Living With Alzheimer's Disease
Alzheimer's disease affects more than six million Americans and can be devastating for those who live with the disease and their loved ones. Explore the resources in this guide to find the support, tips and care services that can help you and your family during every stage of the disease.
Alzheimer's disease is a form of dementia that affects more than six million Americans. Scientists don't know the exact cause, although many researchers suspect that it occurs due to a combination of age-related changes in the brain, lifestyle factors, environmental variations and genetic factors.
Because Alzheimer's disease gets worse over time, early detection is important. The sooner you recognize the symptoms, the sooner your loved one can get the support they need. This guide provides an overview of Alzheimer's disease and offers tips to help caregivers understand how they can help their loved ones.
Memory loss is one of the most common signs of Alzheimer's disease. Occasional forgetfulness isn't usually a problem, but if your loved one asks the same question multiple times, can't remember important events, forgets information they just learned or has to take notes to remember important information, they could have memory loss caused by Alzheimer's disease or another form of dementia.
Confusion and poor judgment are also caused by Alzheimer's disease. Briefly forgetting what day of the week it is, especially after a long weekend or a trip across multiple time zones, is probably a normal age-related change. But if your loved one is often confused about what day it is, what month it is, what time it is or what season it is, that confusion could be caused by Alzheimer's disease.
The brain changes that occur in Alzheimer's disease may also make your loved one forget where they are or forget how they got from one place to another.
Alzheimer's disease makes it difficult for people to exercise good judgment. If a loved one has Alzheimer's disease, you may notice that they're suddenly spending more money than usual or not paying their bills on time.
Some people also have difficulty maintaining their normal grooming and hygiene habits. As a result, you may notice that your loved one has unwashed or tangled hair, body odor, untrimmed nails, or other signs that it's difficult for them to exercise good judgment about daily tasks.
A loved one with Alzheimer's disease may also exhibit some of the following signs and symptoms:
- Difficulty solving problems
- Trouble performing calculations
- Poor concentration
- New problems with speaking
- Difficulty writing
- Withdrawal from social activities or hobbies
- Sudden mood changes
- Changes in personality
Researchers have identified as many as 20 potential risk factors for Alzheimer's disease. Some of the most significant are demographic, genetic or environmental in nature.
Demographic Risk Factors
One of the most important risk factors is age. Although Alzheimer's isn't a normal part of aging, it often occurs in people who are at least 65 years old. The older someone is, the higher their risk for developing the disease; the prevalence of Alzheimer's disease for people between the ages of 75 and 84 is only 19%, but it could be higher than 50% in people who are 85 and older.
Education, race, and gender may also play a role in the development of Alzheimer's disease. In one study, adults with at least 16 years of formal education had less of the progressive damage associated with Alzheimer's disease and other forms of dementia.
Another study indicates that people with lower grades in school may have an elevated risk of developing Alzheimer's disease later in life. Researchers hypothesize that getting good grades can help people develop a cognitive reserve that helps them combat the negative effects of Alzheimer's disease on the brain.
Black and Hispanic adults are disproportionately affected by Alzheimer's disease when compared with white adults. According to data released by the Washington Heights-Inwood Columbia Aging Project, Hispanic Americans are 1.5 times more likely than white Americans to develop Alzheimer's disease and other forms of dementia while
Black Americans are about twice as likely to develop some type of dementia. Additionally, Black and Hispanic Americans are often diagnosed in the later stages of Alzheimer's disease when compared with white Americans.
Women are more likely to develop Alzheimer's disease than men. One reason for this is because women have a longer average life expectancy. Because age is one of the key risk factors for dementia, women are at a heightened risk of developing Alzheimer's disease.
Genetic Risk Factors
Researchers have identified several genetic variations that may be involved in the development of Alzheimer's disease, including the following:
- Amyloid precursor protein (APP): Changes in APP metabolism could cause beta-amyloid plaques to build up in the brain. These plaques prevent the brain cells from communicating effectively. Beta-amyloid may even destroy brain cells, leading to the changes associated with Alzheimer's disease.
- APOE gene: A specific version of the APOE gene (e4) may cause amyloid plaques to build up in the brain tissue. Inheriting this version of the gene doesn't mean a person will definitely develop Alzheimer's disease; it just means they have an increased risk. The risk is even higher for people who inherit two copies of APOE e4.
- CLU: Clusterin, also known as CLU, may affect the way the human body clears beta-amyloid, causing amyloid plaques to build up in the brain. The substance may also make beta-amyloid plaques more toxic to the brain cells.
- Tf gene: The Tf gene is involved in iron transport, a process that creates free radicals. These free radicals can cause cellular damage anywhere in the body, including the brain.
Many environmental factors have been linked to an increased risk of developing Alzheimer's disease. One of those factors is exposure to heavy metals, including lead, manganese, zinc, copper, cadmium and aluminum.
Exposure to organic solvents, especially in the workplace, also appears to increase the risk of developing this progressive disease. Other environmental risk factors include calcium deficiency, exposure to air pollution, vitamin deficiencies and military service.
Alzheimer's disease has no cure, but certain lifestyle changes and medications can increase your loved one's quality of life and prevent the disease from getting worse. These changes include dietary adjustments, increased physical activity, medications and increased social and mental activity.
Although researchers aren't sure why, the Mediterranean diet has been shown to slow cognitive decline, meaning it may slow the rate at which Alzheimer's disease progresses.
In one study, people who followed a Mediterranean diet had thicker cortical regions in their brains. These regions are involved in many high-level activities, such as memory, thought and perception. Participants who followed the Mediterranean diet closely also had lower levels of beta-amyloid in their brains than participants who weren't as strict with their dietary habits.
The Mediterranean diet emphasizes fresh fruits and vegetables, nuts, seeds and whole grains. Eggs, lean poultry, dairy products and fish are also consumed several times per week. On this diet, what you don't eat is just as important as what you do eat. Therefore, the Mediterranean diet limits intake of sugar-sweetened beverages, sodium, processed foods, saturated fats and heavily processed meats, including bacon and luncheon meats.
The MIND (Mediterranean-DASH Intervention for Neurodegenerative Delay) diet is a combination of Mediterranean diet and DASH diet principles used to modify some of the risk factors involved in the development of Alzheimer's disease. DASH is a heart-healthy eating plan that emphasizes plant-based foods, low-fat dairy products, fish and poultry.
Although no food is completely forbidden, DASH limits the consumption of sweets, sugary drinks, tropical oils and foods containing saturated fats. Following a DASH diet has been shown to reduce blood pressure, which is one of the risk factors for dementia.
Alzheimer's disease can make it difficult for your loved one to maintain their balance and perform high-intensity exercises, but it's important that they stay as active as possible. While some factors for Alzheimer's disease can't be changed, such as genetic variations, physical activity is a modifiable risk factor.
That means your loved one can reduce the risk of Alzheimer's disease by engaging in regular exercise. If your loved one already has Alzheimer's disease, they may be able to slow its progression by getting 30 to 60 minutes of exercise per week.
Regular physical activity improves cognitive function for people with Alzheimer's disease and other forms of cognitive impairment. It can also help older adults maintain their reasoning skills and increase the size of the hippocampus, the part of the brain involved in forming new memories.
Exercise has many other health benefits, such as increased strength, improved balance, higher energy levels and an enhanced mood, all of which are important for people with Alzheimer's disease.
Exercise is important for slowing the progression of Alzheimer's disease, but it's also important to keep safety in mind. Your loved one should consult a medical professional before beginning any new exercise program, especially if they have diabetes, heart disease or another medical condition.
Older people with arthritis and mobility problems may need to work with a physical therapist to learn how to prevent falls and avoid injuries while exercising.
Once a medical professional approves the new exercise plan, make sure your loved one has appropriate footwear and clothing. Exercise shoes should have plenty of cushioning to protect the feet against the shock of walking, dancing and doing other types of physical activity. Your loved one's clothing should be loose enough to be comfortable but not so loose that it creates a tripping hazard.
If your loved one enjoys a specific type of exercise, such as jogging or tennis, make sure they have sport-specific clothing and accessories to prevent common injuries.
Only one FDA-approved drug has been proven to delay clinical decline in people with Alzheimer's disease: aducanumab. Although this drug doesn't cure Alzheimer's disease, it helps remove beta-amyloid from the brain, leading to improved cognitive function.
In clinical trials, people taking aducanumab performed better on assessments designed to measure memory, language and orientation than people taking a placebo.
Several types of drugs are used to treat the symptoms of Alzheimer's disease, including cholinesterase inhibitors, glutamate regulators and medications that combine a cholinesterase inhibitor with a glutamate regulator.
Cholinesterase inhibitors prevent the breakdown of a substance called acetylcholine, which is involved in chemical messaging within the brain. Acetylcholine is essential for learning and memory, so preventing its breakdown can help control symptoms related to judgment, memory, language and thinking.
Glutamate is heavily involved in learning and memory, as it plays an important role in the communication that occurs within the nervous system. Glutamate regulators control glutamate activity, which can help improve learning and memory in people with Alzheimer's disease and other forms of cognitive decline.
Some drugs combine a cholinesterase inhibitor with a glutamate regulator to give people with Alzheimer's disease the benefits of both types of medication.
Social and Mental Activity
People with Alzheimer's disease should be as socially and mentally active as possible. Even if your loved one wants to give up their hobbies or avoid social events, it's important to encourage ongoing engagement.
Participating in social activities helps ensure that your loved one has a strong support network, increases their quality of life, and may slow the progression of Alzheimer's disease. It also gives older adults a sense of purpose, leading to improved mood and increased satisfaction with life. Suggest that your loved one stay socially active by volunteering, joining a neighborhood club or spending more time with family and friends.
Performing mentally challenging activities can prevent your loved one's Alzheimer's disease from getting worse. Doing puzzles, reading books on challenging topics or playing strategy games are all good ways to stay mentally active.
If your loved one is well enough to sit in a classroom, taking college classes or learning a new skill can also help slow down the progression of Alzheimer's disease and improve their quality of life.
Whether you're solely responsible for someone with Alzheimer's disease or you share caregiver duties with siblings, extended family members or friends, it's important to seek help from trustworthy resources.
Caregiving is a tough job, especially if you're juggling your caregiving duties with marriage, parenthood and/or a career. The following tips and resources can help you keep your loved one safe and prevent you from burning out under the stress of caring for another person.
The symptoms of Alzheimer's disease often get worse later in the day, so scheduling important activities for early in the morning can make it easier to help your loved one get ready for the day ahead.
Having a routine in place can give your loved one a sense of normalcy, but it's important not to be too rigid. If you're flexible, you'll be less frustrated if something takes longer than expected.
It's also important to involve your loved one as much as possible in making decisions. They may not be able to choose an outfit, iron it and get dressed without assistance, but maybe they can choose to wear the blue shirt or the red shirt, put on a colorful scarf or wear a pair of loafers instead of a pair of sneakers. Allowing your loved one to make decisions can help them maintain their independence and sense of purpose.
If you need to help your loved one with a task, try not to rush through it. People with Alzheimer's disease may not remember multistep processes, or they may have difficulty maintaining their balance. If you need to tell your loved one how to do a task, explain one step at a time. Don't move on to the next step until your loved one is ready.
Communicating with Medical Professionals
Due to memory loss and other cognitive changes, your loved one may need you to accompany them to medical appointments. It's important to communicate effectively with doctors, nurses and other medical professionals, especially if you have questions about your loved one's care.
You should also let your loved one take the lead whenever possible. Show respect by avoiding interruptions and waiting until they have finished talking to give the health care provider more information. If you feel your loved one isn't getting the best possible care, don't be afraid to ask questions or request a second opinion.
The longer you care for your loved one, the more paperwork you'll have to organize. Explanations of benefits, billing statements, test results and other documents can quickly pile up, making it difficult to find the information you need when you need it.
Stay organized by keeping everything in a binder with separate sections for insurance documents, medical bills, educational handouts and test results. If your loved one has other health problems, you can even organize the paperwork by specialty, such as cardiology and nephrology.
File papers according to their dates so that you can quickly flip to the right page and get the information you need.
If your loved one needs more care than you provide, it may be time to consider some type of long-term care facility. These facilities have trained staff who can make sure your loved one receives 24/7 care in a safe environment.
Follow these steps to choose a high-quality long-term care facility.
- Determine the criteria you'll use to make a decision. Monthly cost, reviews from previous residents and inspection scores are some of the most common data points to consider.
- Ask friends, family members, neighbors and medical professionals if they have any recommendations.
- If you don't receive any recommendations, use a search engine to look for facilities in your area.
- Make a list of facilities you want to visit with your loved one.
- During each visit, observe how staff members treat the residents. Are they kind and helpful, or do they seem frustrated and short-tempered? When you go through common areas, look around to make sure everything is clean and well-maintained. If you see other residents in the common areas, check to see if they look neat and clean.
- Ask plenty of questions about the facility's fees, staffing ratios, training requirements and safety plans.
Depending on how advanced it is, Alzheimer's disease can be expensive to treat. If your loved one isn't already enrolled in Medicare, help them fill out the application at the Social Security website. Medicare covers hospital care, doctor visits and other medical services, making it an essential resource for older adults with Alzheimer's disease.
If your loved one has Original Medicare, consider helping them enroll in a prescription drug plan (either a Medicare Part D plan or a Medicare Advantage plan with drug coverage). Medicare drug coverage may pay for the medications your loved one needs to slow down their cognitive decline.
It may also be a good idea to purchase Medigap coverage. Medigap is another name for a Medicare Supplement plan that covers deductibles, coinsurance and other out-of-pocket Medicare costs.
Medicaid provides health coverage for U.S. citizens and lawful immigrants who meet eligibility requirements related to their income, age and/or disability status. If your loved one meets the requirements, they can combine their Medicaid coverage with Medicare to drastically reduce their out-of-pocket medical costs.
In addition to the income limits, the Medicaid program has asset limits. In many states, the limit is $2,000 for a single person and $3,000 for a married couple; the limits may be higher or lower in your state.
After a loved one is diagnosed with Alzheimer's disease, you should discuss getting a power of attorney document so that you can make legal and financial decisions when your loved one can't.
Your loved one will be able to continue making decisions as long as they're able; the power of attorney document gives you the legal right to make decisions if your loved one becomes incapacitated due to their Alzheimer's disease or another medical or psychological condition.
The resources listed below can help you find programs and assistance that can help you and your loved ones, and some can even help you find local support in your community.
- Administration for Community Living
- Alzheimer’s Association
- Alzheimer’s Disease and Related Dementias Education and Referral Center
- Alzheimer’s Foundation of America
- Alzheimer’s Research & Prevention Foundation
- Alzheimer’s Research Foundation
- American Academy of Neurology
- BrightFocus Foundation Alzheimer’s Disease Research
- Dementia Friendly America
- Eldercare Locator
- Meals on Wheels America
- National Association of Area Agencies on Aging
- National Council on Aging
- National Institute of Neurological Disorders and Stroke
- National Institute on Aging