse control, and several other important functions.) “The caregiver's ability to organize, strategize, and solve problems has to be very good. Neuropsychologists can help by recommending strategies, memory aids, and ways to organize and set things up,” Dr. Jankowiak says.
For example, a neuropsychologist might recommend increasing the degree of structure in everyday activities and making a clear daily routine for the person with dementia. In addition, a neuropsychologist might suggest that the caregiver help minimize background noise and distractions for the loved one.
If the person is experiencing symptoms of depression—which is common with dementia—he or she may need a psychologist or counselor who specifically deals with the adjustments, losses, and grief that come with having a serious neurologic illness. The neuropsychologist can also help with that. But if the depression becomes severe, at some point your loved one may need a psychiatrist or neuropsychiatrist, who can prescribe specific medications.
Just as athletic teams hire trainers and physical therapists, your team will benefit from therapy specialists, such as physical and occupational therapists. Your neurologist or neuropsychologist can often connect you with good ones in your area.
Physical therapists deal mostly with strength, balance, and mobility. “They can help restore function after a fall, but also work to prevent disability,” says Dr. Jankowiak.
Occupational therapists help with the activities of daily living, such as dressing, eating, bathing, and using tools like telephones and implements for cooking or housekeeping.
“If your loved one has been in the hospital, physical therapists and occupational therapists can sometimes make home visits before he or she is discharged to identify obstacles and potential hazards in the home—even something as simple as a dust ruffle on the bed that someone might trip over,” Dr. Jankowiak says.
Speech pathologists assess and treat language and communication problems. “Cognitive deficits often involve language, and there's so much more to language than just speaking,” explains Dr. Jankowiak. “A good speech pathologist can help with the non-verbal forms of communication as well,” she says.
Speech pathologists also do swallowing studies—which assess how well someone can move the muscles of the tongue, mouth, and throat—and judge the risk for aspiration when chewing and swallowing foods and liquids. “This is very important for many people with neurologic impairments,” says Dr. Zeifert.
Physiatrists are medical doctors who specialize in rehabilitation. They are experts in nerve, muscle, and bone, and can help restore some lost mobility or preserve function as long as possible.
Pain management specialists have training in evaluation, diagnosis, and treatment of all different types of pain. Sometimes, this may be a neurologist or a physiatrist; anesthesiologists also can specialize in pain management.
An orthotist works with the physician to design custom devices, such as braces and shoe inserts, for both the upper and lower extremities. Orthoses can aid in mobility and ease discomfort.
Professional sports teams have a front office with administrative staff, and you'll need similar support. If your loved one is receiving care at a good-sized hospital, a case manager may be available to help you and the neurologist or primary care provider keep all the balls in the air with different specialists, appointments, and services. Ask the hospital social worker whether this is available. Your local Agency on Aging (bit.ly/Agency_On_Aging) also should have information on care management.
You might also be able to find a case manager on your own. Insurance sometimes pays for these services. You can get more information about case management from the Case Management Society of America (cmsa.org) or the National Association of Professional Geriatric Care Managers (caremanager.org).
Other good sources of care coordination help are the Family Caregiver Alliance (caregiver.org), whose online Family Care Navigator tool helps you find services such as respite care and support groups; and the National Family Caregivers Association (caregiveraction.org), which has a volunteer peer network in more than 40 states.
Side by Side in Song
Leonard Trent stands next to the piano, dapper in a blue-and-white striped button-down shirt. In a rich baritone, he sings the closing bars of Noel Coward's “I'll See You Again,” popularized by Frank Sinatra: “Though my world may go awry, in my heart twill ever lie just the echo of a sigh … Goodbye!” As the final notes echo, the crowd in the sanctuary of St. Peter's Church at 54th and Lexington Avenue in New York applauds wildly.
This isn't your typical Manhattan concert, although Trent's vocals sound professional on the concert video. Trent and his close friend, Phyllis Bowling, sang regularly with “The Unforgettables,” a chorus made up of people with dementia and their caregivers. The chorus was started in 2011 by Mary Mittelman, PhD, director of the Psychosocial Research and Support Program at the Center for Cognitive Neurology at New York University's Langone Medical Center.
“Leonard sang a solo in every single concert,” says Dr. Mittelman. “After the first one, I asked him, ‘Where did you take lessons?’ He said, ‘I never took a lesson in my life! I started singing when I joined this chorus.’” (Trent passed away in the fall of 2013, of an illness unrelated to his dementia.)
Dr. Mittelman was inspired to start the chorus after evaluating “Meet Me at MOMA,” a monthly forum at the Museum of Modern Art in which specially trained educators guide people with dementia and their family members or caregivers through some of the Museum's exhibits.
“I was completely convinced of its effectiveness,” says Dr. Mittelman.
Dr. Mittelman secured a small amount of funding and started a planning group with colleagues, including Jan Maier and Dr. Concetta Tomaino, co-founder of the Institute for Music and Neurologic Function. She found rehearsal space in St. Peter's Church and put out the word through support groups run by New York University counselors and the local Alzheimer's Association. Twelve pairs of people with dementia and their caregivers showed up for the first rehearsal in June 2011. Today, the group has 14 or 15 pairs and no room for more unless they can find money for a second chorus.
“We had our first concert in September 2011, and we've performed about three times a year since then,” says Dr. Mittelman. “Nobody has dropped out unless someone has died.”
The group rehearses once a week for two hours with conductor-directors Tanya Papayannopoulou and Dale Lamb.
“It has many benefits, I think, beyond the singing together,” says Dr. Mittelman. “The social support is amazing. But what's truly unexpected is the fact that people with dementia are learning approximately 18 new songs for each concert. Not just songs they already knew—new songs too. This challenges the stereotype that people with dementia can't learn.”
Group members chose the name “The Unforgettables.” Together with the conductors, they select their own songs—a wide-ranging repertoire of classics, standards, Broadway tunes, and contemporary music.
“While we were rehearsing for the very first performance, an older lady walked in with her walker and didn't seem able to speak,” says Dr. Mittelman. “At the end of the rehearsal, the conductor asked for suggestions about what to sing. The woman suggested ‘Bei mir bist du Schon’ and stunned the conductor by belting out the first verse. At the Unforgettables' second concert, the woman sang all the song's verses in a solo.”
A pilot study conducted by Dr. Mittelman has hinted at the cognitive and emotional benefits of participating in the chorus.
Those benefits aren't just for the people with dementia. “Caregiving is stressful. But in that room, they're all having a good time,” says Dr. Mittelman. “I want the caregivers to feel like they're learning or they won't come back. This isn't a sing-along—it's a chorus that everyone's going to learn from.”
The Unforgettables have inspired the Wisconsin-based Helen Bader Foundation to fund a similar chorus in the Milwaukee area, which will be modeled on the New York University program. Dr. Mittelman hopes many more will follow. “It's a statement about the many different dimensions of our humanity. While dementia clearly impairs some very important parts of us, other important parts of us remain, and those should be nurtured.”
Finally, don't overlook support groups. You can find many of them through patient advocacy organizations. (See our list of patient advocacy groups at bit.ly/NN_AssistanceDirectory.) Support groups are an essential piece of the care-coordination puzzle, according to Dr. Jankowiak. “Physicians and care teams can be very supportive, but we don't know all of the day-to-day challenges that you're really going through. Someone else who has been there often has wonderful tricks, ideas, and solutions for making all sorts of things easier, that you might never think of. And you feel like part of a community—you're working together.”