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

By Claire SamuelsMarch 4, 2022
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Having a parent with Parkinson’s can be challenging, especially as the disease progresses. You may not know what to expect or how to move forward. Luckily, there are resources and tips available to help you and your family navigate the diagnosis together.


In this article:


What is Parkinson’s disease?

Parkinson’s is a movement disease that affects almost 1 million people in the U.S. and over 10 million people worldwide, according to the Parkinson’s Foundation. The likelihood of PD increases with age, which means that as the population gets older, instances of Parkinson’s will increase, with estimates of nearly 1.2 million U.S. diagnoses by 2030.

PD is progressive, which means it gets worse over time. The disease causes neurons — nerve cells — to deteriorate in the part of the brain that controls movement, balance, and decision making, according to Harvard Health Publishing.Healthy neurons produce a neurotransmitter called dopamine that the brain needs to regulate movement. In people with Parkinson’s disease who have weakened neurons, dopamine production is reduced, leading to impaired mobility and coordination.

Parkinson’s symptoms: What to expect

Parkinson’s symptoms vary from person to person. Sometimes, early symptoms of PD may be dismissed as normal effects of aging, according to the National Institute on Aging. The onset of Parkinson’s in the elderly may be subtle — slower movements, impeded coordination, and mild tremors may not be particularly noticeable at first. Symptoms often begin on one side of the body but will likely come to affect both sides as the disease progresses.

Some symptoms of Parkinson’s may include the following:

  • 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

Parkinson’s symptoms by stage

During the early stages of the disease, Parkinson’s symptoms are often mild and don’t interfere much with daily life. For this reason, diagnosis may be delayed, according to Cleveland Clinic. As PD progresses, symptoms become worse. In the middle stages, balance problems and falls become more common, and tremors may increase. While people can remain generally independent, activities of daily living (ADLs) can become more difficult.

For someone living with Parkinson’s, help at home eventually may be necessary, as standing and walking may become harder over time. By the time PD reaches its later stages, dementia, hallucinations, and delusions are likely. Most people can’t move independently when the disease reaches that point, and full-time nursing or family care becomes required.

What are some causes of Parkinson’s disease?

Multiple risk factors may contribute to PD. Scientists still aren’t sure why neurons in Parkinson’s patients weaken and produce lower levels of dopamine, according to Harvard Health Publishing. Researchers continuously note the following factors that affect Parkinson’s risk:

  • Age. While some people are diagnosed with early-onset PD before 50, age increases the likelihood of diagnosis.
  • Sex. People born male are 1.5 times more likely to have PD 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 PD, according to research published in the American Journal of Epidemiology.
  • Head injuries. Repeated head trauma may increase a person’s PD risk.
  • Genetics. Certain altered and mutated genes can increase the risk of developing PD.

What is used to treat Parkinson’s disease?

There’s currently no known cure for PD, but a combination of medications, therapies, lifestyle changes, and, in severe cases, surgery, can help someone with Parkinson’s disease lead a longer, more comfortable life.

Therapies used to treat Parkinson’s

Nonmedical interventions can help someone with Parkinson’s disease maintain their strength and mobility, and may even slow negative mental effects. Some therapies used to treat PD include the following:

  • 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 PD progression, according to the American Occupational Therapy Association. Occupational therapy can help PD patients retain their ability to dress, use the restroom, sit and stand without assistance, and participate in the activities they enjoy.
  • Movement therapy. PD 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

Medications can help manage problems with limb movement, mobility, and tremors. Since Parkinson’s in the elderly varies from person to person, your loved one’s doctor will likely prescribe medications based on their individual symptoms and medical history. All medications have side effects, so it’s important to talk to a medical provider about whether a certain drug is right for your parent with Parkinson’s disease.

Since people with Parkinson’s disease have low brain dopamine concentrations, many of these medicines increase or substitute for dopamine, according to Mayo Clinic. Twenty-four different drugs are currently approved by the Food and Drug Administration for the treatment of Parkinson’s disease, and that list continues to grow as new research progresses. Consult your doctor for more information about individual medicines that may help your loved one. Some common families of medications to reduce PD symptoms include the following:

Caring for a Parkinson’s patient at home

You’ve learned more about PD, but how does that help you care for a Parkinson’s patient at home?

“All the research I did made me more prepared for what was going to happen to my dad,” said Liz, 53, a caregiver from the Chicago area. “But moving someone with Parkinson’s into your house isn’t something you can be all the way prepared for.”

Liz cared for her dad for over six years, and a lot changed in that time. “You learn how to deal with it, and what he needs from you, as well as what you’re actually able to help with,” she said.

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

Aside from offering help with ADLs and other daily activities, there are specific things you can do to help your loved one thrive as their PD 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 PD and stay up to date on current trends and treatments. Check out our complete guide to Parkinson’s in the elderly for more information and resources.
  • 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 PD 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 PD 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. PD 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 PD, 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 PD 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

Assistive technologies can offer Parkinson’s help at home by making daily tasks more manageable for your loved one. Assistive technology (AT) is “any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities,” according to the Assistive Technology Industry Association.

From mobility equipment to specialized computers and dressing devices, there are a multitude of ATs that can help individuals with PD, according to the American Parkinson’s Disease Association. Here are some example devices, organized by the area of the home they are suitable for:

  • 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

Caring for yourself while helping someone with Parkinson’s Disease

Taking the time to care for yourself benefits both you and your loved one with Parkinson’s disease. By protecting your own physical and emotional health, you can provide them with better care while preventing caregiver burnout in the long run. Here are some suggestions that may help:

  • Find someone to simply listen. The slower pace of daily life with Parkinson’s and the changing nature of patients’ 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 PD 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.”

Finding help for a parent with Parkinson’s disease

Sometimes, caring for a Parkinson’s patient at home can become overwhelming — especially in the later stages of the disease. Luckily, there are several alternatives to full-time family caregiving:

  • Assisted living for PD. Assisted living for Parkinson’s can 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 PD 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 PD.
  • Home care for PD. If you’d prefer to continue caring for a Parkinson’s patient 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 PD, 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 PD. 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 PD progresses.
  • Nursing home care for PD. 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 PD.

If you think your loved one with Parkinson’s disease could benefit from senior living, reach out to one of A Place for Mom’s free, local Senior Living Advisors. They can answer your family’s questions and help you find the right fit for your loved one’s specialized needs.

Disclaimer: A Place for Mom does not endorse or intend to endorse any specific medications listed in this article. This article is not meant to convey medical advice. Consult with your loved one’s doctor or therapists before starting or stopping any medications or therapies.

Sources:

Ahlskog, J. E. (2011). Does vigorous exercise have a neuroprotective effect in Parkinson disease?Neurology, 77(3), 288-294.

American Occupational Therapy Association. (2018). Critically appraised topic: physical activity interventions for instrumental activities of daily living for adults with Parkinson’s disease.

American Parkinson Disease Association. Medication for Parkinson’s.

Bonifacio, M. J., Palma, P. N, Almeida, L., & Soares-da-Silva, P. (2007). Catechol‐O‐methyltransferase and its inhibitors in Parkinson’s diseaseCNS Drug Review, 13(3), 352-379.

Cleveland Clinic. (2020, May 5). Parkinson’s disease.

Costello, S., Cockburn, M., Bronstein, J., Zhang, X., & Ritz, B. (2009, April 15). Parkinson’s disease and residential exposure to Maneb and Paraquat from agricultural applications in the central valley of CaliforniaAmerican Journal of Epidemiology, 169(8), 919-926.

Dezsi, L., & Vecsei, L. (2017). Monoamine Oxidase B Inhibitors in Parkinson’s DiseaseCNS & Neurological Disorders Drug Targets. 16(4), 425-439.

Flinn, N.A., Mensen, G., Krohn, S., & Olsen, P.J. (2009). Be independent: A guide for people with Parkinson’s disease. American Parkinson’s Disease Association. PDF.

Goshal, M. (2019, December 6). Understanding dopamine agonists. Healthline.

Harvard Health Publishing. (2020, February 18). The facts about Parkinson’s disease.

Johns Hopkins. (2022). 6 Medication-free ways to feel better with Parkinson’s disease. Johns Hopkins Medicine.

Marsh, L. (2013). Depression and Parkinson’s disease: Current knowledgeCurrent Neurology and Neuroscience Reports, 13(12), 409.

Mayo Clinic Staff. (2022). Parkinson’s disease. Mayo Clinic.

Michael J. Fox Foundation. Parkinson’s 101.

National Institute on Aging. (2017, May 16). Parkinson’s disease.

Wyant, K.J. (2017, January). 13 Medications to help control Parkinson’s disease symptoms. Michigan Health.

Author
Claire Samuels

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