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Care Partner Training

We’re here for you. For over 20 years, we’ve had the privilege of working closely with care partners just like you. Many tell us they love caring for their person with Parkinson’s. It gives them purpose, connection, and joy.

But it’s not easy.

Support for the Journey Ahead

Parkinson’s Care Partner Training with the Davis Phinney Foundation is a comprehensive educational program designed just for you. Led by a team that includes a movement disorder specialist, clinical social worker, registered dietitian, and experienced care partner mentors, this program was created to support care partners every step of the way.

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You’re Not Alone

Caring for someone with Parkinson’s means navigating a constantly shifting landscape—symptoms, emotional changes, cognitive shifts. It can feel like you’re always on alert.

And yet, most care partners have never been formally trained. You may not have planned for this role. You likely have your own needs, responsibilities, and life to manage. No wonder burnout, overwhelm, and isolation are so common.

A Program Designed for You

If any of this sounds familiar, you’re not alone—and you don’t have to keep going it alone.

Our Parkinson’s Care Partner Training gives you the knowledge, tools, and confidence to care for your person and yourself. These sessions cover:

  • Medical and emotional aspects of Parkinson’s
  • Tools for building self-efficacy
  • Strategies for managing change
  • A game plan for what comes next

How It Works

Each session has been recorded and is available below so you can watch or listen whenever is best for you. If you have any questions, please email our team.

Video Recordings

Session 1 Supplementals
Topics
  • Program Aims, Expectations, and Flow
  • What it Means to Be a Parkinson’s Care Partner
  • Care Partner Roles Post-Diagnosis
  • Parkinson’s Care Partner Strain and Outcomes
Conversation Starters
  • What do you hope to gain from this program?
  • What are some skills or resources you wished you had known about when your person was first diagnosed with Parkinson’s?
  • Did you have preconceived notions about being a care partner before you started? What were they? Were they positive? Negative? Both?
  • What are some of your top concerns when it comes to being a care partner?
  • Now that you are enrolled in this program, what are some feelings you are experiencing? (e.g. nervousness, relief, excitedness, etc.)
  • As a care partner, have you ever found it hard to take care of your own needs? Why?
  • Are there doctor’s appointments or other care that you’ve missed for your own health and well-being? What were the barriers that got in the way?
  • What kind of physical activity do you currently engage in? What are some specific obstacles to engaging in this activity more regularly?
  • What are some ways to take care of your own health and your loved one at the same time?
Related Resources
Transcript

Click to download the transcript. Note, the files will download to whatever you have set as default on your device.

Homework Ideas

This homework is optional.

  • In the last week, what was a situation or challenge that you handled well?
  • In the last week, what brought you joy?
  • In the last week, what made you laugh?
  • In this coming week, how can you build in MORE of these things? Who can you share these with?
Dear Future Me

One of our favorite exercises for care partners is “Dear Future Me.”  Here’s how it works:

  1. Go to futureme.org.
  2. Enter your email address.
  3. Write a note to yourself.
  4. Select a date you’d like the letter to be emailed back to you.
  5. Hit submit.

They’ll hold it until it’s time to email it back to you. They have letters in their database today that will be sent back to people as far ahead as 2073.

If you’re interested in doing this exercise, you could write a note to yourself about what you’d like to know, have, be able to do, etc., at the end of this course. And/or you might write a note to yourself for a year from now to see how far you’ve come. You might tell yourself what you’re afraid of, what keeps you up at night, or what’s getting in your way. Or you might focus on everything you’re grateful for now.

This is your letter – however you think it will help is your call. Getting letters from the future is always fun, and it’s a great way to track growth, mindset, and fears during uncertain times.

Session 1 Notes & Chat Links

Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 3 Supplementals

Topics

Parkinson’s Medications, Complications, and Advanced Symptoms with Serena Hess, RN

Conversation Starters

What are some things you’ve done to help keep your loved one’s medications in order and on schedule?

What are actions you have taken when medications do not seem to be doing their job?

Related Materials

Transcript & Audio
Transcript

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.

Homework Ideas:

  • What challenges do you notice about your person’s medications? Are they missing doses? Feeling like things no longer work as well as they used to? Mixing up medications?
  • What system, if any, do you use to help your person stay on top of their medications? How do you feel it’s working?

Session 3 Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 5 Supplementals

Topics

  • Depression
  • Anxiety
  • Apathy
  • Loneliness
  • Isolation

Conversation Starters

  • How have you dealt with care partner strain in the past? What tools have you used? Was this effective? 
  • When you were feeling stressed as a care partner, what were some of the outcomes? Do you feel the stress of being a care partner affects your ability to care for your loved one? 
  • Are you aware of ways to prevent and treat depression, anxiety, and apathy? Who can you talk with about these concerns for yourself? For your loved one? 
  • Do/did you have concerns about depression, anxiety, or apathy in your loved one? How about in yourself? 
  • Have you experienced embarrassment or stigma around topics like depression and anxiety? Why? What might you do to overcome feeling embarrassed? 
  • Do you have social support systems in place? If so, how did you go about creating this system and/or asking for help? 
  • What are some specific ways in which your daily life has changed since you became a care partner for your loved one? 
  • Who do you talk with regularly, outside of your loved one? 
  • How much do other family members know about your care partner situation, and how comfortable were you sharing with family members? If you didn’t feel comfortable, why not? 
  • Have you received help from a social worker? If so, how aware was the social worker of your care partner challenges? 
  • People with Parkinson’s often lose interest in hobbies or other activities, and the burden can fall on their care partners to nudge them to do things. Has this been part of your experience? What has worked? What hasn’t worked?

Related Materials

Transcript & Audio
Transcript

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.

Homework Ideas

  • Do you feel that having Parkinson’s in your person’s (and your) life has increased or decreased your loneliness or isolation? How?
  • Can you make a list of people you’d like to reconnect with, if you had the time?
  • Can you pick one person from that list who you’ve lost contact with–either due to care partner responsibilities or other reasons–who you could call this week for a quick five-minute ‘hello’? Or even send an email or a text message to tell them you’re thinking of them? And if you do, how did that go?

Session 5 Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 7 Supplementals

Topics

  • Cognition
  • Sleep
  • Hallucinations
  • Delusions

Conversation Starters

  • Did you notice any changes in your loved one’s sleep, e.g., difficulty falling or staying asleep? Did you use any tools or resources to help improve their sleep? 
  • What cognitive changes have been the most challenging to handle? Did you use any tools or resources to help improve these changes? 
  • Was there a particular hallucination or delusion that was challenging for you to witness your loved one go through? Why was it challenging? What did it make you feel at the time? 
  • Are there any new strategies for coping with hallucinations or delusions in this module that you would like to try? Can you imagine how that might go or what you might say?

Related Materials

Transcript & Audio
Transcript
Audio

Homework Ideas

  • If your person has hallucinations or delusions, can you pick one new strategy to use for coping this week?
  • DISTRACT or REDIRECT: for example, if a person thinks something is happening that isn’t or there are people in the home who are not really there: 
    • “Oh really? Huh. I was going to go get a snack in the kitchen; want to come with me?” or 
    • “They told me they’re leaving in five minutes and not returning today. Let’s go on a walk; they’ll be gone when we get back.”
  • JOIN: If the person is seeing something that’s not there, but it is pleasant, like a childhood pet, you might ask, 
    • “What was your favorite thing to do with (pet’s name)? Tell me about that.”
    • “How old were you when you got (pet)? Tell me about that. 
  • Consider which strategies felt easier (or harder) to use; why do you think that is?

Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 9 Supplementals

Topics

  • Uncertainty
  • Self-Efficacy and Resilience
  • Anticipatory Grief
  • Ambiguous Loss

Conversation Starters

  • People facing an impending loss may be feeling angry, depressed, irritable, or out of control and struggle with losing their loved one. Have you experienced any of these feelings? 
  • What are sources of support or resources that may help you through the process of anticipatory grief and bereavement? 
  • Have you experienced grief? Did you need any additional support around grief? If so, what kind of support? 
  • What are some tools or coping strategies that may help in the grief process?

Related Materials
Resiliency and Self-Efficacy

For Managing Anticipatory Grief and Ambiguous Loss 

Audio

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.

Homework Ideas

  • How do you deal with the feelings of anticipatory grief and ambiguous loss?
  • What has helped? What hasn’t?

Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 11 Supplementals

Topics

  • Care Partner Self-Care 
  • Mobility and Safety 
  • Daily Living and Independence 
  • Maintaining Relationships and Social Support 

Conversation Starters  

  • “How do you balance maintaining your own identity while being a caregiver? Are there activities or hobbies you’ve found it hard to keep engaged in due to increasing caregiving needs? Which of these would you be most excited to recommit to and what would it take for you to be able to do so?” 
  • “What tricks, tools, or “hacks” have you discovered that make daily caregiving tasks like dressing or eating easier for both you and your person with Parkinson’s?” 
  • “What changes have you made to your home to improve safety and mobility for you and your person with Parkinson’s?” 
  • “Is communication becoming hard for you and your person with Parkinson’s? Is your person becoming harder to understand and is this putting strain on you, on them, or on relationships with others?” 
  • Have you tried any communication apps or accessibility settings on phones to help your person express themselves? If these ideas seem unmanageable, is there someone in your life you could ask to help you get started with using an app or updating your settings?” 

Related Materials
For the Care Partner

For Enhancing Mobility & Independence

Homework Ideas
Self-Care Homework
Mindful Journaling 

  • Suggested Prompt: “What was one caregiving moment today that made you feel accomplished or connected?” 
  • Suggested Prompt: “In the past three months, what has been the most challenging aspect of your life as a care partner? Is there a device that might be able to help you navigate this better? Could a combination of a device and a person help? For example could you improving your person’s ability to use their phone and set them up with a regular phone date with a friend to free up some time for yourself)? 

Schedule ‘Me Time’ 

  • Plan Ideas: Reserve 30 minutes to read a book, listen to a podcast, or walk outside. Make sure your person knows this is scheduled and have something scheduled for them at the same time. For example, you might schedule an exercise class or they might have a mindfulness practice guided by a video or phone app. 

Practical & Educational Homework
Assess Home Safety 

  • Suggested Actions: Order non-slip mats or install grab bars with easy-to-install kits (available online or at local hardware stores). 

Meal Prep Practice 

  • Recipe Ideas: Look for Parkinson-friendly recipes that are easy to chew and swallow, like soups or smoothies. If tremor or dexterity is a limit, try weighted utensils. 
  • Tools: Use apps like Mealime or Tasty to simplify meal prep planning. 

Connection Homework
Join a Support Network 

  • Suggested Action: Schedule time to attend one session this month. Try our care partner meetup, or join a local group near you. 
  • Options: There are many organizations that organize support groups, including regional organizations and area agencies on aging. You can also try virtual groups run by Caregiver Action Network or other similar organizations. Other national Parkinson’s non-profit organizations may have resources available, too. 

Session 11 Links
Links & References mentioned during the session 

Session 13 Supplementals

Topics

  • Navigating anger and emotional burnout as a care partner

  • The impact of Parkinson’s-related depression on relationships

  • Understanding Parkinson’s dementia vs. dementia with Lewy bodies

  • Social cognition and why people with Parkinson’s may not recognize your emotions

  • Addressing sexual health concerns in Parkinson’s (including erectile dysfunction)

  • Tips for managing temperature regulation and sleep disturbances

  • When and how to speak to a provider about your loved one’s cognitive changes

  • Eye closure issues (eyelid apraxia) and treatment options like Botox

  • Overcoming stigma and resistance to mental health support in Parkinson’s

Conversation Starters

  • “How do you manage moments of anger or emotional overwhelm as a care partner?”

  • “Has anyone else dealt with mood changes or condescending behavior that didn’t feel like your person?”

  • “What conversations have you had with your loved one’s doctor about cognitive changes—and how did they go?”

  • “What are your go-to sleep or comfort strategies when your person with Parkinson’s is hot one minute and freezing the next?”

  • “Has anyone here worked with a sex therapist or urologist for Parkinson’s-related intimacy concerns?”

  • “How do you talk to your loved one about seeing a counselor—especially if they’re resistant?”

Session 2 Supplementals

Topics

  • Managing Change
  • Falls and Exercise
  • Constipation and nOH

Conversation Starters

  • Do you remember a specific time when you advocated for your loved one? What happened? How did you handle it? How did you feel? 
  • Are there tools or resources you wish you had to help ER or hospital visits go more smoothly? If so, what are they? 
  • Has your loved one undergone a sudden change? What did you do to address it? 
  • If your loved one has experienced sudden change(s) before, what was your initial reaction to it? Did any particular emotions arise? 
  • What benefits have you experienced from connecting with others going through a similar journey of caregiving and patient advocacy?
  • Was there a particular fall your loved one had that you wish you had handled differently? If so, how? 
  • Was there a particular fall your loved one had that you feel you handled well? Why? 
  • Do you recall certain areas of your home that felt “unsafe” for your loved one? If so, how did you handle that? 
  • Have you noticed patterns of places or times of day that your loved one tends to fall, slip, or has trouble transferring? 
  • Does exercise come easily to your person with Parkinson’s? If not, what are some strategies you’ve tried to encourage them to exercise? What has worked and what hasn’t?
  • Have you and your loved one scheduled time to exercise together?
  • Has your loved one experienced constipation or orthostatic hypotension (low blood pressure) issues? If so, what are some ways you can deal with these issues at home? 
  • Has your loved one ever complained of feeling dizzy, had a glazed look, or passed out when he or she stood up? What did you do? Would you do anything differently?

Related Materials
Patient Advocacy and Managing Change  

Falls and Exercise  

Constipation and nOH 

Transcript & Audio
Transcript

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.

Homework Ideas

  • As unpleasant as it might be… ask your person about how often they are having a bowel movement, whether it’s very hard/large/difficult to pass, and whether they find themselves straining.
  • If your person is experiencing dizzy spells/light-headedness when getting up, track these nOH symptoms over the next week or so so you have the info to share with your doctor.
  • If your person is not exercising (but is capable of doing so), invite them to have a conversation about it and what they are open to doing. Try to incorporate movement (both of you) a little bit every day and track your progress.

Session 2 Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 4 Supplementals

PowerPoint Slides

Topics

  • Parkinson’s Nutrition

Conversation Starters

  • Watching a loved one lose or gain weight can bring up many different feelings in care partners. If this is something you have experienced, what feelings did it lead to? How did you cope?
  • Have you found any tips, tricks, or special foods that helped with unintentional weight loss or weight gain?

Related Materials

Transcript & Audio
Transcript

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.[/vc_column_text]

Homework Ideas

  • What concerns do you have, if any, about your person’s diet and nutrition?
  • How is your OWN diet? Are you feeding yourself with as much care as you are your person? Food is not only fuel but also a means of self-care that some care partners minimize in their dedication to their people with Parkinson’s.

Section 4 Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

Session 6 Supplementals

Topics

  • Guilt
  • Anger
  • Resentment
  • Symptom Management and OFF

Conversation Starters

  • Have you experienced any guilt while being a care partner? How have you coped? 
  • What are some other emotions you have experienced as a care partner? 
  • Were you able to find a way to be honest with your loved one about your emotions? If yes, how did your loved one respond? If not, why not? 
  • In what ways have your and your loved one’s roles and relationship changed? In what ways have they stayed the same?
  • Do you have a safe person with whom you can be honest about your emotions? If not, let us help you think of someone who can provide this safe space for you.

Related Materials

Transcript & Audio
Transcript

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.[/vc_column_text]

Homework Ideas

  • If your person is experiencing OFF symptoms, try keeping a simple diary for three days, noting what time they actually took their medications, what time the OFF periods occurred, and what time they ate meals. Bring this to their next doctor’s visit. If there is a clear pattern, the doctor may be able to adjust medications to improve OFF symptoms because of your detective work!
  • How do guilt and/or anger show up for you? Where in your body do you feel them? What do they feel like? (For example, anger might feel like a tightness in the neck and shoulders, but guilt might feel like a sour stomach.) Pay attention this week to the physical cues of these tough emotions and name them. Often, bringing attention can help with recognizing the feelings and then letting them go.

Session 6 Notes & Chat Links
Links mentioned during the class/in the chat. We will also include questions we were unable to address specifically during the session, if there are any, but have information about on our site:

 

Session 8 Supplementals

Topics

  • Navigating the Healthcare System
  • Medicare
  • Patient and Care Partner Support

Conversation Starters

  • Are you aware of any in-home care and respite care resources? Do you know how to access them? Have you used any? 
  • Did you have to make housing adjustments during your time as a caregiver? If so, what were they, and how did you handle that? 
  • If your loved one transitioned into an assisted living or nursing home, how have you made their new environment more comfortable for them? (Examples: pictures of family, favorite blanket, building relationships with staff)
  • What questions do you have about palliative care and hospice services? Before beginning your loved one’s journey, what did “palliative care” and “hospice” mean to you? Did you have prior experience with either form of care? 
  • How do you think palliative care and/or hospice might play a role in your loved one’s journey?

Related Materials
For Help on Medicare & Medicaid 

For Palliative and Hospice Care 

For Caregiver Support Systems 

Transcript & Audio
Transcript

Audio

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.

Homework Ideas
Do you know how to contact your local Area Agency on Aging? What services do they offer?

Notes & Chat Links
During this session, Sarah Chen mentioned a list of resources to help you navigate the healthcare system.

Talks Sarah Mentioned

Session 10 Supplementals

Topics

As this is the last session of the program, we will focus on whatever topics you have questions about. We have been collecting questions every week, and whatever questions we have yet to answer, we will address during this final session as long as they apply to most people.

Transcript & Audio
Coming soon.

Note: When you click the links above, the files will download to whatever you have set as the default download location on your device.

Notes & Chat Links
Links mentioned during the class/in the chat.

Post-Session Resources 

What’s Next?

Session 12 Supplementals

Topics

  • Advance directives defined and why they are important
  • Choosing and documenting a healthcare power of attorney
  • Creating a living will
  • Understanding Do Not Attempt Resuscitation (DNRA)
  • The right time to complete advance directives
  • Long-term care planning
  • In-home care, assisted living and skilled nursing care
  • When to consider increased levels of care
  • Evaluating long-term care quality and addressing issues

Conversation Starters

  • Does your person with Parkinson’s have advance directives? If yes, do you know what they are and where a written copy of them is located?
  • Does your person know what they want – and don’t want – in terms of life-sustaining treatment in case of emergency? How do they feel about ventilation, blood transfusions and the use of CPR or automated external defibrillators (AEDs)?
  • If your person does not have advance directives, will it be difficult to suggest that they make a plan? How have you encouraged them in the past?
  • Have you identified your own healthcare power of attorney (HPOA)? If not, do you know who you would ask and why? Do they have a copy of your wishes?
  • Who will care for your person if you, the care partner, develop a serious health issue?
  • When the time comes, do you know what your person with Parkinson’s wishes are in terms of long-term care? How do they feel about in-home caregiver support, assisted living homes and skilled nursing facilities?
  • How will your person fund long-term care? Do they have adequate financial resources? Will they need to look into government aid?
  • What support or resources do you need in order to successfully discuss advance directives and long-term care options with your person?

Related Materials

Homework Ideas
If your person does not have advance directives, draft a script of how you will suggest that they identify a healthcare power of attorney (HPOA) and create a living will that expresses their health care wishes.

If you do not have your own advance directives, make a plan for identifying a HPOA and writing out your healthcare wishes within 30 days.

Take some time to learn about the different types of long-term care. Then, create a spreadsheet with your person with Parkinson’s that outlines the pros and cons of each option for them personally. Consider their support needs, personal preferences and financial resources. Help them come up with a plan.

Session 12 Links
The following websites were discussed in the training video:

Session Overview

SessionTopics
Session 1
  • Program Aims, Expectations, and Flow
  • What it Means to Be a Parkinson’s Care Partner
  • Care Partner Roles Post-Diagnosis
  • Parkinson’s Care Partner Strain and Outcomes
Session 2
  • Managing Change
  • Falls and Exercise
  • Constipation and nOH
Session 3
  • Parkinson’s Medications, Complications, and Advanced Symptoms with Serena Hess, RN
Session 4
  • Parkinson’s Nutrition
Session 5
  • Depression
  • Anxiety
  • Apathy
  • Loneliness
  • Isolation
Session 6
  • Guilt
  • Anger
  • Resentment
  • Symptom Management and OFF
Session 7
  • Cognition
  • Sleep
  • Hallucinations
  • Delusions
Session 8
  • Navigating the Healthcare System
  • Medicare
  • Patient and Care Partner Support
Session 9
  • Uncertainty
  • Self-Efficacy and Resilience
  • Anticipatory Grief
  • Ambiguous Loss
Session 10: Wrap Up and Q&A

As this is the last session of the program, we will focus on whatever topics you have questions about. We have been collecting questions every week, and whatever questions we have yet to answer, we will address during this final session as long as they apply to most people.