Dementia Untangled

The common fear of “when will my loved one with dementia forget me?” makes us all question just how our memory works.  We asked Dr. Po-Heng Tsai, a Behavior Neurologist at Banner Alzheimer’s Institute, to help us untangle the issue of time confusion and why people with dementia tend to revert to the past. He explains that memory is not one single entity, but different systems of memory that we have and how the emotional context of memories makes them stronger, causing it to last longer in our brain. Don’t miss his explanation of delirium and how to identify when something else may be going on with our loved one, besides memory issues.

Caregivers face many struggles as they navigate the dementia journey, but there is hope out there. Angela Lunde, a co-director for the Outreach, Recruitment, and Engagement Core in the Alzheimer’s Disease Research Center at Mayo Clinic, talks with us about how to identify one’s own unique struggles and create a path of resilience, not resistance, through practicing mindfulness. She shares how she was able to untangle the feeling of acceptance and how she incorporates that into mindful practices, giving our full attention to whatever is happening now, leading to many health benefits. She also teaches us a quick and easy way to practice mindfulness by paying attention to the present moment and focusing on our own breath.

What if you could gain some insight into your loved one’s journey with dementia? That’s exactly what our guests Arthena Caston and Jay Reinstein are hoping to offer in this episode. They are currently living with early onset Alzheimer’s disease and members of the National Board of Directors for the Alzheimer’s Association. They share their stories and how they have embraced this next chapter of their lives. You’ll be inspired to hear how they have found new purpose, a way to reinvent themselves and offer perspective and support to anyone on this journey. They warn against social isolation and choosing activities that do not offer stimulation; instead, they encourage others to keep communicating, exercising, accept help, take your prescribed medications, and work with your health team to ensure a higher quality of life. Stay positive and you can live well with this disease.

With endless amounts of information at our fingertips, we have quickly evolved into a self-diagnosing society where knowledge is power. Dr. Jessica Langbaum is the director for the Alzheimer's Prevention Registry (www.endALZnow.org), and she helps us untangle the risk and reward of genetic disclosures. She explores potential risks by choosing at-home DNA kits instead of teaming up with a healthcare provider or genetic counselor, who are better equipped to guide you on what the results mean and how to integrate them into your life. We also discuss The Registry, a program that works to support Alzheimer’s disease research and to educate the public by sharing reliable information about Alzheimer’s and Alzheimer’s prevention efforts.

Agitation aggression can be distressing for those living with dementia and those who care for and about them. In this episode, we talk with Piper Frithsen, Administrator at Casa de la Luz, about her efforts in building a toolbox for caregivers to manage unwanted behaviors through non-pharmacological means. She helps us untangle the triggers for agitated behavior, how to identify them through focused efforts, and then how to use proven interventions to help meet your person’s basic needs and provide comfort. She reminds us that “there is hope and there is help.”

Every superhero has an origin story, and most caregivers can identify with the idea of coming from a place of challenge; “not one that they asked to be in, but one they must face.” In this episode our guest Katie Brandt shares with us her experiences as a care partner turned caregiver, and how that helps guide her professional and advocacy efforts for others who are faced with challenges from Alzheimer’s and other forms of dementia. She helps us untangle how to take the necessary steps toward caregiver self-care, and exactly who we need to lean on in order to consider all avenues of support by employing the “Caregiver Trifecta.” She shares stories of meaning, hope, and empowerment for anyone affected by these diseases.

It’s been nearly two decades since there has been an approved drug for the treatment of Alzheimer’s disease. In an exciting development, Biogen’s drug aducanumab (Aduhelm) received conditional approval from the US Food and Drug Administration. Dr. Alireza Atri, director at Banner Sun Health Research Institute and leader in clinical research for the past 20 years, joins the conversation to help us untangle the renewed hope in the field and the complexities surrounding this decision. Dr. Atri acknowledges that this is an important step forward in our fight to end Alzheimer’s before losing another generation, but it’s one step in a complex process ahead. Hear him discuss what steps care partners and those with the disease should take with their physician, and just how soon this treatment may be available to qualified candidates.

Disclosures

Dr. Atri disclosed relevant relationships with Biogen.

We look back and revisit some of our favorite moments from Season 1, as well as dive a little deeper and untangle our hosts and editor/producer, Amber Ayers. The team shares what led them to connect to the dementia community and just how the idea for this podcast came to be. Don’t miss their “light bulb moments” from the first 9 episodes and which ones you should go back and re-listen to. Listeners are also in for a treat when Heather & Janice give some insight into Season 2 and what to expect.

There is a totally treatable risk factor for dementia: hearing loss. Our guest this week is Dr. Briana Auman, a Clinical Neuropsychologist from Banner Sun Health Research Institute, who helps us untangle the stigmas and myths about both hearing loss and dementia. She helps us connect the dots between these two issues, stating a case for addressing both. She defines just what hearing loss is, why it happens, and how it affects the brain as we age. Dr. Auman recommends tools and strategies that can help with communication, including what we can do to address these issues before it’s too late.

Our guest, Susy Favaro, a social worker from Banner Alzheimer’s Institute, shares with us her connection to the term coined by Dr. Pauline Boss, ambiguous loss, and how the implementation of her guidelines can help caregivers understand the emotions around their person’s presence & absence simultaneously. Susy helps us untangle the confusion around grief, guilt and a myriad of emotions that caregivers can feel at any time about their loved one with dementia. She creates a safe space for caregivers, reminding us that “it’s not you that is messed up, it’s the situation that’s messed up,” and how striving for perfection is no longer useful, that “good enough is good enough.” She assures listeners that once you embrace this idea of ambiguous loss and share it with others, you won’t look back.