With the prevalence of Alzheimer’s disease expected to impact 16 million individuals by 2050, younger generations will increasingly assume caregiving responsibilities. More than a third of today’s caregivers are employed full-time. As millennials take on informal caregiving responsibilities, public and workplace policies must consider financial assistance or other support (e.g., family leave or allocated time off). This report explores the economic impact of the shift to millennial caregivers and the higher rate of incidence of Alzheimer’s disease in minority groups. The report concludes with a discussion of strategies at the organizational-and system-level to support millennial caregivers.
Calls for Action
Define public policy in supporting family caregivers in providing care.
Address how universities can better support student caregivers.
Companies and employers take the lead in supporting working caregivers.
Caregiver supports begin in communities.
To view the white paper, click here.
To view the best practice, click here.
Maya Gosztyla is the creator of AlzScience. Her passion for Alzheimer’s disease began at a young age when her grandmother was diagnosed with vascular dementia following a stroke. She currently works in a lab at the National Institutes of Health, where she’s researching a rare neurodegenerative disorder called Niemann-Pick Disease. In addition to her love of research, Maya has a passion for science writing and hopes to continue educating the public about the ways we can keep our brains healthy as we age. We are excited to interview Maya about her research, fighting Alzheimer’s and the role of diet in brain health. Follow her on Twitter @AlzScience
Can you tell us about your journey in science?
I’ve pretty much always known that I wanted to be a scientist, but the exact field of science has varied quite a bit. For most of my high school, I wanted to be an astrophysicist. But then I took an advanced biology course in my senior year, and I was hooked! I ended up going to college at the Ohio State University and double-majoring in Neuroscience and Molecular Genetics. I knew I wanted to get involved with research, so I joined a lab that was studying how axons (the long projections that neurons use to send electrochemical signals) are guided to their proper destinations during the development of the nervous system. This research was fascinating work, but over time, my interests began to drift more toward studying human diseases. I spent some time in Switzerland doing a research project on Alzheimer’s disease, which convinced me that this was the area of research that I wanted to focus on. After I graduated, I secured a research fellowship at the National Institutes of Health (NIH), where my research has a biomedical focus. I’m now applying to Ph.D. programs in Neuroscience, and I hope to begin my enrollment this fall. I plan to research the underlying mechanisms of neurodegenerative diseases (including Alzheimer’s) and develop new strategies for treatment.
What areas of research are you currently pursuing?
My section of the NIH is called the National Center for Advancing Translational Sciences. We are interested in the “bench to bedside” research, which involves taking scientific discoveries and trying to apply them to treating diseases. One of my projects is to develop a method to quantify how much cholesterol is inside of neurons that are growing in a dish. There are several diseases caused by the accumulation of too much cholesterol, including Niemann Pick Disease (also known as “childhood Alzheimer’s disease”). We are hoping that this new method will allow us to quickly screen thousands of different chemicals to see if any of them can reduce how much cholesterol is inside these cells. After that, we can investigate those chemicals further and try to develop them into a new treatment.
What’s one fact that you’ve learned about the brain?
During the day, your neurons are working hard sending lots of signals, and in the process, they release a lot of waste products into your brain. One of these waste products is amyloid-beta, a toxic protein that’s believed to be responsible for Alzheimer’s disease. Luckily, when we sleep, all the gunk inside your brain gets cleared away. That’s why getting enough sleep is so important!
What’s one piece of advice you would give to early career researchers?
One of the best things I ever did was start a science blog. It’s a great way to get more familiar with your field of research while helping other people to understand. It’s also great for networking; so far two people at my Ph.D. interviews have told me that they are regular readers of my blog!
How can science communication contribute to fighting against Alzheimer’s disease (AD)?
There’s a lot of misinformation surrounding Alzheimer’s disease. A lot of people don’t realize that only one-third of your overall risk is due to genetics—the rest is all determined by your lifestyle choices! A balanced diet, regular exercise, and lifelong learning can dramatically reduce your risk of getting this disease. I’m hoping that my efforts in science communication can help more people learn how to start taking better care of their brains.
What’s one recommendation you’d give people wanting to reduce their AD risk?
Probably the number one best thing you can do for your brain is to improve your diet. A lot of research has shown that the Mediterranean diet, which is also great for heart health, dramatically reduces the risk of Alzheimer’s disease. This diet minimizes saturated fat and red meats while consuming lots of vegetables, legumes, and whole grains. Even if you take a small step toward improving your diet, like cutting out all sugary beverages, it can make a big difference in your brain health, not to mention your body!
What are you most proud of in your life?
I started my blog AlzScience about three years ago, and I’m so proud of how far it’s come. Last year the site had nearly 15,000 readers and also won a Science Seeker Award. It’s fantastic when people comment that they are grateful to learn the information.
What are your future career goals?
This fall, I’m planning to start a Ph.D. program in Neuroscience. My goal is to pursue a career in research either as a professor or in the pharmaceutical industry. I hope I can play a key part in bringing Alzheimer’s cure research to fruition.
What do you like to do for fun?
I love jogging; it’s my favorite way to clear my head. I also read a lot, and occasionally play around on my violin.
Alzheimer’s disease is “the most under-recognized public health crisis of the 21st century,” according to the Alzheimer’s Association. Only 45 percent of people with Alzheimer’s are told about their diagnosis by a healthcare provider, compared to more than 90 percent of people with the four most common types of cancer. And of the top 10 causes of death in the USA, Alzheimer’s is the only one that cannot be prevented, cured or slowed.
What is a public health crisis? The World Health Organization (WHO) uses the term “crisis” for a “situation that is perceived as difficult.” A crisis may at times elude public knowledge, contain different levels and layers of intensity, and have the potential to reach levels beyond what is predicted. For example, specific events such as the 2014 Ebola virus epidemic and 2001 anthrax attacks are characterized as public health crises. Issues like addiction and obesity often have the same distinction.
Alzheimer’s fits the definition of a public health crisis. People who have the disease are impacted, along with their loved ones and the entire healthcare system. In the coming years, the number of Alzheimer’s diagnoses and deaths is expected to increase. The financial toll of the disease on families and the economy is also expected to rise, worsening an already difficult situation.
What Is Being Done?
The CDC’s BRFSS Survey
The Behavioral Risk Factor Surveillance System (BRFSS) survey, by the Centers for Disease Control and Prevention (CDC), collects data at the state and local level to target and build health promotion activities. Because the data tracks the impact of cognitive decline and Alzheimer’s disease, it can be a strong tool for informing the community about these trends and how to respond. The survey can also help policymakers with decisions involving Alzheimer’s.
Initiatives Promoting Cognitive Health
Enhanced cognitive activity — along with good physical health, exercise, nutrition and social engagement — can potentially reduce the risk of cognitive decline and possibly prevent Alzheimer’s disease. The following initiatives represent some of the ways that federal agencies are addressing the crisis of Alzheimer’s disease.
Healthy Brain Initiative
The CDC and the Alzheimer’s Association organized the Healthy Brain Initiative, which seeks to better understand cognitive impairment. The initiative targets interventions to improve cognitive health and implementation of positive actions into public health practice.
According to the Public Health Road Map Report for 2013-2018, the initiative focuses on ensuring that people with dementia are aware of their diagnosis as well as reducing preventable hospitalizations among patients with dementia. Other action items are divided into four domains: monitor and evaluate public health data; educate and empower the nation about causes of disease, injury and disability; develop policy and mobilize partnerships on cognitive health; and assure a competent public health workforce.
Healthy People 2020
The Healthy People program establishes national health-related goals set by the United States Department of Health and Human Services. The most recent 10-year agenda for public health topics and objectives listed dementias, including Alzheimer’s disease, as a new topic area for the program.
The primary goal in Healthy People 2020 is reducing morbidity and costs related to dementia as well as maintaining or enhancing the quality of life for those with dementia. Other areas where progress is important include early diagnosis, interventions to delay and prevent onset of disease, better ways to manage Alzheimer’s when other chronic conditions are present, and understanding lifestyle factors that influence risk.
The Role of Education
Education is critical for the public health crisis of Alzheimer’s disease. This can lead to greater public understanding of the disease, resulting in more support for people with Alzheimer’s and their caregivers. Enhanced public education can also create additional momentum for research on Alzheimer’s. Hence, public health professionals who are trained to help with Alzheimer’s can make a difference, from investigating the disease to providing resources in their community.
Brian Neese has been writing about online education for more than five years, with specialties in health care, business and education. In his spare time, he enjoys sports, movies and spending time with family and friends.
Chances are you know someone caring for a loved one who is sick or has a disability. This could be due to an illness such as Alzheimer’s, Parkinson’s, cancer, stroke, or a variety of other conditions. Some family members provide live-in care, others visit daily or weekly, and some oversee care from a distance, or care provided by hired aides or a nursing facility.
No matter how the caregiver performs his or her role, caregiving is a tough job, requiring resources that are often scarce: time, money, support, and assistance. The Centers for Disease Control and Prevention (CDC) states that more than 34 million unpaid caregivers provide care to someone age 18 and older who is ill or has a disability, and an estimated 21 percent of households in the USA are impacted by caregiving responsibilities.
Almost all of this work is unpaid, typically provided by family members and often performed around the clock with no breaks. Also, many caregivers juggle other responsibilities such as jobs, raising children, and managing their own households.
November is National Caregivers Appreciation Month, and a great time to reach out to those providing care and help lighten their load. In recognition of those who work tirelessly and selflessly to care for a loved one, below are 12 ways to offer assistance and let caregivers know that you care. These people need support and often that support does not cost much, if anything, and takes little time.
Ask if you can sit for them a little while so they can run errands, take a break, see the doctor, or attend church or a caregiver’s support group, whatever they need to do to take care of themselves.
Going to the grocery store? Call and ask if there is anything you can pick up for them.
If your employer allows, donate paid sick time, vacation days, or personal time to a coworker caring for a relative who is hospitalized or needs post-hospital care.
Volunteer to mow the lawn, weed the garden, rake the leaves, or shovel the snow.
Share the bounty, whether from your vegetable or your flower garden. Fresh produce and fresh flowers are cheerful.
If you have the skills and tools, offer to change the oil in their car and rotate the tires.
Again, if you have the skills and tools, offer a free haircut to the caregiver and/or their loved one.
Walk their dog.
Ask if they would like you to wash and clean out their car.
Volunteer to take out the trash and bring the barrels out to the curb on trash day.
Double cook a meal, preferably one of their favorites, and send over a dinner.
Include them in your prayers.
For more information about caregiving and caregivers, please follow #AlzAuthors on Twitter during National Caregivers Appreciation Month in November 2015, or find AlzAuthors on Facebook.
Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up, but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story, is a Kindle bestseller, BookWorks featured book, IndieReader Approved, and winner of IndieReCon’s 2014 Best Indie Novel Award. A native Bostonian, Marianne lives in New York’s Hudson Valley and when not writing, works as a campus nurse at a community college. She can be reached via her website, Facebook, and Twitter.
Research over the last 20 years on the impact of lifestyle on brain health indicates that how people live each day can strongly influence the delay and potential prevention of dementia and Alzheimer’s disease. To appreciate the full weight of these findings, the World Alzheimer’s Report 2014 estimates that if dementia is delayed for just five years, incidence would be cut by half! By 2030, this delay translates to nearly 44 million people who will not succumb to dementia, and estimated financial savings for individuals, their families and global health systems is projected to exceed $600 billion.
Risk for age-related brain disease, the number one fear of people over 50 in the USA, begins decades before symptoms appear. The appeal of embracing a protective lifestyle is a welcomed alternative and becomes increasingly important from middle age onward. While the brain’s plasticity across the lifespan means that it is never too late to benefit from healthy lifestyle choices, the rule of ‘use it or lose it’ implies that loss of unused neural networks, skills and healthy habits are harder to recapture the older people get.
Figuring out how to live each day may not be so simple. Though multiple studies show a difference in types of daily activities for people who did not develop dementia versus those that did, pinpointing WHAT activities is complex. Researcher Jaak Panksepp’s work sheds light on wired at birth brain networks that need to stay active across the entire lifespan to effectively promote survival and longevity for mammals. These include seeking, play, care and restoration. Scientific news reports also tout the importance of sleep, exercise, diet, leisure activities, antioxidants and other factors supporting brain health. In general, beneficial lifestyle activities create awareness and reflection, involve physical activity, promote heightened engagement and connection to people, pique interest, and more.
Frequency counts! The above-referenced research suggests that those who did not develop dementia engaged in at least five beneficial activities per day, five days a week. Given that average cognitive decline for people over 60 is 1-2 percent per year, frequency appears to be very important to avoid this slippery slope. Actual improvement in cognitive function will also likely require MORE than these activity levels. For most, this runs counter to conventional thinking about aging, which tells people to slow down or retire as they age.
Brains are better off if individuals participate in beneficial activities such as good sleep, exercise, learning and play; and people engage in interesting, fun hobbies five times a day, five days a week. Due to the slippery slope of decline per year, people need to maintain a healthy lifestyle throughout their lives by staying active. The goal is not to overwork the body to keep brains healthy, so below are two mechanisms that promote wholesome lifestyles and offer protection if people take time out because of illness, injury, or vacation.
1. The longer people engage in beneficial activities, the more cognitive reserves they build, which protect against cognitive decline. Education and physical exercise are the primary ‘reserve’ builders. Education across the lifespan is the best way to maintain and improve brain functioning, and the more physical exercise people do over many years, the greater resiliency their bodies have to fight unhealthy aging. Reserves will kick in for protection if injury, illness or an abundance of stress occurs. Even those with ailments can partake in tailored activities that ensure the highest possible quality of life.
2. It is possible to multiply the benefit of each activity by adding ‘boosters’. There are a number of ways to do this, but for simplicity’s sake, counting to five is ideal:
Add social engagement to any activity throughout each day.
Weave a physical element into whatever you are doing – work up a sweat as you vacuum, go for a walk while on the phone, take action breaks when sitting for extended periods.
Choose activities that are meaningful to you – be with people you care about, do things you consider important and have always wanted to do.
Love what you do! Choose activities that make you and others laugh, that make you feel great, and that bring out the best in you.
Try new things, meet new people, stretch your mind and body in ways you have not done before.
By counting to five – five activities a day, five days a week, five boosters that add up to five more years of brain health – one can reap a potential lifetime of health benefits for both the brain and body.
Joan Parsons, MBA and MS Certificate in Interpersonal Neurobiology, is founder and CEO of Lifestyle Rewired. The company offers lifestyle assessments, High Value Activity Programs and Immersion Travel Programs that enrich and protect brain health. Joan’s mother Sally developed dementia in her 70’s, becoming the inspiration to identify how such a vital woman could succumb to brain disease at a relatively young age. Researching hundreds of studies on the impact of lifestyle on the brain enabled the team to develop concepts and models to support life long brain health, hence Lifestyle Rewired was born. The company’s programs and tools focus on activities that inspire learning, new experiences, and meaningful human connection.
In 2004, my father was diagnosed with Parkinson’s-related dementia and a few months later, my mother with Alzheimer’s disease. That was the year I became a caregiver. While my parents did not reside with me, I was still intimately involved in their daily care for the next 4 and 5 years. Traveling down that rabbit hole of dementia with my parents was difficult and sad. I watched helplessly as this disease steadily and ruthlessly chipped away at their brains, one memory at a time. That said, it was also a time of considerable personal growth for me. I learned to parent my parents with patience and compassion, caring for them much as they had cared for me as a child so many years before. Interspersed with the challenges were times of fleeting lucidity as well as moments of poignant tenderness, which I still remember and cherish, even today. These are moments I would have missed forever, had I not been a family caregiver.
According to the Alzheimer’s Association’s 2015 Facts and Figures, 85 percent of unpaid caregiving help for older adults in the USA is provided by family members. Women make up two thirds of that number, and over half of women caring for people with dementia are taking care of parents.
How many people actually plan on being an unpaid caregiver? Whether it is a spouse, parent or well-loved aunt, it is unlikely that most of us will ever anticipate the reality of wearing the label “caregiver.” As the boomer population continues to age, the number of unsung heroes caring for a family member is on the upswing. According to the report, *Caregiving in the U.S. 2015, there is currently an estimated 34.2 million American adults caring for a loved one 50 years or older.
Caregiving can be overwhelming, both emotionally and physically, bringing with it a myriad of emotions, all of which I experienced at one time or another, including frustration, helplessness, anger, sadness, depression, and guilt. The experience can also be lonely. At times I remember feeling like I was on a deserted island, with nary a person who really understood what it was like.
While speaking at a caregivers meeting recently, two women approached me afterwards to share their stories. One woman told me that her spouse with Alzheimer’s is slowly becoming more than she can handle, but her children are insisting that she keep him at home. The other woman suspects that her elderly father who lives next door to her is showing signs of dementia, but he flatly refuses to go to the doctor. They were both searching for answers. Like growing old, caregiving is not for sissies.
I sensed in these two women what experts label caregiver burnout, a very real phenomenon and the number one reason why it is imperative for all caregivers to recognize the importance of self-care.
If you or someone you know is experiencing the below symptoms, I encourage you to please make time to see a doctor.
More susceptible to illness
*Caregiving in the U.S. 2015 – A Focused Look at Caregivers of Adults Age 50+ was published by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute.
Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. Two watched both their parents’ memories disappear and one is a nurse who was a caregiver for those affected. Another is a granddaughter that was forgotten by her beloved grandpa, and the other is experiencing the disease himself.
For the month of November, the 5 of us have joined together together in recognition of both National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month to acknowledge those family caregivers who are unsung heroes. From each other, we learned that all of us felt compelled to write our books, eager to make a difference…hoping that we might make the pathway for others traveling this road a little less painful and lonely.
Check out this commentary for more information on these great books!
Vicki Tapia, long-time lactation consultant and published author of numerous lactation articles, found her energies redirected to the other end of life when both her parents were diagnosed with dementia in 2004. Her diary documenting their journey resulted in the publication of Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for the High Plains Book Awards. The mother of three grown children and eight grandchildren, Vicki lives with her husband and Mini Schnauzer in South Central Montana.
The McMaster Health Forum, with support from the Labarge Optimal Aging Initiative, recently hosted a public talk to examine the latest research and evidence into risks, prevention and treatment of Alzheimer’s disease. This talk featured presentations by Jay Ingram, one of Canada’s best-known and most popular science personalities, and Dr. Christopher Patterson, an expert on the diagnosis and treatment of dementia.
“My experience is that when you talk to people about Alzheimer’s, they have three questions,” said Ingram. “The first one is always ‘am I going to get it?’ The second is ‘If it looks like I’m likely to get it, what can I do to lower that risk?’ And the third question is ‘if that doesn’t work and I do get it, what are the prospects?’”
Will I get Alzheimer’s?
Early-onset familial Alzheimer’s
“There are two kinds of Alzheimer’s disease – early onset familial Alzheimer’s, which you inherit and is a dominant gene. If you had a parent with this kind of Alzheimer’s, you have a 50/50 chance of getting it yourself,” said Ingram.
But, he cautioned, “That’s so not the norm. There’s really only three genes that have been absolutely identified as early onset familial genes. They represent something less than 1% of all Alzheimer’s.”
Also, not every case of early-onset Alzheimer’s is genetic.
“Yes, there’s a risk but it’s a very tiny risk. For the most part, I think you could set that aside,” said Ingram.
“There’s really only one gene that has been unambiguously associated with late-onset Alzheimer’s (that is 65-70 years old and older),” said Ingram. “It comes in three varieties. One is bad, one is neutral and one is actually beneficial.”
“Let’s say, worst case scenario, I’m carrying two copies of the bad gene called APOE4. The most pessimistic of studies would say that that my risk is now 15-fold greater than it would have been. So you might think I’m terrified, but there are some other facts to consider. About half of the people who have the two bad genes never get Alzheimer’s. Plus, a good percentage doesn’t have those genes and do get it.”
“As far as late-onset, it’s so ambiguous for my money, it’s not worth worrying about.”
What can I do to prevent Alzheimer’s?
“There’s this whole constellation of effects, but when you put them together, I think they boil down to some pretty commonsense things,” said Ingram. “Exercise, watch your weight, watch your blood pressure, engage socially and keep your mind active. These are all sort of commonsense things that one should do in life.”
“Education has been shown to be clearly related to your risk of dementia. The further you go in school, the less likely you are to become demented,” said Ingram. “If you continue on in what is defined as a mentally stimulating job, you’re also better off.”
The single most important thing that older adults can do to prevent dementia is to walk 35 or 40 minutes a day.
“Exercise. Why is that important? Cardiovascular health, the health of your circulatory system and, maybe most importantly, your blood pressure are all risk factors, if they’re in decline, for Alzheimer’s disease,” said Ingram.
“There have been studies that show that it’s not even the kind of activities you do, its the number of them that you engage in and the number of people with whom you engage,” said Ingram.
There is good epidemiological evidence that people who adhere to a Mediterranean-type diet are least likely to develop Alzheimer’s.
People who watch a lot of TV are more likely to become demented.
Obesity and diabetes are risk factors for Alzheimer’s
Does having diabetes increase the risk for Alzheimer’s disease?
“If you have diabetes, your risk of developing dementia is about twice that compared to if you don’t have diabetes. Certainly, management of blood sugar is important. Whether that actually changes the progression of the disease, I don’t think we know but we would suspect that it would because appropriate management delays other vascular complications,” said Dr. Patterson.
Can cognitive exercises help improve brain function?
“The evidence for enhancing your memory by doing those memory exercises is not nearly as solid as the evidence for physical activity,” said Ingram.
“The evidence is that, in earlier stages of cognitive impairment, you see improvements in those domains in which you practice. If you do memory tests, it may not necessarily improve executive function,” said Dr. Patterson.
How does dementia impact the quality of life for caregivers?
Dr. Patterson commented that in a research project, in which he was involved, quality of life did not diminish in individuals over different stages of the disease whereas for caregivers it clearly did.
“While we talk about memory loss so much , the most disturbing change to families is not the memory loss but the change of mood or affect or personality. That’s where people feel they’ve lost the person,” added Ingram.
If I do get Alzheimer’s, what can I do about it?
“Understanding the disease and what’s going to happen to that person overtime is extremely important,” said Dr. Patterson. “Also, learning how to deal with some of the behaviors that may evolve as the disease progresses is by far the most important part of management of individuals with dementia.”
Dr. Patterson highlighted that it is important to recognize “that being a caregiver for an individual with dementia is extremely stressful.”
Case management is a way of supporting families through this journey.
“Of the whole management of individuals with dementia, medications really play the least part.”
“The single medication that is commonly prescribed these days, will stabilize cognition for 9-12 months,” said Ingram. “As the cells generating neurotransmitters die, to a degree, you can replace them chemically. But, the cells are still dying and eventually you can’t make it up chemically.”
Patients may be prescribed medications to help with other symptoms of the disease.
“In the future, there may be medications that can literally interrupt the sequence of the disease,” said Dr. Patterson.
“So what do we do in the meantime? We can do lots of things that make us healthier and happier people. We hope that with increasing general health, reduction of diabetes, and daily exercise slow down the obesity train. That may be, at least in the short-term, the most effective thing we can do,” said Ingram.
The rest of the summary is available here and the video below presents highlights from the event.
Steven Lott is the Senior Lead, Communications for the McMaster Health Forum. He leads the Forum’s communications initiatives including the dissemination of Forum products and information, coordination of public talks, social media engagement, media relations, and website management. Steven has worked with a variety of patient advocates, non-governmental organizations, think tanks, academics and other health system stakeholders in Canada, USA, South America, Europe and Africa to promote strategic health policies.
In an effort to increase awareness for the first annual National Memory Screening Week held Nov. 1-7, Vicki Tapia, author of Somebody Stole My Iron, has joined with four other authors of books about dementia/Alzheimer’s. This article describes the campaign and presents a brief synopsis of their books.
It was the weekend of our family reunion and almost everyone was gathered together at my parent’s condo to celebrate a milestone. Our patriarch, my dad, was turning 90. When the front doorbell rang, Mom opened the door, took one look at her oldest granddaughter and asked in a perplexed tone of voice, “Who are you?” After a moment of silence, we all laughed a little uncomfortably, but brushed it off, rationalizing the comment as a manifestation of Mom’s stress in caring for Dad, who had been diagnosed with Parkinson’s disease. It was not mentioned again.
Our family continued to somehow normalize or overlook the ever-increasing signs that something was not quite right with Mom’s behavior. Another two years passed before she finally agreed to be evaluated by her health care provider, around the same time Dad was diagnosed with Parkinson’s-related dementia. Although by this time, our family wasn’t completely surprised by Mom’s Alzheimer’s diagnosis, we were alarmed to hear she was already considered to be in the “moderate” stage of the disease. I later learned this scenario is typical.
Studies tell us that the delay in diagnosis can be attributed to the family’s own denial in not wanting to face the fact that something is wrong. In retrospect, this could be applied to our family, although in many ways, we were simply clueless in the beginning. Sometimes, a fear of diagnosis can result in reluctance on the part of the affected person to agree to an evaluation, particularly if it involves an adult child prodding an intractable parent. Healthcare costs may also be a factor in avoiding an assessment by a qualified health care provider (HCP). The oft-perceived stigma associated with a potential diagnosis of dementia/Alzheimer’s can be a barrier to evaluation for the entire family.
National Memory Screening Week
In an effort to promote the importance of early detection of memory problems, the Alzheimer’s Foundation of America (AFA) has launched the first annual National Memory Screening week scheduled for Nov. 1-7.
The screenings will be free and confidential, and if deemed necessary, refer people onto appropriate follow-up services. One of the goals of the screening is to work toward eliminating the stigma and fears associated with dementia. The AFA also hopes to alleviate fears for people who participate in the memory screening, but do not show a concerning memory problem.
The scene described in the opening paragraph of this blog post is based on an excerpt from my memoir, Somebody Stole My Iron, which details the daily challenges, turbulent emotions, and many painful decisions involved in caring for my parents. Laced with humor and pathos, reviewers describe my book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s/dementia patient’s family.” I wrote this story to offer hope to others whose lives have been intimately affected by this dreadful disease, and to reassure them that they are not alone.
Four other engaging books about dementia/Alzheimer’s disease that I am pleased to recommend include:
Greg’s story is not about losing someone else to Alzheimer’s, it is about losing himself. Acting on long-term memory and skill, coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. “On Pluto is a book about living with Alzheimer’s, not dying with it.”
Jean’s memoir details her journey caring for both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects of the disease, but a World War II love story held together by faith and family is contained within the pages.
Marianne describes herself as a writer who happens to be a nurse. She writes this work of fiction based upon her care for the elderly. It is a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer’s and Jack becomes her caregiver.
Shannon writes this work of fiction through the eyes of a young girl, perhaps not surprising, as her author bio notes that her own grandfather had Alzheimer’s. In the story, when thirteen-year-old Delia Burns realizes that her elderly neighbor is beginning to forget, she involves the entire town in saving his memories.
Vicki Tapia, long-time lactation consultant and published author of numerous lactation articles, found her energies redirected to the other end of life when both her parents were diagnosed with dementia in 2004. Her diary documenting their journey resulted in the publication of Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for the High Plains Book Awards. The mother of three grown children and eight grandchildren, Vicki lives with her husband and Mini Schnauzer in South Central Montana, USA.
Alzheimer’s is a scary disease. The thought of losing one’s mind while still alive is unsettling and it doesn’t get easier as cognitive and physical decline are closely related. Research has shown that all types of dementia experience mobility decline, even those progressing to Alzheimer’s disease (AD). As dementia progresses, decline in mobility is evident especially as gait and balance become impaired. Alzheimer’s is the 6th leading cause of death in the United States and an estimated 5.4 million Americans currently suffer from AD. Unlike other major diseases, it seems there is little or no solution to preventing or treating Alzheimer’s. HIV, Stroke and Heart disease have decreased significantly in the number of deaths but Alzheimer’s has greatly increased with devastating statistics. Clearly, the US has a crisis on its hands.
“People with Alzheimer’s disease live a long time, but require constant and very expensive care. They are prevented from working due to the debilitating nature of the illness and those who leave the workforce to care for a family member with Alzheimer’s impact economic productivity.”
While strong research investment is important, advocacy is even more crucial as it gets more people interested in putting an end to Alzheimer’s. In the past few years, millennials have also become strong advocates for issues concerning this disease. Organizations such as Hilarity for Charity and The Purple Elephant focus on the millennial generation and some of these organizations are even managed by millennials, a trend that is changing the face of AD. One millennial who is presenting a fresh take on Alzheimer’s is Max Lugavere. This 32-year-old filmmaker is working on a project that explores the impact of diets and lifestyles on brain health in a documentary called Bread Head. The trailer is fascinating especially as Max asks new questions about Alzheimer’s including the possibility of preventing the disease based on the choices we make.
Global Health Aging was pleased to interview Max Lugavere on his documentary as well as why millennials are starting to get interested in aging and health issues affecting older adults. We hope you find the interview informative.
Global Health Aging: BREAD HEAD asks new questions about Alzheimer’s disease. Do you think people can avoid Alzheimer’s even if they are predisposed to it (family history, heredity, etc)? Max Lugavere: One thing is for sure—you can do everything “right” in accordance with the current science, and still get it, the same way that you can wear your seat belt all the time but still end up in a fatal car accident thanks to some fluke of bad luck. Science hasn’t provided us with a silver bullet just yet. HOWEVER, you can also greatly minimize your risk—quite easily in fact. My goal is to make people aware of the fact that Alzheimer’s is only determined by your genes for a VERY small number of cases. Less than 5%. For the rest of us, it’s the interplay between our genes and our lifestyles that determine our chances, for Alzheimer’s and for any number of other ailments. Our health is largely in our control—genes are not destiny!
Global Health Aging: The idea that Alzheimer’s is type 3 diabetes is groundbreaking! How does this change everything we know including the beta amyloid proteins that may cause Alzheimer’s? Max Lugavere: The “type 3 diabetes” moniker is a hypothesis, and diabetes doesn’t cause Alzheimer’s, but it does greatly increase the risk. It does seem that they may be more like cousins, with a similar underlying pathology—meaning the mechanics behind the disease. The thing about type 2 diabetes (a biological disaster which has reached epidemic proportions in the States as well as in India, China, and throughout many emerging economies) is that it’s characterized by decreased sensitivity to insulin, and it’s diagnosed when you have too much blood sugar as a result of your cells not able to use glucose properly. But you can show decreased sensitivity in various organs, places of the body, before crossing the threshold where a full-blown T2D diagnosis is made; your brain being one of them. And this precedes the buildup of the plaques that clog Alzheimer’s brains by decades.
Global Health Aging: In the BREAD HEAD trailer, you pose the question about Alzheimer’s being inevitable or avoidable based on the choices we make. How did you come to exploring this idea? Max Lugavere: I picked Alzheimer’s because it’s the most common form of dementia, but my interest and research goes beyond Alzheimer’s. I am concerned with not only preventing neurodegeneration, which begins in the brain decades before the first symptom, but also optimization. We live in a time where attention is the new limited resource; distraction is constant. It’s sort of like a kind of obesity of the mind. So I think anything we can do to maximize our cognitive health, the better and more enriched our lives will be.
Global Health Aging: Millennials are starting to get interested in aging and health issues affecting older adults. How can this trend affect the way society views aging and older adults? Max Lugavere: I think it’s in part because the oldest millennial is now 35. Unlike previous generations, we were brought up with the tools of the internet. Information has been set free. We’ve also invested in human capital more than any previous generation. So I think we are more proactive about holding onto our health and even optimizing it. We’re the generation, after all, that’s ushering in the quantified self movement. It’s awesome to not only witness but to be a part of.
Global Health Aging: BREAD HEAD is innovative! What would you tell people who think nothing can be done to prevent Alzheimer’s as research has shown? Max Lugavere: I’d tell them they need to get with the times. We’re finally at the end of the era of “diagnose and adios”. That said, we still have a long way to go, so in that sense, it’s imperative to support scientists that are continuing to do this incredibly vital research, both towards a cure and for prevention. It’s also important to look to technologies like my friends at Neurotrack that are devising brilliant ways of early diagnosis, which is key.
Acknowledgements and Further Information
I would like to thank Max Lugavere for taking the time to answer our questions. If you want more information on Max Lugavere, visit his website here.
Sophie Okolo is the Editor-in-Chief of Global Health Aging.
Since the last Presidential Election, the national budget has been a sore spot for Republicans and Democrats, the two major political parties in the U.S. While government programs such as the Affordable Care Act (ACA) are leading debates on reducing the national budget, politicians are oblivious of a looming threat to the budget. People with Alzheimer’s and Parkinson’s diseases require constant and very expensive care. Also, these debilitating illnesses can prevent affected persons from working, which may have a devastating long-term impact on the budget.
Alzheimer’s disease (AD) is the sixth leading cause of death in the U.S. and an estimated 5.4 million Americans currently suffer from AD. If current population trends continue, the number of people with Alzheimer’s disease will increase significantly unless the disease can be effectively treated or prevented. The U.S. population is aging and the risk of Alzheimer’s increases with age. For instance, Alzheimer’s usually begins after age 60 and the number of people with the disease doubles for every five-year interval beyond age 65. About five percent of men and women ages 65 to 74 have Alzheimer’s disease and it is estimated that nearly half of those age 85 and older may have the disease. Parkinson’s disease (PD) is the second most common neurodegenerative disorder after Alzheimer’s disease and affects one million people in the United States. Symptoms of PD include muscle rigidity, tremors, and changes in speech and gait that worsen as the illness progresses over time. PD is more common in the elderly and most often develops after age 50. Sometimes, Parkinson’s disease occurs in younger adults. When a young person is affected with PD, it is usually because of a form of the disease that runs in families.
With strong research investment, heart disease deaths in the U.S. fell by 13 percent in the past decade. Alzheimer’s deaths rose by 68 percent from 2000 to 2010 and continue to increase. The issue is not how, but why we cannot increase our investment in research into fighting these diseases that have a tremendous impact on both the individual and society. Alzheimer’s and Parkinson’s get comparatively less funding than other top diseases because they are more common in the elderly and largely ignored. Stigma is another reason why it is hard to raise money since people with Alzheimer’s and Parkinson’s rarely talk about the disease. Also, Alzheimer’s is different from other diseases because Alzheimer’s patients rarely lead marches to fight for more funding since their memory is impacted. It is important to our nation’s economic future to reduce the deficit, but we cannot ignore the importance of investing in Alzheimer’s and Parkinson’s research. As the nation’s older populations grow, the cost of care for these diseases will rise dramatically. In fact, Alzheimer’s is expected to cost the U.S. more than $1 trillion annually and persons who leave the workforce to care for an affected family member impact economic productivity. Increasing funding for Alzheimer’s and Parkinson’s will require difficult choices and shared sacrifice in spending reductions and increased revenues.
As the U.S. Congress continues to agree or disagree on the best way to fix Medicare, a government health program, the national budget will likely increase if there is no dramatic increased investment in research into fighting Alzheimer’s and Parkinson’s disease. The devastating statistics continue to increase and rising health care costs pose a great problem to the U.S. economy.
Sophie Okolo is the Founder of Global Health Aging.