Social and Financial Costs of Millennial Dementia Caregivers

A report by the Center for Healthcare Innovation.

Abstract

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

  1. Define public policy in supporting family caregivers in providing care.
  2. Address how universities can better support student caregivers.
  3. Companies and employers take the lead in supporting working caregivers.
  4. Caregiver supports begin in communities.
Figure 1. U.S. population 65+ (in millions)

To view the white paper, click here.
To view the best practice, click here.

Advertisements

Interview with Alzheimer’s researcher, blogger, and advocate Maya Gosztyla

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.

Menopausal Experiences Among Major Ethnic Groups in the U.S.

The world’s population is rapidly aging and women make up the majority of seniors in every country due to their higher life expectancy. There will be over 60 million peri- and post-menopausal women in the United States by 2030 and about 1.2 billion throughout the world.

Menopause Experiences in the United States

In the U.S., menopause often begins at the age of 51 with most women experiencing hot flashes and other symptoms like vaginal dryness and joint pain, according to the National Institute on Aging. While most studies have not focused on ethnic populations in the United States, a recent study by the Western Journal of Nursing Research found that certain ethnicities in the U.S. are more prone to menopausal symptoms. The study documented specific ethnic differences in the number and severity of symptoms among four major ethnic groups (Non-Hispanic Whites, Hispanic, African Americans, and Asians) and focused on women ages 40-60 since most women experience menopause around the age of 50.

According to the study, Hispanic women reported night sweats and hot flashes more frequently than non-Hispanic white women, although other symptoms were less common. Hispanic women also reported significantly larger numbers of total symptoms, physical symptoms, and psychosomatic symptoms than Asian women. African American women reported a significantly larger number of psychosomatic symptoms than Asian women, and non-Hispanic white women reported significantly larger numbers of total symptoms, physical symptoms, psychological symptoms, and psychosomatic symptoms than Asian women.

Osteoporosis and Menopause

Osteoporosis is a progressive form of bone loss common among postmenopausal women. About 70 percent of women in the United States have osteoporosis by the age of 80 and about 15 percent of non-Hispanic white women in the country eventually experience an osteoporosis-related hip fracture, according to the John Hopkins Arthritis Center. The development of osteoporosis is associated with lack of estrogen after menopause but hormone replacement therapy has been found to reduce the risk of the disease among women.

Interestingly, research has found that estrogen levels may be one factor that influences the development of osteoporosis in women, although ethnicity and lifestyle might be more important. For instance, 10 percent of Hispanic women over 50 have osteoporosis, according to the California Hispanic Osteoporosis Foundation. There are probably several explanations for the lower osteoporosis rates, aside from genetics. Ultimately, a more labor-intensive lifestyle and diet rich in phytoestrogens help guard against bone loss.

Photo Credit: Pain Pix
                                                               Photo Credit: Pain Pix

Conclusion

Specific differences exist for particular ethnic groups of menopausal women in the U.S. These differences are useful for targeting efforts to promote strategies to reduce menopausal symptoms and make best use of health promotion efforts such as adopting healthy-eating habits and leading an active lifestyle.

Sophie Okolo is the Founder and Editor-in-Chief of Global Health Aging.

Richard Gaines, MD is the President and Chief Medical Officer of HealthGains, a leading hormone optimization center founded in 2005. Dr. Gaines has more than three decades of experience as a healthcare executive and physician with a focus on hormone therapy and platelet rich plasma therapy.

How Social Factors Affect Diabetes Prevalence Among U.S. Hispanic Subgroups

Early this month, Global Health Aging published an article about the dangers of type 2 diabetes among older Hispanics. The focus will now be on the prevalence of this disease among Hispanics including the impact of age, food habits, urbanization and length of stay in the U.S.

Photo Credit: lucianvenutian
                                                    Photo Credit: lucianvenutian

People of Latino and Hispanic descent are at a high risk of type 2 diabetes and related conditions. In the August 2014 issue of Diabetes Care, a study found that the risk varies a great deal among specific subgroups and even based on other factors like how long they have lived in the United States.

According to the study, the prevalence of diabetes (diagnosed and undiagnosed) among Hispanics and Latinos of all groups was 16.9 percent for men and women compared to 10.2 percent for non-Hispanic whites. Prevalence varied a great deal when looking at subgroups. For example, individuals of Mexican descent had the highest prevalence at 18.3 percent while those of South American descent had the lowest prevalence of 10.2 percent. People of Puerto Rican and Dominican descent had a diabetes prevalence of 18.1 percent and those of Central American descent had a rate of 17.7 percent. More than 13 percent of people with Cuban descent had diabetes. This shows a strong correlation between diabetes and people of Hispanic descent in the United States. Many factors are responsible for the diabetes prevalence including unhealthy eating habits.

In the United States, Houston makes a great case study because of the city’s makeup and close location to Mexico and the Deep South. David Napier of University College London (UCL) states that “People used food as not only a reinforcement of tradition and ritual but also as a way of connecting socially. You’ve moved here from somewhere else, it’s a way to reinforce your identity, it’s a real cultural asset to have, but in a biological sense it’s not the best thing.” Nutrition is complex when tackling diabetes or obesity in Hispanic subgroups. This is why a flexible and targeted approach about healthy eating is necessary for fighting these conditions. Ultimately, the goal is not to get rid of traditional foods, but to find ways to make those foods healthier or introduce better options.

Other factors contributing to the diabetes prevalence include age, urbanization and length of stay in the U.S. The study published by Diabetes Care stated that diabetes rates increased significantly with age to 50 percent among Hispanic and Latino women by the age of 70 and 44 percent for men between ages 70 and 74. The study also reported that the longer someone lived in the U.S., the more likely they were to develop type 2 diabetes. Moreover, urban areas of Venezuela, Chile and Argentina are experiencing rising diabetes rates partly to traffic, crowded living conditions, air pollution, and a more sedentary lifestyle, according to a report by the Center for Strategic and International Studies.

Type 2 diabetes is a serious global concern. Society needs to tackle the disease on all fronts because the consequences can be fatal. It is important to raise awareness of the complications and hope that medical professionals find new ways to reduce the burden of diabetes.

Sophie Okolo is the Founder and Editor-in-Chief of Global Health Aging.

Parul Patel, DPM is the lead physician of Infinity Foot and Ankle, a podiatry practice with three locations in Texas. She has more than 11 years of experience in podiatric medicine. Dr. Patel specializes in podiatric care such as diabetic podiatry, preventative care and surgical podiatry.

The Dangers of Type 2 Diabetes among Older Hispanics

Photo Credit: Pixabay
Photo Credit: Pixabay

Diabetes is a 5th leading cause of death among Hispanics and Latinos in the USA. Hispanics are 66 percent more likely to be diagnosed with diabetes compared to non-Hispanic whites and they have a 1.4 times greater risk of developing chronic kidney disease due to diabetes, according to the National Kidney Foundation. Moreover, there is currently an epidemic of diabetes among Hispanics and Latinos not only in the United States but also in Central America.

The Dangers of Type 2 Diabetes

Type 2 diabetes carries a number of dangers. While it may be easy to ignore, the disease affects the blood vessels, nerves, heart, kidneys and eyes. Complications of diabetes can eventually become life-threatening or disabling regardless of race. In fact, several studies have found that Hispanics and Latinos are at a greater risk of two of the most serious risks of diabetes: end-stage renal disease and foot amputation. Most cases of end-stage renal disease (ESRD) are caused by diabetes and these cases are on the rise throughout Central and South America, according to a study published in the Clinical Kidney Journal. The study reported that the highest incidence of diabetes-caused ESRD was found in Mexico and Colombia.

Research has found that Hispanics and Latinos are also at a higher risk of foot damage due to diabetes than non-Hispanic whites. Diabetes can lead to nerve damage in the feet and poor blood flow which raises the risk of a host of foot complications. In severe cases, toe, foot, or even leg amputation may be necessary. Diabetes is the leading cause of foot and leg amputations in the United States and Mexico. Between 2001 and 2004, the hospitalization rate for diabetes-related amputation among Hispanics and Latinos increased to 80 per 100,000 compared to roughly 28-31 per 100,000 for non-Hispanic whites.

Diabetics in developing countries are twice as likely to develop foot ulcers and require amputation than those in developed countries. In South and Central America, about 1.25 million diabetics undergo foot amputation. This number is expected to rise to 2.5 million by 2030, according to the International Diabetes Federation.

A great deal of the disparity is attributed to lack of health care and screening. Just 38 percent of adult Hispanics over the age of 40 with diabetes received the recommended annual foot, eye and blood sugar screenings compared to 47 percent for whites and blacks in the U.S. Hispanics were also 3.6 times more likely than non-Hispanic whites to be hospitalized for uncontrolled diabetes and 2.9 times more likely to be hospitalized for foot or leg amputation due to diabetes.

Controlling Type 2 Diabetes

Diabetes can develop at any age but it is most often diagnosed in middle-aged and older people. Screening for type 2 diabetes is especially important after the age of 40. Therefore, it is important to note that while diabetes complications can be very serious, they are avoidable. The best way to avoid serious foot problems, including gangrene and amputation, is by receiving regular diabetic foot care and maintaining a healthy blood sugar level. Seeking the care of a knowledgeable foot and ankle doctor should also be top priority for all diabetic patients to avoid potentially life-threatening complications that may seem benign at first.

Parul Patel, DPM is the lead physician of Infinity Foot and Ankle, a podiatry practice with three locations in Texas. She has more than 11 years of experience in podiatric medicine and specializes in podiatric care such as diabetic podiatry, preventative care and surgical podiatry.

The Hidden Health Crisis of Alzheimer’s Disease Among Older Adults

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.

Photo Credit: Pixabay
Photo Credit: Pixabay

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.

The rest of the article, including the state of Alzheimer’s disease, is available on Rivier University Online.

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.

12 Ways to Reach Out to Caregivers During National Caregivers Appreciation Month

Photo Credit: Marianne Scuccio
Photo Credit: Marianne Sciucco

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.

  1. 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.
  2. Going to the grocery store? Call and ask if there is anything you can pick up for them.
  3. 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.
  4. Volunteer to mow the lawn, weed the garden, rake the leaves, or shovel the snow.
  5. Share the bounty, whether from your vegetable or your flower garden. Fresh produce and fresh flowers are cheerful.
  6. If you have the skills and tools, offer to change the oil in their car and rotate the tires.
  7. Again, if you have the skills and tools, offer a free haircut to the caregiver and/or their loved one.
  8. Walk their dog.
  9. Ask if they would like you to wash and clean out their car.
  10. Volunteer to take out the trash and bring the barrels out to the curb on trash day.
  11. Double cook a meal, preferably one of their favorites, and send over a dinner.
  12. 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.

Family Caregivers: The Unsung Heroes of Society

Photo Credit: Vicki Tapia
Photo Credit: Vicki Tapia

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.

  • Anxiety
  • Irritability
  • Social withdrawal
  • Sleeplessness
  • Exhaustion
  • Poor concentration
  • 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 Science of Alzheimer’s: Where Are We Going?

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?’”

Jay Ingram
Photo Credit: McMaster Health Forum

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.

Late-onset Alzheimer’s

“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

“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.”

Exercise

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.

Be social

“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.

Other factors

  • 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?

Education 

“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.”

Support

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.

Medications

“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.

Who Are You? Where Am I?

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.

Photo Credit: City of Overland Park

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.

For more information about the screening (date, time) and a list of participating sites, visit National Memory Screening.

Who should consider having a memory screening?

  • Anyone concerned about memory loss or experiencing any of the warning signs of dementia.
  • Anyone who feels they are at risk due to a family history of Alzheimer’s disease or another type of dementia.
  • Anyone who wants a baseline evaluation of their memory for future comparisons, even though they do not have a current concern.

If you or a loved one answer “yes” to any of the following questions provided by the AFA, it may be prudent to participate in the free memory screening.

  • Are you becoming more forgetful?
  • Do you have any trouble concentrating?
  • Do you have difficulty when performing familiar tasks?
  • Do you have trouble recalling names or words during conversation?
  • Do you sometimes forget where you are going or where you are?
  • Have friends or family told you that you are saying the same thing over and over or repeating questions?
  • Do you often misplace things?
  • Have you become lost when driving to a familiar place or walking in your neighborhood?
  • Have your family or friends told you they have noticed changes in your behavior, moods, personality, or desire to engage socially?

For more information, visit Information for Participating Sites on the National Memory Screening website.



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:

 

On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

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.” 

Alzheimer’s Daughter by Jean Lee

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.

Blue Hydrangeas by Marianne Sciucco

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.

What Flowers Remember by Shannon Wiersbitzky

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.