Presented during: PSP-MSA-CBD Caregiving Symposium
Symposium Co-Hosts: Stanford Movement Disorder Center and Brain Support Network
Date: June 14, 2025
Dale G. Larson, PhD
Clinical Psychologist, Santa Clara University
Brief Summary – “The Compassionate Caregiver’s Journey: Empathy and Challenges”
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Keynote speaker, Dr. Dale Larson, clinical psychologist, and professor of Counseling Psychology at Santa Clara University, addressed the challenges of caregiving while breaking down myths and showing a path toward meaning and self-compassion.
Dr. Larson’s highlighted the difficult realities of caregiving, including increased depression and anxiety often worsened by external factors such as COVID and lack of support in the workplace. However, he emphasized that research reported psychological benefits like pride and satisfaction.
Dr. Larson reframed caregiver burnout—characterized by demoralization, diminished caring, and exhaustion—as a “badge of honor,” a normal reaction to abnormal stress. His antidotes to burnout include building self efficacy, renewing commitment, and finding sustainable energy.
A core message was the importance of vulnerability and support. He discussed the concept of “helper secrets”—hidden feelings caregivers have—stressing that disclosure in a trusted environment combats isolation. Social support is crucial for the well-being of caregivers, especially for those caring for individuals with “orphan illnesses.”
To build resilience, Dr. Larson advised developing self-efficacy. Building self-efficacy involves focusing on three key areas: feeling in control of getting necessary breaks, managing upsetting thought patterns, and responding to difficult behaviors with calm and composure. He also promoted mindfulness and self-compassion, urging caregivers to treat themselves with the same kindness they extend to others.
Caregivers are “caring warriors”, with the ability to ultimately find meaning in their capacity to love, assuring them their dedication has a ripple effect. His final message: “Caregiving is difficult, it is hard, and we can do hard things.”
Comprehensive Notes – “The Compassionate Caregiver’s Journey: Empathy and Challenges”
Notes by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Realities and Positives of Caregiving
The caregiving journey is a difficult reality, frequently involving loss.
Caregivers commonly experience depression and anxiety, burdens intensified for many by the COVID-19 pandemic, with 61% reporting an impact. However, “media myths” about caregiving’s harmful effects are countered by recent research.
Studies show no elevated risk of mortality, systemic immune damage, or telomere shortening among caregivers.
Conversely, many caregivers report significant psychological benefits, such as pride, enjoyment, and profound satisfaction from “giving back” and “doing the impossible.” This research, primarily based on hospice and dementia caregiving, provides encouraging insights into the caregiver experience.
A common challenge is that people often do not utilize available resources. This was illustrated by the anecdote of the person on the roof during a flood who declines rescue boats and a helicopter, turning them away, and believing in divine intervention, only to drown. Saint Peter’s response highlights that help was in fact sent and he did not recognize or see it..
Understanding and Combating Burnout
Caregiver burnout is characterized by demoralization, diminished caring, and exhaustion.
Burnout should be re-framed not as a personal failing, but as a “badge of honor,” indicating an individual was initially passionate and is experiencing a normal reaction to abnormal levels of stress.
It serves as a wake-up call for prioritizing self-care rather than self-judgment.
The crucial understanding is that caregivers are normal individuals contending with unusually difficult circumstances, a context often misunderstood by those outside the caregiving role.
Antidotes to combat burnout include:
- Building efficacy and competence to fight demoralization.
- Renewing involvement and commitment to counter diminished caring.
- Finding sustainable ways to maintain energy to overcome exhaustion.
Unaddressed stress can affect individuals at a cellular level, impacting telomeres (biological markers linked to aging). However, practices like meditation and exercise have been shown to improve telomere health, emphasizing the importance of self-care in mitigating stress’s physiological effects.
The Power of Empathy and Compassion
Humans are inherently “wired for caregiving” due to an altruistic brain equipped with mirror neurons that enable deep understanding and empathy for others’ actions, intentions, and emotions.
Empathy involves sensing another’s personal meanings and experiences.
Compassion is the emotional response to suffering that motivates action to alleviate it.
Empathy serves as the bridge to compassion.
Choosing compassion over personal distress is vital, as personal distress can lead to burnout and disrupt the helping relationship.
Compassion functions as a stress buffer, activating different brain regions and reducing burnout risk.
The “Pit” Metaphor and Building Self-Efficacy
A helpful metaphor for caregivers is reaching into a “pit” to help someone in distress without falling into it oneself.
To avoid falling into the pit, caregivers must hold onto their self-efficacy, social support, faith, communication skills, and other resilience-building factors like exercise.
An example of identifying when entering personal distress is similar to comparing the difference between a tear and sobbing, where a tear would be a response to something whereas sobbing signifies attention turning inward.
Self-efficacy, defined as confidence in one’s ability to affect desired outcomes, is a key concept for caregivers.
“Stress hardiness” is characterized by viewing challenges as opportunities, commitment, and a sense of control; even a small amount of control can significantly enhance well-being.
Three crucial areas for building caregiver self-efficacy are:
- Obtaining Respite: Feeling in control of securing necessary breaks.
- Controlling Upsetting Thoughts: Managing rumination and obsessive thinking about the unfairness or difficulties of the situation. Suppressing these thoughts is counterproductive and can lead to the “white bear effect” (where attempting to suppress a thought makes it more prominent). Reappraisal is a more effective strategy.
- Responding to Difficult Behaviors: Maintaining composure and responding calmly. A recommended approach is to be “slow, soft, simple,” pausing and taking deep breaths to self-regulate in stressful moments.
Rejecting the “Superhero” Myth and Embracing Vulnerability
The common portrayal of superheroes offers poor role models for caregivers, fostering unrealistic expectations.’
Fictional heroes, often driven by trauma, exemplify distress, anonymity, and invulnerability—traits counterproductive for human caregivers.
Unlike these figures, caregivers are vulnerable and lack superpowers; striving for such perfectionism leads to self-blame and isolation.
The ideal is to be authentic and genuine, embracing vulnerability rather than concealing it.
This pressure often leads caregivers to conceal “helper secrets”—troubling thoughts and feelings like anger towards a loved one, emotional distance, or inadequacy.
While disclosing distress is a natural human behavior, social stigma and shame often prevent caregivers from seeking needed support. This perpetuates a “fallacy of uniqueness,” leading individuals to believe they are alone in their struggles.
Sharing these deeply personal experiences in a trusted, empathic environment (e.g., a support group) is incredibly healing, transforming invisible stressors into shared experiences that foster connection and understanding.
Strategies for Caregiver Well-being
Social support is the single most powerful variable for well-being in the social sciences. This is especially vital for those caring for individuals with isolating “orphan illnesses” (like PSP, MSA, CBD), where the condition’s complexity can hinder external understanding. Actively pursuing and embracing human connection is paramount.
Counseling: Both individual and group counseling, particularly those with psycho-educational and skill-building components, improve quality of life, lower burden, and can even delay nursing home placement.
Mindfulness: Cultivating a present-focused awareness helps caregivers avoid dwelling on past regrets or future anxieties, grounding them in the “here and now.”
Self-Compassion: Treating oneself with the same kindness and understanding extended to loved ones is crucial, recognizing that self-care is not selfish but necessary.
The film “Marvin’s Room” is recommended. It portrays a dedicated caregiver who reflects on her experience, emphasizing that her deepest fortune was not being loved, but her profound capacity “to love someone so much.” This highlights the ultimate meaning in caregiving.
Finding Meaning and Lasting Impact
The ultimate meaning in caregiving is found not merely in being loved, but in the profound capacity “to love someone so much.”
Caregivers are described as “caring warriors” whose dedication creates a positive impact that will “ripple out across the world,” inspiring others and leaving a lasting legacy.
The empowering final message for caregivers is: “Caregiving is difficult, it is hard, and we can do hard things.”The greatest gift one can give at the end of this journey is their love.
Question and Answer
Question: How can I, as a caregiver, help a family member cope with losses that they’re experiencing? Do you have any thoughts on that?
Answer: As a therapist myself, I’m inclined to recommend getting help from a counselor, from a support group, from someone outside the family, because you can’t do counseling with your family, you can provide caring and love, but their inner struggles would be different from yours. Everyone grieves differently, so may not be having the same experience, and that can lead to conflicts. It’s important to have them go out and be with others. Also, just being compassionate toward them in terms of their experience. We have to keep having a family that’s accessing resources rather than closing off. We can’t work all this out ourselves.
Question: My family member with corticobasal degeneration (CBD) is mute and this is causing me great stress. Do you have any thoughts about that?
Answer: This is a skill set that I don’t specialize in. When I’ve been with my father, friend, and other patients who can’t speak, I’ve improvised. There are resources that are going to be able to support them. I’m sure the people in the CBD support group will give you a tremendous number of ideas. What I relate to in that question is the incredible pain, because when you lose someone that way, if you lose the contact, it’s very deep. I would access resources.