Illustrations by Diego Sabogal
Alzheimer’s disease is the most common cause of dementia. It progressively impacts a person’s memory, judgement, language, and independence. Once a family’s hidden burden, Alzheimer’s is now becoming a dominant public health concern. Its numbers have grown and will continue to at an alarming rate as millions more Americans age into the disease and a cure remains out of reach.
There are currently 5.7 million Americans and 47 million people worldwide living with Alzheimer’s. That’s expected to increase by 116 percent in high-income countries between 2015 and 2050, and as much as 264 percent in lower-middle and low-income countries during that time period.
Alzheimer’s is the costliest disease in the United States. Its annual raw expense is more than $270 billion but the toll it takes on patients and caregivers alike is incalculable. A substantial reason that Alzheimer’s doesn’t cost more is thanks to the 16.1 million unpaid caregivers who’ve taken on the management of their loved ones’ disease. This selfless task saves the nation more than $232 billion annually.
One in every 10 Americans aged 65 or older is living with Alzheimer’s disease or related dementia. Two-thirds of those affected are women. The average life span after diagnosis for someone with Alzheimer’s is 4 to 8 years. However, depending on several factors, this could be as long as 20 years. As the disease progresses, each day presents more challenges, expenses, and strain on caregivers. These primary or secondary caregivers often take on the role for reasons that range from duty to cost.
Healthline set out to better understand caregivers — how Alzheimer’s has impacted their lives and the promising developments on the horizon that could change the Alzheimer’s landscape. We conducted a survey of nearly 400 active caregivers representing millennials, Generation X, and baby boomers. We interviewed a dynamic group of medical and care experts to best understand the constraints, needs, and unspoken truths of living with and caring for someone with Alzheimer’s disease.
All statistics presented without a source are taken from Healthline’s original survey data.
The overwhelming truth about Alzheimer’s is that a majority of caregiving falls to women. Whether they see it as a privilege, a burden, or a necessity, two-thirds of the primary unpaid caregivers of those with Alzheimer’s are female. More than one-third of these women are the daughters of those they care for. Among millennials, female grandchildren are more likely to assume the role of caregiver. In general, caregivers are spouses and the adult children of those they care for more than any other relation.
“It’s as if women are expected by society to be the caregivers,” says Diane Ty, Project Director of the Global Social Enterprise Initiative and AgingWell Hub at Georgetown University’s McDonough School of Business. She points out that since many women have previously taken on the role as primary caregiver to children, their siblings or other family members often assume they’ll take the lead in Alzheimer’s care.
That’s not to say that men aren’t involved. Professional caregivers are quick to point out that they see plenty of sons and husbands taking on this work, too.
Overall, the majority of caregivers are sacrificing their own health, finances, and family dynamic for the sake of their loved ones. Nearly three-quarters of caregivers reported that their own health has declined since taking on care responsibilities, and one-third have to miss their own doctor’s appointments to manage care of their loved one. Gen X caregivers experience the greatest negative health effects. Overall, though, caregivers are a stressed-out group, with 60 percent experiencing anxiety or depression. Imagine the difficulty in caring for another person so fully when your own mind and body are in desperate need of care.
If there’s a silver lining, the intimate view of a loved one aging with Alzheimer’s is prompting more caregivers (34 percent) to be tested earlier for the disease’s biomarkers, something millennials are more proactive about than older generations. Having seen the impact of the disease, they’re more willing to take steps to prevent or delay the disease. Experts encourage this behavior as it can have a major impact on the onset and progression of Alzheimer’s.
In fact, new research proposes a switch from the established general diagnostic criteria to instead focus on identifying and treating the disease preimpact, which allows for better understanding and treatment. In other words, rather than diagnosing Alzheimer’s at the stage when dementia is noticeable, future work may focus on asymptomatic Alzheimer’s changes in the brain. While these advancements are promising, the approach is only intended for research right now, but could have massive impact if adapted in general treatment for preventive measures. This could allow researchers and clinicians to see Alzheimer’s-related changes in the brain 15 to 20 years before we currently diagnose Alzheimer’s. This is significant because detecting changes sooner could potentially help identify and guide early-stage intervention points.
For every impact caregivers feel in their own health, there’s a financial repercussion to match. One of every two caregivers report that their finances or career have been negatively affected by their responsibilities, reducing current funds and limiting retirement contributions.
“I’ve talked to family members who were making choices that were severely damaging their future financial independence in order to do what their family was asking of them today with regard to caregiving,” remarks Ruth Drew, director of information and support services for the Alzheimer's Association.
The gross majority of caregivers are married with children living in their homes and hold full- or part-time jobs. It shouldn’t be assumed that caregivers were naturally available because they didn’t have anything else going on. To the contrary, these are individuals with full lives who take on one of the greatest feats. They often do so with grace, fortitude, and not a lot of support.
In addition to the bulk of at-home care, these individuals lead the charge on initiating medical evaluations and making key decisions about the financial, medical, legal, and overall well-being of those for whom they provide care. This includes making the call to keep 75 percent of those with dementia at home — either in the patient’s own home or the caregiver’s home.
- 71 percent of caregivers are female.
- 55 percent of caregivers are a daughter or son, or daughter-in-law or son-in law.
- 97 percent of millennial and Gen X caregivers have children (18 years and younger) living in their home.
- 75 percent of those with Alzheimer’s or related dementia remain home or in a private residence despite the disease’s progression.
- 59 percent of those with Alzheimer’s or related dementia say a cognition-related event (e.g., memory loss, confusion, impaired thinking) triggered a medical visit/evaluation.
- 72 percent of caregivers say their health has worsened since becoming caregivers.
- 59 percent of caregivers experience depression or anxiety.
- 42 percent of caregivers use in-person support groups, online communities, and forums.
- 50 percent of caregivers have had their career and finances impacted due to caregiving responsibilities.
- 44 percent of caregivers have difficulty saving for retirement.
- 34 percent of caregivers say caring for a loved one with Alzheimer’s disease has prompted them to test for the gene.
- 63 percent of caregivers would take medication to delay the onset of memory loss by at least 6 months if it were affordable and free of side effects.
The day a caregiver starts to notice red flags in a loved one’s behavior and speech, their lives change and an uncertain future sets in. It’s not a transition to “new normal” either. In every moment with someone with Alzheimer’s, it’s unclear what will happen or what they will need next. Caregiving comes with a substantial amount of emotional, financial, and physical hardship, especially as the person with Alzheimer’s progresses through the disease.
Caring for someone with Alzheimer’s is a full-time job. Among family caregivers, 57 percent provide care for at least four years and 63 percent anticipate that responsibility for the next five years — all with a disease that can last up to 20 years. So who’s carrying that burden?
Two-thirds of all unpaid caregivers are women, and one-third of those are daughters.
There are 16.1 million unpaid caregivers in the United States. Generationally, adult children are the most common primary caregivers. This is especially true among Gen X and baby boomers. However, in baby boomers, 26 percent of primary caregivers are the spouses of those with Alzheimer’s and millennial grandchildren act as primary caregivers 39 percent of the time.
These caregivers collectively provide more than 18 billion hours of unpaid care each year. This care is valued at a relief of $232 billion for the nation. That equates to an average of 36 hours per week per caregiver, effectively creating a second full-time job that comes with no salary, benefits, or generally, any time off.
That role includes virtually anything the patient needs in their daily life — less at first, as both patient and caregiver are able to navigate daily tasks normally — and it progressively evolves into a full-time care position during the late stages of Alzheimer’s. A short list of the tasks performed by a primary caregiver include:
- medication administration and tracking
- emotional support
- scheduling appointments
- paying bills
- managing finances
- estate planning
- legal decisions
- managing insurance
- living with the patient or making residence decisions
Life doesn’t slow down for these caregivers until they’re able to return to the point where they left off. Other aspects of their lives speed ahead and they try to keep up as if nothing’s changed. Alzheimer’s caregivers are typically married, have children living in their home, and hold a full- or part-time job outside the care they provide.
One-fourth of female caregivers are part of the “sandwich generation,” which means they’re raising their own children while acting as primary caregiver for their parents.
Diane Ty says “club-sandwich generation” is a more apt description as it accounts for their work obligations, too. On a positive note, according to one study, 63 percent of these women say they felt stronger because of this dual-capacity role.
“We know that for the sandwich generation, there are a lot of women who are in their 40s and 50s, balancing careers, caring for an elderly parent or family member, and caring for young children at home or paying for college. This takes an enormous toll on them,” says Drew.
Assuming this role of primary caregiver isn’t always a willing choice as much as it is a necessity. Sometimes, acceptance of that role is a call of duty, as Diane Ty describes it. For other families, it’s a matter of affordability.
Caregiving for someone living with Alzheimer’s or related dementia is a harrowing ordeal. These individuals experience loneliness, grief, isolation, guilt, and burnout. It’s no wonder 59 percent report having anxiety and depression. In the process of caring for a loved one, these caregivers often experience declines in their own health from the strain and pressure or simply not having the time to attend to their own needs.
“Often, there’s a lot of caregiver burnout, especially toward the latter part of the illness when the patient starts to not remember their loved ones,” explains Dr. Nikhil Palekar, associate professor of psychiatry and medical director at Stony Brook University Hospital and director of geriatric psychiatry service and medical director for the Stony Brook Center of Excellence for Alzheimer’s Disease. “I think that’s particularly challenging to the caregivers, when their mom or dad isn’t able to recognize them anymore or recognize the grandkids. That becomes very emotionally intense.”
Caregivers: A Quick Glance
- Nearly half of caregivers (~45 percent) earn $50k – $99k per year
- About 36 percent earn less than $49k per year
- Most caregivers are married
- Most caregivers have children ages 7 – 17 in their home; this is highest for Gen X (71 percent)
- 42 percent of all caregivers experience issues with demands on parenting
- Caregivers provide an average of 36 hours per week of unpaid care
What is this disease that steals people’s lives and has evaded effective treatments? Alzheimer’s disease is a progressive brain disorder that impacts memory, thinking and language skills, and the ability to carry out simple tasks. It’s also the sixth leading cause of death in the United States, and the only disease in the 10 leading causes of death in the United States that can’t be prevented, slowed, or cured.
Alzheimer’s isn’t a normal part of aging. The cognitive decline is much more severe than an average forgetful grandparent. Alzheimer’s interferes with and impedes daily life. Memories as simple as loved ones' names, their home address, or how to dress on a cold day are gradually lost. The disease slowly progresses to cause a breakdown in judgment and physical abilities like feeding oneself, walking, speaking, sitting up, and even swallowing.
“You can’t even imagine that it’s just going to keep getting worse until that loved one passes,” says Ty. “Alzheimer’s is particularly cruel.”
The symptoms at each stage and the rate of decline of those with Alzheimer’s is as varied as the patients themselves. There’s no global standardization for staging, as each person shares a body of symptoms that progress and present in their own way and time. This makes the disease unpredictable for caregivers. It also adds to the feelings of isolation that many caregivers have because it’s difficult to relate one experience to another.
“If you’ve seen one person with memory loss, you’ve seen one,” Connie Hill-Johnson reminds her clients at Visiting Angels, a professional caregiving service that works with people with Alzheimer’s or related dementia. This is an individual disease. The Alzheimer’s Association urges caregivers to view care techniques as person-centric.
Alzheimer’s primarily affects adults age 65 or older, with the average age of patients in this survey being 78. Other related dementias may more commonly affect younger people. Life expectancy after diagnosis varies but can be as little as 4 years or as long as 20 years. This is affected by age, progression of the disease, and other health factors at the time of diagnosis.
The disease is the most expensive in the United States and can be more so for persons of color. Medicare payments for African-Americans with dementia are 45 percent higher than those for white people and 37 percent higher for Hispanic people than white people. The racial disparity of Alzheimer’s extends beyond financials. Older African-Americans are twice as likely to have Alzheimer’s or related dementia as older white people; older Hispanic people are 1.5 times as likely to have Alzheimer’s or related dementia as older white people. African-Americans make up over 20 percent of those with the disease, but only represent 3 to 5 percent of those in trials.
Education background has been linked to the likelihood of developing Alzheimer’s disease. Those with the lowest education levels spend three to four times as much of their lives with dementia as those who have college degrees.
After age 65:
- Those with a high school diploma can expect to live 70 percent of their remaining life with good cognition.
- Those with a college degree or higher can expect to live 80 percent of their remaining life with good cognition.
- Those without a high school education can expect to live 50 percent of their remaining life with good cognition.
Women are also subject to an increased risk for developing Alzheimer’s. This increased risk has been linked to the decrease in estrogen that occurs during menopause among other factors. Evidence suggests that this risk to women may be alleviated by taking hormone replacement therapies before menopause, but the therapies themselves increase the risk of potentially life-threatening complications. In addition, research suggests that a diet rich in estrogen-producing foods such as flax and sesame seeds, apricots, carrots, kale, celery, yams, olives, olive oil, and chickpeas may mitigate risk.
Women are disproportionately affected by this disease, both as patient and caregiver. They develop Alzheimer’s more often than men and they care for those with the disease more often than men. But nearly all caregivers experience an impact on their emotional, physical, or financial health.
A concerning 72 percent of caregivers indicated that their health has worsened to some degree since assuming caregiving responsibilities.
“Their health is worse as a result of the stress involved with caregiving, and they suffer disproportionately from stress and depression,” says Ty, who cites the instability and lack of road map in Alzheimer’s progression as the reason.
In our survey, 59 percent of caregivers said they’ve dealt with anxiety or depression since assuming their duties. These can be a catalyst for many other health concerns, such as a weakened immune system, headaches, high blood pressure, and post-traumatic stress disorder.
The stress and chaos of caregiving doesn’t break down only caregivers’ health, it impacts other areas of their life, too. Thirty-two percent of survey respondents expressed that the relationship with their spouse is strained, and 42 percent said their own parent-child relationship is strained.
When you’re racing between all of your obligations at home, at work, and with who you’re caring for while trying to make sure no one’s needs are overlooked, your own needs can fall by the wayside.
“You’re sitting on the death and decline of your parent or loved one, and it’s a very emotionally stressful time,” describes Ty.
The cost of this strain isn’t just seen in caregivers’ exhaustion and wellness, but in their wallets, too. Spousal caregivers of those with Alzheimer’s spend $12,000 more annually on their own healthcare, while adult children caregivers spent about $4,800 more per year.
Enough can’t be said about the benefits and necessity of self-care during these times. The “airplane oxygen mask” analogy rings true for caregiving. While their own health should be as important as the health of those they’re caring for, 44 percent of caregivers report that they haven’t maintained a healthy lifestyle, including diet, exercise, and socializing.
Understandably, for a caregiver to add their own health to their endless to-do list can feel like more trouble than it’s worth. But even minor self-care efforts can reduce stress, help stave off illness and disease, and improve an overall sense of well-being. To relieve stress and begin to care for themselves, caregivers should try to:
- Accept offers of help from friends and family in order to get breaks. Use the time to take a walk, hit the gym, play with kids, or take a nap or shower.
- Exercise at home while the person they care for is napping. Do simple yoga stretches or ride a stationary bike.
- Find solace in a hobby, such as drawing, reading, painting, or knitting.
- Eat healthful, balanced foods to sustain energy and strengthen their body and mind.
Alzheimer’s caregivers often give their heart and soul over to this work. They’re exhausted and sacrifice time with their own families. Caregiving can have detrimental effects on their health and their personal finances can take a direct hit, too.
An astounding 1 of every 2 caregivers has seen their career or finances negatively impacted by the time and energy their care requires. These aren’t minor inconveniences like leaving early once in a while: Most caregivers say they’ve quit a full- or part-time job entirely. Others had to reduce their hours or take a different job that provided more flexibility.
Diane Ty describes the “financial double whammy” that’s all too familiar to these unpaid caregivers.
- They’ve quit a job and lose an entire personal revenue stream. Sometimes a spouse can pick up the slack but that’s not always enough.
- Their standard income is lost and they’re also not contributing to their 401(k).
- They’ve lost an employer matching their retirement savings.
- They aren’t contributing to their Social Security, ultimately reducing total overall lifetime contributions.
Caregivers will pay for these sacrifices again when they reach retirement.
On top of all of this, Alzheimer’s unpaid caregivers pay an average of $5,000 to $12,000 per year out-of-pocket toward their loved one’s care and needs. Ty says that number can reach as high as $100,000. In fact, 78 percent of unpaid caregivers are incurring out-of-pocket expenses that average almost $7,000 per year.
The extremely high costs of Alzheimer’s care, especially for paid caregiving, is one of the biggest motivators for families to assume responsibility themselves. It’s a double-edged sword: They’re bound to take the financial hit on one side or the other.
The day-to-day care and management of someone with Alzheimer’s is overwhelming at best and downright defeating at worst. What can come on gradually in the early stages with simple needs like grocery shopping or paying bills sometimes swiftly becomes a 24/7, full-time job.
Only half of active, unpaid caregivers say they receive adequate emotional support, and that number is lowest amongst millennial caregivers at 37 percent. What’s more, just 57 percent of primary caregivers say they receive assistance, paid or unpaid, with the care of their loved one, and baby boomers are most likely to report that they don’t receive any help at all. It’s no wonder the rates of anxiety and depression are so steep for caregivers.
“You can’t do this alone. You can’t carry that burden alone, particularly if you’ve made the decision to keep your loved one at home,” encourages Hill-Johnson.
For people who don’t have a personal network to lean on or who can’t afford paid aid services, there may be some local nonprofits that can help.
Our survey found that about half of caregivers have joined some kind of support group. Millennials are most likely to do so, and about half of Gen X had. Baby boomers were least likely. Millennials and Gen X both share a preference for online support groups, such as a private Facebook group or other online forum. Even in this digital age, 42 percent of caregivers still attend in-person support groups. Primary drivers for joining include:
- learning coping strategies
- understanding what to expect from the disease
- gaining emotional support and inspiration
- garnering support for critical decisions
There’s no shortage of support groups available to suit Alzheimer’s caregivers’ own style and needs.
- Peer- and professional-led groups can be located by ZIP code at the Alzheimer's Association.
- Searching for “Alzheimer’s support” on Facebook returns dozens of private social groups.
- Newsletters, social channels, and other resources are available at Caregiver.org.
- Message boards at AARP connect caregivers online.
- Ask a doctor, church, or caregiving service for recommendations in local areas.
Human connection and empathy aren’t the only resources available to caregivers to ease the chaos. Lynette Whiteman, executive director of Caregiver Volunteers of Central Jersey, which provides respite to Alzheimer's disease family caregivers through in-home volunteers, says there are exciting things on the tech horizon that make patient monitoring, medication disbursement, and household management a lot easier. Most caregivers admit to using some form of technology to help assist with the care of their loved one, and many report interest in using more tech in the future. Currently, the tools caregivers use or have used most are:
- automatic bill pay (60 percent)
- digital blood pressure monitor (62 percent)
- online calendar (44 percent)
Interest is highest in new tech for:
- GPS trackers (38 percent)
- telemedicine and telehealth (37 percent)
- Personal Emergency Response System/Life Alert (36 percent)
Using tech to improve quality of care is an effective strategy that allows those with Alzheimer’s to act independently and makes caregiving less intensive. These technologies include the use of a wireless doorbell system with visual cues and portable computers with visual and audio cues to keep those being cared for focused. However, the relevance of this improvement was subjective to a personal level.
The use of apps, websites, and other tech resources is heavily tied to generation, with millennials being the highest adopters and baby boomers the lowest. However, most older adults, even those receiving care, are more willing to learn how to use new technology than younger generations might assume. Gen Xers are unique in that they come from the pretechnological world yet are still young enough to be proficient adopters.
That’s not true just for caregivers. Half of older adults in care use smartphones or other devices to send and receive text messages, and 46 percent send and receive email, and take, send, and receive photos.
Hill-Johnson advocates the use of iPads with those in care. “It’s very beneficial, particularly for those who have grandchildren. You can use an iPad and Skype because they love seeing the grandkids.” An iPad is also ideal for tracking care plans and keeping notes or communicating between family, physicians, aides, and other pertinent parties.
Palekar says there’s a lot of new technology being used to help both caregivers and those receiving care. Some of the things he’s most excited to see and recommend include:
- GPS trackers than can be attached to clothing or worn as a watch that give a patient’s exact location
- home monitoring tools that are sensor-based, e.g., can signal if the patient hasn’t left the bathroom for a period of time
- Mayo Health Manager to track appointments, health records, and insurance in one place
- smartphone apps that provide tips and advice, manage information and communication, log symptoms and behaviors, track medication, and facilitate journaling
Alzheimer’s disease itself is somewhat predictable, with a fairly certain progression through seven distinct stages. What’s less predictable is each individual’s response to the changes in cognitive and physical ability, and what the caregiver’s responsibility will be at each stage. No two people with Alzheimer’s are alike, adding pressure and uncertainty to an already confusing scenario.
Palekar spends a lot of time educating the caregivers of his patients about the disease and provides some insight as to what other caregivers can garner from their loved one’s physicians. He suggests it’s not enough to know the stages of the disease, but that caregivers need to be able to align some expectation with each stage, like when they should anticipate helping with showers, changing clothes, or feeding. All of this education and background becomes vital for caregivers to properly manage aggression, agitation, and other uncooperative behaviors.
“Depending on where your loved one is in the disease process, be mindful of the fact that dementia is a disease,” reminds Hill-Johnson. “You need to constantly tell yourself that whatever behaviors you see exhibited are likely a result of the disease.”
Alzheimer’s is typically diagnosed in stage 4, when symptoms are more conspicuous. In most cases, it can take up to a year to receive a diagnosis, but at least half of cases get there in less than six months.
While the disease can’t be stopped or reversed, the sooner a patient begins treatment the sooner they may slow progression. This also allows for more time to organize and plan for care. Almost half of patients seek their first medical evaluation at the insistence of the future caregiver, and this often comes after a series of indicators like repeating oneself and ongoing forgetfulness. One in four seek medical evaluation after only the first incident of its kind, something millennials prompt more than any other generation. While the stereotype suggests millennials are generally more disconnected, they’re actually the ones who are more likely to sound the alarm.
The primary trigger for someone with Alzheimer’s that led to a medical visit or evaluation was:
- 59 percent had an ongoing memory issue, confusion, or impaired cognition or thinking.
- 16 percent had an ongoing behavioral issue such as delusions, aggression, or agitation.
- 16 percent had other issues like wandering and getting lost, incident with a vehicle, or impaired basic activities like getting dressed or managing money.
It’s here at diagnosis that experts urge caregivers and patients to communicate openly about wishes regarding treatment, care, and end-of-life decisions.
“I strongly advise caregivers, when a loved one is early in the disease, to sit down and talk with them about what their wishes are while they’re still able to have that conversation,” recommends Whitman. “It’s heartbreaking when you let that opportunity go and have to make decisions for the person without their input.”
By the time most patients receive a diagnosis, there’s already an urgent need for help with day-to-day tasks like grocery shopping, paying bills, and managing their calendar and transportation. With each progression of the disease, the level of involvement and attention from the caregiver increases as well.
Alzheimer’s Stages: Patient Needs and Demands on Caregivers
|Stage 1 Very Early||No symptoms. Preclinical/no impairment. Based on history or biomarkers, could have early diagnosis.||Patient is fully independent. No work at this stage.|
|Stage 2 Early||Mild symptoms present, forgetfulness around names, words, where things have been placed. Memory issues are minor and may not be noticed.||May support and advocate for medical evaluation. Otherwise no interference with the patient’s daily work and social life.|
|Stage 3 Mid Up to 7 years||Symptoms of reduced memory and concentration, and more trouble learning new information. Mental impairment may interfere with work quality and become more noticeable to close friends and family. Possible mild to severe anxiety and depression.||Patient may need support with counseling or therapy. Caregiver may begin taking on smaller tasks to support patient.|
|Stage 4 Mid Up to 2 years||Diagnosis typically occurs here with mild to moderate Alzheimer’s dementia. Symptoms including memory loss, trouble managing finances and medications, and questionable judgment noticeable to casual acquaintances and sometimes strangers. There’s clear impact on day-to-day functioning, accompanied by mood changes, withdrawal, and decreased emotional response.||Significantly more time is required of the caregiver. Tasks include taking on scheduling medical appointments, transportation, grocery shopping, paying bills, and ordering food on the patient’s behalf.|
|Stage 5 Mid Up to 1.5 years||Moderate to severe impairment in memory, judgment, and often language. May experience anger, suspicion, confusion, and disorientation. May get lost, not recognize family members, or know how to dress for the weather.||Requires almost full-time supervision or help from a caregiver. Patient can no longer live independently and needs help with simply daily tasks like getting dressed, preparing food, and all finances.|
|Stage 6 Late Up to 2.5 years||Significant impairment in short- and long-term memory, and difficulties in dressing and toileting without help. Easily gets confused and frustrated and says little unless directly addressed.||Requires full-time care and help with all daily tasks, as well as all personal care, hygiene, and toilet use. Patient may not sleep well, may wander off.|
|Stage 7 Late 1-3 years||Most severe and final stage of the disease. Patients progressively lose speech, down to a few words until they are unable to speak. Can have a total loss of muscle control, inability to sit up or hold up head on their own.||Full-time care and attention to every need and all daily tasks. Patient may not be able to communicate, have control over their motion or bodily functions. Patient may not have any environmental response.|
Of the top 10 leading causes of death, Alzheimer’s is the only one that cannot be prevented, slowed, or cured.
The Food and Drug Administration recently removed dual-endpoint requirement for clinical trials, opening the door for more research into Alzheimer’s and its treatment. In addition to a shift in regulation, scientists are looking to research Alzheimer’s and its identification with biomarkers rather than waiting for symptoms to appear. Not only is this strategy promising for treatment and early detection, but it also stands to teach scientists more about how Alzheimer’s develops and exists within the brain. Scientists are currently using spinal taps and brain scans in the research setting to explore these early indicators.
“We don’t know anything that can prevent Alzheimer’s, but we’re looking at the things that might reduce your risk for cognitive decline,” says Mike Lynch, director of media engagement at the Alzheimer’s Association. The organization is funding a $20 million study that starts later in 2018. The two-year trial is aimed at better understanding what effect healthy lifestyle interventions have on cognitive function.
That’s promising news for familial caregivers, who run a 3.5 times greater risk for having Alzheimer’s if their parent or sibling has the disease. Sixty-four percent say they’ve already made healthy lifestyle modifications in an effort to prevent their own memory loss, making meaningful edits to their diet and exercise. Not only may these changes potentially stave off or prevent the disease, but they may improve overall short-term sense of well-being and energy for caregivers.
According to Dr. Richard Hodes, director of the National Institute on Aging, high blood pressure, obesity, and inactivity are associated with an increased risk for Alzheimer’s. Addressing these health factors can help to mitigate the controllable risk for Alzheimer’s disease.
However, a study found that combating chronic disease, such as diabetes and hypertension, in elderly adults will increase the risk for acquiring dementia. In addition, there’s evidence that the correlation between exercise and a decreased risk for Alzheimer’s is insufficient. At best, research found only a delay in cognitive decline. There’s also been general doubt within the scientific community that exercise is beneficial to the brain in ways that were previously suspected.
Millennials appear to be leading the charge on other proactive approaches, with more caregivers making healthy lifestyle changes and seeking testing for the Alzheimer’s gene. They’re also more likely to take medications that delay the onset of memory loss if there’s a need, compared with only 36 percent of Gen Xers and 17 percent of baby boomers.
“Early diagnosis might help us develop new targets that can then focus on preventing the progression of the illness,” explains Palekar. At this time, every medication that’s been tested for Alzheimer’s prevention has failed in stage three of the trials, which he marks as a major setback for the field.
It’s important to note that the research being done isn’t perfect. Some medications are failing to translate to the general population, proving themselves to be successful. The biotech company Alzheon was making promising progress toward Alzheimer’s treatment, reporting positive success in 2016. But it’s since failed to meet benchmarks and is delaying its initial public offering (IPO) because of the delay.
- $81 million IPO stalled from a delay in research.
- Patients receiving the failed drug solanezumab displayed an 11% decline.
- 99% of all Alzheimer’s drugs failed between 2002 and 2012.
Among all Americans currently living, if those who will get Alzheimer's disease receive a diagnosis in the mild cognitive impairment stage — before dementia — it would collectively save $7 trillion to $7.9 trillion in health and long-term care costs.
The outlook is a lot more promising from Dr. Richard S. Isaacson, director of the Weill Cornell Alzheimer’s Prevention Clinic where he’s studied nearly 700 patients, with several hundred more on a waiting list. His entire focus is prevention, and he boldly says that it’s possible to use Alzheimer’s and prevention in the same sentence these days. He reports an impressive reduction in calculated Alzheimer’s risk, as well as improvement in cognitive function for patients in his study.
“Ten years from now, just like we treat hypertension, Alzheimer’s disease prevention and treatment will be multimodal. You’re going to have the drug you inject, the drug you take as a pill, the lifestyle that’s been proven to work, and specific vitamins and supplements,” forecasts Isaacson.
A factor suspected to be partially responsible for Alzheimer’s is a neuronal protein called tau, which normally acts as a stabilizer within brain cells for microtubules. These microtubules are part of the internal transport system in the brain. What’s seen in those with Alzheimer’s is a separation of tau from their microtubules. Without this stabilizing force, the microtubules fall apart. The tau floating within the cell will band together, interfere with cell’s normal functions, and lead to its death. Scientists used to think that tau existed only within cells, making it essentially inaccessible, but it’s recently been discovered that the diseased tau is transferred from neuron to neuron like an infection. This discovery opens the opportunity for new research and treatments of this mysterious disease.
There’s been a general shift in focus from the unsuccessful treatment of advanced cases of Alzheimer’s to early-stage treatment before symptoms arise. Multiple trials are being conducted using vaccine-based treatments to attack amyloid, which is another key contributor to cognitive decline. In addition, genetic research involving people at risk for Alzheimer’s who don’t develop the disease is also underway to see what factors could be protecting them.
While many of these new discoveries, treatments, and preventions won’t be at play for treating those who currently have Alzheimer’s, they can make a drastic difference in what the disease looks like 10 to 20 years from now by taking proactive measures that delay the disease and its progression.
Alzheimer’s disease takes a toll on families. It impacts them financially, emotionally, and physically,” says Ty. The reality that Alzheimer’s patients and their unpaid caregivers live with every day is beyond the realm of relatability for most Americans. Its burdens extend ruthlessly beyond the pain and suffering inflicted on the millions living with and dying from the disease.
In this survey, we set out to better understand the disease from the viewpoint of the caregiver. They are, arguably, the most troubled and impacted by the effects of Alzheimer’s disease and related dementia.
We learned that caregiving is a thankless but necessary job that’s primarily assumed by women already overwhelmed by the day-to-day needs of their own families, careers, finances, and social obligations. We found that caregivers are typically the first to pursue any kind of evaluation or diagnosis and immediately take on responsibilities that can’t be foreseen, and don’t come with nearly as much support as is required.
One of the best things the friends, family, and community of those with Alzheimer’s can do is directly support caregivers. When these women and men feel supported, they’re more likely to take better care of themselves. This benefits them in the short term by improving their physical health and in the long term by leading to possible prevention of Alzheimer’s.
We also confirmed that Alzheimer’s is expensive in every way. The research, medical care, lost wages — it all adds up to making this the costliest disease in the United States.