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Living Well

Love, Living, and Alzheimer’s

Bob's Last Marathon
Bob’s Last Marathon
Love, Living, and Alzheimer’s
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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.

April 6, 2022 11 Min 36 Sec TRANSCRIPT

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Lena recalls how her life as a caregiver did a 180 when she met Dr. Steven E. Arnold, a leading Alzheimerʼs expert, now at Mass General Hospital—and discovered the five key elements of caring for a person with Alzheimerʼs disease.

January 13, 2021 11 min 47 sec TRANSCRIPT

Lena talks about denial—an insidious and potentially dangerous problem that many Alzheimerʼs caregivers face.

January 20, 2021 9 min 51 sec TRANSCRIPT

This episode features Katie Brandt, Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit. Katieʼs late husband, Mike, was diagnosed with FTD at the age of 29. Katie tells us about a heartbreaking decision she had to make, and the…

January 27, 2021 11 min 12 sec TRANSCRIPT

Lena recalls the moment she realized that taking care of herself was essential to caring well for Bob, and how she learned that giving our very best to our loved ones doesn’t have to mean sacrificing comfort and pleasure.

February 3, 2021 9 min 6 sec TRANSCRIPT

Lena talks about some of the common issues that come up from well-meaning friends, and ways to handle them.

February 10, 2021 11 min 23 sec TRANSCRIPT

Alexandra Morris, gerontologist and Geriatric Care Manager, talks about how connecting with your loved one’s emotional truths, sometimes over the facts, can be a kind and compassionate way of managing daily life challenges.

February 17, 2021 10 min 3 sec TRANSCRIPT

Lena reflects on the role of family in the care of a loved one with dementia, and how their true value goes deeper than the day-to-day chores.

February 24, 2021 10 min 33 sec TRANSCRIPT

Lena recalls slivers of light when the Bob she knew and loved surfaced through his dementia, and contemplates the importance of savoring and nurturing our loved one’s essence.

March 3, 2021 11 min 27 sec TRANSCRIPT

Dr. Dawn Mechanic-Hamilton, Director of Cognitive Fitness Programs and Neuropsychological Services at the Penn Memory Center, describes the concept of cognitive fitness and some key tools used to support brain health in people with mild cognitive impairment.

March 10, 2021 9 min 33 sec TRANSCRIPT

Lena talks about key roles of the caregiver team, people she came to consider family, that she gathered over time to help care for Bob as his disease progressed.

March 17, 2021 12 min 15 sec TRANSCRIPT

Lena talks about the importance of daily structure, and outlines the routines she devised to give Bob the care he needed, and give them both a sense of stability in the face of this unpredictable disease.

March 24, 2021 11 min 51 sec TRANSCRIPT

Alexandra Morris, gerontologist and Geriatric Care Manager, offers practical and compassionate strategies for coping with a common issue challenging Alzheimer’s caregivers: repetitive behavior.

March 31, 2021 10 min 59 sec TRANSCRIPT

Jennifer Fargo Lathrop, Spiritual Care Provider from the outpatient palliative care program of the Palo Alto Medical Foundation, describes palliative and hospice care, and her role as a spiritual care provider for people with dementia.

April 7, 2021 13 min 21 sec TRANSCRIPT

Rachel Wiley, Occupational Therapist, explains how dementia-related behaviors can be better understood by considering the person with dementia, the caregiver, and the environment in a given situation, and how this analysis can point to mitigation strategies.

April 14, 2021 12 min 2 sec TRANSCRIPT

Judith Johanson, MADRC Longitudinal Cohort Coordinator at Massachusetts General Hospital, describes her experience with her husband Steve, who was diagnosed with early-onset Alzheimer’s, in two types of clinical trials. She talked about how Steve wanted to contribute to research far beyond his time on earth.

April 21, 2021 12 min 5 sec TRANSCRIPT

Katie Brandt, Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit, shares the emotional challenges of navigating care for both her father and her husband.

April 28, 2021 13 min 41 sec TRANSCRIPT

Lorri Bernstein, MSW, Founder of Senior Living Specialists of Philadelphia and Chicago, tells us about steps to consider in moving our loved ones from home to a care community.

May 5, 2021 10 min 22 sec TRANSCRIPT

Lena remembers the moment when it became clear that Bob would benefit from a day care program, and shares the factors that led to their choice.

May 12, 2021 11 min 01 sec TRANSCRIPT

Dr. Steven E. Arnold, Professor of Neurology at Harvard Medical School, and Translational Neurology Head and Managing Director of the Interdisciplinary Brain Center at Massachusetts General Hospital, speaks on the current state of treatment for Alzheimer’s disease.

May 19, 2021 11 min 01 sec TRANSCRIPT

Dr. Steven E. Arnold, Professor of Neurology at Harvard Medical School, and Translational Neurology Head and Managing Director of the Interdisciplinary Brain Center at Massachusetts General Hospital, speaks about lifestyle practices he recommends for Alzheimer’s patients at the time of diagnosis. These recommendations can also benefit the health and well-being of family members by reducing the risk of developing the disease.

May 26, 2021 12 min 51 sec TRANSCRIPT

Dr. Steven E. Arnold, Professor of Neurology at Harvard Medical School, and Translational Neurology Head and Managing Director of the Interdisciplinary Brain Center at Massachusetts General Hospital, talks about his process for diagnosing Alzheimer’s disease.

June 2, 2021 12 min 11 sec TRANSCRIPT

Judith Johanson, a member of the Alzheimer’s Disease Research Center at Massachusetts General Hospital, and wife of Steve, who was diagnosed with early-onset Alzheimer’s, shares the heartbreaking experience of coping with behavioral changes symptomatic of disease progression, and how recognizing that these changes were symptoms of his illness helped her navigate through trying times.

June 9, 2021 13 min 43 sec TRANSCRIPT

Alexandra Morris, a gerontologist and Geriatric Care Manager with 30 years’ experience helping families to cope with dementia and aging in many settings, offers practical advice for having productive conversations with people who suffer from dementia.

June 16, 2021 12 min 40 sec TRANSCRIPT

Lena reflects on the importance of maintaining a social life as Alzheimer’s symptoms progress, and offers practical ways she discovered to navigate the challenges.

June 23, 2021 10 min 06 sec TRANSCRIPT

Kristopher Hong, music therapist, talks about how he uses music as a tool to facilitate therapeutic processes. Music can benefit people of all ages with a range of physical and mental capabilities. But it’s especially helpful to those with Alzheimer’s disease, dementia, and other neurological conditions.

June 30, 2021 9 min 06 sec TRANSCRIPT

Katie Brandt, Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit, talks about the role of art in the caring of her husband, who was diagnosed with frontotemporal dementia at a young age, and how their young son, Noah, connected with his father through a sculpture he created.

July 7, 2021 11 min 45 sec TRANSCRIPT

Stephne Lencioni, licensed Clinical Social Worker and Geriatric Care Manager with over thirty years of experience providing care planning and management to older adults and their families, discusses the why, when, and how of seeking help for family caregivers and explain that it is never too early to start gathering your team.

July 14, 2021 12 min 3 sec TRANSCRIPT

Lena shares the importance of closely monitoring outside caregivers—because even the most trusted situation can suddenly change.

July 21, 2021 10 min 46 sec TRANSCRIPT

Dr. Barry J. Jacobs, noted clinical psychologist, family therapist, and author, tells us how the challenges of caring for parents with dementia affect sibling dynamics, and how to emerge as an effective team. He explains how caring for a parent can bring out the best—and worst—in adult siblings, and suggests a three-step process for sibling caregivers to work together as an effective support team.

October 13, 2021 10 min 27 sec TRANSCRIPT

Felicia Greenfield, Executive Director of the Penn Memory Center, describes the stages of the disease, and how families endure the long journey of dementia caregiving through resilience and newfound sources of purpose and meaning.

October 20, 2021 10 min 21 sec TRANSCRIPT

Natasha Goldstein-Levitas, a board-certified Dance/Movement Therapist, talks about how she uses dance/movement therapy to empower and encourage self-expression and ultimately to improve quality of life. She describes how the playful and shared experience of dance can improve mind-body connection, increase circulation, and sharpen focus.

October 27, 2021 9 min 33 sec TRANSCRIPT

Nancy Galgoci offers guidance on navigating the financial complexities of the Alzheimer’s journey, based on her professional and personal experience—as a CPA, an accounting professor, a volunteer, and as someone who has helped her family grapple with the challenges of Alzheimer’s disease. She shares insights about applying for the Medicaid waiver program to cover custodial home care services.

November 3, 2021 9 min 41 sec TRANSCRIPT

Dr. Venus Wong, a psychologist and a consultant at the Clinical Excellence Research Center at Stanford University, brings us up to date on policies and programs that support family caregivers—and steps that lie ahead. She reviews organizational and policy improvements at national and local levels to better support caregivers.

November 10, 2021 11 min 04 sec TRANSCRIPT

Felicia Greenfield, Executive Director of the Penn Memory Center, talks about the many ways caregivers can get the support they need, with an emphasis on support groups. She explains how finding connection and support can make all the difference in the well-being of the person with dementia, and their caregiver.

November 17, 2021 11 min 01 sec TRANSCRIPT

Dr. Barry J. Jacobs, noted clinical psychologist, family therapist, and author, talks about the grief Alzheimer’s caregivers often feel for the loss of a person who is still physically present, but no longer the person they once knew. He explains the concept of ambiguous loss, as pioneered by Dr. Pauline Boss, when the person with dementia is ever present to us but also mostly absent, and how to handle this excruciating ambiguity.

November 24, 2021 10 min 59 sec TRANSCRIPT

Lena reflects on how a health crisis prompted her and Bob to look ahead and make difficult but important decisions about their future medical care and financial plans. Planning helped Lena and Bob reflect on their priorities and gave them a sense of power to make key decisions, during a time when their lives were overtaken by a disease they couldn’t control.

December 1, 2021 10 min 31 sec TRANSCRIPT

Alexandra Morris, gerontologist and Geriatric Care Manager, talks about wandering, a common symptom of Alzheimer’s and other related dementias. Alex highlights some common triggers, and strategies for mitigating risks of wandering and for coping with it.

December 8, 2021 12 min 24 sec TRANSCRIPT

Alexandra Morris, gerontologist and Geriatric Care Manager, talks about the inability of people with dementia to recognize family and friends, their own home, or themselves. Alex explains that good dementia care requires adaptability. She reminds us that details and facts are far less important than the positive feeling our loved one has when they are with us.

December 15, 2021 10 min 58 sec TRANSCRIPT

In this joint podcast, Judith Johanson, a member of the Alzheimer’s Disease Research Center at Massachusetts General Hospital, and Lena Chow Kuhar, founder of Bob’s Last Marathon Foundation, describe their experience navigating the end stage of life for their husbands, Steve Johanson and Bob Kuhar. They reflect on the decision making process as they transition to hospice—the challenges, self-doubt, and eventually assurance that their choice was one of love and compassion.

January 12, 2022 14 min 27 sec TRANSCRIPT

Dr. Barry J. Jacobs, a noted clinical psychologist, family therapist, and health care consultant, reviews some of the essential elements of spousal dementia caregiving: sensitivity to the dignity of the person with dementia; the need for patience, flexibility, and creativity; and the occasional well-intentioned use of white lies or even subterfuge to effectively provide protection. He recommends strategies for surviving this grueling and heart-breaking challenge of spousal caregiving.

January 19, 2022 11 min 47 sec TRANSCRIPT

Stefanie Bonigut, LCSW, a care consultant and educator to family caregivers, offers an overview of technology available to caregivers and people living with dementia in many different ways–including communication and coordination across family, friends and professional help; improving safety through home monitoring; organizing medications, reminders for daily use and refills; tracking systems to make walking safer; help with misplaced or lost items; or online activities to enjoy while confined at home.

January 26, 2022 9 min 42 sec TRANSCRIPT

Dr. Jean Haskell, actor, educator, and facilitator of the Cognitive Comedy program at the Penn Memory Center. In this episode, Dr. Haskell shares her experience and insights about how improv can help people with memory and cognitive impairment have a little fun, exercise their memory muscle, and benefit from the feeling of community and social engagement. Along with group activities, she will also offer ideas for one-on-one exercises caregivers can use at home with their loved ones.

February 9, 2022 13 min 28 sec TRANSCRIPT

In an expert roundtable, Felicia Greenfield, Executive Director of the Penn Memory Center, and Dr. Barry J. Jacobs, a noted clinical psychologist, family therapist, and health care consultant, discussed self-care for the caregiver. Katie Brandt, Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit, was moderator. In this first of two podcasts excerpted from the roundtable, they talk about the importance of self-care, and research demonstrating the value of self-care.

February 16, 2022 11 min 37 sec TRANSCRIPT

In an expert roundtable, Felicia Greenfield, Executive Director of the Penn Memory Center, and Dr. Barry J. Jacobs, a noted clinical psychologist, family therapist, and health care consultant, discussed self-care for the caregiver. Katie Brandt, Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit, was moderator. In this first of two podcasts excerpted from the roundtable, they talk about the importance of self-care, and research demonstrating the value of self-care.

February 23, 2022 16 min 7 sec TRANSCRIPT

In this first of two excerpts from a recent Expert Roundtable on Alzheimer’s Caregiving, Dr. Steven E. Arnold, Harvard Medical School, and Dr. Stephen M. Strittmatter, Yale School of Medicine, give us an overview of what we know about Alzheimer’s disease and other forms of dementia. They explain how fundamental cell biology processes come into play in neurodegeneration and, in particular, the role of synapse malfunction and degeneration in the final common pathway to memory loss and cognition decline.

March 9, 2022 17 min 59 sec TRANSCRIPT

In this second of two excerpts from a recent Expert Roundtable on Alzheimer’s Caregiving, Dr. Steven E. Arnold, Harvard Medical School, and Dr. Stephen M. Strittmatter, Yale School of Medicine, comment on current directions in drug development, notably drug repurposing as a way to accelerate the process, as well as the role of biomarkers in deepening our understanding of the disease, supporting diagnosis, and guiding clinical trials.

March 16, 2022 16 min 35 sec TRANSCRIPT

Felicia Greenfield, Executive Director of Penn Memory Center, and Stefanie Bonigut, formerly Family Services Manager with the Alzheimer’s Association, share real-life stories and tips on how to communicate effectively and compassionately with our loved ones as the disease progresses. They also offer ideas on activities that can enrich day-to-day living.

March 23, 2022 15 min 58 sec TRANSCRIPT

Felicia Greenfield, Executive Director of Penn Memory Center, and Stefanie Bonigut, formerly Family Services Manager with the Alzheimer’s Association, share real-life stories and tips on how to communicate effectively and compassionately with our loved ones as the disease progresses. They also offer ideas on activities that can enrich day-to-day living.

March 30, 2022 14 min 47 sec TRANSCRIPT

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.

April 6, 2022 11 min 36 sec TRANSCRIPT

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.

April 13, 2022 12 min 24 sec TRANSCRIPT