February: Caregiver Support

Welcome to 2025! We hope you all enjoyed our first After Dinner Education session: Losing Your Footing: The Science of Falls in Parkinson’s Disease. Our fearless leader, Laura Sifuentes, DPT, NCS, has a terrific way with words and a dynamic approach to presenting—thank you, Laura!

When you think about February, you can’t help but think about our past Presidents' birthdays, Black History Month, whether Punxsutawney Phil (yes, I had to look that up!) will see his shadow, and—thank you, Hallmark—Valentine’s Day.

This month also gives us a chance to reflect on those we care about and, just as importantly, those who care for us. With that in mind, let’s dedicate some time to appreciating our caregivers!

The Science Behind Caregiving Success

There are many strategies that can provide a strong foundation and successful relationship between the care partner and a person with Parkinson’s. Research has shown that certain approaches can significantly improve both caregiver well-being and patient quality of life. Studies on caregiver support, stress management, and evidence-based interventions highlight the importance of education, structured routines, and emotional resilience in navigating the challenges of Parkinson’s disease caregiving.

Key Research Findings

📌 A recent meta-analysis examined 49 studies involving 5,387 caregivers of individuals with Parkinson’s disease. It found that:

• Caregivers often experience mild to moderate burden, which worsens with longer disease duration, greater severity, negative emotions, and cognitive impairments in patients.

• Surprisingly, interventions like cognitive behavioral therapy and palliative care did not significantly reduce caregiver burden.

• Deep brain stimulation in patients did not alleviate caregiver burden either.

• However, health education and long-term support after surgical interventions may help reduce caregiver strain.

📌 Another systematic review explored caregiver factors influencing quality of life (QOL) in individuals with Parkinson’s. The review identified seven themes: burden, strain, QOL and satisfaction, demographic factors, psychological factors, relationship factors, and caregiver input.

• Findings indicate that caregiver strain is most closely related to quality of life

• Caregiver strain is defined as the caregiver’s experience of persistent problems and feeling of reduced well-being from providing prolonged care for someone

• Caregiver strain is associated with worse QOL for both the recipient and the caregiver

• The study emphasizes the importance of addressing modifiable caregiver factors to improve well-being for both caregivers and individuals with Parkinson’s.

• Examples of modifiable factors starts with providers (doctors, therapists, etc) looking at the health and wellness of the caregiver as well as the person with Parkinson’s

As you can all see the data shows that the most successful relationships are those that take into account quality of life and health education for all parties involved. So let’s take a look at some helpful strategies to promote these factors and improve well being for everyone:

Educate Yourself About Parkinson’s Disease

• Learn about symptoms, progression, and treatment to anticipate changes.

• Stay updated on medications and therapies, as timing and dosage are crucial.

• Join support groups or connect with Parkinson’s organizations for insights.

Prioritize Medication & Medical Care

• Ensure medications are taken on time to manage symptoms effectively.

• Track side effects and communicate with doctors about adjustments.

• Attend doctor’s appointments and keep records of symptoms and changes.

Assist with Mobility & Safety

• Reduce fall risks by clearing clutter, rugs, and obstacles at home.

• Encourage exercise and physical therapy to maintain mobility.

• Use assistive devices (walkers, grab bars, raised toilet seats) for support.

Support Emotional & Mental Well-Being

• Be patient with mood changes, anxiety, or depression—they are part of the disease.

• Encourage social interactions to prevent isolation.

• Stay calm during hallucinations or confusion and redirect focus gently.

Manage Daily Living Challenges

• Offer adaptive utensils for easier eating and prevent choking risks.

• Use simple clothing with Velcro or elastic waistbands for easier dressing.

• Encourage good sleep hygiene to reduce night-time disruptions.

Maintain Open Communication

• Involve the person with PD in decisions as much as possible.

• Have honest discussions about advanced care planning early.

• Encourage them to express their feelings and concerns.

Take Care of Yourself as a Caregiver

• Set realistic expectations and ask for help when needed.

• Take breaks and practice self-care (exercise, hobbies, social time).

• Join caregiver support groups to connect with others in similar situations.

Plan for the Future

• Research home care services, respite care, and long-term care options if needed.

• Organize legal and financial planning (power of attorney, advance directives).

• Stay adaptable—Parkinson’s is progressive, and needs will change over time.

As a Physical therapy assistant regularly working with people with Parkinson’s, I see firsthand the dedication that caregivers bring to their loved ones every day. Their role is invaluable, and their well-being matters just as much as the patient’s. That’s why I always make it a point to ask the care partners: "How are YOU doing?"

Taking moments for themselves and seeking support when needed can make a world of difference. Let’s continue to uplift and support our caregivers—because when they thrive, so do those they care for.

Here at Ignite we are working towards not only facilitating exercise and movement awareness, but also health education and about Parkinson’s and all that it can entail. We want to reach out to offer support to any care partners as well are our participants with Parkinson’s. Our doors are open to both your partner and you in our exercise classes and educational sessions.

As always if you think this newsletter would be helpful for someone else please feel free to share and reach out if you have any thoughts or questions.

The more you know, the better your quality of life.

Romy

References:

1. Perepezko K, Hinkle JT, Forbes EJ, Pontone GM, Mills KA, Gallo JJ. The impact of caregiving on quality of life in Parkinson's disease: A systematic review. Int J Geriatr Psychiatry. 2023 Jan;38(1):e5870. doi: 10.1002/gps.5870. PMID: 36703272; PMCID: PMC10214089.

2. Zhao, Y., Wu, W., Wu, J. et al. Risk factors and intervention of caregiver burden in Parkinson’s disease: a systematic review and meta-analysis. Qual Life Res 33, 1753–1766 (2024). https://doi.org/10.1007/s11136-024-03616-0