Living With Alzheimer's

Christoph Sisson

Living With Alzheimer’s is a podcast about living with dementia from the perspective of Ginger, an octogenarian with early-stage Alzheimer’s, and Christoph, her son and full-time caregiver. Their conversations with each other and with a variety of subject matter experts provide listeners with heartfelt stories of Ginger’s journey as well as best practices for other caregivers who are providing support for friends or family members living with the impacts of dementia. Ginger, a former English teacher and retired librarian, was diagnosed with Alzheimer’s in 2019. Her daily life has been impacted by dementia in a way that gives her a unique perspective on life and living. Christoph, Ginger’s son and full-time caregiver, is a former journalism teacher and amateur radio host. He has been learning from dementia care experts and started the podcast as a way to share insights from subject matter experts with the many families impacted by dementia. Subscribe to the podcast to follow Ginger’s story and to learn more about available resources for dementia care. read less

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When is hospice care right for a person with dementia? Probably earlier than you thought.

When is hospice care right for a person with dementia? Probably earlier than you thought.

In this episode on the Living with Alzheimer's podcast, Christoph interviews social worker Deb Langer and advisor Julie Capra of Hospice of Michigan. They discuss what hospice is and dispel common myths about it. Deb and Julie describe who is eligible for hospice, how it’s paid for, and the many resources available to support people living with dementia and their caregivers. They also discuss the importance of medical and financial legal documents like advance directives, wills, trusts and power of attorney designations.A nationally recognized leader in end-of-life care, Hospice of Michigan is the original and largest not-for-profit hospice in the state. For more than 40 years, the organization has served patients and their families across Michigan providing palliative and end-of-life care to patients wherever they call “home” – nursing homes, assisted living facilities, family residences, hospitals and more. As a founding member of the NorthStar Care Community, Hospice of Michigan also offers grief support and counseling, caregiver education and support, pediatric hospice care and support, and educational programs for physicians and health care professionals. Hospice of Michigan is there for patients and their families, respecting their wishes, preserving their dignity, and providing the highest level of compassionate and personalized care. For more information about Hospice of Michigan, please visit hom.org or call 888.247.5701.If you want to learn more about other hospice providers, please contact Alzheimer’s Association at 800.272.3900. They can help you identify hospice providers that serve your area.

Episodes

When is hospice care right for a person with dementia? Probably earlier than you thought.

When is hospice care right for a person with dementia? Probably earlier than you thought.

In this episode on the Living with Alzheimer's podcast, Christoph interviews social worker Deb Langer and advisor Julie Capra of Hospice of Michigan. They discuss what hospice is and dispel common myths about it. Deb and Julie describe who is eligible for hospice, how it’s paid for, and the many resources available to support people living with dementia and their caregivers. They also discuss the importance of medical and financial legal documents like advance directives, wills, trusts and power of attorney designations.A nationally recognized leader in end-of-life care, Hospice of Michigan is the original and largest not-for-profit hospice in the state. For more than 40 years, the organization has served patients and their families across Michigan providing palliative and end-of-life care to patients wherever they call “home” – nursing homes, assisted living facilities, family residences, hospitals and more. As a founding member of the NorthStar Care Community, Hospice of Michigan also offers grief support and counseling, caregiver education and support, pediatric hospice care and support, and educational programs for physicians and health care professionals. Hospice of Michigan is there for patients and their families, respecting their wishes, preserving their dignity, and providing the highest level of compassionate and personalized care. For more information about Hospice of Michigan, please visit hom.org or call 888.247.5701.If you want to learn more about other hospice providers, please contact Alzheimer’s Association at 800.272.3900. They can help you identify hospice providers that serve your area.

Releasing the Butterfly - Caring for a spouse with Alzheimer's

Releasing the Butterfly - Caring for a spouse with Alzheimer's

In this episode on the Living with Alzheimer's podcast, Christoph interviews Max Sherman, author of Releasing the Butterfly: A Love Affair in Four Acts. The book shares many insights about caring for a spouse with Alzheimer’s while telling the story of Max and his wife Gene Alice (Genie) who met as teenagers in the 1950s while volunteering at a jail in the Texas Panhandle. Max tells the story of how he and Genie created a partnership that enabled Max to become a lawyer, state senator and university president while Genie earned her doctorate to become a professor of music. The story continues as he tells how their shared love of literature, theater, film, and music became a critical connection after Genie was diagnosed with Alzheimer’s.In the episode, Max shares many of the insights he has gained as a caregiver, and thoughts on how to maintain connection even while grieving the losses of the fading abilities of a spouse living with Alzheimer’s.Max wanted to be certain to share that, in honor of Genie, all proceeds from the book go to Austin Presbyterian Theological Seminary's program in sacred music.

Tips and Resources for Gen X Caregiving

Tips and Resources for Gen X Caregiving

In this episode on the Living with Alzheimer's podcast, Christoph interviews Steve Mullen, co-host with his wife Jennifer on Caregiving Gen X Style, a podcast by Gen Xers for Gen Xers who are taking care of their aging parents.Steve describes many of the unique caregiving challenges faced by Gen Xers. As the current Sandwich Generation, they are often raising children while simultaneously caring for aging parents.Steve shares how draining caregiving can be and some of the practical ways families and friends can help. We also discuss some of the key caregiving insights and resources you can find on their podcast.And, although neither of us can recall the name of a book we mention in the episode, the title is The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease and Other Dementias. Now in its 7th edition, the book is full of practical advice for caregivers.

CareMobi: An app to improve healthcare outcomes for the elderly

CareMobi: An app to improve healthcare outcomes for the elderly

In this episode on the Living with Alzheimer's podcast, Christoph interviews Tina Sadarangani, ANP-C GNP-BC PhD RN, Assistant Professor at NYU Rory Meyers College of Nursing.They discuss her research efforts to improve healthcare outcomes for the elderly and CareMobi, an app her team has developed to connect family caregivers, in-home caretakers, staff at adult day care programs, and medical providers so they can share health information with each other on a single platform. CareMobi is available for both iOS and Android users.Tina describes the benefits of adult day centers for caregivers and those living with dementia, as well as how families can locate a day center near them at National Adult Day Services Association’s website.Tina also shares warning signs for acute infections and Enlightened Caregiver, a social media feed with tips for caregivers to be effective advocates for their loved one in the doctor’s office or hospital.

Better Dementia Care - Focusing on the person and not their disability

Better Dementia Care - Focusing on the person and not their disability

In this episode on the Living with Alzheimer's podcast, Christoph interviews Nicole Brackett, Director of Care Delivery and Quality for Homewatch CareGivers. They discuss the many services Homewatch CareGivers provides to families, especially those caring for a family member with dementia. Nicole describes the importance of personalized care plans, as well as the culture-shift her organization is embracing by focusing on the person and not their disability. Nicole and Christoph discuss examples of a person-centered approach to care partnerships.They go on to discuss how families can distinguish between care that can be provided in the individual’s home, and when a care community may be the better fit. And Nicole outlines the Five Rs of Caregiving (Remain calm, Respond to feelings, Reassure, Remove yourself to gain composure, and Return fully when the person you’re caring for has calmed) to help caregivers sustain quality care without burning out.The episode wraps up with conversation about a free resource for caregivers, called Pathways To Well-Being With Dementia from Dementia Action Alliance, as well as a caregiver certification program that Homewatch CareGivers is developing with Dr. Al Power.

Olera Care - Where families and caregivers can find resources to help them care for the elderly and those living with dementia

Olera Care - Where families and caregivers can find resources to help them care for the elderly and those living with dementia

In this episode on the Living with Alzheimer's podcast, Christoph interviews Dr. Logan DuBose. Logan is the co-founding director of Olera, a research organization supported by the National Institute on Aging.Christoph and Logan discuss the needs of families who are caring for an elderly relative who may also be living with dementia. And Logan describes how Olera helps match those families with caregiving tips, caregiver support groups, and funding sources for a variety of caregiving services and facilities.They also discuss how senior care providers can utilize Olera’s service-provider login to list their organization and connect with families looking for the services they provide.You can find more information about Olera’s Healthy Aging Community support group on Olera’s Facebook page.And you can access Olera’s free Caregiver Relief Network at olera.care. The dashboard provided there enables families caring for an elderly relative to:Find help at home, Find senior living communities, Find help affording care and Find help with caregiver support and wellness.

Meet the author of The Gap Between: Loving and Supporting Someone with Alzheimer’s

Meet the author of The Gap Between: Loving and Supporting Someone with Alzheimer’s

In this episode on the Living with Alzheimer's podcast, Christoph interviews Mary Moreland, author of The Gap Between: Loving and Supporting Someone with Alzheimer’s.They discuss Mary’s experience as a full-time lawyer and single mother of two boys suddenly becoming the caregiver for her mother with Alzheimer’s. They also talk about the book, how Mary approached the grieving process as her mother succumbed to the impacts of dementia, and how caregivers can refuel.The insights Mary gained from her mother’s journey with dementia became a book full of the things she would have found helpful as a caregiver from diagnosis to end of life.You can find Mary’s book and other resources at www.marymoreland.com.

What families can do if they notice signs of dementia during the holidays

What families can do if they notice signs of dementia during the holidays

In this episode on the Living with Alzheimer's podcast, Christoph interviews Kathryn Ribant Payne, Communications Director for Alzheimer's Association Michigan Chapter. They discuss how call volume for Alzheimer’s Association’s 24/7 Helpline at 800.272.3900 increases dramatically during the holiday season. This is typically due to families seeking assistance after observing parents and grandparents struggling with day-to-day tasks and other memory issues.Kathryn and Christoph discuss potential signs of developing dementia, share our stories of observing parents and grandparents exhibiting some of those signs of dementia, and discuss what families can do whenever they have questions or concerns about their observations.

The Life Story Project - Helping provide dignified care for people living with dementia

The Life Story Project - Helping provide dignified care for people living with dementia

In this episode, Ginger and I speak with Beth Mastel-Smith, professor of nursing at The University of Texas at Tyler, about the Life Story project she is conducting with Michelle Kimzey, professor of nursing at Texas Christian University.The Life Story project pairs nursing students with people living with dementia (called mentors) who share life stories that will help healthcare students better understand how to provide dignified care.We discuss details about the project and share a personal story about Ginger’s recent hospital experience that may have been improved if more of the emergency room staff had participated as students in the Life Story project.If you know a person living with dementia who would like to participate in the Life Story project, call or text Beth at 713.416.5690 or email her at bmastelsmith@uttyler.edu.

Research and insider tips about self-care to help caregivers be more successful

Research and insider tips about self-care to help caregivers be more successful

In this episode, I speak with Amanda Leggett, Ph.D., Assistant Research Professor at the University of Michigan, about her research studying caregiving styles that help reduce stress and increase success for caregivers.Dr. Leggett is working with Alzheimer's Association Dementia Care Provider Roundtable (AADCPR) to develop measurements that can identify a caregiver’s natural approach to caregiving so that style modifications can be prescribed to help increase job satisfaction and reduce burnout.Then I speak with my friend Jordan Gilliam about his insights regarding self-care practices that can help caregivers improve their quality of life.And finally, we wrap up the conversation by talking to Ginger about her ideas for caregivers to take care of themselves.

What the heck is sundowning and how can caregivers help when it occurs?

What the heck is sundowning and how can caregivers help when it occurs?

In this episode on the Living with Alzheimer's podcast, Christoph discusses sundowning with Claudia Schwenzer, a Care Counselor for Alzheimer’s Association Michigan Chapter. Care counselors help families develop individualized caregiving plans that fit the specific needs of their family member impacted by dementia. Their help can be requested at Alzheimer’s Association’s 24/7 Helpline at 800.272.3900.Sundowning is a state of confusion that occurs for people with dementia, typically in the late afternoon. It can cause a number of behaviors such as confusion, anxiety, aggression or wandering. We discuss the impact, causes and resources for dealing with the phenomenon of sundowning.Claudia also talks about safety considerations and research projects related to dementia and sundowning.Then I speak with my friend Jordan Gilliam who describes his experiences as a caregiver in long-term care facilities. He shares his insights about and approaches to increasing personal dignity and reducing agitation for people living with dementia.Finally, I speak with Ginger about her perceptions and awareness of sundowning as well as how I can help her when she’s dealing with the confusion that occurs when sundowning happens for her.

Volunteering opportunities with Alzheimer's Association & sharing memories of Ginger's volunteering history

Volunteering opportunities with Alzheimer's Association & sharing memories of Ginger's volunteering history

In this episode on the Living with Alzheimer's podcast, Christoph interviews Sarah Lewan, Alzheimer's Association Volunteer Program Manager, about current volunteer efforts and the many volunteering opportunities to help support families dealing with dementia.You can read about volunteer opportunities and sign up to help at volunteer.alz.org. And, you can reach Sarah with questions by emailing smlewan@alz.org or by calling 800.272.3900.After the interview, Christoph's sister Celeste joins in with Ginger to share memories of Ginger's past volunteer work and upcoming volunteer opportunities available to her now.

Alzheimer's Association Helpline resources and Ginger has a birthday!

Alzheimer's Association Helpline resources and Ginger has a birthday!

In this episode of Living with Alzheimer’s, I speak with Caitlin Goyer, Helpline Program Coordinator for Alzheimer’s Association Michigan Chapter, about Alzheimer’s Association’s call-in helpline and the resources it provides families and caregivers. The Alzheimer's Association provides a 24-hour dementia helpline is available at (800) 272-3900 and provides:Local referrals for medical professionals familiar with dementiaLiving communities for people with dementiaInformation about respite for caregiversInformation about respite scholarshipsInformational pamphlets about dementia and caregiving best practicesAdvice for dealing with issues related to caring for someone with dementiaCare consultation to create individualized caregiving plansSupport groups for families and caregiversThen we celebrate a special birthday and speak with Ginger about turning 80.

Social engagement programs for people with dementia and their care partners

Social engagement programs for people with dementia and their care partners

In this episode of Living with Alzheimer’s, I interview Kayla Jakel, Community Connect Program Manager for Alzheimer’s Association Michigan Chapter, about the work her program is doing to engage people with dementia. Kayla manages the Bruce H. and Rosalie N. Rosen Community Connect Program, which provides people living with dementia and their care partners a broad range of social and cultural opportunities.You can read about and register for these programs at https://www.alz.org/gmc/helping_you/social_engagement. And, you can reach Kayla with questions or ideas at kjakel@alz.org.Afterwords, I speak to Ginger about social engagement programs she would be interested in attending and we talk about some of her memories related to the programs being offered by Community Connect. You may note that Ginger begins experiencing sundowning toward the end of our conversation and that remembering recent events and word recall become more challenging for her. This is an everyday occurrence for Ginger and other’s suffering from Alzheimer’s disease.

Neuropsychology and diagnosing dementia in your loved one

Neuropsychology and diagnosing dementia in your loved one

In this episode of Living with Alzheimer’s, I speak with Neuropsychologist Dr. Michael Lawrence, who is a board certified clinical neuropsychologist operating as the section chief and director of training in clinical neuropsychology and specializing in conducting evaluations of people with potential epilepsy, dementia and concussions.Dr. Lawrence describes three major types of dementia, their typical symptoms and how they differ from each other. We also discuss the science of dementia diagnosis and how it has developed over recent decades. Afterwards, I speak with Ginger about her battle with recurrent urinary tract infections, how they have impacted her dementia symptoms and what we are doing to help prevent future UTIs.

Alzheimer’s Association mission, research and support services

Alzheimer’s Association mission, research and support services

In this episode of Living with Alzheimer’s, I speak with Kristin Rossi, Vice President of Development at Alzheimer’s Association Michigan Chapter, about her role generating revenue to help fund Alzheimer’s Association research and support efforts. We also talk about the association’s mission and the many services it provides to the public.Kristin shares how Walk to End Alzheimer’s events bring so many people together to support the association and each other. You can find walk events in your area at alz.org/walk. And you can donate directly at act.alz.org/donate.Kristin shares information about support for caregivers and families and how Alzheimer’s Association’s support hotline at 800.272.3900 provides resources for them. And we talk about the association’s Science Hub app, which provides the public access to Alzheimer’s Association research news.

Recharging with yoga

Recharging with yoga

Christoph and Ginger discuss yoga and its benefits with yoga instructor Melissa Tungl. Melissa is instructor and owner at Seva Yoga (www.sevayoga.net) in East Grand Rapids, Michigan. Seva is a Sanskrit word often associated with the facet of yoga meaning service.The episode covers the system of yoga and how it can benefit people of all walks of life. It highlights how yoga can benefit people with dementia as well as their caregivers. It covers how Melissa modifies her instruction to meet Ginger’s needs, and it includes some snippets of a live yoga session to illustrate points made in the discussion.

Holding onto memories

Holding onto memories

Christoph and Ginger discuss holding onto and recalling memories.Ginger shares stories about her memories of travel.And Christoph and Ginger interview Alzheimer's Association care counselor Brandi Becker-Wright, who shares several insights about how Alzheimer's impacts the brain's ability to store and retrieve memories.The Alzheimer's Association provides a 24-hour dementia helpline at (800) 272-3900.

Ginger learns we're doing a podcast

Ginger learns we're doing a podcast

Christoph and Ginger kick off the Living With Alzheimer's podcast.In this episode, Christoph explains what a podcast is and they have a conversation about her dementia diagnosis. Ginger shares some personal stories and life insights.