Dementia Dialogue

Culture and Communication - The System Journey

Ngozi Iroanyah recounts some of her father, Felix’s, experience with dementia, and how she as a daughter, along with her stepmother Gean and brothers Azu and Chuck, are supporting him. Ngozi shares some of her “techniques” in trying to keep connected to various health care providers and the family and to manage transitions that they all confront, as her dad’s dementia proceeds. Cultural awareness and communication as well as early action are all important considerations.

Eighty-one-year-old Felix, who was diagnosed much to his and his family’s shock with dementia in 2008, immigrated to Canada in 1972 from Nigeria in West Africa by way of the U.K. Being in health care herself, Ngozi, has been able to help facilitate the coordination and maintenance of care with all of the different, “siloed” care partners within their care team, by keeping a flow of information between them all as well as her family.

She discusses the importance of this connectivity and filling in the knowledge gaps with care providers about specific cultural and personal information, to help dementia patients feel comfortable, safe, and happy. She talks about the need for systems and training to support the support staff in better caring for their patients in this way.

Ngozi also touches upon different cultural perceptions about aging and dementia and the need to have more awareness regarding elder care planning and caregiver support in racialized communities.

The Alzheimer Society of Canada has a tool available for download on their website called All About Me, a booklet that provides specific information about a dementia patient to their care providers.

A sample booklet can be found here:

https://archive.alzheimer.ca/sites/default/files/files/national/core-lit-brochures/all-about-me_booklet.pdf 

 

The Healing Conversation

Ron Roberts was diagnosed with Alzheimer's Disease 5 years ago. Except for being told he had AD and could no longer drive, not much more information was provided to him. After doing his own research on how to maintain his health, among other things, Ron enrolled in the BA program at Kings College at Western University and plans to get his degree in 2021.

Ron also speaks to medical and social work students at Western and shares some of his message to students. As a Metis, Ron also briefly touches upon the experience of indigenous people. His core message is about the importance of listening and encouragement in a therapeutic conversation.

Growing up in a large family in Halifax, Ron dropped out of high school in the 1940s in favor of earning a living. At 16 he interviewed for a job in broadcasting and not only got the job but started the very next day, thus beginning a decades-long career in journalism. However, he always had a “bucket wish” to attend university, something that was still considered “elitist” in his younger years and has found the combination of intellectual and social stimulation very helpful in managing the progress of his dementia. He is also a big proponent of physical activity to the same end.

Ron advocates for evidenced-based strategies for living with dementia by utilizing the experience and expertise of those doing so, greater access to information on dementia at the first medical point of contact and the need for more time and consideration to be paid to aging patients and any cultural sensitivities that may be present.

By Us For Us is a series of booklets prepared by people living with dementia and care partners and provide useful guidance on different aspects of dementia from a lived experience perspective.

https://the-ria.ca/wp-content/uploads/2018/11/BUFU-Guide-Before-Early-Diagnosis_AODA.pdf 

Navigating the System

​​Learning what helps are available and how to use them is a major issue for people with dementia and care partners. One of the major issues in Primary Care is time. This is especially a challenge in caring for a patient with dementia. Michelle Janisse, MSW is a First Link Navigator who describes her role in working with families to navigate the system and with Primary Care to bolster their capacity to support people living with dementia. As a service of the Alzheimer Society in many locations, First Link helps connect people to education and community resources. Listen to Michelle as she describes her role in helping people and health providers in Chatham-Kent, a mixed urban-rural area of southwestern Ontario.

Michelle discusses the importance of First Link in optimizing and coordinating all of the different services and supports available to people living with dementia and their families, from pre-diagnoses through the continuum of the journey, even without a doctor’s referral.

She also talks about the difficulty some face of simply receiving an initial Alzheimer’s or dementia diagnosis, due to the hesitation or ability of a primary care provider or the lack of one entirely. This highlights the need for a collaborative approach between health care professionals, community partners, and families.

For more information about the Alzheimer Society First Link program, go to: https://alzheimer.ca/en/help-support/programs-services/first-link

 

Transitions: Doing Our Best Part 1

Rachel Hofstetter’s parents, Chris and Dorothy Quick are living with dementia. Before they moved into the same long term care home at different times, Rachel recounts some of the challenges and transitions that they experienced. These challenges include decision-making, driving, admission into long-term care, and working with multiple providers. Rachel received support from a MINT Memory Clinic. Monica Wood and Cara Dowhaniuk work at the memory clinic and along with Rachel, they describe how they support families like Rachel’s and collaborate with other primary care providers.

Having two parents at different stages of cognitive decline can be overwhelming, as Rachel explains, especially when it comes to understanding your role and having to navigate new power-struggles, regarding resistance to relinquish their autonomy and privacy.

She tells us of a pivotal moment, amidst concerns of her father’s fitness to be her mother’s caregiver countered with her parent’s desire to guard their independence and life together, when a wrenching incident changes everything.

Rachel then talks about how she often felt lost or “bounced around” within the system but found great support at the MINT Memory Clinic.

Monica discusses the limitations to care in every healthcare model, particularly with regards to general practitioners and their lack of time or scope within their practice to fully investigate a complex disease like dementia. She then describes how MINT Memory Clinics are specifically designed to serve and assess these patients more fully.

More information about the MINT Memory Clinics in Ontario can be found at: https://mintmemory.ca/ 

Transitions: Doing Our Best- Part 2

In Part 1, we heard from Rachel about her Mom’s growing dementia and of her need to move to long term care, despite her father Chris’ reluctance. We were also introduced to Monica and Cara who work at a MINT Memory Clinic supporting families like Rachel’s. Rachel reflects on her experience as a daughter of parents with dementia and some of her lessons learned while Monica and Cara discuss what their practice goals and challenges are.

In Part 2 of this episode, Rachel relates some stories and struggles she has faced with knowing when to intervene and where to turn to, when witnessing “micro incidents”, as she describes them, by her father that was otherwise going undetected by the family doctor.

An in-depth conversation follows on the topic of the challenging transitions that the children and family of dementia patients have to facilitate, from driving to independent living. This highlights the services and supports that the MINT Memory Clinic provides and the importance of the therapeutic relationships that they develop.

They also discuss how crucial the care of the caregivers is and how to support them through their caregiving journey with compassion, communication, and collaboration.

For more information about MINT Memory Clinics, go to: https://mintmemory.ca/ 

 

 

Dementia, Stigma and Taking Action –

Dementia, Stigma and Action – Human Rights

    In this episode of our series on Human Rights and Dementia we listen to 3 women who are active in the struggle to overcome the stigma experienced by so many people with dementia and that often extends to their families. Alisa Grigorich reads an article that she and her colleague Pia Kontos recently wrote on “COVID-19, stigma-  and the scandalous neglect of people living with dementia”. Phyllis Fehr, a dementia activist joins Pia in conversation about her experience of stigma and is working to combat it. Pia discusses a new project Reimaging Dementia that will mobilize people to pursue goals identified by individuals with dementia to improve their social and cultural well-being.

Transitions- A Rural Dementia Resource for rural communities

Leanne Lawrence and Jean Daku live in rural Saskatchewan where Leanne’s mother, Marjory lived her whole life. We learn how Jean, a nurse practitioner, championed a memory clinic practice model within the Kipling Primary Care Centre and she and others supported Leanne and her mom as dementia developed. Enabling residents of rural areas to receive high-quality service is an important contribution to these types of clinics.  Often services exist but the clinic helps organize and coordinate them and to advocate when gaps emerge. 

Leanne explains some of the challenges of having to travel long distances for health care when dealing with dementia and how negatively that can impact the person living with it, such as confusion, agitation, and a general worsening of their condition. This really highlights the need for access to services in rural areas.

Noticing the major gap in care, Jean started working with the RaDAR group from Saskatoon to bring in more education and ways of dealing with dementia into small rural communities. Her multidisciplinary memory clinic has a team-based approach, with physicians, home care nurses, physical therapists, occupational therapists, social workers, and the Alzheimer Society First Link coordinator.

Both guests emphasize how critical communication and the coordination of care is for people living with dementia and for their care partners, to enhance the quality of life and how building a community framework is so beneficial. They also speak to how helpful social, mental, and physical stimulation is for the patient is as well.

For more information on RaDAR visit: https://cchsa-ccssma.usask.ca/ruraldementiacare/index.php 

Transitions: Shared Care in Dementia

Dr. Ajantha Jayabarathan practices family medicine in Halifax NS. By adopting a shared care framework from mental health, Ajantha describes how she provides family-oriented dementia care in collaboration with other service providers. We get a glimpse of the comprehensive approach Ajantha strives for, though it is not always easy as service access or availability is often uneven.  We also hear about the relationship that can build over time between a family physician and her patients, including their families.  

Born and raised in India, Dr. A.J. (as most people call her) immigrated with her family to Canada where she went on to study medicine at Western University in London ON. She has now practiced family medicine for thirty years and has a clinic called Coral Shared-Care Health Centre in Halifax NS, where she focused on collaborative care and relationship building.

She shares many examples of the benefits of these collaborations and relationships, from patient safety to family involvement to the education of other health care professionals.

Dr. Jayabarathan talks about the different partnerships she has established with First Link coordinators, pharmacists, physiotherapists, mental health providers, long-term care staff, etc., and just how important they are in providing the best possible care to patients with dementia. 

Transitions– Looking Back and Looking Ahead

Jim Mann, a dementia activist from BC and Jacobi Elliott, PhD a researcher with the Geriatric Health Systems Research Group at the University of Waterloo both share a passion for improving the experience that Canadians have in our health care system. They reflect on the key themes that emerged in our conversations about The System Journey, including team support, treating the whole person, proactive families and support for GPs and offer their own insights for system improvement.

Throughout a person’s journey through the health care system, they will come into contact with multiple health care providers across multiple sectors. In this episode we discuss how important it is that everyone is coordinated and integrated for a team based approach to care.

Jim and Jacobi talked about why the team approach is comforting to dementia patients and how essential it is that the caregiver is considered a part of the team, as they are the only common thread that travels through the health care system with the patient. Caregivers play a crucial role in the health care system and are often overlooked.

They discuss building care plans by keeping the person living with dementia and their care partner at the centre of them, by recognizing their goals and preferences, to maintain quality of life; a holistic approach to care, considering the medical aspects but also the social and psychological aspects as well. 

Within these care plans, it can be a balancing act for the caregiver to learn how to communicate on behalf of the person living dementia, within the tight time limits that our primary care system has, without speaking for them. Jim shares his experience with this when his mother had Alzheimer’s and his tips for doing so effectively.

Remember: Diagnosis is only step one.

View Jim’s Story on YouTube at the link below:

https://www.youtube.com/watch?v=Lzd2aYpuKdk 

 

For This I am Grateful: Living with Dementia

In this episode, I interview Christine Thelker, a dementia activist from British Columbia and author of For This I am Grateful: Living with Dementia. Christine’s book evolved from a personal journal to a blog and eventually to a book that was published in June 2020. Christine is 60 years old and has experienced symptoms of dementia arising from cardiovascular disease for 5 years. In our discussion, we explored the themes of gratitude and grief, taking care of yourself, and advocacy. We also talk about Christine’s decision to “go public” with her writing and the close link this decision had, with her becoming involved with dementia advocacy, especially through Dementia Alliance International.

   Christine is also an artist, having designed her own book cover, but did not paint or draw until after being diagnosed. We talked about how through her writing, painting, blogging and speaking,  art contributes to her ability to live with and through her dementia. Our interview is the first in a series that will focus on arts and dementia. The foreword to her book is written by Kate Swaffer, Chairperson of Dementia Alliance International.

   You can buy Christine’s book at your local bookseller, Chapters/ indigo, or (dare I say it) Amazon. The ISBN # is 978-1-6457569-9-6. It is published by Austin Macauley. You can also follow Christine’s blog https://www.facebook.com/110344063740906

   A free copy will be given to a name drawn at random from listeners who write to dementiadialogue@lakeheadu.ca. The name will be drawn on December 1.