Wellness Posts by Lisa B. Capp

Post-Menopausal With A Family History Of Dementia

support@wellness.com — Fri, 08 Nov 2024 05:00:00 Z

Wellness.com - Post-Menopausal With A Family History Of Dementia by Lisa B. Capp

I follow news closely because of selfish worry I may develop dementia following the loss of both parents to this devastating brain disease. My middle-aged siblings and I are -children of dementia. A history lesson may be in order for perspective. The German physician Alois Alzheimer studied Auguste Deter in 1906; you can think of Auguste as dementia’s patient zero. Dr. Alzheimer worked to understand neurodegenerative disease by observing this woman’s behavior. In the 100+ years since his initial work, science has been unsuccessful in delivering fully effective detection techniques, treatment or cure for the collection of diseases we know as dementia. Initially scouring mainstream media reports from this year’s research conference I became concerned. I learned the risk of dementia -increases -if you: - Had fewer than three children- (check) - Spent less time cumulatively pregnant, especially in the first trimester (check) - Did not take hormone replacement therapy at the onset of menopause (check) - I learned -dementia risk -decreases- when a woman’s menstruation- begins at or around 13 years and her menopause onset is after age 45 (check). Where I remain unclear about my dementia risk is having my infertility result from endometriosis, taking birth control pills not to prevent pregnancy but to control the intense pain of my endometriosis and taking a cocktail of fertility drugs in my peak pregnancy years to unsuccessfully increase my odds of having children. I have a deeper understanding after studying source documents from the conference to know that although this research is groundbreaking, it’s just too early to draw conclusions. “This is observational study,’ said Rachel Whitmer, Professor of Public Heath Sciences at UC Davis School of Medicine who co-led the Kaiser Permanente study in the role of women’s reproductive history with dementia. “It does not tell you the mechanisms, only who is at a lower or higher risk. The information will allow scientists to take the next step to do more experimental work and really delve in.” - “Because Alzheimer’s disease is a life course disease in my opinion, the risk starts in the womb and then is affected by your genes, your early life risk factors, your diet, your exercise and so much more,” states Dr. Richard Issacson who founded the Alzheimer’s Prevention Clinic at New York-Presbyterian/Weill Cornell Medical Center. What we know today: - Dementia has long been considered an aging disease. Add to that the statistical reality that women live longer than men. What resulted was a prevailing view that more women than men would simply be diagnosed with dementia. Although scientists suspected sex hormones like estrogen and progesterone might play a role in the disease, the risk around women’s reproductive history wasn’t fully studied. This new research may result in more effective detection and prevention protocol distinguished by gender. The Kaiser Permanente study involved the most diverse population over the longest period of time. Starting in 1964 the study looked at women aged 40-55 of different education level, race and midlife health status. Diagnosis of their chronic conditions and brain disease were culled from 2016-2017 records. The study findings are monumental in laying the foundation for next steps in experimentation and may in time address the other questions we have as middle-aged women facing the prospect of dementia. Women aren’t diagnosed with dementia early enough due to the verbal clinical testing used today for detection according to a study from the University of Illinois at Chicago. Women excel in the verbal memory skills these tests build upon, which can mask the early stage of the disease delaying a woman’s detection or treatment. The flip side of this testing anomaly may be over diagnosis in men making this finding an excellent opportunity to change not only testing standards to account for gender differences, but also to improve early disease detection for all. What can we do to advance the next steps in this landmark research? - Support more research through funding: If you have means, use it to further the crucial next steps in these experiments. Join Maria Shriver’s -The Women’s Alzheimer’s Movement- because, “women are at the epicenter of the Alzheimer’s crisis”. S - upport research through activism: It’s critically important to raise our voices together to make dementia research a continued priority at our federal level. The Alzheimer’s Impact Movement- (AIM), the sister organization of the Alzheimer’s Association is a great place to start. Other Sources: - https://www.cbsnews.com/news/motherhood-fertility-alzheimers-risk-women/ - https://www.aarp.org/health/dementia/info-2018/women-alzheimers-pregnancy-link.html - To learn more about Lisa B. Capp and her work on caregiving, visit -www.lisabcapp.com.

4 Ways to Maintain Your Own Well-Being as a Caregiver

support@wellness.com — Wed, 08 Jan 2020 08:00:00 Z

Wellness.com - 4 Ways to Maintain Your Own Well-Being as a Caregiver by Lisa B. Capp

According to reports from the National Alliance for Caregiving and AARP, approximately 43.5 million Americans provide unpaid care for an adult or child. That’s over 20% of the general adult population in this country! The Baby Boomer generation represents the largest group of unpaid caregivers today. With illnesses that have no sustained treatment or cure, millennials are next in line as caregivers if they aren’t already serving in that capacity to grandparents diagnosed or parents with early onset conditions like dementia and Alzheimer’s disease. After diagnosis an illness normally plays out in stages. I think about - the arc of my mother’s life - as college sorority sister, to wife, mother and career, through my father’s passing, followed by her 18-year dementia journey and, ultimately, her death. A caregiver’s life plays out in stages, too. I had a career that took me to clients around the globe and my husband had a demanding job. We enjoyed friends, were engaged in our community and, although we had no children, had settled into a fulfilling - life-after infertility. It was in the midst of my so-called life that my mom came to live with us and I learned about being a care partner. In situations like ours, caregivers are encouraged to stay healthy and to focus on their well-being in addition to the well-being of those in their care. What we may never fully appreciate in caregiving is that our well-being isn’t just the absence of physical disease. Well-being is a complex combination of physical, mental, emotional and social factors. What is fundamental to our health is the link we have to happiness and satisfaction - within - our lives. For caregivers supporting a loved one with a debilitating illness, happiness and satisfaction can be elusive concepts in the day-to-day act of caregiving. This is especially true with illness that encompasses several stages or can span many years. By accepting well-being as a state of mind, we could feel more control to take small steps after diagnosis. When trying to answer the question “what’s possible” consider the following: - Don’t judge what you are feeling: - From initial denial and detection through diagnosis and the various stages of decline, your feelings will vacillate wildly. A care partner takes a distinctly different emotional path than someone diagnosed with long-term illness. Whether directed at yourself, your family, your friends, your job, the medical community, fate or the world, what you feel can lead to a sense of shame or embarrassment. Accept your feelings and move on without judgment. Avoid the stigma trap: - Stigma can surround debilitating disease and be a recurring challenge for caregivers and those diagnosed. Common reactions result in holding the diagnosis secret in an attempt to protect your loved one and yourself. Reminders that you are facing one of the most difficult challenges the universe can hand you are necessary as well as finding ways to let others in who will ultimately provide support and assistance. Live life in small measure and find inspiration in the moments: - There’s no denying your world turns upside down following a terminal diagnosis. Early stage might require little change or simple accommodation while the later stages of disease can be devastating. Jot down what you see and feel, those moments in which you’re proud and those you would like to do-over. With calm reflection, patterns may emerge putting your world into a bit of perspective. You might see ways to manage difficult situations together and reset your state of mind on a more constructive path. Unite together against disease to live your best lives: - Partnering after diagnosis takes extraordinary commitment for caregivers, because someone we care deeply about is declining. And living with disease after diagnosis requires incomprehensible determination to move forward. Whether it's physical, emotional or spiritual, surviving a significant diagnosis is damned difficult for all. Honor yourself as you honor your partner for what can prove to be a long journey. Speaking ‘out loud’ about your hopes and fears in a wake left by serious diagnosis is essential. Clarifying your initial goals together then ‘re-goaling’ as necessary is fundamental to living life as fully as possible, for as long as possible. Thinking in small measure will allow you to redefine goals as your caregiving situation evolves. To learn more about Lisa B. Capp and her work on caregiving, visit -www.lisabcapp.com.

Finding Happiness After a Dementia Diagnosis

support@wellness.com — Sun, 27 Jan 2019 22:00:00 Z

Wellness.com - Finding Happiness After a Dementia Diagnosis by Lisa B. Capp

Today 5.7 million Americans are living with Alzheimer’s and related dementias. By 2050 the number is projected to grow to nearly 14 million. Bracing against the disease, while standing alongside those diagnosed, are family and friends wrapped in an intricate web of perplexing emotion. Dementia plays out in stages. I think about - the arc of my mother’s life - as college sorority sister, to wife, mother and career, through my father’s passing, followed by her 18-year dementia journey and, ultimately, her death. My life played out in stages, too. I had a career that took me to clients around the globe and my husband had a demanding job. We enjoyed friends, were engaged in our community and, although we had no children, had settled into a fulfilling - life-after infertility. It was in the midst of my so-called life that my mom came to live with us and I learned about being a care partner. In situations like ours, we’re encouraged to stay healthy, to focus on our well-being in addition to the well-being of those around us. What we may never fully appreciate is that well-being isn’t just the absence of physical disease. Well-being is a complex combination of physical, mental, emotional and social factors. Question those who partner with or live with dementia and you may be met with the silence or venting that comes from either witnessing or experiencing the decline of the disease. What’s fundamental to our health is the link each of us has to happiness and satisfaction - within - our lives. This is critically important given that Alzheimer’s and dementia encompass several stages and can span many years. By accepting well-being as a state of mind, we can feel a bit more control in taking small steps after diagnosis. Three considerations for those living with or partnering with dementia when trying to answer the question “what’s possible after this diagnosis?” - Don’t judge what you are feeling: - From initial denial and detection through diagnosis and the various stages of decline, what you feel will vacillate wildly. A care partner will take a distinctly different emotional path than someone diagnosed with dementia. Whether directed at yourself, your family, your friends, your job, the medical community, fate or the world, what you feel can lead to a sense of shame or embarrassment. Remind yourself often that you are facing one of the most difficult challenges the universe can hand you. Move on without judgment. Live life in small measure and find inspiration in the moments: - There’s no denying your world turns upside down following a dementia diagnosis. Early stage might require little change or simple accommodation while the later stages of the disease can be devastating. Jot down what you see and feel, those moments in which you’re proud and those you would like to do over. With calm reflection, patterns may emerge that help put your world into a bit of perspective. You might see ways to manage difficult situations together and reset your state of mind to a more constructive path. Unite together against the disease to live your best lives: - Partnering in dementia takes extraordinary commitment as someone you care deeply about declines through age or illness. Living with dementia requires incomprehensible determination to move forward through an illness that today has no cure. Whether it's physical, emotional or spiritual, surviving a dementia diagnosis is damned difficult for all. Honor yourself as you honor your partner in what can be an ultimately unrelenting dance. Clarifying your goals together in the wake of a dementia diagnosis is necessary to live as fully as possible, for as long as possible. Thinking in small measure allows you to redefine those goals as your situation evolves. To learn more about Lisa B. Capp and her work on caregiving, visit -www.lisabcapp.com. Sources: - https://www.alz.org/alzheimers-dementia/diagnosis/life-after-diagnosis - https://www.alz.org/help-support/i-have-alz/know-what-to-expect/just-diagnosed - https://www.verywellhealth.com/dementia-diagnosis-questions-98857

Finding Unexpected Moments in Frontotemporal Dementia Caregiving

support@wellness.com — Fri, 01 Jun 2018 07:00:00 Z

Wellness.com - Finding Unexpected Moments in Frontotemporal Dementia Caregiving by Lisa B. Capp

Frontotemporal Dementia (FTD, formerly known as Pick’s Disease) is less common than Alzheimer’s among the many forms of dementia. However like Alzheimer’s, FTD is untreatable, can be diagnosed as early as age 40 and is ultimately devastating to those living with the disease and those caring for a loved one. Consider this... His wife, Cindy, was an independent, well-respected high school math teacher and Rob felt secure in his position as a midlevel manager in the telecommunications industry. Their lives were full of good fortune, until Rob was willing to recognize the changes. He penned a letter to family and friends disclosing how their lives were changing and that he would be taking a work leave to care for Cindy. As Rob wrote, he struggled to find words to describe their new normal after an FTD diagnosis. The chill from Lake Erie penetrated his coat, but the anxiety emanating from Cindy as they approached the building was sharper. Today was her annual mammogram appointment. In the waiting area Cindy paced back and forth, a common behavior now. Upon hearing her name, she bolted to the exit. Holding her hand, Rob redirected her, knowing she couldn’t go in alone. “Should the opening be in the front?” he naively questioned as they navigated the gowning process. Amid the buzzing technology, bright fluorescent lights and a medical procedure so foreign to Rob, he asked for more strength than on an average day in her decline. Standing at Cindy’s side, they faced the mammoth machine while the technician’s shoes squeaked back and forth across the tile floor. Being careful not to break their embrace, she slipped the x-ray shield over Rob’s body and wrapped the skirt around Cindy’s waist. As the machine revved up, Rob caught a glimpse of the terrified child trapped inside Cindy’s disease. They stood together as heavy compression applied to her breasts flattened them one-by-one for imaging. “You can breathe now Cindy,” the technician called out from the cover of her cubicle. And they exhaled as one. This was an unexpected moment between Rob and Cindy; a moment of connection you don’t often find as a loved one sinks into mid and then late-stage FTD. Rob was taking care of her and his care gave her strength. He should have felt that strength, too. Instead he admitted to only feeling lonely, powerless and trapped inside a despicable disease that was erasing his wife from their life together. Rob’s story reminds us how important it is to speak out loud about caregiving experiences. Rob lost Cindy to FTD in 2010 after 24 years together. Some perspectives from his journey: - Don’t apologize for your loved one’s behavior. It takes courage to engage in an unforgiving world when you’re living with brain disease or caring for a loved one. Consider the opportunity to educate others about the disease as Rob did in his letter to family and friends. The more we understand, the less we may fear. Research the long-term financial implications - of brain disease. You’ll need help navigating the challenges of health care cost, insurance coverage, care facility expense and the basic affordability of it all. Don’t go it alone. Get insights from professional organizations (local Agencies on Aging or Alzheimer’s Associations), helping you avoid costly mistakes. Find those who relate to your situation. Family and friends may get trapped by their own fears, which can interfere with support to you and your loved one. Seek others who have walked your path without the emotional baggage family can sometimes carry. Rob Lane is an empathetic FTD caregiving mentor. He’s willing to listen and share perspectives with caregivers facing a Frontotemporal Dementia journey with a loved one. For more information on FTD, visit -https://www.caregiver.org/frontotemporal-dementia - To learn more about Lisa Capp and her work with those living a care partner life, visit -www.lisabcapp.com.

The Alzheimer’s Tsunami: Waves Rushing to Shore

support@wellness.com — Tue, 17 Apr 2018 07:00:00 Z

Wellness.com - The Alzheimer’s Tsunami: Waves Rushing to Shore by Lisa B. Capp

Between 2000 and 2015 death from Alzheimer’s disease increased 123%. In the same period death from other major diseases in our country declined. This data point may surprise you as Alzheimer’s and related dementias today still share a common reality; they cannot be prevented, slowed or cured. After my mother’s death in 2015, I met with her geriatric psychiatrist. Our conversation transported me back to the moments of powerlessness, loneliness and guilt I experienced throughout her 18-year dementia journey. “Do you know what déjà vu is, Lisa?” the doctor asked. “Why yes, a feeling you’ve been somewhere before. A sense it’s familiar.” “Yes, déjà vu means the -strange is familiar. Do you know what jamais vu means?” I shook my head, no. “Jamais vu is what our family and friends experience in dementia and Alzheimer’s – -the familiar is strange. Fundamentally you struggle to identify something you know, something you’ve known your entire life but now it’s strange to you.” - In my mother’s illness I saw her only through the lens of my rational thought. She’d pick up her comb, looking at it as if she’d never seen it before and confounded by its very function. Taking the comb from her, I’d smooth her hair with my hand as we rushed out the door late to an appointment. I was clueless to the complexities my mother experienced, the disruption of normal connections being made in her brain as she declined through the disease. This conversation I had with her doctor after she passed away provided insight and clarity. The kind of perspective I wish I’d had sooner in my caregiving journey! - Maintaining balance is critical for care partners, especially when supporting a loved one with a debilitating illness. Some strategies to keep in mind: - Find your tribe - Your tribe may not be your family or friends. Search forums to find the best fit for you to connect with others on a similar emotional journey. For some it might be an in-person facilitated support group and for others it might be private social networking communities. What’s most important is to find a place where you feel comfortable sharing not only your story but also the raw emotions you’ll need to work through. Change your perspective - You already know how difficult it is to live in your reality as a care partner so attempt to live in your loved one’s reality, even if only for a short time. Try to see the world through their eyes. Technology today affords many opportunities to better understand what a person living with dementia experiences through a distorted sense of sight, smell or touch. Forgive yourself often - Caring for a loved one with dementia and Alzheimer’s disease can be a long and tiring journey. Although you’ll find moments of great fulfillment, you’ll beat yourself up for your missteps, too. Don’t be too hard on yourself. Remember it’s the disease, not your loved one you see in moments of tension. And it’s your loved one, not the disease you see in moments of lucidity. Treasure the moments of lucidity you share. Find strength in the development of your own personal survival strategy. Having a strategy allows you to maintain your health so you can effectively care for your loved one. To learn more about Lisa and her work with those living a care partner life visit -www.lisabcapp.com