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In my younger days, we relied on Coles Notes as our go-to resource for condensing book content. Today, we have other tools at our disposal, but the need for concise summaries remains. As someone who unexpectedly became an informal caregiver for my mother with Alzheimer’s disease while also navigating new motherhood, I understand the challenges firsthand. With my mother’s diagnosis at the age of 57, just three weeks after my son was born, I embarked on a 20-year journey of caregiving within my own home.

Back in 2000, there were limited resources for caregiving in Canada, especially for the sandwich generation caregivers like myself who were simultaneously caring for aging parents and young children. Despite the lack of support, I persisted, stumbling and learning along the way. I wrote books, produced podcasts, and completed my dissertation while caring for my mother. Even after her passing in 2020, I remained committed to raising awareness about Alzheimer’s disease and supporting caregivers.

My dissertation, completed in 2022 and published in 2024, delves into the longitudinal effects of sandwich generation caregivers of Alzheimer’s parents in palliative care. It’s my attempt to distill the essence of my academic work into a more accessible format, highlighting the crucial role of informal caregivers and advocating for better support and policy changes.

This isn’t just a personal story; it’s a call to action. With dementia statistics on the rise, we can’t afford to overlook the invaluable contributions of informal caregivers. They not only provide essential care for their loved ones but also save the healthcare system billions of dollars. It’s time to prioritize their needs and implement meaningful policy reforms. I invite you to explore my research and join me in advocating for change.

My dissertation focuses on the experiences of individuals in the Sandwich Generation who are caring for both their elderly parents with Alzheimer’s disease and their own children simultaneously. These caregivers face unique challenges as they balance the needs of two generations, a situation that’s becoming increasingly common as dementia rates rise globally.

Alzheimer’s disease, the most common form of dementia, affects millions worldwide, yet there’s surprisingly little research on how caregivers manage end-of-life care for Alzheimer’s patients at home, especially within the Sandwich Generation. This gap in research highlights the urgent need to understand the experiences of these caregivers and provide them with adequate support.

In Canada, where wait times for long-term care facilities can stretch for years, many families opt to care for their aging parents at home. With dementia rates on the rise, the demand for research on caregiving is evident, particularly within the Sandwich Generation.

Despite efforts to explore caregiving in previous research, there’s a lack of focus on informal caregiving for Alzheimer’s patients within the Sandwich Generation. This study aims to fill that gap by examining the ongoing challenges faced by caregivers providing palliative care at home. Using qualitative methods, particularly phenomenology, this research seeks to shed light on the emotional, financial, and mental toll experienced by informal caregivers in this situation. By understanding their experiences, we can advocate for better support systems and policies to alleviate the burden they face.

Ultimately, this study aims to benefit informal and formal caregivers, communities, healthcare professionals, and policymakers by providing insights that can lead to improved support for caregivers in the Sandwich Generation. Through systematic data collection and analysis, this study endeavors to answer crucial questions regarding the experiences of informal caregivers in the Sandwich Generation, offering invaluable insights to support this vulnerable group.

The research questions guiding this study are as follows:

1. What burdens do sandwich generation caregivers experience while providing palliative care to their parents at home? This question seeks to understand the challenges and difficulties faced by caregivers as they navigate the responsibilities of providing palliative care to their parents, particularly within the home setting.
2. How do sandwich generation caregivers of parents with Alzheimer’s disease navigate the transitional experiences until the end of life? This question aims to explore the journey of caregivers as they accompany their parents with Alzheimer’s disease through the various transitions leading up to the end of life, shedding light on their experiences and coping mechanisms.
3. What types of support do sandwich generation caregivers offer to their parents while caring for them at home? This question delves into the types of assistance and care provided by sandwich generation caregivers to their parents, examining the various forms of support offered within the home caregiving context.

By addressing these research questions, this study seeks to provide comprehensive insights into the experiences of informal caregivers in the Sandwich Generation, ultimately contributing to the development of better support systems and resources for this caregiving population.

In my dissertation, I explore the critical role of caregivers within the Sandwich Generation, shedding light on their experiences and the support they urgently need. Here are some key takeaways from my research:

1. Rising Aging Population: With Canada’s population getting older, there’s a growing demand for long-term care homes. However, the shortage of such facilities highlights the importance of informal caregivers, especially those in the Sandwich Generation, who often find themselves caring for both elderly parents and their own children.
2. Impact on Caregivers: Informal caregivers, like those in the Sandwich Generation, provide crucial support to individuals with dementia, allowing them to stay in their homes where they feel most comfortable. But caregiving comes with significant physical, emotional, social, and financial challenges, leading to caregiver burden. By understanding the experiences of Sandwich Generation caregivers, my research aims to highlight their unique struggles and the support they desperately need.
3. Healthcare System Savings: Informal caregivers make substantial contributions to the healthcare system by providing the majority of care for individuals with long-term health issues. By quantifying the economic value of informal caregiving, my research advocates for greater recognition and support for caregivers within the healthcare system.
4. Changing Demographics: The concept of the Sandwich Generation has evolved over time, encompassing individuals who care for both aging parents and dependent children. As demographics continue to change, understanding the needs of Sandwich Generation caregivers becomes increasingly important for policymakers and service providers.
5. Urgency for Research: With limited infrastructure in long-term care homes, an aging population, and shifting demographics, there’s an urgent need to study the experiences of informal caregivers, especially those in the Sandwich Generation caring for parents with Alzheimer’s in palliative care. By addressing this research gap, my study aims to provide insights into caregiver needs and inform the development of targeted support programs.

My dissertation offers valuable insights that can advance scientific understanding, influence policy decisions, and enhance support for informal caregivers. By improving the quality of care for individuals with dementia and their families, this research has the potential to make a significant impact on society as a whole. I delve into the challenges faced by those who care for both their elderly parents with Alzheimer’s disease and their own children until their parents pass away. Here’s what my study aims to achieve:

1. Understanding Caregiver Experiences: We’re seeking to gain insight into the experiences of caregivers in this unique situation. By asking specific questions, we aim to uncover the difficulties they face and identify areas where they need more support.
2. Enhancing Support: Through our research, we hope to highlight the significant challenges encountered by these caregivers. By shedding light on their struggles, we aim to advocate for better support programs not only in Canada but potentially in other countries as well.
3. Acknowledging Limitations: While we strive to uncover as much as we can about caregiver experiences, we recognize that our study has limitations. There may be aspects of their experiences that we’re unable to capture fully. However, despite these limitations, we’re optimistic that our research can contribute to improving the lives of caregivers in the future.

The goal is to gain a deeper understanding of the caregiving journey and advocate for better support systems. While we may not uncover every aspect of caregivers’ experiences, we’re hopeful that our research can make a positive impact and alleviate some of the burdens they face.I had the opportunity to interview seven remarkable women who belong to the sandwich generation caregiver demographic. These caregivers are tasked with caring for both their aging parents and their own children simultaneously. Due to challenges in finding local participants in Ontario, Canada, exacerbated by the pandemic, I turned to social media platforms to connect with individuals willing to share their caregiving experiences.

Originally, I had planned to conduct in-person interviews, but given the COVID-19 restrictions, we adapted to virtual Zoom interviews. Despite these changes, I successfully interviewed seven women, hailing from various locations including Canada, Trinidad & Tobago, and the USA. The participants’ ages range from 42 to 56 years old, representing a diverse group with different ethnic backgrounds. Most participants are Canadian, with three originating from Trinidad, four residing in the Greater Toronto Area, and one from Alabama, USA.

In terms of marital status, three of the participants are married, while four are divorced. All participants have attained at least some level of college education. Geographically, five participants live in urban areas, while one resides in the suburbs. Three of the caregivers are currently providing care for their parents at home, while the others have already experienced the loss of their parents. Despite the challenges posed by the pandemic, we conducted insightful interviews over Zoom, supplemented by follow-up communication through emails and phone calls. These interviews provided valuable insights into the experiences of sandwich generation caregivers, enriching the findings of my dissertation.

The emotional journey of being a caregiver is like riding a rollercoaster, with ups and downs at every turn. Caregivers often feel frustrated, guilty, overwhelmed, and exhausted as they navigate their responsibilities. The demands of caregiving take a toll on their mental health, leading to feelings of sadness, helplessness, and fear about the future. Additionally, caregivers experience anticipatory trauma as they witness their loved one’s decline, further adding to their emotional burden.

Despite the challenges they face, caregivers often lack the support they need to cope with their emotions. Many feel isolated and overwhelmed, with limited access to resources and assistance. Balancing caregiving duties with parenting responsibilities also takes a toll on their ability to be fully present with their children. My research sheds light on the emotional challenges faced by sandwich generation caregivers, highlighting the need for greater support and understanding. By recognizing and addressing these challenges, we can better support caregivers on their journey and ensure they receive the help they need.

I chose a method called phenomenology to understand the experiences of sandwich generation caregivers deeply. This approach allows us to see how each person’s journey is unique and shaped by their life story. Caregivers shared their stories with us, and we listened carefully to grasp their struggles and challenges. The findings revealed that sandwich generation caregivers face enormous challenges. They often lack the support needed to balance caring for their parents and their children. Committing to caregiving at home leaves them with little help from their communities, and juggling these roles takes a toll on their own well-being, leading to health concerns.

During the study, I uncovered some unexpected insights. For instance, grandchildren developed empathy for the elderly through this experience. Additionally, caregivers experienced psychological effects such as trauma and insomnia, which were not initially part of our focus. Moving forward, it’s crucial to advocate for better support for these caregivers and their families. We need more research to understand their experiences over time and explore ways to provide them with the assistance they desperately need. Policy changes may also be necessary to improve support services.

While the study offers valuable insights, it has its limitations. Qualitative research like this may not apply to everyone, but the in-depth interviews helped to understand each caregiver’s unique situation. Additionally, the diverse group of participants enriched our findings. The study sheds light on the challenges faced by sandwich generation caregivers of Alzheimer’s patients in palliative care. By understanding their experiences better, we can work towards providing them with the support they desperately need.

Recommendations from the research:

Addressing PTSD and Training Needs: Future research should delve into the prevalence of PTSD among caregivers and the impact of their lack of medical training. Many caregivers reported being unprepared for medical emergencies like seizures or coping with death at home. Understanding these challenges can inform training programs and support services.

Importance of Supportive Spouses: The role of supportive spouses in caregiving was highlighted by several participants. Research should explore how spousal support impacts caregiver well-being and the caregiving experience. This could inform interventions to strengthen familial support networks.

Long-Term Effects on Children and Grandchildren: While this study found some positive effects on children, more research is needed on the long-term impact on grandchildren. Specifically, investigating issues like residual trauma, secondary PTSD, and grief among grandchildren can provide valuable insights into their needs and experiences.

Expanding Research Horizons: This study is just the beginning. There are many avenues for further research, including exploring the emotional journey of caregivers who leave their careers to care for loved ones, investigating the challenges of reintegrating into society after caregiving ends, conducting larger studies involving more sandwich generation caregivers to capture a broader range of experiences, and examining the concept of “living grief” and its effects on caregivers’ mental health and well-being over time.

Recommendations for Caregiver Support: Support for Burdened Caregivers: Caregivers need comprehensive support, including setting up in-home hospice care, additional nursing or personal support worker hours, and access to psychological and emotional counseling. Regular medical check-ups for caregivers by the doctors treating their parents are also crucial for their well-being.

Support during Transitional Phases: Caregivers require ongoing support during the transition to end-of-life care for their parents. This support should include both medical assistance, such as hospice care, and mental health support for both caregivers and their families. Lack of support during this critical phase can lead to long-term challenges, including PTSD.

Enhancing Support in the Home: There is a clear need for increased support in the home for caregivers. This includes not only medical assistance but also mental health support and ongoing grief counseling for the entire family. It’s essential to prepare families for the emotional and practical challenges of dealing with death at home.

Assistance After Caregiving Ends: Caregivers need support as they transition back to life after caregiving. Many have sacrificed their careers and personal well-being, and they require assistance in rebuilding their lives. Respite relief and career support services can help caregivers navigate this challenging transition period.

Taking care of aging parents while also raising children is no easy feat, especially when it comes to end-of-life care. In a recent study, informal caregivers shared their stories of navigating the complexities of palliative care for their parents while fulfilling their duties to their own families. The findings shed light on the emotional and financial strains faced by these caregivers, highlighting the urgent need for more support.

Many caregivers opened up about the challenges they face, expressing frustration at managing everything on their own without much help from family or the community. Imagine trying to care for a sick parent while also balancing the needs of your own kids and other responsibilities – it’s tough, and it can feel incredibly isolating.

Guilt is another common emotion among caregivers. They often feel guilty for not being able to spend enough time with their children or for taking any time away from their caregiving duties. The weight of these responsibilities can be overwhelming, leaving caregivers feeling stretched thin and emotionally drained.

The study also revealed the toll caregiving takes on mental health. Many caregivers reported feeling depressed, anxious, and overwhelmed by the uncertainty of their loved one’s condition. Financial stress adds another layer of burden, making it even harder to cope with the demands of caregiving.

Despite the challenges, caregivers also spoke of moments of fulfillment and connection in their caregiving journey. However, the lack of support – both emotionally and financially – remains a significant issue. This study emphasizes the critical need for additional support for both caregivers and their loved ones.

Moving forward, the findings of this study can serve as a valuable resource for other sandwich generation caregivers facing similar circumstances. By raising awareness of the need for greater support and providing insights into the caregiving experience, this research aims to empower caregivers to advocate for the assistance they require.

In conclusion, caregiving for aging parents with dementia until the end of life presents significant challenges for informal caregivers, particularly those in the sandwich generation. The study underscores the need for better support systems to help caregivers navigate these complexities with confidence and resilience. Despite its limitations, the study provides valuable insights into the experiences of caregivers, contributing to a better understanding of the complexities involved in end-of-life care.

And if you are so inclined and need to know more … here is the ProQuest Link