Who this is for: spouses, adult children, friends, and family members supporting someone with Parkinson’s disease (PD).
What you’ll get: step‑by‑step, real‑world guidance on daily care, communication, safety, and caregiver well‑being—grounded in evidence and organized so you can act today.
First things first: you are part of the care team
Parkinson’s is a long‑term, variable condition. The most effective plans are team‑based: a movement‑disorders clinician, primary care, physical/occupational/speech therapy, social work—and you. Early inclusion of palliative/supportive care (focused on symptom relief, planning, and caregiver support) has been shown to improve quality of life and care coordination in PD. (JAMA Network)
Quick win: put a one‑page contact sheet on the fridge: neurologist, primary care, pharmacy, therapists, and an emergency plan.
Daily care essentials (the things that make the biggest difference)
1) Medications: timing is everything
- Give PD medicines on time, every time. Even short delays can worsen stiffness, tremor, swallowing, and fall risk. Use phone alarms or a pill organizer synced to the exact schedule your clinician sets. If hospitalized, bring a current medication list and ask staff how they ensure on‑time dosing. (Parkinson’s Foundation)
- Know the “red‑flag” drugs. Some common anti‑nausea and antipsychotic medications block dopamine and can dramatically worsen PD. Examples often avoided unless a specialist advises otherwise include metoclopramide and typical antipsychotics. Keep a wallet card of “meds to avoid” with you. (American Parkinson Disease Association, Davis Phinney Foundation)
- Meals & levodopa: In some people, dietary protein can compete with levodopa for absorption. If motor benefit is inconsistent, your clinician or dietitian may suggest taking levodopa 30–60 minutes before meals or trying protein redistribution (more protein later in the day). Don’t change routines without clinical guidance. (American Parkinson Disease Association, Michael J. Fox Foundation)
Tools you can print now: Parkinson’s Foundation Medication Form and Hospital Planner (“go‑bag” checklist, doctor letter, and timing plan). Keep copies with your loved one and in the car. (Parkinson’s Foundation)
2) Track patterns to guide better care
A simple diary of meds → meals → sleep → symptoms (ON/OFF, tremor, dyskinesia, anxiety, falls) helps the team fine‑tune treatment. Use the Parkinson’s Foundation Symptoms Diary or a similar worksheet. (Parkinson’s Foundation)
Moving safely: preventing falls and “freezing of gait”
- Home safety: Clear clutter and cords, remove loose rugs, add nightlights and grab bars, and consider an OT home safety evaluation. Good shoes (no slick soles) and adequate lighting matter. (Parkinson’s Foundation)
- Freezing tips: When feet “stick,” try cueing—count out loud, step over a line or laser cue, or walk to a steady beat/metronome. Use the “4‑S” sequence: Stop, Sigh (breathe), Shift weight, Step. Avoid pivot turns; take half‑circle steps. A PT trained in PD can tailor strategies and suggest mobility aids. (Parkinson’s Foundation)
After a fall: stay calm, scan for injuries, and plan each move before getting up (or call for help). Review why it happened and adjust the plan/home. (Parkinson’s Foundation)
Eating, swallowing, and digestive comfort
- Swallowing changes are common; an early speech‑language pathology (SLP) evaluation helps prevent choking and aspiration pneumonia. Sit upright during meals, take small bites/sips, and minimize distractions (no “talking while chewing”). (PMC, JNS Journal)
- Constipation: prioritize fluids, fiber, and daily movement; your clinician can add medications if needed. (Parkinson’s Foundation)
Sleep and dream‑enactment (REM Sleep Behavior Disorder, RBD)
If your loved one acts out dreams, make the bedroom safer (pad corners, move sharp objects, consider separate bedding) and tell the clinician—evidence‑based options include immediate‑release melatonin or clonazepam for selected adults. (Medication choices are individualized.) (JCSM, AASM)
Communication, thinking changes, and hallucinations—what caregivers can do
- Communication: allow extra time; reduce background noise; speak in short, clear phrases; encourage face‑to‑face conversation. LSVT LOUD® speech therapy can strengthen voice and clarity—ask for a referral. (Parkinson’s Foundation, American Parkinson Disease Association)
- Memory/thinking changes: create routines, use large‑print calendars and single‑step instructions, and avoid “multi‑tasking while walking.”
- Hallucinations or delusions: call the clinician before changing PD meds; infections, dehydration, or new drugs can trigger symptoms. When medication is needed, pimavanserin is FDA‑approved for PD psychosis; clozapine (with blood monitoring) and sometimes quetiapine are specialist‑managed options. Avoid typical antipsychotics unless directed by a movement‑disorders clinician. (FDA Access Data, Jefferson Digital Commons, PMC)
Caregiver well‑being: preventing burnout
Caregiver strain is common—and addressable. Build a routine that protects sleep, movement, and connection.
- Respite & services: In the U.S., your local Area Agency on Aging can connect you to the National Family Caregiver Support Program (NFCSP) for respite, education, and counseling. (ACL Administration for Community Living)
- Job protections: Many employed caregivers qualify for FMLA (up to 12 weeks of job‑protected, unpaid leave) to care for a spouse, parent, or child with a serious health condition. Check eligibility and state add‑ons. (DOL)
- Peer support & practical guides: Parkinson’s Foundation care‑partner resources and guidebooks offer checklists, scripts, and planning tools—share them with family so help is coordinated, not duplicated. (Parkinson’s Foundation)
Self‑check: If you’re noticing persistent sadness, irritability, sleep problems, isolation, or health issues of your own, that’s a signal to widen the circle—call the clinic, your primary care provider, and your local aging services office.
Planning ahead (so crises are calmer)
Early advance care planning and basic legal documents reduce stress later: health‑care proxy/medical power of attorney, financial power of attorney, and a will or trust, prepared with a professional familiar with chronic illness. Keep copies with the hospital “go‑bag.” (Parkinson’s Foundation)
Checklists you can use today
A. Hospital “Go‑Bag” (store by the door)
- 2–3 days of labeled PD meds; Medication Form; signed doctor letter about on‑time dosing
- List of all meds/supplements with exact times; allergies
- Copies of advance directives and key contacts; phone & charger; DBS remote (if applicable)
- Medical alert card/ID bracelet; comfortable clothing and non‑slip shoes
(See Parkinson’s Foundation Hospital Safety Guide and Step‑by‑Step Hospital Planner.) (Parkinson’s Foundation)
B. Home Safety Starter List
- Remove loose rugs/clutter; add nightlights; install grab bars; keep pathways wide; stable chairs with arms; consider raised toilet seat and shower chair. Ask for an OT home assessment. (Parkinson’s Foundation)
C. Freezing‑of‑Gait Cue Kit
- Metronome app; floor tape/laser line; short script on the 4‑S method (Stop–Sigh–Shift–Step); caregiver cue words. (Parkinson’s Foundation)
D. Weekly rhythm for caregivers (example)
- Mon/Wed/Fri: PT or 30‑minute walk (according to clinician advice)
- Tue/Thu: Voice/SLP practice (15–20 min)
- Daily: Bowel routine (fluids, fiber, movement), symptom diary entries (AM/PM), 30 minutes of caregiver “off‑duty” time (scheduled respite, neighbor check‑in, or a quiet walk)
Red‑flag situations—call the clinic promptly
- Sudden or worsening confusion, hallucinations, new falls, or fever
- Missed doses with marked rigidity or swallowing trouble
- Dream‑enactment that leads to injury
- Choking, weight loss, dehydration, or inability to keep meds down
These can often be stabilized when addressed early; bring your diary and med list to urgent visits. (For severe symptoms, call emergency services—and bring the Hospital Go‑Bag.) (Parkinson’s Foundation)
Quick FAQ
Can my loved one still drive?
Sometimes—especially early on. Reassess regularly; consider an occupational therapy driving evaluation and set common‑sense limits (no night or highway driving). Safety—and dignity—both matter. (Parkinson’s Foundation)
Are “on‑demand” treatments for sudden OFF time an option?
Yes—ask the specialist. (Examples include apomorphine formulations or fast‑acting levodopa; your clinician will advise what fits.) Use your symptom diary to show patterns. (Parkinson’s Foundation)
Trusted resources (save these)
- Parkinson’s Foundation Helpline: 1‑800‑4PD‑INFO; Care Partner Guides, worksheets, hospital safety materials. (Parkinson’s Foundation)
- National Family Caregiver Support Program (U.S.): respite, education, and counseling via your local Agency on Aging. (ACL Administration for Community Living)
- AASM RBD guideline (2023–2025): melatonin or clonazepam (clinician‑directed). (JCSM, AASM)
- Medication cautions: APDA/Davis Phinney Foundation lists for drugs that worsen PD. (American Parkinson Disease Association, Davis Phinney Foundation)
How Aqualane Clinical Research can support you
At Aqualane Clinical Research, our team offers no‑pressure education calls for care partners (medication timing, hospital planning, safety) and pre‑screening for Parkinson’s studies that may provide access to novel therapies or care models—always coordinated with your neurologist. If you’d like suggestions tailored to your zip code (support groups, respite, or active trials), share your city, diagnosis year, and current medications.
You’re not alone. With clear routines, smart planning, and a cared‑for caregiver, families can live well with Parkinson’s—today and over time.