Javascript is not enabled.

Javascript must be enabled to use this site. Please enable Javascript in your browser and try again.

Skip to content
Content starts here
CLOSE ×

Search

Leaving AARP.org Website

You are now leaving AARP.org and going to a website that is not operated by AARP. A different privacy policy and terms of service will apply.

What You Need to Know as a Caregiver for Someone Who Has Parkinson’s Disease

Experts share ways to support a loved one whose needs will change over time


spinner image three sets of caregivers of people with parkinsons and their care recipients from left are tonia smith and her mother joanne reeves then gary and bobbi rafaloff and finally gina and gil kim
From left: Tonia Smith and her mother Joanne Reeves; Gary and Bobbi Rafaloff; Gina and Gil Kim
Courtesy Tonia Smith, Gary Rafaloff, Gil Kim

Gary Rafaloff’s medication routine is, in a word, complicated. To treat his Parkinson’s disease and other health issues, the 71-year-old finance professional takes eight pills in the morning, three at midday, one at dinner and five at bedtime. His wife, Bobbi, 71, says one of her jobs as Gary’s care partner is making sure he never misses a dose, whether they are at home in West Palm Beach, Florida, or elsewhere.

That’s why she keeps a full back-up supply in her purse, and, she says, “I also keep a supply in the car … and our kids’ houses have backups.”

spinner image Image Alt Attribute

AARP Membership— $12 for your first year when you sign up for Automatic Renewal

Get instant access to members-only products and hundreds of discounts, a free second membership, and a subscription to AARP the Magazine.

Join Now

Bobbi says that the day Gary had to have an emergency heart procedure, “my purse supply came in very handy.” Hospital pharmacies, she says, are unlikely to stock the long list of medications the average Parkinson’s patient needs every day.

That’s the sort of detail that Bobbi has learned in the 12 years since Gary was diagnosed — and that the caregivers of an estimated 90,000 newly diagnosed Americans start learning each year.

There’s a lot to know about Parkinson’s, a brain disorder that gets worse over time, potentially affecting everything from how a person moves to how they think.

Here’s what health professionals, patients and caregivers say a caregiver should know:

Parkinson’s is not fatal

“Parkinson’s is not a death sentence,” says Rachel Dolhun, M.D., head of medical communications at The Michael J. Fox Foundation. There’s a lot you can do, she says, to help your loved one “live as well as possible as long as possible.”

People with Parkinson’s face an increased risk of death from falls and pneumonia, but on average, their expected lifespan is about the same as someone without the disorder, according to the Parkinson’s Foundation.

spinner image gary and bobbi rafaloff in the center of a family photo pictured are their children with their spouses and grandchildren and four family dogs
Gary and Bobbi Rafaloff, with family.
Courtesy Gary and Bobbi Rafaloff

Parkinson’s isn’t just a movement disorder

Most people probably know that Parkinson’s can cause tremors. As Parkinson’s progresses, people often walk more slowly and stiffly, lose balance, have trouble eating and speaking and have other movement problems. These changes appear as damage progresses in a section of the brain that controls movement and produces a key chemical messenger called dopamine.

“What comes as a big surprise for caregivers and people with [Parkinson’s disease] are the non-movement related symptoms,” says Amanda Janicke, a medical social worker who answers calls and emails at the Parkinson’s Foundation helpline.

Early in the disease, these symptoms can include loss of smell, constipation, depression and sleep problems, according to the foundation.

Eventually, some people get apathetic, meaning they lose interest in doing things, including things that matter for their health, Janicke says. That can be hard for caregivers, who want the best for their loved ones, she says.

Some people develop severe problems with thinking and memory; some hallucinate. “That is a whole new world,” for many caregivers, Janicke says.

Every Parkinson’s journey is different

“Parkinson’s, by its nature, changes over time,” Dolhun says. But how it changes and at what speed varies widely, she says. That means the roles of care partners vary and change as well.

Some newly diagnosed people need little or no day-to-day help, Janicke says. Others “have been struggling for years,” and need a lot of help, she says.

“On the whole, Parkinson’s is slow moving,” she says. Someone working and living independently might keep doing that for a while.

Health & Wellness

AARP® Dental Insurance Plan administered by Delta Dental Insurance Company

Dental insurance plans for members and their families

See more Health & Wellness offers >

Doctors don’t have a “crystal ball” to tell new patients and their care partners what to expect, Dolhun says. But after a couple of years, she says, doctors often have a better sense of someone’s likely path.  

The Rafaloffs say they are grateful that Gary’s symptoms have progressed slowly. His sleep problems and balance have worsened, and his speech and walking have slowed, but Bobbi says, “Gary's cognitive abilities have just sharpened somehow.” Mental decline “was my greatest fear when he was diagnosed,” she says.

Tonia Smith, 50, a Cincinnati health educator and advocate, says her mom, Joanne Reeves, 70, is still living safely on her own, five years after a tremor in one hand led to her Parkinson’s diagnosis. She says her mom does need more help with things like sorting medications and sometimes freezes up when she moves. Smith says she calls Reeves every day to make sure she’s OK.

spinner image tonia smith and her mother joanne reeves pose for a photo at a beach themed party
Tonia Smith, 50, and her mom Joanne Reeves, 70, of Cincinnati, at a recent party.
Courtesy Tonia Smith

Get support as a Parkinson’s caregiver

It’s important to build a knowledgeable care team, Dolhun and Janicke say. The doctors who know the most about Parkinson’s are neurologists with extra training called movement disorder specialists. They are not in every community, but it can be worth traveling to see them, the experts say. A directory of the specialists is at the website of International Parkinson and Movement Disorder Society.

Even if your loved one doesn’t need them yet, it’s also a good idea to learn about the nearest physical therapists, occupational therapists and speech therapists trained in Parkinson’s, Janicke says.

She also urges families to learn about palliative care, which focuses on quality of life at any stage of the disease. Palliative professionals might address symptoms such as constipation and pain and provide mental health support to patients and care partners, she says.

Your loved one might also benefit from a Parkinson’s exercise class, she says. Studies show exercise can slow Parkinson’s progression, ease symptoms and lower stress.

And, of course, care partners are key members of the team. If you can, you should go to doctors’ appointments with your loved one, Janicke says, as an extra pair of ears and as someone who can share crucial information.

Gil Kim, 66, says he and his wife Gina, 64, built a “great support system” in Atlanta after she was diagnosed 12 years ago. She had a movement disorder specialist, a good support group and specialized boxing, tai chi and pole-walking classes. When they moved to Madison, Mississippi, to be closer to grandchildren, he says, they found almost none of that — so they reinvented it. He and Gina now host a monthly support group with up to 60 people, he says, and have built a Parkinson’s boxing class at a local church into a larger program.

Still, he says, they now must travel more than 100 miles to see a movement disorder specialist in Alabama. He says he realizes that’s not something everyone can do.

spinner image gina and gil kim posing on front of a natural rock bridge arch in utah on a recent trip
Gil Kim, 66, shown with his wife Gina, 64, who has Parkinson's, during a trip to Utah.
Courtesy Gil Kim

Care partners may walk a fine line

How much help should you offer your loved one with Parkinson’s? How much of your own research should you share with them? Who can you tell about the diagnosis?

Caregivers and patients may not always agree on such things, Dolhun and Janicke say. Care partners must often walk a fine line between what they want to do and what their loved ones want.

Honest conversations are best, Dolhun says. “Ask the person, ‘How can I be most helpful now?’ ”  You may hear, for example, that the person with Parkinson’s doesn’t want to know every detail of your research but would appreciate hearing what’s essential.

spinner image membership-card-w-shadow-192x134

Get instant access to members-only products and hundreds of discounts, a free second membership, and a subscription to AARP The Magazine.

Tonia Smith says she respects her mother’s independence, but it’s been hard at times, such as when Smith spent months, to no avail, urging her mother to try a Parkinson’s exercise class. She was delighted when her mom eventually discovered a class on her own.

Another common scenario: Many people with Parkinson’s don’t want to go public with their diagnosis at first, Dolhun says. But over time, trying to hide symptoms can be stressful for them, and keeping the secret can be stressful for their care partners. Sharing the information is sometimes a relief, she says.

spinner image large room full of people there for a parkinsons support group
The Kim family's Parkinson's support group in Madison, Mississippi.
Courtesy Gil Kim

New challenges will arise as you manage Parkinson’s symptoms

As Parkinson’s progresses, daily activities can get harder. Someone who loved eating out may be reluctant to go because their shaking hands make eating messy. Someone who was a sparkling conversationalist may struggle to be understood as their speech gets slower and quieter. A home that seemed safe enough suddenly seems unsafe for a person with worsening balance.

Support groups are full of people with good advice about such challenges, Janicke says. Occupational, physical and speech therapists are great sources of information, too, she says — which is good reason for care partners to accompany patients to therapy appointments.

For example, she says, some people with eating difficulties bring their own adaptive silverware that’s easier to use to restaurants (available at various retailers like especialneeds.com, amazon.com and walmart.com). Others order finger foods or other easier-to-eat options.

Another example: Dolhun says people struggling to hear and understand someone with Parkinson’s can often improve the situation just by turning off TVs, putting away phones and sitting and facing the person.

The future is uncertain – but you should plan for it

When the Rafaloffs moved to Florida from New Jersey, they switched from multistory to single-story living. They say they probably would have done that even if Gary didn’t have Parkinson’s — but he says it’s comforting to know he’ll be in a safer place if symptoms progress. The adage that we should “hope for the best, plan for the worst,” is true for all of us as we age but takes on added urgency when a loved one has Parkinson’s, Dolhun says.

spinner image doctor rachel dolhun of the michael jay jox foundation in a professional headshot
Rachel Dolhun, M.D., of the Michael J.Fox Foundation.
The Michael J. Fox Foundation

In addition to considering housing options, planning means making sure your loved one has up-to-date legal documents — including those that name medical and financial decision-makers who can step in if needed.

Gil Kim says he and his wife are glad that they bought long-term care insurance, which will pay for things like in-home care and assisted living, before her diagnosis. Kim says he’s also met with a financial planner to make sure they’ll have enough money to give Gina excellent care well into the future.  

That frees them up, he says, to enjoy all the things they can still do together today.

How to Create a Safe Living Space for a Loved One with Parkinson’s

“Lose the rugs.” Gil Kim says that’s usually his first piece of advice for people with Parkinson’s disease and their care partners when they ask him to assess their home for safety — often after a fall.

Throw rugs are a major tripping hazard, says Kim, who is a retired engineer as well as a care partner for his wife, Gina, in Madison, Mississippi. Kim says he also focuses on simple lighting improvements, such as plugging in motion-sensing night-lights. You can even put battery-operated lights under the bed that will come on when you get up to use the bathroom, he says. Here are some other home safety tips for people with Parkinson’s and their care partners, from the Parkinson’s Foundation:

  • Clear floors of clutter, including electrical cords in any walking areas.
  • Make sure furniture is secure and sturdy and doesn’t swivel. Choose chairs with arm rests to make standing easier.
  • Improve lighting to minimize any dark, shadowy areas. Reduce glare with shades and blinds as needed.
  • Create wide walking paths to make room for a walker or wheelchair, if needed.
  • Install grab bars near the toilet, tub and shower. Don’t rely on towel bars.
  • Keep stairways clutter-free and well lit, with a handrail on at least one side. Put brightly colored tape on the top and bottom steps to make them easier to see.

Discover AARP Members Only Access

Join AARP to Continue

Already a Member?