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Caring for Care Partners

Updated: Nov 8


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Written By: Kristi Riker OTD, OTR/L


Care Partner Burnout:


Studies show that care partners of individuals with PD are at a higher risk for mental health struggles such as anxiety and depression. This may be due to the pressure of their many responsibilities, concern for the health of their loved one, stress over healthcare finances, neglect of their own health to prioritize others, and many other reasons. A care partner’s mental health state is also highly correlated with the mental health of their loved one with PD. This can worsen as the disease progresses and lead to significant burnout for care partners.



Burnout Risk Factors:


These are some factors that may place care partners at a higher risk for burnout:


  • Higher severity of partner’s PD symptoms, such as increasing cognitive impairment, greater symptom fluctuations, psychiatric complications 

  • Time and intensity of caring for partner (helping with more ADLs, supervision, night-waking)

  • Being female (you are more at risk of burnout as a female care partner)

  • Loss of social connection due to responsibilities and lack of time

  • Mutual influence of person with PD’s mental health with care partner’s mental health

  • Role changes and identity strain (taking on new roles, changes in relationship)

  • Sleep disturbance (disrupted care partner sleep increases risk of anxiety/depression)

  • Loss of personal time - less time for personal hobbies or self care

  • Grief of seeing loved one’s health decline

  • Physical demands and emotional load can lead to exhaustion


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Why Care Partner Mental Health Matters:


  • Impacts on Quality of Care

    • Care partners experiencing depression, anxiety, or burnout often have less emotional availability and lower patience, which can affect daily interactions with their loved one.

    • When care partners are mentally healthy, care recipients have better symptom management and lower hospitalization rates.


  • Physical Health

    • Continuous caregiving stress raises cortisol levels, leading to fatigue, immune suppression, sleep disturbance, and higher risk of chronic diseases.

    • Burnout can cause physical collapse — forcing the care partner to stop providing care altogether.


  • Mental Health Shapes Perception of Burden

    • Those with strong coping tools and emotional support may perceive caregiving as more meaningful than overwhelming.

    • Depression and anxiety make the caregiving load feel heavier even if tasks are the same.


  • Care partner Wellbeing Predicts Loved One’s Wellbeing

    • Care partner mental health is linked with the progression of symptoms in the person with Parkinson's.


  • Healthy Caregivers Model Regulation and Coping

    • Care partners can teach emotional regulation by example, helping spouses learn from how they manage stress and ask for help — setting a standard of self-compassion and resilience.

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Strategies for Care Partner Self-Care:


  • Scheduled breaks & relief: 

  • Sleep hygiene & rest: 

    • Since disturbed sleep is a major risk, care partners should build a good bedtime routine, share caregiving duties at night or take short naps when possible.


  • Social connection & peer support: 

    • Connection with other PD care partners helps to reduce isolation, normalize feelings, and exchange coping methods.

    • Resources for peer support:

  • Mindfulness / self-compassion practices: 

    • Care partners can integrate breathing/grounding practices, noticing self‐needs, and faith-informed reflection (if applicable).


  • Adapt to role shifting in the home: 

    • Talk with a support system about your feelings around role changes. Set realistic expectations and use family meetings to share responsibilities.


  • Seek education on PD: 

    • When care partners know the potential symptoms, fluctuations, and trajectory of PD, they can anticipate rather than react, which reduces anxiety.


  • Delegate & set boundaries: 

    • Practice saying, “I need help”. Share tasks, avoid over-commitment, and maintain personal boundaries.


  • Faith/spiritual integration: 

    • Spiritual practices (prayer, reflection, community worship, scripture) can be sources of regulation, hope, and meaning.


  • Screening & professional help: 

    • Monitor your mood/anxiety, seek counseling, join support groups, consider medication if needed.

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Care Partner Self-Reflection Worksheet 


1. Snapshot of My Current State

  • On a scale of 1-10, my current level of anxiety: _____

  • On a scale of 1-10, my current level of sadness/low mood: _____

  • In the past week, I have felt overwhelmed: □ Never □ Rarely □ Sometimes □ Often □ Very Often

  • In the past week, I have taken a break / rest time: □ Yes □ No

  • In the past week, I have connected with a friend or peer‐support: □ Yes □ No


2. Role Check

  • Has my role changed lately? (for example: spouse → caregiver, protector)

  • What feelings do I carry? Have they shifted recently?

  • Who in my family or support network knows how I’m feeling?


3. Triggers & Patterns

  • What caregiving moments this week triggered heavy feelings (anxiety/sadness)?

  • What thoughts went through my mind when I felt that way?

  • How did I respond physically/emotionally? (withdrew, lashed out)

  • What helped even a little? 


4. My Regulation & Support Plan

  • Which of these will I commit to in the coming week? (choose at least two)

    • I will schedule ___ minutes of “me-time” (respite, quiet, hobby) on _____ 

    • I will practice a relaxation exercise (e.g., 5-minute meditation) each day.

    • I will set one caregiving boundary and communicate it.

    • I will log my sleep/rest each night and aim for _____ hours.

    • I will reach out to family/peer support on: _______ to share how I’m doing and ask for help with: _____________________


5. Monitor & Review

  • Date for next self-check: ____________________

  • What will I do if I rate my anxiety or sadness at 8+ next check? (call therapist, ask for respite, join support group): ____________________________________

  • If at any time I feel hopeless or thinking of giving up, I commit to reach out to … (name and phone): ______________________




Resources:


Rashid R, Aamodt WW, Horn S, Dahodwala N. Association of Caregiver Depression Risk With Patient Outcomes in Parkinson Disease. JAMA Netw Open. 2023;6(8):e2327485. doi:10.1001/jamanetworkopen.2023.27485 - JAMA Network

Alshimemeri S, AlSudais H, Alamri NK, Alshoumar AM, Bin Dher SK, Maashi MH. Burden, Anxiety, and Depression Among Caregivers of Parkinson's Disease Patients. J Parkinsons Dis. 2024;14(7):1495-1505. doi: 10.3233/JPD-240014. PMID: 39365323; PMCID: PMC11492025. PMC+1

Bhimani R. Understanding the Burden on Caregivers of People with Parkinson's: A Scoping Review of the Literature. Rehabil Res Pract. 2014;2014:718527. doi: 10.1155/2014/718527. Epub 2014 Sep 14. PMID: 25298895; PMCID: PMC4179947.PMC


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