Caregiver's Compass

A very common sentiment we hear from caregivers is the loneliness and isolation felt as a result of misunderstandings between other family members or friends, the feeling that others don’t understand the caregiving perspective and feeling as though there is no one to share the day-to-day highs and lows with. In today’s episode, Stephanie invites her friend and fellow FTD daughter, Jacquelyn Shapiro, onto the podcast to discuss how their friendship formed, their thoughts on friendship in caregiving and how to find community at a time when you feel the most lonely.

About Jacquelyn:

Jackie first learned about AFTD in October 2020, when her mother was diagnosed with bvFTD and learned that the progranulin (GRN) mutation was the cause, despite there being no family history of dementia. Since then, Jackie has used the Instagram @ftdalovestory as a platform to educate others about FTD, advocate for caregivers and families, and discuss genetics and genetic testing. She has been featured in a caregiving documentary, interviews, and several podcasts, and works with researchers and pharmaceutical companies to educate their staff on FTD and how to work with families dealing with dementia. She is currently the New York Ambassador for the AFTD, and a CureGRN Champion.

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

Having just started her career and life as a young mom, Katie Brandt’s entire world changed in an instant when her husband was diagnosed with FTD in his early 30s. The next several years, compounded by care for multiple family members in addition to her young son, threw her in the depths of ongoing crisis. But through her tremendous resiliency and learning, Katie has used her pain and story for change and tremendous ongoing advocacy in ways we often could not imagine.

About Katie:

Katie Brandt, MM is a global advocate, national dementia care expert and Director of Caregiver Support Services, Massachusetts General Hospital Frontotemporal Disorders Unit. As former Co-Chair of the US National Alzheimer’s Project Act Advisory Council, CEO of Katie Brandt Advocacy, and From Care to Cure podcast host, Katie harnesses the power of lived experience as a caregiver for her late husband and father to advance person-centered care, influence policy, and inspire hope that the cure of tomorrow is not so far from the care of today. Learn more about Katie’s story on her website; www.KatieBrandt.org .

Thank you to today's episode sponsor, Eugeria. Eugeria's Idem clock and the Idem Connected Pill Dispenser, are designed to reduce stress for caregivers and help older adults keep their independence and routines. To learn more about the Idem clock visit  https://idem.care/pages/the-idem-smart-clock?utm_source=social+&utm_medium=video&utm_campaign=compassionincaregiving  and enter code COMPASSION10 for 10% off your purchase.

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
 http://www.instagram.com/compassionincaregiving

We have heard about caregiving, we have heard about eldercare, but how often do you hear about working caregivers? This topic is JUST starting to come to the forefront, yet millions of caregivers have been balancing work and care for years and continue to on a daily basis.
 
 In today’s episode, Christa Haanstra, lead for the working caregiver initiative at the Canadian Centre for Caregiving Excellence (an initiative by the Azrieli Foundation), joins Stephanie to talk about the statistics of working care, what we know to be true about caregivers in the workplace and how workplaces can do better to support their caregivers, most who are hidden. Christa also talks about the invaluable skills caregivers bring to their jobs and the reasons why caregivers choose to hide their roles at home.

This is an episode you do not want to miss!

About Christa Haanstra:

Christa has been a public voice in creating awareness of the role of
family caregivers in our society. She is a passionate spokesperson for
better identifying, recognizing, supporting and ultimately integrating caregivers as true partners with health and social care teams.

Christa is the lead for the Working Caregiver initiative at the Canadian Centre for Caregiving (CCCE) – a program of the Azrieli Foundation - and is the past co-chair of CCCE’s lived experience advisory panel: Caregivers CAN. Christa is also the Founder and Managing Director of 4C Strategy group, a company dedicated to advancing meaningful change by working with organizations to ensure lived experiences are at the heart of everything they do.

Find Christa:
 https://www.4cstrategy.ca/our-team
 https://canadiancaregiving.org/
 
*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

The person you care for has a daily routine or activities in their daily life they hope to continue to uphold, but yet when connected to a new home care agency or when in hospital, they are told they may have to modify or change how they approach their activities of daily life. How can these third parties tell you and the person you care for how to participate in activities of daily living and why is this important?

In today’s episode, Stephanie explores the background on why and how third parties can inform care in alternative settings or while using external services and what you can do about this approach to care.
 
*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

 Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

Spencer Cline was only 7 years old when his father was first diagnosed with frontotemporal degeneration (behavioural variant). From a very young age, he witnessed how profoundly this illness affected his father, mother, and entire family. Today, Spencer is a passionate advocate for FTD, dedicated to changing the narrative around the disease and supporting those impacted by it. He recently biked 3600+ miles across America to raise awareness about FTD and continues to speak publicly and educate others, driven by his commitment to help end this devastating illness.

In today's episode he talks about his profound experience of love, loss and change.

About Spencer:

Spencer Cline became familiar with FTD at a very young age, as his father started exhibiting behavioral changes shortly after he was born. His dad was diagnosed with bvFTD when Spencer was seven years old, then was diagnosed with the C9orf72 genetic variant, which is linked to both FTD and ALS. After watching his dad fight the disease until he passed in 2012, Spencer developed a passion for spreading awareness in hopes to find a cure – a passion that has only grown with time. He has organized multiple fundraising/awareness events with the Babson College men’s basketball team, biked across the U.S. in support of FTD in 2024, and was Keynote Speaker at AFTD’s 2025 Hope Rising Benefit. He also serves as an AFTD Ambassador.

Find Spencer on Instagram: @spencer_cline22

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!

http://www.instagram.com/compassionincaregiving

Vivian Stamatopoulos - advocate, professor, and long-time researcher in the field of caregiving and long-term care-joins the podcast to uncover the hidden truths about our long-term care system. Vivian shares what she realized during COVID about the nursing home crisis, where long-term care stands today, and the significant changes needed to improve care and shift the narrative for those living in nursing homes and the people who love them the most. This powerful conversation shines a light on what must happen to create a more positive and dignified future for long-term care.

About Vivian:

Dr. Vivian Stamatopoulos is an Associate Teaching Professor at Ontario Tech University and one of Canada’s leading experts on family caregiving, child and youth-based caregiving (young carers) and long-term care. With a PhD in Sociology, her research focuses on the experiences of family caregivers (particularly young carers/caregivers) and the systemic challenges facing older adults in institutional care.

During the COVID-19 pandemic, Dr. Stamatopoulos emerged as a nationally recognized advocate for long-term care reform. She became a prominent media commentator and policy voice, exposing the devastating impact of systemic neglect, inadequate staffing, and profit-driven models of care on vulnerable residents. Often referred to as a “long-term care crusader,” she has worked alongside families, legal advocates, and community organizations to push for meaningful change in elder care policy.

Her expertise has been sought by policymakers, parliamentary committees, and grassroots advocacy groups and beyond academia, she continues to amplify the voices of residents and families, insisting that dignity, transparency, and accountability must be at the center of Canada’s care system. For her scholarship and advocacy work, she has earned various recognitions, including KITE-UHN’s Paper of the Year Award (University Health Network), The Doris Anderson Award (Chatelaine Magazine), The Orville Thacker Award (Ontario Health Coalition), Health Hero (Best Health Magazine) and Vaccine Hero (Toronto Star).

Find Dr. Vivian Stamatopoulos on X:  https://x.com/drvivians?lang=en

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!

http://www.instagram.com/compassionincaregiving

Carla Velastegui began caring for her mother with Parkinson’s disease while still in high school, experiencing both the challenges and deep insights that caregiving can bring. In this episode, Carla shares how those early experiences shaped her life, her relationships, and her future. She discusses the ups and downs of her caregiving journey and how it inspired her career as a consultant working with organizations to adapt and implement technology to assist and transform the caregiving experience. 

About Carla: Carla Velastegui is a healthcare technologist and long-term caregiver whose early caregiving experiences continue to shape her work in healthcare, technology, and policy. Since her teenage years, she has cared for her mother, diagnosed with young-onset Parkinson’s Disease in 2010. This perspective informs the systems and solutions she helps design, with a commitment to placing patients, caregivers, and their supporters at the center. 

Known for her deep understanding of healthcare and technology, Carla is a dedicated advocate, global speaker, and thought leader in the caregiver community. She has led digital health initiatives, advised on policy and innovation strategies, and worked across startups, government, healthcare, and research organizations. She serves on the boards of Acclaim Health and YWCA Hamilton and holds advisory roles with the Parkinson’s Foundation, Canada’s Drug Agency, and other healthcare and research organizations.

Passionate about ethical, inclusive, and practical health technologies, Carla brings lived experience and professional expertise to conversations about caregiving, patient engagement, and equity, focusing on how AI and emerging technologies can help shape systems that reflect the realities of care.

Find Carla: 

https://www.linkedin.com/in/carla-velastegui/?originalSubdomain=ch

Visit us on our website to see all that we offer for caregiver support:

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

www.compassionincaregiving.com

For more visit our Instagram!

http://www.instagram.com/compassionincaregiving

In this episode, we dive into the numbers behind caregiver mental health, sharing Canadian statistics that reveal just how many caregivers, including those who are working caregivers, face similar challenges. While it can often feel like you’re alone in your struggles, the truth is that far more people are experiencing the same difficulties than you may realize. Stephanie breaks down the facts to help you feel seen, supported, and connected in your caregiving journey.

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!

http://www.instagram.com/compassionincaregiving

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

In this episode, Stephanie explores a common question caregivers face: Do I need to change my entire routine to feel better if I am overwhelmed as a caregiver? When self-care feels overwhelming or unattainable, is a complete lifestyle overhaul the only answer-or can small, realistic steps make a real difference? Stephanie shares insights on what truly helps when you’re feeling stretched thin, offering practical ideas to support your well-being without adding more pressure.

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!

http://www.instagram.com/compassionincaregiving

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Dr. Adrianna Shnall, program director at the Baycrest Kochinsky Centre, has been a social worker and clinician in the field of aging and caregiving for over 30 years. In today’s episode, she shares her top learnings in the field, what she feels is the most noteworthy in the area of aging and caregiver mental health today, and what may be on the horizon for caregivers in the future.

Dr. Adriana Shnall: , PhD, MSW, RSW, serves as the Program Director of the Koschitzky Centre for Innovations in Family Caregiving at Baycrest in Toronto. With over 30 years of clinical experience, Dr. Shnall has made significant contributions to the field of gerontology, working with older adults and their families across various settings, including outpatient community services, long-term care, and inpatient services. Her extensive experience and dedication to improving the lives of older adults have earned her prestigious recognitions, such as the Baycrest Outstanding Innovations Award and the Stephen Herbert Award for Excellence in Education. In addition to her clinical work, Dr. Shnall is an Assistant Professor at the University of Toronto. She teaches graduate courses related to “Caregiving and Aging” and “Aging and Health” at the Factor- Inwentash Faculty of Social Work and at the Institute for Life Course and Aging. Dr. Shnall is also deeply involved in advocacy and community service. She is a board member of the Petro Canada CareMakers Foundation, which supports family caregivers, and the Ontario Caregiver Coalition and participates in numerous local, provincial, and national advocacy tables. Her involvement in these organizations demonstrates her commitment to influencing policy and improving support systems for caregivers and older adults on a broader scale.

A respected speaker, Dr. Shnall frequently presents on topics related to family caregiving, aging, and dementia. Her presentations are informed by her rich background in clinical practice, education, research, and leadership. By sharing her insights and experiences, she empowers healthcare providers, family caregivers, and the general public to enhance their quality of life and that of the individuals they care for. Dr. Shnall’s work is characterized by a seamless integration of clinical practice, education, research, and leadership. Her holistic approach ensures that she addresses the multifaceted needs of older adults and their families, providing comprehensive support and innovative solutions. Her dedication to the field of geriatric care and her numerous contributions make her a leading figure in the area of family caregiving and aging.

Through her ongoing efforts, Dr. Adriana Shnall continues to make a significant impact on the lives of older adults, their families, and the professionals who serve them, ensuring that the quality of care and support available to this population is continually enhanced and improved.

Find Adrianna on LinkedIn: https://www.linkedin.com/in/dr-adriana-shnall-phd-msw-rsw-88b8a4150/?originalSubdomain=ca

C-CART: https://c-cart.baycrest.org/

Visit us on our website to see all that we offer for caregiver support:
www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or ment