Bob's Last Marathon Archives - Bob's Last Marathon

My Journey

Lena shares her sense of optimism as she recounts how the response to Alzheimer’s disease and related dementias has evolved from little discussion, poor resources, and stigmatizing to general recognition—and dare we say acceptance—of their significance within our aging population. She announces the transfer of all assets—content and branding—to the Penn Memory Center, where work will continue in making our learnings available to all who need them. In doing so, Lena hopes to promulgate our content, share our spirit of service, and, above all, honor the memory of Bob and the many people who have faced the devastation of dementia with courage and dignity.

Life After Caregiving

What happens when we reach the end of our journey, when we are confronted with grief and loss, while the burden of caregiving is relieved? In this episode, two caregivers share their stories: Judith Johanson, in her multiple roles at the Alzheimer’s Disease Research Center and Gerontology Research Unit, and Katie Brandt, Director of Caregiver Support Services and Public Relations for the Frontotemporal Disorders Unit, both at Massachusetts General Hospital. They discuss how they chose to stay connected with the field after their journeys of care, the balance of grief and joy and, in Katie’s words, “how love is the bridge from so many yesterdays to brand-new tomorrows.” Judy speaks to how she was able to “move forward with hope and anticipation while carrying the treasures we have amassed from our cherished memories.”

Blood-Based Biomarkers

With the availability of anti-amyloid therapies, accurate diagnosis and staging of Alzheimer’s disease becomes ever more important, as does the need to monitor response to treatment. Faster, less expensive, and more accessible blood-based biomarkers, a long-standing goal for the medical research community, are now on the horizon. Dr. Steven E. Arnold, Massachusetts General Hospital, explains why accuracy and reliability of results are key criteria for their widespread use, and the importance of the health care provider in interpreting test results and giving them context. Looking into the future, Dr. Arnold suggests that the greatest promise of blood-based biomarkers may be in the prevention of Alzheimer’s disease, through early detection before symptoms appear. He also outlines ongoing efforts to identify and understand markers of other disease mechanisms such as inflammation, oxidative stress, vascular injury, and nutrient levels.

The Promise of Anti-Amyloid Therapies: Roundtable Excerpt 2

The somewhat complex logistics for both the clinic and the patient in administering Leqembi (lecanemab), the first fully FDA-approved drug for Alzheimer’s disease in over 20 years, are summarized in this second of two excerpts from a recent roundtable. Dr. Steven E. Arnold and Dr. David A. Wolk highlight some of the risk factors, including genetic risk factors. They postulate that Alzheimer’s disease may be more than amyloid and perhaps more than amyloid and tau, and ponder a future of combination therapy and precision medicine, where therapies are targeted toward individual patients.

Progress on Anti-Amyloid Therapies: Roundtable Excerpt 1

Decades of research have helped elucidate the roles of amyloid plaques and tau tangles in Alzheimer’s disease, identify biomarkers of underlying pathology, and guide the development of new therapies. In this first of two excerpts from a recent roundtable, Dr. Steven E. Arnold, Massachusetts General Hospital, and Dr. David A. Wolk, Penn Memory Center, review our current understanding of amyloid and tau pathologies and the clinical trial data that led to the recent approval of Leqembi (lecanemab), the first fully FDA-approved drug for Alzheimer’s disease in over 20 years.

Caregiving and Mental Health

Caregiver stress and burnout are not uncommon, as caregiving for someone with dementia is a journey that demands resilience, compassion, and understanding. Felicia Greenfield, MSW, LCSW, describes a case study and urges our listeners to navigate caregiving while prioritizing mental health and well-being. She recommends a combination of self-care practices—such as meditation, exercise, spending time with family—and a willingness to ask for help in caring as well as in maintaining one’s own mental health. In her words, “It’s never too late to start caring for yourself.”

Communication—Meeting the Challenges

Dementia can pose challenges by changing the way a person communicates. Repetition, confusion, and inappropriate language are just a few examples of what caregivers may face. Today, we would like to share some curated content from past episodes that our audience has found to be the most useful—in developing techniques, and perhaps a fresh perspective, to connect with our loved ones in the face of dementia. Alexandra Morris, gerontologist and dementia care manager, will share tips about handling communication changes.

Planning Events

Alex Morris talks about the need to acknowledge changes within the person with dementia, and the modifications that can help loved ones remain comfortable and engaged. She also stresses the importance of reducing the burden on the caregiver by sharing some of the planning and hosting of events. Tips for improving conversation are also offered.

Holidays

Holidays are meant to be a time of joy, celebration, and tradition, but they can also be stressful and hectic. Caring for a person living with dementia can bring additional holiday stress to a caregiver. How your loved one participates in your holiday rituals will need to be adjusted. Stefanie Bonigut, MSW, shares tips and strategies that can help a caregiver make the holidays as manageable and as joyful as possible.

Getting Started: Tips for the Newly Diagnosed

Hearing news about a diagnosis, can be a devastating, confusing, and difficult experience. To help our listeners find the way to helpful information, and look for guidance on getting started, we’ve curated content that our audience has found to be the most useful—in understanding the basics about dementia care, learning about lifestyle practices we can adopt to slow the disease, putting together a daily routine that works and helps both the caregiver and the person who has been diagnosed, and thinking about what a care team might look like. Dr. Steven E. Arnold will review recommendations for lifestyle practices, while Lena discusses practical issues for day-to-day living and, importantly, how she learned in the end that despite the challenges, it was a worthwhile journey.

GUIDE: A Comprehensive Dementia Care Model

Felicia Greenfield, Penn Memory Center, presents an overview of the new nationwide model—Guiding an Improved Dementia Experience (or GUIDE)—announced by CMS recently. The goals of GUIDE include: (a) improving quality of life for people living with dementia by addressing their behavioral health and functional needs, coordinating their care for dementia and co-occurring conditions, and improving transitions between community, hospital, and post-acute settings; (b) reducing burden on unpaid caregivers by providing caregiver skills training, referrals to social services, 24/7 access to a support line, and respite services; and (c) preventing or delaying long-term nursing home care by enabling people living with dementia to remain safely in their homes for as long as possible.

Reflections: AAIC 2023

Felicia Greenfield, Penn Memory Center, shares her learnings from the 2023 annual Alzheimer’s Association International Conference. She presents findings from the Penn Memory Center’s Time Together program, designed to offer opportunities for older adults to interact with college students while giving care partners a break. She summarizes sessions on improving outcomes for caregivers and ways to tailor programs for Black care partners and considering cultural factors in customizing programs. The Care Ecosystem from the University of California San Francisco, presented as a model to address gaps in care and prevent emergency room admissions, is also described. Findings from an evaluation of the effectiveness of the Alzheimer’s Association’s free 24-hour helpline are presented.

The Promise of Biomarkers

Dr. Steven Arnold offers a comprehensive overview of the expanding role of biomarkers in the diagnosis and monitoring of Alzheimer’s disease and related dementias. Dr. Arnold notes that with new, highly sensitive and specific lab reagents and technologies, we can now detect the extremely low levels of tau, amyloid, and some other brain proteins that are produced in Alzheimer’s disease and leak out into the bloodstream. And in the search for new treatments for Alzheimer’s disease, biomarkers play an important role in expanding our understanding of the disease and enabling us to measure whether a new drug or other treatment is working.

Now What?

Felicia Greenfield, LCSW and Executive Director of Penn Memory Center, explains the importance of getting a diagnosis when cognitive impairment is suspected, the process of getting a diagnosis, and the steps that can be taken after diagnosis. She suggests that understanding what lies ahead, securing resources for support, financial planning, and creating a safe environment are just a few examples of actions families can take to help maximize quality of life while living with dementia. Lifestyle changes, safe and effective ways to continue working if still employed, and strategies for engagement and socialization are a few topics she addresses.

The Road to Diagnosis

Lena tells the story of how a series of events, over the course of years, finally brought her and Bob to the doctor’s office for Bob to be tested. She recalls how the diagnosis, painful as it was, opened the door to getting support and receiving the care that Bob needed to live well despite the many challenges they faced together. In her words, “As I watch people around me put off their testing, I wish I knew how to tell them that there is so much more to gain than to lose. Knowledge is power, even when knowing hurts.”

A Person-Centered Approach to Caregiving

Noting that non-pharmacological approaches to care are considered the gold standard in caring for people living with dementia today, Felicia Greenfield explains the concept of person-centered care, what it is, and how to go about delivering it. Felicia cites the seminal work on dementia by scholar Tom Kitwood, who highlights relationship, uniqueness, and embodiment as the elements of personhood, or sense of self. She highlights the commonalties among models and practices of person-centered care, and shares six recommendations for delivering it. These include: really knowing the person with dementia—the unique and whole person; recognizing and accepting the person’s reality; identifying and supporting ongoing opportunities for meaningful engagement; nurturing and building authentic and caring relationships; maintaining a supportive community; and evaluating care practices regularly, making appropriate changes as needed.

Update on Diagnosis and Treatment of Alzheimer’s Disease

Dr. Steven Arnold explains the underlying causes of dementia, some of which are treatable, and outlines the process for arriving at a diagnosis. He offers an overview of recent developments in anti-amyloid immunotherapies. He puts amyloid and tau—and the presence of plaques and tangles—in perspective as he explains what we know about Alzheimer’s disease today. According to Dr. Arnold, data from amyloid immunotherapies tells us that Alzheimer’s dementia is driven by more than amyloid plaques and tau tangles. He suggests that for people with dementia, our most effective treatment at present is good care, and that lifestyle and diet changes can help optimize brain function for everyone.

Public Policies to Help Us Live Well with Dementia

Dr. Jason Karlawish talks about living with dementia and disabling cognitive impairments in the context of today’s public policies that places the burden of care on the American family, and points out gaps in today’s public policies that must be remedied. He explains the concept of custodial care, and how long-term care services and supports are not included in Medicare. He speaks about the need to improve the quality of residential care and cites the success of government-backed programs in other countries. Additionally, Dr. Karlawish points out the importance of supportive decision making, and helping people in the early stages of the disease exercise their autonomy.

The Male Caregiver

The resolved male caregiver, who may sometimes be described as “rigid as a pillar,” is highlighted in this podcast by psychologist Dr. Barry J. Jacobs. Dr. Jacobs explains how male caregivers who keep their feelings buried inside tend to struggle more and eventually burn out, while others who allow themselves to experience their own feelings and understand these internal signals can prevail. He offers advice for adult children on ways they can support their father to make caregiving a shared experience.

Lifestyle and Diet in Alzheimer’s Disease Prevention

Dr. Arnold offers an overview of current understanding of Alzheimer’s disease, and lifestyle changes that can lower risks of disease or slow progression. He suggests that risk factors such as hearing loss, head injuries, cardiovascular risk factors and tobacco use all increase our risk of developing dementia and probably drive progression. He also points out increasing evidence that depression, loneliness, and anxiety can increase our vulnerability to dementia, likely through stress mechanisms. He answers common questions about dietary supplements and natural products.

Making Time Together

Finding ways to stay socially connected can be challenging at any age—but it may be especially difficult for people living with dementia. Felicia Greenfield describes the Time Together program, pioneered at Penn Memory Center, which matches older adults living with dementia with college students, with the goal of filling the gap when meaningful social engagement is hard to find, and offering respite for the family caregiver.

Genetics and Alzheimer’s Disease

Dr. Sara Manning Peskin, author of A Molecule Away from Madness: Tales of the Hijacked Brain, reviews what we know about our familial risk of Alzheimer’s disease. She points out that Alzheimer’s disease is usually the result of complex genetic and environmental factors, some of which we still don’t even understand. Environmental factors such as education, diet, and head trauma also contribute to the risk of getting Alzheimer’s disease, so genetics alone don’t account for everything by any means.

Young Caregiver

Katie Brandt narrates her personal journey as a young wife and mother navigating through early onset dementia of her husband Mike, who was diagnosed with frontotemporal dementia at age 29. She shares practical tips on mitigating financial challenges using federal and local programs to create a financial safety net until she was ready to return to work. She spoke of the value of an elder care attorney as she went through the process of planning for the future, and emphasized the importance of joining a support group.

Lewy Body Dementias

Dr. Stephen Gomperts gives an overview of the Lewy body dementias, the second most common neurodegenerative dementia after Alzheimer’s, affecting some 1.4 million Americans. He explains that there are two clinically distinct but related diseases: dementia with Lewy bodies, also known as DLB, and Parkinson’s dementia. He explains the clinical features, the diagnostic process, and treatment strategies. He advocates a team approach to caring for these complex diseases that affect cognitive, physical, and behavioral functions.

Reflections: AAIC 2022

Highlights from the 2022 Alzheimer’s Association International Conference offer insights into facets of dementia care and moves toward solutions for risk reduction, more accurate diagnosis and treatment. Katie Brandt describes an ongoing study at Mass General Hospital showing how education and support can improve readiness for advance care planning. Also of interest are social determinants of health and their potential impact to increase or reduce the risk of dementia, pointing out loneliness as a public health issue.

The Final Loss

Felicia Greenfield, Executive Director of Penn Memory Center, explains that grief is a normal, adaptive response to a loss, and describes frameworks for thinking about the intense physical and psychological responses as we create a path toward healing.

Love, Living, and Alzheimer’s

Lena reflects on Amy Bloom’s book, In Love, in which Bloom chronicles her husband’s decision to end his life when he was diagnosed with Alzheimer’s disease. Lena recounts the steps that she and Bob took to live the Alzheimer’s journey to the best of their ability, and the gratitude and joy they shared with family and friends.

Challenging Behaviors: Tools and Techniques

This second of two podcasts excerpted from the roundtable on tools and techniques of Alzheimer’s caregiving uses a case study approach to show us how we can dig deeper to understand behavioral changes and identify ways to respond. Felicia Greenfield, Executive Director of the Penn Memory Center, and Stefanie Bonigut, formerly Family Services Manager with the Alzheimer’s Association, are the speakers. Katie Brandt, Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit, is moderator.