Dementia Untangled

The Asian American and Pacific Islander population is the fastest growing ethnic group in America, highlighting the need for health education and dementia support. Our guest this week is Edie Yau, the Director of Diversity, Equity, and Inclusion Engagement at the Alzheimer’s Association, helps us understand the cultural beliefs and ideas around dementia that affect the perspective, care process, and barriers to getting a diagnosis for members of the AAPI community. She speaks to the importance of person-centered care, getting involved in research studies, offering resources in native languages, and considering cultural context when providing care and support for people with dementia and their families.

Recognizing signs of dementia isn’t always easy and complications like delirium can make it even more difficult. In this episode our guest, Helle Brand, a physician assistant and dementia expert, dives into the complexities of each, helping us untangle the differences and what questions to ask. We discover why delirium happens, if it can turn into dementia, and how to help our loved one experiencing symptoms.

Driving means so many things to us: freedom, independence, responsibility – but is it safe to drive with dementia? Jenny Nordine, an expert with Driving to Independence, helps us untangle the complicated feelings and decisions that must be made when it’s no longer a good idea to get behind the wheel. She speaks to evaluating one’s cognition and defensive driving techniques to determine one’s ability to continue driving after a diagnosis, as well as what steps to take when it’s time to give up the keys.

The dementia journey is incredibly unique for each individual, including the more than 11 million caregivers in the United States. This week, Katharine Halpin joins the conversation to share her experience as a caregiver for her wife living with Alzheimer’s disease. She untangles the early signs of the disease that she later connected to the beginning of her wife’s cognitive decline and how they now share in enrichment programs designed to benefit not only the person with the disease, but also the caregiver. She gives us insight into participating in clinical trials to help contribute to the research side of the disease, and how much joy they’ve been able to find on their journey.

There is always an opportunity to find new ways to live well with dementia. This week our guest, Eyleen Braaten from Giving Voice Initiative gives us insight on the benefits of using our voices to sing and sing together for a myriad of enrichment opportunities. She untangles the cognitive benefits of participating in a choir for both participants and their families, creating a deep sense of value and contribution to the community. Her own experience as a member of the “Sandwich Generation,” a phrase coined for those caring for children and an older loved one, created feelings of isolation. But she found hope and community as a caregiver and was also inspired to start a career with the Giving Voice Initiative.

Is there a way to prevent Alzheimer’s disease? We asked our guest, Dr. Mike Malek-Ahmadi, a Bioinformatics Scientist at Banner Alzheimer’s Institute, this exact question. He carefully untangles the biology behind the disease, what scientists have identified as the cause of cognitive problems that occur, and how they hope to identify people before they show symptoms and intervene earlier to delay or prevent Alzheimer’s. He shares his goals of changing from a clinical to a biological diagnosis for Alzheimer’s by identifying the presence of a bio marker for disease before seeing any cognitive decline – eventually leading to the first survivor of Alzheimer’s disease.

We look back and revisit some of our favorite moments from Season 4, as well as dive a little deeper and untangle the podcast experience of our hosts and editor/producer Amber Ayers. Learn more about how our experiences help shape the conversations we have with our guests and how each episode offers new knowledge and perspectives on the disease, the community, and the resources available. Is there a topic you're interested in learning more about? Email us at [email protected]

There’s no denying the ability music has to meet us where we are, brighten our mood, or even comfort us in our sadness, so it’s no surprise that it can have a dynamic effect on people with dementia. We get to chat with Grace Meadows, the campaign director for Music for Dementia and a music therapist, about how music can connect people at all stages of the disease and create a sense of community and comfort. She explains how even if a person is non-verbal, they can participate and often show signs of happiness and understanding, enriching lives through music.

Early delivery of palliative care for our person with dementia can reduce the number of unnecessary hospital admissions and the use of health services, delivering a comfort approach to care. We talk with Dr. Matt Malone, a geriatric psychiatrist at Banner Alzheimer’s Institute to learn more about this approach and why it’s so important to consider goals of care for our person. We learn that palliative care isn’t just for life-limiting illness, but something that can be a part of a disease process. He talks about how to help families make the least-worst decision to balance risks vs. benefits to meet an individual’s goal for care.

Individuals within the black community are twice as likely to develop Alzheimer’s disease as their white counterparts, but it is less commonly acknowledged and diagnosed, creating large disparities in education, support, and care. We chat with Dr. Fayron Epps, an Assistant Professor at Emory University and founder of Alter, about her inspiration to research the impact of dementia on the black community, and how she took on the responsibility of educating and supporting those people in it. She acknowledges what she calls “Black Superwoman Syndrome” that some caregivers feel, refusing help from others, adding additional stress and burden to them, and encourages them to activate their community, including their faith community for support. She talks about the “Caregiving While Black” course she helped develop, focused on empowering black caregivers to properly advocate for their person when they interact with the health system, educate them about insurance and coverages, and provide resources.