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Caregiving and Parkinson’s Disease: Your Guide

Posted on February 04, 2022
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Andrew J. Funk, DC, DACNB

  • People with advanced Parkinson’s disease typically need help with their daily activities. This requires a caregiver, who is often a family member.
  • Caregivers can learn how to best manage the symptoms of their loved one’s Parkinson’s.
  • Caregivers need to develop a self-care plan to avoid burnout while caring for someone with advanced Parkinson’s disease.

Parkinson’s disease is a movement disorder that requires long-term care. The disease progresses over time. This means symptoms change the longer someone has Parkinson’s.

If someone has reached the stage of having advanced Parkinson’s, their signs and symptoms have become severe and greatly impact their quality of life. This typically requires a caregiver (often a family member) to help them with their daily activities, such as eating, dressing, bathing, sleeping, and even moving around the house.

Caregivers tending to loved ones with advanced Parkinson’s need to be equipped for the changes involved as the disease progresses.

Many MyParkinsonsTeam members who serve as caregivers for a loved one with Parkinson’s disease report challenges. One MyParkinsonsTeam member said, “My husband has had Parkinson’s for over 25 years. He is at stage four. For over a month, he has been seeing things that are not there. … We don’t share a room anymore. We haven’t for about three months. The reason is because he has very vivid dreams.”

Another member commented, “I’m caring for my husband. … Each day, there is something new and different to deal with.”

If people with advanced Parkinson’s need health care support, then so do their caregivers. This article serves as a caregiver’s guide and provides information about:

  • How to help your loved one best manage their symptoms as the disease progresses
  • The importance of focusing on your own well-being as a care partner

Managing the Symptoms of Advanced Parkinson’s Disease

Researchers and neurologists do not fully agree about the definition of advanced Parkinson’s disease. However, one study reports that people with advanced Parkinson’s often have the following in common:

  • They have lived with Parkinson’s for a long period of time.
  • Their medications may have begun to wear off, causing tremor, rigidity, or slowness of movement to return from time to time.
  • They may have tardive dyskinesia side effects from Parkinson’s medications. These can include slow, writhing movements of the face, neck, and torso and involuntary jerking of the arms and legs.
  • They may have nonmotor symptoms of Parkinson’s, including cognitive difficulties, depression or anxiety, trouble speaking, constipation, hallucinations and delusions, excessive sweating, sleep problems, sexual issues like erectile dysfunction, and an increase in dandruff.

Adjusting Medication

If your loved one has advanced Parkinson’s disease, there are treatment options for managing their symptoms.

During a medical appointment, a neurologist may change the timing or dosage of their medications. They may add other treatments as well. Here are some options the doctor may recommend:

  • Cutting the dosage, or changing the timing, of levodopa/carbidopa can smooth out the wearing-off effect of the medication.
  • Adding medications alongside levodopa/carbidopa, such as rasagiline (Azilect) or entacapone (Comtan), can help the levodopa work better. It may also improve tremor, rigidity, and slow movements.
  • Amantadine (Gocovri) is available for the effective treatment of tardive dyskinesia. This medication can work in conjunction with other Parkinson’s medications.
  • Rivastigmine (Exelon) is approved by the U.S. Food and Drug Administration (FDA) to treat dementia in people with Parkinson’s.
  • Versacloz (clozapine) is available to treat the psychosis (hallucinations and delusions) that can accompany advanced Parkinson’s.
  • Klonopin (clonazepam) and melatonin can treat sleep disorders associated with advanced Parkinson’s.

Other Treatment Options

Specialists may suggest device-assisted therapy for those with advanced Parkinson’s disease. Device-assisted therapy involves three main treatments:

  • Continuous levodopa/carbidopa delivery can treat the wearing-off effect of Parkinson’s drugs and tardive dyskinesia. Medication is delivered with a pump into the place where the stomach and small intestine meet.
  • Apomorphine (Apokyn) can treat the symptoms of Parkinson’s that occur during “off” periods of levodopa/carbidopa. This medication is delivered by intramuscular injection (a shot into a muscle). Other formulations of apomorphine can be infused into the body continuously through a pump device.
  • Deep brain stimulation requires a referral for surgery. For this treatment, a neurosurgeon implants an electrode in the brain, which delivers a low-level electrical charge. This can help smooth out the advanced symptoms of Parkinson’s.

Physical Therapy for Balance and Gait Problems

Despite altering the dosage of existing Parkinson’s medications — or adding new medications — people with advanced Parkinson’s may still have difficulty walking or keeping their balance. For this reason, movement can be a vital part of therapy.

One study showed that exercise and movement training improved balance in people with Parkinson’s. Another study on people with mild to moderate Parkinson’s showed that both resistance exercises and tai chi can lower the risk of falling.

Ask your doctor which exercises might be appropriate for your loved one’s level of symptoms.

Are you caring for someone with Parkinson’s disease?
Click
here to share your experience or advice in the comments below.

Self-Care for the Caregiver

Parkinson’s caregiver stress is real, and it can go along with taking care of someone with advanced Parkinson’s disease. It is vital that caregivers be able to spot warning signs that they have reached caregiver fatigue. These include:

  • A habit of neglecting your own health and needs
  • Feeling like you are on your own, and no one understands you
  • Feeling stress and uncertainty about the future
  • Feeling anger at the person with advanced Parkinson’s, then feeling guilty about those feelings
  • Feeling a deep sense of exhaustion that sleep does not relieve
  • Feeling depressed, desperate, or hopeless

Members of MyParkinsonsTeam often struggle with caregiver’s guilt. “My wife fell yesterday while I was showering, and I couldn’t hear her calls for help,” one member wrote. “Thankfully, she was just bruised. Felt guilty for not being there.”

Another said, “You do what you have to do for their care and your own self-care. One person can’t do it all. Don’t feel guilty.”

How Caregivers Can Help Themselves

The Parkinson’s Foundation acknowledges that caregivers need to also take care of themselves. Parkinson’s disease caregivers can contact the Parkinson’s Foundation Helpline to find information about local support groups and resources by calling 800-473-4636.

Caregivers can also build a self-care plan. Having a plan can help you set aside time to take care of yourself. Remember to include:

  • Physical self-care — Getting enough movement and rest
  • Emotional self-care — Working with a mental health professional or writing in a journal
  • Spiritual self-care — Engaging in prayer, meditation, or gratitude practice
  • Sensory self-care — Activating the five senses by focusing on your surroundings
  • Intellectual self-care — Stimulating the brain with art, music, or reading
  • Adventurous self-care — Trying new activities separate from the daily routine

You are more likely to be able to provide high-quality care for others if you’re taking care of yourself as well.

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 90,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.

Are you caring for someone with Parkinson’s disease? Share your experience in the comments below, or start a conversation by posting on your Activities page.

References
  1. For Caregivers — Parkinson’s Foundation
  2. Stages of Parkinson’s — Parkinson’s Foundation
  3. Activities of Daily Living — Parkinson’s Foundation
  4. Staying Healthy as a Care Partner — Parkinson’s Foundation
  5. Consensus on the Definition of Advanced Parkinson's Disease: A Neurologists-Based Delphi Study (CEPA Study) — Parkinson’s Disease
  6. Characteristics of Advanced Parkinson's Disease Patients Seen in Movement Disorder Clinics — Australian Results From the Cross-Sectional OBSERVE study — Clinical Parkinsonism & Related Disorders
  7. Tardive Dyskinesia — NORD
  8. Non-Movement Symptoms — Parkinson’s Foundation
  9. Treatment of Advanced Parkinson’s Disease — Current Opinion in Neurology
  10. Levodopa and Carbidopa — MedlinePlus
  11. Oral and Infusion Levodopa-Based Strategies for Managing Motor Complications in Patients with Parkinson’s Disease — CNS Drugs
  12. The Movement Disorder Society Evidence-Based Medicine Review Update: Treatments for the Motor Symptoms of Parkinson’s Disease — Movement Disorders
  13. Five-Year Efficacy and Safety of Levodopa/DDCI and Entacapone in Patients With Parkinson’s Disease — Journal of Neural Transmission (Vienna)
  14. Parkinson’s Disease: An Overview of Diagnosis and Ongoing Management — International Journal of Pharmaceutical Research & Allied Sciences
  15. Balance and Falls in Parkinson’s Disease: A Meta-Analysis of the Effect of Exercise and Motor Training — Movement Disorders
  16. Tai Chi and Postural Stability in Patients with Parkinson’s Disease — The New England Journal of Medicine
  17. Caregiver Stress — Parkinson’s Foundation
  18. Compassion Fatigue as a Care Partner — Parkinson’s Foundation
All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Andrew J. Funk, DC, DACNB has held board certification in neurology with the American Chiropractic Neurology Board since 2015. Learn more about him here.

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