Caregivers: Important discussion topics to have with your loved one

A care partner is an essential, active participant with the person with Parkinson’s in their care. While most care partners are spouses, children, siblings, parents and even friends can all be considered care partners. As your loved one living with Parkinson’s becomes less independent and more reliant on your care, your role as a care partner transitions to caregiver.

As a care partner, you are an essential member of the care team supporting the person in your life living with Parkinson’s. Your role as a care partner will evolve over the years and asking questions will help you and your loved one have an ongoing conversation about how to best partner in care to encourage you both to live well.

Here are some important discussion topics to have with your loved one:

  • Communicate often with your loved one to help them understand and accept your concerns and desire to help and support them. Talk about how much you expect or wish to be involved in care. Care partners typically have the most frequent and ongoing involvement in the lives of people with Parkinson’s. This brings both benefits and challenges as you will often notice effects of Parkinson’s that your loved one may not be aware of. You may find yourself feeling frustrated as you encourage your loved one with Parkinson’s to do activities to help them live well that they may not necessarily want to do, such as exercising, speaking louder or attending an appointment with a healthcare professional.
  • Talk about how much you expect or wish to be involved in care. Transitioning from spouse, child, parent or even friend to care partner can change your relationship with your loved one with Parkinson’s. It is important to have discussions with your loved one with Parkinson’s and the rest of the care team about everyone’s expectations about your involvement in your loved one’s care and your relationship outside of serving as a care partner.
  • Set up rules or even agree on a “catch phrase” that your loved one with Parkinson’s can use to let you know when they feel that your guidance and encouragement may be feeling like nagging or too much pressure.
  • Speak up during medical appointments. You, as the care partner, are both significantly impacted by Parkinson’s and very familiar with the effects it has on your everyday lives. If your typical medical appointments focus only on the person with Parkinson’s, let the Parkinson’s healthcare provider know that you are an active member of the care team and will be contributing during the appointments as well. Writing down the three most important things that you would like your partner’s medical provider to address is another practical step to ensuring your concerns are heard by healthcare providers.


Information from Davis Phinney Foundation.