Bob's Last Marathon

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.

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 second of two podcasts excerpted from the roundtable, they review barriers to self-care and highlight techniques to overcome these barriers as they answer questions from the audience.

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.

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.

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.

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.

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.

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.

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.

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.