Bob's Last Marathon

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.

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.”

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 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.

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.

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.”

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.

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 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.

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.