By Marianne Sciucco, New York, USA
Dementia caregiving is a demanding journey, often filled with love, frustration, and sacrifice. While the initial years can be particularly challenging, the long-term effects of this role can be profound, affecting the caregiver’s physical, emotional, mental, and financial health.
Please join us for an AlzAuthors Live! panel discussion on the realities of long-term dementia care and its impact on caregivers on Tuesday, February 18th at 2 pm EST. We will be joined by Jean Lee, Ann Campanella, Loretta Woodward Veney, and Dave Iverson.
This event will be recorded and published on our podcast and YouTube Channel on March 15th as part of Podcasthon, a global initiative of 1,500+ podcasts to raise awareness and funds benefiting just as many charitable organizations.
Potential topics:
The Emotional Toll: One of the most significant challenges faced by long-term dementia caregivers is the emotional toll. As the disease progresses, caregivers often witness the gradual decline of their loved one’s cognitive abilities and personality. This can lead to feelings of grief, loss, and despair. The constant stress and worry can also contribute to anxiety and depression. Caregivers may experience a range of complex emotions, such as guilt, anger, and resentment. These feelings can arise from the challenges of balancing caregiving responsibilities with other commitments, or from the frustration of dealing with behavioral changes associated with dementia.
The Physical Strain: Long-term dementia caregiving can also take a significant physical toll. Caregivers may find themselves constantly on call, sacrificing sleep and rest to attend to their loved one’s needs. This can lead to physical exhaustion, chronic pain, and weakened immune systems. Additionally, the physical demands of caregiving, such as lifting and transferring, can increase the risk of injury.
The Financial Burden: Financially, long-term dementia care can be overwhelming. The costs of in-home care, adult day care, or nursing home placement can quickly deplete savings and retirement funds. Caregivers may also face significant out-of-pocket expenses for medications, medical equipment, and home modifications.
Social Isolation: Caring for a loved one with dementia can lead to social isolation. Caregivers may find it difficult to maintain friendships and hobbies, as their time and energy are consumed by caregiving responsibilities. This isolation can exacerbate feelings of loneliness, stress, and depression.
Strategies for Coping: While the challenges of long-term dementia caregiving are significant, there are strategies that can help caregivers cope and maintain their well-being. The authors will share strategies that worked for them.
Meet the Panelists
Jean Lee Jean is the author of Alzheimer’s Daughter, her gripping memoir about caring for both parents with Alzheimer’s at the same time. After the publication of Alzheimer’s Daughter, Jean connected with other authors of Alzheimer’s books to co-found AlzAuthors.com. Growing from her years of teaching elementary school, Jean has also published three children’s books, Lexi’s Triplets, Lexi’s Litter of Three and Julia’s Journey to Her Forever Home about her grandchildren and their beloved pets. Learn more about Jean here
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Ann Campanella is the award-winning author of three memoirs and four poetry collections. Formerly a magazine and newspaper journalist, her writing has been published worldwide. Her memoir, Motherhood: Lost and Found, was named “One of the best Alzheimer’s books of all time” by BookAuthority two years in a row. Twice, Ann has received the Poet Laureate Award from the North Carolina Poetry Society. She has served on the AlzAuthors management team since 2017. Ann lives on the banks of Lake Norman in North Carolina and enjoys nightly sunsets with her husband. Learn more about Ann and her writing here. Learn more about Ann here.
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Loretta Woodward Veney is an author and motivational speaker who has delivered more than 300 presentations on the topics of aging, caregiving, and dementia. She is the author of Being My Mom’s Mom, Refreshment for the Caregiver’s Spirit, and an intergenerational coloring book entitled Colors Flowing from My Mind. She may be best known for her work as a LEGO Ambassador, sharing her love of LEGOs as an engagement tool for those living with dementia.Learn more about Loretta here.
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Dave Iverson is a writer, documentary film producer/director and retired broadcast journalist. When Dave was 59, he moved in with his 95-year old mom, Adelaide, when she could no longer care for herself. His memoir Winter Stars: An Elderly Mother, an Aging Son and Life’s Final Journey tells the story of the ten-year caregiving odyssey they shared, until her passing at the age of 105. He has produced and reported more than 20 documentary specials for PBS, including the Frontline film, “My Father, My Brother and Me” which explored his family saga with Parkinson’s disease. Dave hosted local PBS and NPR programs at Wisconsin Public Broadcasting and at KQED San Francisco, where he hosted the Friday edition of Forum for ten years. Dave is also a founding member of The Michael J. Fox Foundation’s Patient Council. His awards include a national Emmy, numerous regional Emmys and multiple film festival citations. Winter Stars is Dave’s first book. Learn more about Dave here.
Meet the Moderators
