17 Parkinson’s Caregiver Support Tips

Living with Parkinson’s disease comes with daily struggles and frustrations, and care partners are often their greatest voices and advocates. But caregiving comes with its own struggles!

In this article, you’ll learn 17 actionable ways that speech therapy can support care partners.

Parkinson’s Caregiver Support Tips

The following tips will help care partners navigate common areas of need in Parkinson’s disease, including cognition, communication, and swallowing. Plus, you’ll learn ways to offer care partners emotional support.

1. Educate About Parkinson’s Disease

Start by educating care partners about Parkinson’s disease, including what changes to expect as the disease progresses.

Share handouts and brochures or recommend high-quality websites, such as The Parkinson’s Foundation care partner guide.

Ask if the care partners have noticed changes in the patient’s ability to complete daily tasks, communicate, or swallow. This can help you anticipate challenges to come and make key adjustments to their care.

Cognition: Parkinson’s Caregiver Support Tips

Parkinson’s Caregiver Support

People with Parkinson’s disease are more likely to experience cognitive decline than healthy older adults:

  • 25% of people with Parkinson’s disease will experience mild cognitive decline (Aarsland et al., 2021)
  • 27% will have dementia 10 years into their disease
  • 50% will have dementia at 15 years
  • 74% will have dementia at 20 years (Gallagher et al., 2024)

Cognitive changes in Parkinson’s disease may be subtle at first. But over time, they can impact memory, attention, problem-solving, and the ability to follow conversations.

If you haven’t already, complete a cognitive-communication assessment to understand the full scope of your patient’s skills and needs.

Here are Parkinson’s caregiver support tips to address cognitive changes:

2. Use Routines & Visual Aids

Have a consistent daily schedule and add visual reminders to reduce confusion and increase independence.

  • Post their daily schedule, such as a large dry-erase calendar on the fridge
  • Add written cues
  • Post reminder notes
  • Post lists for daily tasks, such as a checklist on the washing machine

Read 11 External Memory Aids for more ideas.

3. Break Down Tasks

When giving directions for a task, break down the task into steps to make it easier to learn and remember. Teach one step at a time.

For example, the person with Parkinson’s disease has a few new medications and would benefit from using a pill box. Here’s how to break down the task of sorting pills into their pill box:

  1. Take out all of your pill bottles
  2. Open up all the compartments of the pill box
  3. Take one pill bottle, read the instructions, then fill in one week’s worth
  4. Double-check your work
  5. Set aside the pill bottle
  6. Move on to the next pill bottle and repeat steps 3-5

4. Watch for Fatigue

Schedule important conversations or decisions earlier in the day when the patient is more alert and fresh.

Cognitive load increases with fatigue. This means that it takes more effort for a person with Parkinson’s disease to do a cognitive task if they’re tired.

5. Provide Cognitive Stimulation Activities

Help keep the mind active with puzzles, music, looking at photo albums, simple card games, and whatever other stimulating activities the person with Parkinson’s disease enjoys.

See the Cognitive Rehabiliation Bundle for expert activities.  

6. Environmental Modifications

Make practical changes to the living environment to compensate for some of the cognitive challenges. Organize the space to decrease distraction, time pressure, and fatigue:

  • Get rid of clutter
  • Put things in the same place (hearing aids in the dish to the right of the sink)
  • Keep high-use items on a wheeled cart
  • Add labels (inside closets, in the pantry)
  • Improve lighting
  • Remove tripping hazards
  • Post their schedule to remind, orient, and comfort 

If your patient has also been dementia, they may benefit from other treatments. For more help, read Dementia Treatment in Speech Therapy.

More Popular Articles:

Communication: Parkinson’s Caregiver Support Tips

Up to 90% of patients with Parkinson’s disease report changes in speech, voice, and communication abilities (Schalling et al., 2017). This can cause frustration, isolation, and an inability to express their wants and needs.

Speech therapy can offer the following communication care partner support tips:

7. Encourage Daily Conversation & Voice Use

The mantra “use it or lose it” can encourage our patients to complete their voice exercises. Teach care partners to encourage their loved one with Parkinson’s disease to have daily conversations.

Care partners can also try reading aloud or singing together. Keep things fun and motivating by encouraging the patient to read aloud favorite poems, religious texts, comedy routines, or songs.

8. Modify The Environment To Support Communication

Here are ways to improve the environment to make communicating easier:

  • Reduce distractions and eliminate background noise when possible.
  • Make sure both parties can see each other’s faces: turn on more lights be sit face-to-face
  • Use a personal voice amplifier
  • Always have AAC handy, such as a notepad or an alphabet board
  • Keep them hydrated: keep water nearby to sip, use a humidifier if the air is dry

(American Speech-Language Hearing Association, n.d., Cleveland Clinic, 2020)

9. Communication Partner Tips

Teach care partners communication strategies to increase the likelihood of understanding their loved one and of being understood.

  • Accept any form of communication. Teach care partners to allow their loved one with Parkinson’s disease to attempt to communicate, even if it takes extra time. Care partners should resist the urge to speak for them. For more ideas, read Communication Partner Tips.
  • Get face-to-face. If there is a communication breakdown, the care partner can use eye contact and facial cues to better understand what the person is trying to say or to get their own message across.
  • Give extra time to communicate. People with Parkinson’s disease will need extra time to respond in a conversation or to find their words.
  • Utilize visual cues such as written words and pictures as needed during communication breakdowns.
  • Use nonverbal communication techniques, such as gestures.

10. Consider A Voice Treatment Program

There are several voice treatment programs proven to help patients with Parkinson’s disease communicate better. These include:

Care partners should seek out a speech evaluation by a speech-language pathologist to determine if their loved one is appropriate for these voice treatments.

Safe Swallowing: Parkinson’s Caregiver Support Tips

As the disease progresses, people with Parkinson’s disease often experience swallowing difficulties. This puts them at increased risk of weight loss, aspiration, and needing help with feeding (Suiter & Gosa, 2019).

Speech therapy can help care partners keep patients safer and more comfortable.

11. Recognize Signs of Swallowing Difficulties

Here are some of the signs of swallowing difficulty common in people with Parkinson’s disease. If a care partner notices these signs, they should contact their speech-language pathologist for help.

  • Unintended weight loss
  • Coughing or choking during or after eating
  • Drooling
  • Avoiding drinking liquids
  • Impaired chewing
  • Pocketing food or food residue in the mouth
  • Frequent heartburn or sore throat

(Parkinson’s Foundation, n.d.b.)

Read Dementia & Dysphagia for more help.

12. Encourage Good Oral Hygiene

Teach care partners about the importance of good oral hygiene to decrease the risk of pneumonia.

Oral hygiene tips:

  • Use a clean toothbrush with soft bristles and toothpaste
  • Brush teeth, tongue, palate, and gums once in the morning and once in the evening
  • If recommended by speech therapy, perform oral hygiene before/after eating or drinking to avoid bacteria entering the airway
  • Floss before bed
  • Use alcohol-free and sugar-free mouthwash, if using mouthwash
  • Visit the dentist for a cleaning & check-up every 6 months

13. Use Safe Feeding & Swallowing Strategies

People with Parkinson’s disease are at a higher risk of weight loss, aspiration, and needing assistance with feeding. Feeding and swallowing strategies that may help include:

  • Choice. Offer choices during meals to increase appetite
  • Softer, nutritious food. Choose softer, highly nutritious foods like fatty fish, avocados, and cooked black beans that are safe for the patient to swallow
  • Sit upright. Eat while sitting bolt upright and avoiding lying down within 30 minutes of eating
  • Don’t multitask. Reduce distractions while eating
  • Add tools. Use specialized feeding tools, like weighted or curved spoons and plates with rims, to make self-feeding easier
  • Small bites and sips. Take smaller bites and sips, one at a time
  • Sip between bites. Take a sip of the drink after each bite
  • Clear throat, then swallow. Clear their throat after every few bites or sips, then swallowing again

See the Dysphagia Pack for patient handouts and treatment ideas.

14. Meal Time Modifications

Here are ways that care partners can improve mealtimes to improve safety and comfort:

  • Shorten mealtime & add snacks. To decrease unwanted weight loss, advise care partners to make meal times shorter while adding more snacks in between meals (Suiter & Gosa, 2019).
  • Have a calm, distraction-free environment. Focus only on eating during mealtime. Turn off the TV and set aside the cell phone, books, or other distractions. This can decrease the risk of choking or not eating enough.
  • Support good posture. Choose a comfortable seat that supports good posture. Typically, this will be a firm seat with a firm back (not a cushy recliner) with an added pillow for lower back support as needed. Choosing a mealtime when the patient is not fatigued can also improve posture.
  • Help with feeding. Care partners can set up the meal so the patient can be as independent yet as safe as possible. For example, they can set the table so all utensils are easily accessible, open condiment bottles and keep within easy reach, cut up food as requested, and so on.
  • Modify food and liquid textures as recommended by speech therapy. For example, provide softer foods or thicken liquids if recommended.
  • Treat drooling by cueing to swallow and improving positioning, if it’s an issue

15. Get More Feeding Help

Encourage care partners to contact their talented healthcare team if the patient needs help outside of speech therapy’s scope of practice. Common referrals include:

  • A Dietitian to maintain adequate nutrition and hydration and for unintended weight loss
  • Occupational therapy for help with upper extremity weakness and tremors, and difficulty using utensils
  • Physical therapy to improve posture for safe eating and drinking
  • Neurology for worsening symptoms and for medication management

Helpful Resources For Parkinson’s Caregivers

16. Join A Support Group or Forum

Support groups for care partners of people with Parkinson’s disease can offer much-needed emotional relief and practical support. Here are some recommendations:

17. Get Expert Help From Trusted Organizations

There’s a lot of information out there—and some sources are better than others! Here are trusted organizations to help care partners find safe and effective answers to their questions.

If you’re a new speech therapy professional (or transitioning from ped or returning from a long break), we made the Adult Speech Therapy Roadmap Course for you!

Course participants from around the world say it’s practical and fun. Eligible for 1.55 ASHA CEUs.

Adult Speech Therapy Roadmap Course

The Adult Speech Therapy Roadmap is an online course that teaches you how to assess, treat, and document all major areas of adult speech therapy, from Day 1 to Discharge.

  • Eligible for 1.55 ASHA CEUs
  • Evidence-based
  • Practical & useful
  • Save time, decrease stress, and boost your confidence
Learn more

References

Adult Speech Therapy

Alisha Kleindel is an instructor of speech-language pathology at Midwestern University with over 15 years of full-time speech therapy work experience. Miwa Aparo is a researcher, editor, and occupational therapist. Chung Hwa Brewer is an SLP and instructor at Western Washington University’s Communication Science Disorders program. More about us →