A Family’s Guide to Caring for a Parkinson’s Patient at Home

Parkinson’s symptoms: What to expect

• Tremors (trembling)
• Bradykinesia (slowness of movement)
• Stiffness of the limbs and body
• Trouble initiating or continuing movement
• A forward-leaning gait
• Slow movements
• Impaired balance and reduced coordination
• Depression and emotional changes
• Trouble swallowing, chewing, and speaking
• Sleep disruption

• Age. While some people are diagnosed with early-onset Parkinson’s before 50, age increases the likelihood of diagnosis.
• Sex. People born male are 1.5 times more likely to have Parkinson’s than people born female.
• Environmental causes. Exposure to certain chemicals, metals, and organic pollutants may be linked to increased Parkinson’s risks. Various agricultural pesticides may be linked to neurodegeneration that leads to Parkinson’s, according to research published in the American Journal of Epidemiology.
• Head injuries. Repeated head trauma may increase a person’s Parkinson’s risk.
• Genetics. Certain altered and mutated genes can increase the risk of developing Parkinson’s disease.

Therapies used to treat Parkinson’s

• Exercise. Increased physical activity can help people with Parkinson’s maintain their strength, mobility, and ability to perform daily tasks, according to the Parkinson’s Foundation. Not only can exercise address symptoms — such as balance issues, weakened grip strength, and tremors — it may also have a neuroprotective effect. Studies have shown significantly increased cortical gray matter — or growth of the part of the brain that controls movement, memory, and emotion — in seniors who exercise regularly, according to research published by the American Academy of Neurology. This can help combat the deterioration often caused by PD.
• Occupational therapy. Occupational therapists help people maintain, recover, or adjust the skills used for ADLs and work. They focus on a client’s individual needs and will adjust therapies based on Parkinson’s progression, according to the American Occupational Therapy Association. Occupational therapy can help Parkinson’s patients retain their ability to dress, use the restroom, sit and stand without assistance, and participate in the activities they enjoy.
• Movement therapy. Parkinson’s affects balance and motor skills, so certain movement therapies may be able to help counteract those effects, according to Johns Hopkins. For instance, the Alexander Technique focuses on posture and balance, while the Feldenkrais Method aims to retrain the body to complete difficult movements.

Drugs used to treat Parkinson’s disease

• Carbidopa-levodopa is “the most effective and well-tolerated drug the medical profession has to offer at this time,” according to University of Michigan Health. This medicine helps with bradykinesia — slowness of movement, weakness, and tremors — but generally does not prevent falls or non-movement-related symptoms.
• Dopamine agonists “mimic the actions of dopamine in the body to aid in symptom relief,” according to Healthline. This family of drugs can be helpful in the early treatment of Parkinson’s and may be available in pill, injection, or patch form.
• Monoamine Oxidase BInhibitors — often called MAO-B inhibitors — improve dopamine deficiency and have fewer side effects than many medications used to treat Parkinson’s symptoms. “They are recommended as monotherapy in the early stages of the disease and as add-on therapy to levodopa in advanced Parkinson’s disease,” according to the journal CNS & Neurological Disorders.
• COMT inhibitors don’t actually treat the effects of Parkinson’s disease — they’re used primarily to prevent levodopa from wearing off and metabolizing too quickly. The use of COMT inhibitors “significantly improves the clinical benefits” of levodopa, according to the journal CNS Drug Reviews.

How to help someone with Parkinson’s: Actions you can take as Parkinson’s disease progresses

• Learn how and when to offer help. Caregiving begins with the recognition that your loved one needs help. But it’s important to recognize that they may not want help yet. Your parent with Parkinson’s disease has likely been independent for decades, and they may be hesitant to let you step in. Sometimes, the best course of action is to plan for the future while offering your relative the help they ask for now. “It was really hard for my dad to let us help him with a lot of things. He wanted to cook for himself and even to keep mowing the lawn at first,” Liz said. “We took things slowly — ordered some premade ingredients he could put together, and encouraged him to work on other parts of the yard, like the bird feeders, while my son mowed and he supervised.”
• Stay educated. Search for reliable sources about Parkinson’s and stay up to date on current trends and treatments.
• Monitor symptoms. Because it’s a progressive disease, Parkinson’s symptoms can get worse over time. Monitor changes in your loved one’s balance, coordination, tremors, fatigue, and speech. It can be helpful to keep a diary or even a note on your phone to track changes. “It was actually kind of shocking how quickly some of it happened,” Liz explained. “One day he was reading the newspaper like normal, the next it was shaking in his hand. [Symptoms] would come and go, but started happening a lot more often.”
• Consider mental health. Up to 50% of people with Parkinson’s disease experience depression or emotional distress, according to the journal Current Neurology and Neuroscience Reports. These mental health concerns can also affect physical decline, so it’s important to encourage your loved one to seek treatment from a trained mental health professional.
• Be patient. Your parent with Parkinson’s disease may not be able to move as quickly as they used to, and their speech volume may decrease or vary. Don’t rush your loved one to answer questions quickly, and match your pace to theirs when walking together. As Parkinson’s progresses, more aides may be required. Encourage your parent to work with a speech therapist or use a walker or wheelchair to be as comfortable as possible.
• Make a difference. Parkinson’s affects the lives of thousands of people in the U.S. each year — both patients and caregivers. Consider getting involved in an organization that raises money for a cure, like the Michael J. Fox Foundation, or one that helps educate people about Parkinson’s, like the American Parkinson’s Disease Association. “One of the best things we did was go on this thing called Moving Day in Chicago. We met so many other people going through the same things as we were, and it was a nice slow walk so at the time my dad could participate in something bigger than himself,” Liz said.
• Maintain your relationship with your parent with Parkinson’s disease. Focus on your relationship with your loved one. Remember that, even as Parkinson’s progresses, they’re still the person you know and love. Take the time to talk with your parent about how they’re feeling. It may help you better understand what they’re going through. These talks can allow you to share your emotions and find ways to help simultaneously.

Assistive technology for Parkinson’s patients

• Bedroom: bedrails, adjustable blanket support, motion lights, intercom communication device
• Bathroom: tub seats or shower chairs, handheld showerhead, raised toilet seat
• Kitchen: rubber shelf liners, pot stabilizers, kitchen bench, reach extender
• Closet: lowered hanging rods, long-handled shoe horns and sock donners, button hooks

• Find someone to simply listen. The slower pace of daily life with Parkinson’s and the changing nature of  your loved one’s abilities can make planning a challenge, all on top of the normal challenges of daily life and your relationship with the person you’re caring for. It’s important that caregivers have an appropriate outlet for their feelings. Don’t be afraid to open up to someone you trust, whether it’s a friend, sibling, or therapist. Expressing your feelings can reduce stress and ensure you’re not keeping the burden to yourself.
• Find a support system. Online and in-person support groups can help you connect with others in your same situation. You can search for Parkinson’s resources near you with the Parkinson’s Foundation ZIP code tool or by calling the Parkinson’s Foundation Helpline at 1-800-473-4636.
• Manage stress. Having a parent with Parkinson’s can be life-changing, and learning to cope is vital. Be sure to take time to do the things that you love. Take a walk in a nearby park, chat with a friend, binge-watch your favorite TV show, or have a hot bath. Making time for yourself can help prevent long-term caregiver burnout.
• Know your caregiving limits. As Parkinson’s progresses, so do your responsibilities as a caregiver. You may be comfortable helping a parent with cooking and cleaning, or providing transportation, but you may not be ready or physically able to help them bathe or use the restroom. Take the time to consider how you’re prepared to help, and identify the point that you’ll need additional assistance. “I had my son still at home to think about,” Liz said. “We weren’t ready to totally change up the house and make it so the shower had a bench and install a stair lift. We just didn’t have the space, but I knew my dad was going to fall if we didn’t do something.” Liz’s dad ended up moving to a nearby memory care community, Lombard Place Assisted Living and Memory Care. At first, the transition was difficult, but, over time, the community was able to help with his mobility and dementia symptoms. “Before the pandemic, I was going by every week, and now we’re starting to get back to that,” she said. “I can tell that despite all the care I put in for years, I wouldn’t be able to do it now, and he’s happy getting the help he needs there.”

• Assisted living for Parkinson’s disease. Assisted living for Parkinson’scan provide complete care for your loved one. From stimulating activities to in-house physical and occupational therapy visits, communities offer specialized amenities to assist your parent with Parkinson’s disease. Safety features can help prevent falls, while regular exercise classes can help reduce Parkinson’s symptoms. It’s important to keep in mind that many assisted living communities have entry requirements, which may include the ability to transfer from a wheelchair to a bed independently, so assisted living may not be an ideal option for loved ones with later-stage Parkinson’s disease.
• Home care for Parkinson’s. If you’d prefer to continue caring for a love one with Parkinson’s at home but can’t address all of your loved one’s needs independently, home care can help. Home care aides can assist with ADLs as well as meal prep and transportation inside the home. In the early stages of Parkinson’s you may just need a few hours of help a week. As your parent’s disease progresses, full-time assistance may become necessary. When interviewing home care aides, be sure to ask if they’re familiar with the ins-and-outs of Parkinson’s caregiving. If your loved one is experiencing dementia symptoms, seek an aide skilled in memory care.
• Memory care for Parkinson’s. Parkinson’s in elderly adults is often accompanied by dementia symptoms that worsen over time. Memory care communities are designed to fit the unique needs of seniors experiencing memory loss or any cognitive decline. Regular activities, therapies, and stimulation can improve your loved one’s quality of life, even as Parkinson’s progresses.
• Nursing home care for Parkinson’s disease. Nursing homes care for seniors with debilitating mental or physical conditions who require around-the-clock medical care. If your loved one’s Parkinson’s has progressed to the point of total immobility, it may be time to look into nursing home options. Make sure the facility is well-versed in caring for people with Parkinson’s disease.