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