Promoting the Care of Caregivers: Suggestions for the caregivers of those with Parkinson’s Disease

Written by Emma Heaton, OTS

How Caregivers are Impacted by Parkinson’s Disease

Due to the progressive nature of Parkinson’s Disease, a caregivers role can be long-term it is important to factor in role changes that occur (6). Caregivers strain increases at a quicker rate once an individual symptoms move to both sides of the body (3). Another study completed found that the caregivers depression level correlated with the individual with Parkinson’s depression level (7). Factors impacting caregiver stress levels include: number of symptoms, number of daily tasks caregiver completes, co-morbidities the caregiver has, and financial situation (4). Personality traits of caregivers can effect quality of life outcomes (8). Anxiety and depression have the highest impact followed by neuroticism (8). However, conscientiousness has been found to be the most positive factor for influencing quality of life (8). Due to the dynamic nature of PD involving the physical and mental health of both the individual with PD and the primary supporter it is important to provide practical tips for both.

Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease, Chapter 1 (5)

7 Needs of Caregivers
  1. Education about Parkinson’s Disease
  2. Time Management
    1. Make lists
    2. Delegate if possible
    3. Make routines early
  3. Self-Care, Health, and Respite
    1. 1 to 1.5 hours a day for yourself
    2. Set limits
  4. Support Team
    1. Healthcare professionals
    2. Financial assistance
    3. Family
    4. Friends
  5. Your Relationship with the person you are providing care for
    1. Plan time apart from caregiving tasks
  6. Medical, Financial, and Care Decisions
    1. Clarify issues for family involvement, advance directive, etc early on
    2. Make decisions to promote the individual’s independence
  7. Community Resources
    1. Adaptive devices
    2. Support groups
    3. Exercise groups
    4. Legal documents
How to Provide for Those Needs

Education on PD can be found at the National Parkinson’s Foundation (NPF) website and schedule further explanations of diagnosis with doctor, neurologist, etc. For work, there is the Family Medical Leave Act (FMLA) for eligible employees to take up to 12 weeks of unpaid, job-protected leave. It can occur within a 12 month period to provide care for family member or spouse with a serious medical condition (5).

Complete the Caregiver Self-Assessment form to determine what areas can be improved to enhance your health and well-being. Assessment can be found in the Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease issued freely by the NPF (5).

For appointments, compose a packet with the following information:

  • Healthcare directive
  • Name, address, numbers of primary doctor and other healthcare professionals
  • Medication list: name, purpose, dosage, and changes in medication
  • Questions/Top 3 concerns you or your loved one has since last visit
  • Notes from prior sessions
  • Appointment schedules

Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease, Chapter 3 (5)

Healthcare directive/information of primary healthcare professionals decreases the stress of trying to remember in the moment and helps place everyone on the same page to provide care. Creating medication lists of type, purpose, dosage, and changes in medication can decrease anxiety and stress to remember medications during the session. Write down top 3 concerns/questions you and your loved one have to ensure it is brought up during session. Sessions with the doctor or therapist can be busy and we want to make sure your concerns are being answered or followed-up on. Past notes and appointment schedules can be helpful in keeping a routine and avoid confusion on what was completed last time or who you and your loved one are seeing next.

Making daily life positive! Here are tips to make life in the home and trips simpler

  • Move frequently used items to an easily reached location in the bathroom, kitchen, and bedroom
  • Label drawers and cabinets such as ‘pants’ or ‘coffee cups’
  • Use hygiene products such as electric toothbrush/razor to maintain in safe independence
  • See if scheduling a referral for Occupational Therapy can help with daily activities such as dressing, bathing, and grooming
    • Provide information about adaptive equipment (covered cups, shower chairs, weighted spoons/forks, etc)
    • Strategies for dressing, bathing, grooming, eating, driving, and other areas of life

Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease, Chapter 3 (5)

Follow up with your Movement Disorder team or the National Parkinson’s Foundation if you have any questions or concerns.


  1. Carter, J.H., Stewart, B.J., Lyons, K.S. et al (2008). Do motor and nonmotor symptoms in PD patients predict caregiver strain and depression? Movement Disorders, 23, 1211–1216
  2. Carter, J. (2013). Coping Skills for Care Partners. Parkinson’s Disease Foundation.
  3. D’Amelio, M., Terruso, V., Palmeri, B., Di Benedetto, N., Famoso, G., Cottone, P., & … Savettieri, G. (2009). Predictors of caregiver burden in partners of patients with Parkinson’s disease.Neurological Sciences30(2), 171-174. doi:10.1007/s10072-009-0024-z
  4. Drutyte, G., Forjaz, M. J., Rodriguez-Blazquez, C., Martinez-Martin, P., & Breen, K. C. (2014). What impacts on the stress symptoms of Parkinson’s carers? Results from the Parkinson’s UK Members’ Survey. Disability & Rehabilitation,36(3), 199-204. doi:10.3109/09638288.2013.782363
  5. Gardner, J., Wichmann, R., Breslow, D., & Wiener, P. (2016). Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease, Chapters 1 & 3. Miami, FL: National Parkinson Foundation.
  6. Habermann, B. (2011). Caring for the Care Partner. Parkinson’s Disease Foundation.
  7. Happe, S., Berger, K. (2002). The Association Between Caregiver Burden and Sleep Disturbances in Partners of Patients with Parkinson’s Disease. Age Ageing 31, 349–354
  8. Tew, E. H., Naismith, S. L., Pereira, M., & Lewis, S. G. (2013). Quality of Life in Parkinson’s Disease Caregivers: The Contribution of Personality Traits.Biomed Research International, 1-6. doi:10.1155/2013/151872


About the Author


Heather Simpson, OTR/L

Heather Simpson graduated with a B.S. in Exercise and Sport Science with a minor in Early Education from the University of Florida in 2007. Following…

Read all articles by Heather Simpson, OTR/L