In this interview with Stanley Ugagbe of The Nigerian Canadian Newspaper, Canada, Christiana Egi, an exceptional Dementia Advocate, shared insight on why she dedicated herself to positively influencing dementia care. She also delineated the journey so far, sharing both successes and challenges.
NCNC: Thank you for finding time to have this interview with us. You’re quite an accomplished professional. With your extensive experience in dementia care, how do you plan to leverage your background as a Registered Nurse, Diabetes Educator, and Mental Health Specialist?
Egi: For 25 years of my 35-year nursing career in Canada, I’ve dedicated myself to positively influencing dementia care. As a committed advocate for dementia and mental illness, my passion, coupled with the support of my late husband Anthony, led us to establish memory care retirement facilities, specifically Alexis Lodge Retirement Residences in Toronto. Here, we prioritize person-centered and relational care, creating a home-like environment for our residents to maintain a quality of life in a familiar setting with comprehensive support and care. Above all, we believe that everyone deserves to live with dignity and respect, irrespective of a diagnosis of dementia.
In my role as a children’s book author, I develop educational resources for both children and adults. My aim is to empower them with a better understanding of how to support and care for their loved ones, treating them with the utmost respect and dignity. This effort is geared towards demystifying, raising awareness, and destigmatizing dementia, mental illness, and ageism.
As the co-host of the “Our Forever Young” podcast, I engage with experts to share insights on mental and physical wellness, with a primary focus on brain health and the prevention of dementia.
Despite my continuous efforts, I’ve observed persistent challenges faced by racialized communities, encompassing issues such as inequality, bias, health disparities, discrimination, and financial struggles. Motivated by this awareness, I founded the charitable organization “A Rose For Grandma Wellness Hub” last year. This initiative is centered on supporting individuals with dementia and their caregivers in underserved communities. Many families in these communities silently suffer due to a lack of awareness about the disease, available resources, and how to access them. Numerous older individuals lack the knowledge and skills to navigate both the internet and the healthcare system. Additionally, they grapple with the dual burden of stigma and inadequate resources, compounded by financial hardships which could lead to caregiver burnout.
NCNC: Can you elaborate on the innovative approaches you’ve implemented at Alexis Lodge Retirement Facilities to ensure person-centered care for individuals with dementia, and how these approaches differ from traditional institutional models?
Egi: Alexis Lodge is a non-institutional, home-like facilities where residents receive care infused with love, respect, and dignity, catering to those who can no longer be cared for at home by their loved ones. At the heart of Alexis Lodge is the commitment to a home-like atmosphere achieved by organizing residents into small family-like groups, following the green-house model. This model has been formally recognized for providing the optimal environment for individuals with advancing dementia.
Through my firsthand experience, I have witnessed the positive impact of establishing a supportive and flexible environment for people with dementia and their families.
NCNC: How do you maintain a balance between providing compassionate care for individuals with dementia and operating Alexis Lodge Retirement Facilities as a successful business?
Egi: Balancing compassionate care with running a successful business is a delicate challenge for me as an individual. Our primary goal is to sustain the well-being of our residents, affectionately known as the Alexis Lodge family. Despite this necessity, witnessing the emotional, psychological, and financial struggles faced by families has prompted me to extend support in various ways. This includes the creation of my children’s books, participation in the Our Forever Podcast, and the establishment of the charitable organization, A Rose For Grandma Wellness Hub.
NCNC: Given your role as a co-host of the podcast “Forever Young,” how do you utilize this platform to educate the public and advocate for better understanding and support for individuals affected by dementia?
Egi: My experience at Alexis Lodge over the past couple of decades has motivated me to utilize my expertise in health and wellness by creating a podcast aimed at inspiring people to transform their lifestyles for better health and well-being. One striking observation that prompted this initiative was witnessing the diverse physical abilities of residents spanning various age groups. It was intriguing to see individuals in their late 90s exhibiting greater physical fitness than some in their 70s.
This observation reinforced my understanding of wellness, emphasizing the significance of what we invest in our health over the years. It served as a poignant reminder that our later years reflect what we have deposited into our health “bank”. Moreover, it underscored the importance of lifestyle changes in preventing or mitigating chronic diseases such as dementia, diabetes, and high blood pressure, we are better equipped to guard against their debilitating impacts in the long run.
NCNC: What specific challenges have you encountered in your 35-year nursing career, particularly during your tenure in the crisis unit of Canada’s largest psychiatric hospital, and how have these experiences shaped your approach to dementia care?
Egi: Over 36 years ago, my advocacy for individuals with dementia and mental illness began during my first year as a student nurse. The turning point was a mental health rotation at a chronic psychiatric hospital, dispelling fearful stories. Witnessing patients, much like us, sparked my commitment to eradicating mental health stigma.
Upon becoming a Registered Nurse in Canada, I worked in the crisis unit of the Centre for Addictions and Mental Health. In a decade, I saw a troubling cycle—the stabilization and discharge of patients, only to have them return. Discussing this with my late husband Tony, I expressed that adequate supportive housing could break this revolving door pattern.
After the birth of my third child, Alexis, my husband and I founded Alexis Lodge Retirement Residence. Our vision was to create a safe, loving environment that enhances the dignity and abilities of residents, breaking the cycle of the revolving door experienced by those living with dementia. Despite over two decades of positive impact, the pain persists, as many residents in my facility face dementia alone.
NCNC: Can you discuss the impact of the green-house model on the wellbeing of residents at Alexis Lodge Retirement Facilities, and how this approach differs from more traditional long-term care settings?
EgI: -The small, family-like environment at our non-institutional, home-like setting fosters intimacy and a sense of family.
-Our care is centered on the individual, considering their past history, preferences, routines, and unique needs.
-Residents enjoy a relaxed yet structured environment tailored to their unique needs, recognizing the diversity in dementia symptoms and care requirements.
-Our staff have the autonomy to care for residents from the heart, treating them like cherished family members.
-Prioritizing well-being, residents actively engage in daily activities like folding laundry, setting the table, and impromptu dance parties.
-Residents have the opportunity to age in place, staying in a home they recognize, receiving support during their most vulnerable times.
-Alexis Lodge’s positive congregate setting promotes holistic well-being, addressing social, emotional, psychological, physical, and spiritual needs.
NCNC: As an author of children’s books on Alzheimer’s and other types of dementia, how do you tailor your messaging to effectively educate young audiences about these complex topics?
Egi: My books were written for both adults and children, serving as catalysts for conversations about the challenging and often misconstrued subject of dementia. Despite the global prevalence of dementia, it remains one of the most misunderstood conditions. It’s crucial to recognize that dementia is not a singular disease but rather a collection of symptoms impacting memory loss, reasoning, familiar tasks, language, and more.
The journey through dementia can be very challenging, breaking the very fabric that binds families together. My books strive to unveil the veil of mystery surrounding dementia, breaking it down into easily understandable language. Drawing from real-life situations accumulated over my years of experience, the narratives resonate with families, illustrating how they can collaboratively support loved ones grappling with dementia.
The main goals include dispelling the stigma associated with dementia, making it a familiar household topic. Additionally, there is a special emphasis on involving children as care partners. Children, with their innate creativity, resilience, and strong support capabilities, bring valuable contributions to the caregiving process. However, it’s essential to acknowledge that children are highly sensitive and can be negatively affected when they perceive a lack of understanding, especially in situations where they feel their grandparents may no longer love them. Transparency and honesty are integral in addressing these concerns.
To amplify the reach of my message, I am actively sharing information about my books through various channels, including media interviews on major networks, guest appearances on podcasts, engagement on social media platforms, and community presentations.
NCNC: As a woman of faith, how do you integrate your beliefs into your approach to caregiving, and how does this influence the culture and atmosphere at Alexis Lodge Retirement Facilities?
Egi: At the forefront of my thoughts is the golden rule from the Bible: “Do to others as you would have them do unto you.” This principle resonates strongly with my well-versed staff. Over the past 25 years, I’ve diligently worked to establish an inclusive and supportive home. In the unfortunate event that either I or any of my staff require a care home in the future, our families can trust Alexis Lodge without hesitation. Here, the well-being of residents takes precedence.
Dementia or any other ailment doesn’t discriminate—it could affect any one of us. It’s crucial not to judge or become desensitized to the struggles of others. Personally, I derive immense joy from making a positive impact on others’ lives. Every day at Alexis Lodge, my goal is to bring a smile to someone’s face!