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Special Health Reports


A Guide to Alzheimer's Disease

Dear Reader,

Did you ever stride purposefully into a room, stand in one spot, and then wonder what you'd intended to do? Lose your house keys or forget where you parked the car? Relax. Occasional memory slips are natural.

Perhaps, though, memory problems are piling up in ways that affect daily life. Or maybe your concerns go beyond forgetfulness. Do you find yourself struggling to follow a conversation or find the right word, becoming confused in new places, or botching tasks that once came easily? Everyone has these experiences sometimes, but if they frequently happen to you or someone you love, they may be early signs of Alzheimer's disease.

This condition strikes fear into people's hearts, with good reason. It is the leading cause of dementia, a brain disorder that robs people of the ability to think, learn, and remember, and, eventually, of their very selves. About 5.4 million Americans have Alzheimer's disease, and estimates suggest it will affect 7.7 million by 2030. Already, it is the sixth leading cause of death in the United States. There is no cure, and available treatments alleviate symptoms temporarily at best.

Better times may be coming. Many new drugs are under investigation. New research is turning up evidence of very early signs of Alzheimer's, offering possible targets for new treatments that could alter the disease's course before more flagrant symptoms appear. And diagnostic guidelines published in 2011 by the National Institute on Aging and the Alzheimer's Association aim to help researchers move closer to early detection and intervention.

Meanwhile, caring for someone with Alzheimer's continues to be one of the toughest jobs in the world. It is stressful, physically and emotionally draining, and very expensive, as almost 15 million unpaid caregivers for people with Alzheimer's and other dementias can attest.

Because the disease is progressive, coping with it requires foresight and careful advance planning. People in the early stages of Alzheimer's often can be partners in that planning, and this comprehensive report can guide you, as well. In it, you'll find hope for people who are struggling with Alzheimer's and practical help for caregivers.

With forethought, patience, knowledge, and support, you can better meet the challenges posed by this disease and improve the quality of your life and that of your loved ones.

Sincerely,

John H. Growdon, M.D.
Medical Editor

Special section: Caregiving — Day-to-day challenges and beyond

In the 2006 movie Away from Her, Fiona, a woman with Alzheimer's disease portrayed by Julie Christie, says, "Half the time I wander around looking for something, but I can't remember what it is. Everything is gone." This movie and several others (see "Alzheimer's disease in the movies") reveal compelling yet painful portraits of people diminished by the disease. But the roles of the caregivers in these films — spouses and adult children, as is often the case in real life — are perhaps even more poignant. They realize and reflect upon all that is "gone" even more acutely.

Alzheimer's disease has a profound emotional impact on the family. Fear, denial, anger, resentment, guilt, embarrassment, and grief are all normal reactions. Getting a diagnosis can be an overwhelming experience, and when the diagnosis is uncertain, the family may feel suspended between hope and despair. It's important that family members not succumb to inaction because, as difficult as it may seem, several important issues should be addressed as soon as possible (see "Planning ahead: Legal and financial matters").

But the day-to-day challenge of caring for a person with Alzheimer's disease often proves the most difficult and demanding aspect for loved ones, who most often are family members but also may be friends or neighbors.

Fast fact

According to the Alzheimer's Association, relatives provide about 80% of caretaking, while paid care makes up the remainder.

Explaining the condition

What should you tell someone who has Alzheimer's? Most experts say if the person asks what's wrong, you should be honest; knowing that the problem is a disease, not "insanity," is often a relief for the person affected. Telling someone who has not asked may be helpful, particularly if the person appears troubled about his or her condition. Generally, it's best for the physician to explain the diagnosis. New information doesn't always "stick," however, so don't be surprised if someone with Alzheimer's continues to ask what's wrong. In such cases, you can offer a reassuring but brief explanation.

You may also need to talk to family and friends. People with Alzheimer's disease often look quite healthy in the early stages of disease, and people outside the household may be unaware that anything is wrong. But it's important to tell other family members and friends about the diagnosis as soon as possible for two reasons. First, they need to know both that any unusual behavior is caused by disease, not by "craziness" or "meanness," and that they'll need new ways of responding as the person's cognitive abilities decline. Second, you and any other caregivers need emotional support and practical help from others.

Alzheimer's disease in the movies

A number of films have featured characters suffering from Alzheimer's disease:

The Savages (2007). In this tragicomedy, Laura Linney and Philip Seymour Hoffman play siblings suddenly faced with caring for their estranged father with dementia.

Away from Her (2006). Julie Christie was nominated for an Oscar for her portrayal of a woman with Alzheimer's disease who voluntarily enters a nursing home so that she will not burden her husband of 45 years.

The Notebook (2004). Based on a novel by the same name, this movie begins with an old man (James Garner) reading from a notebook to his wife (Gena Rowlands), who is in a nursing home with Alzheimer's disease. The notebook — and most of the movie — describes their youthful romance.

Iris: A Memoir of Iris Murdoch (2001). This film tells the true story of novelist Iris Murdoch's deterioration into Alzheimer's disease, based on the book Elegy for Iris, by John Bayley, her partner of 40 years. Judi Dench and Kate Winslet (who portray Iris in her elder and younger years, respectively) both received Academy Award and Golden Globe nominations for their performances.

Coping with daily challenges

The abilities of someone with Alzheimer's can fluctuate from day to day, or hour to hour, which makes the caregiver's job all the more difficult. Often, the person's abilities wax and wane for the same reasons that a healthy person's abilities fluctuate: fatigue, anxiety, discomfort, or medications.

Equally confusing may be a seeming inconsistency in an individual's abilities. He or she may be able to perform a complex task, but not a simple one. Family members may suspect the person is not trying hard enough or is being deliberately uncooperative when, in fact, the uneven loss of abilities is explained by the disease process itself.

Some techniques can improve the quality of life for both patient and caregiver (see "Practical advice for coping with daily routines"). For example, by breaking an activity into simple steps and talking the person through it one step at a time, you can turn a complicated task such as getting dressed into a manageable one.

Fast fact

Approximately 70% of people with Alzheimer's disease live at home, rather than at a long-term care facility.

Decisions about driving

One of the first questions many families ask is whether people with Alzheimer's disease should stop driving immediately. If the person is only mildly impaired, the answer may not be simple. Some advocates for the elderly believe that driving privileges should not be taken away until a person becomes an unsafe driver. The problem is trying to determine when a person is unsafe before an accident occurs.

Driving requires a complex interaction of eyes, brain, and muscles, as well as the ability to solve problems quickly. A person may appear to drive well until an unexpected situation occurs. The complicated stops, starts, and zigzags of city traffic can cause someone with Alzheimer's to panic or freeze with indecision. A University of California study found that the driving skills of people with mild Alzheimer's were significantly poorer than those of other elderly people, including those with some other forms of dementia.

The person's general behavior in other situations should alert the family as to when safety behind the wheel is questionable. People who exhibit poor judgment, inattentiveness to what's going on around them, clumsiness, and slow or inappropriate reactions certainly should not drive.

A tactful approach that preserves the person's self-esteem may work. Some people agree to stop driving if another reason is given — for instance, the car needs repair or the license or registration has expired. Another option is a road test with a driver's rehabilitation specialist, who can offer an independent assessment of safety.

Be aware that in some states, doctors have a legal duty to report unsafe drivers and drivers with certain medical problems to the state department of motor vehicles. It may not be necessary to go to such lengths. People with Alzheimer's disease sometimes take seriously a written prescription from a physician that says, "Do not drive." If all else fails, you may need to seek advice from a lawyer or an official with the Department of Public Safety in your state. Procedures vary, but generally, a driver's license can be suspended on the basis of a physician's written statement. If nothing else works, you can sell the car.

Bright lights, less dementia?

A unique study offers another strategy for improving symptoms of dementia. People who have dementia often have a diminished ability to track or react to day and night transitions. Both light from the environment and the hormone melatonin are necessary for normal circadian rhythm (the 24-hour sleep-wake cycle).

Researchers studied 189 residents in 12 assisted-care facilities, most of whom had dementia. Some residents received doses of bright light between 9 a.m. and 6 p.m., some took supplements of melatonin or placebo pills, and some received both treatments. A fourth group received no treatment. Almost all of the participants completed at least a year of the study.

People in the facilities with bright daytime lighting appeared to have less progression in their dementia. They had 53% less of a decline in physical function scores, and 5% less decline in memory test scores, compared with the average decline at dimly lit facilities. Patients exposed to bright light were also 19% less likely to develop depression during the time of the study.

People who took melatonin without bright light frequently complained of depression and were more likely to become socially isolated. This suggests that melatonin alone is not useful. However, when melatonin and bright light exposure were combined, depression rates were not higher than expected, and after several months of use, sleeping patterns seemed to improve. There was longer uninterrupted sleep, less frequent episodes in which residents were up out of bed at night, and somewhat less agitated behavior, according to researchers, who reported their findings in JAMA in 2008.

For people with dementia and for their caregivers, the use of bright lights is a simple, safe change. It may be helpful to combine light therapy with melatonin for people who have difficulty getting to sleep or staying asleep. These findings could improve the quality of life for people with dementia and ease strain on those who care for them.

Special precautions for wanderers

Keeping an individual with Alzheimer's disease safe is a heavy responsibility (see "Safety measures"). The most dangerous and distressing behavior is wandering. A person might get up at night to dress or cook, for example, or leave home at any hour. Wandering may be more purposeful than it sounds, possibly prompted by deep-seated memories of work, chores, or hobbies, or a longing to return to a past home. Inability to control this behavior is often a family's main reason for deciding to place a loved one in a nursing home.

Simple measures to prevent off-site wandering often work well for a time. The Alzheimer's Association recommends these steps:

  • Install slide bolts at the top or bottom of doors.

  • Place warning bells on doors.

  • Camouflage doorknobs by covering them with cloth of the same color as the doors. Consider childproof knobs, too.

  • Camouflage doors by painting them the same shade as surrounding walls.

  • Create a two-foot black threshold in front of doors with paint or tape. (A rug might do the job, too.) This creates the illusion of a gap or hole that a person with limited visual-spatial abilities may be reluctant to cross.

Sometimes, it's not possible to prevent wandering. These additional tips for planning ahead can help:

  • Take photographs often, so you'll have a recent photo available to give to police, if needed. Close-ups are best.

  • Keep a list of familiar places that the wanderer might go to, such as church or a favored restaurant, job sites, or a previous home. Interestingly, the Alzheimer's Association notes that wandering generally follows the direction of a person's dominant hand — to the right if right-handed, or the left if left-handed.

  • Post emergency numbers in a handy spot.

  • Buy identification jewelry engraved with "memory impaired" and the person's name, address, and phone number. Or enroll in the nationwide program MedicAlert + Safe Return, which offers a bracelet or pendant with a toll-free emergency response number that you — or anyone who finds the wanderer — can call 24 hours a day. Response line personnel alert police and a personal contact list.

  • A high-tech option uses GPS — the satellite global positioning system — and cell towers to provide an approximate location for a person who might wander. One such system, called ComfortZone, allows family members to check on the patient's whereabouts via an Internet link or by calling a monitoring center. Depending on the level of need, families might request an alert if the person wearing the locator device leaves a specified zone, or they might tap into the system only in case of emergency.

Practical advice for coping with daily routines

Communication

  • Use simple phrasing and short sentences, but be careful to avoid talking to the person as if he or she were a child.

  • To get the person's attention, begin by using his or her name.

  • Be patient. Give someone with Alzheimer's time to complete a sentence or thought, and try not to interrupt.

Bathing

  • Use rubber tub mats, tub seats, grab bars, nonslip bath mats, etc. Do not use bath oil or products that make the tub slippery. Put razors and electrical appliances out of reach. Take the lock off the bathroom door.

  • Follow the person's old routines as much as possible.

  • Prepare everything in advance. Lay out towels, soap, shampoo, and clothes. Have the water ready and at the right temperature before bringing him or her into the bathroom.

  • Avoid discussing whether a bath is needed. If the person refuses to get into the tub or shower, be flexible and suggest an alternative. If all else fails, try again later.

  • Be calm, gentle, and reassuring. If the person seems disturbed at this invasion of privacy, cover portions of his or her body with a towel.

  • Encourage him or her to do as much as possible without hands-on help. Talk through each step.

  • Check the skin for rashes and sores. Use powder or cornstarch to prevent chafing, and apply body lotion to dry skin.

Dental care

  • Prepare the toothbrush and demonstrate how to brush.

  • If the person will not brush and refuses assistance, try a foam applicator or a cloth moistened with mouthwash.

Dressing and grooming

  • Avoid shoes with slippery soles, pants or dresses that are too long or full, and long or full sleeves that may catch on doorknobs or furniture.

  • Consider the person's past grooming habits, but keep grooming simple to avoid frustration.

  • Avoid forcing the person to choose what to wear. Remove clothes that are out of season or seldom worn.

  • Try to establish a routine in which you help the person dress at the same time each day.

  • Select simple clothing the person can manage easily without assistance. Avoid buttons, hooks, snaps, and ties.

  • Lay out clothing in the order that it should be put on.

Mealtimes

  • Don't serve food or drink that is too hot. Remind the person to eat slowly and chew each bite thoroughly. If eating nonfood items becomes a problem, keep things like dog biscuits and flower bulbs out of sight.

  • Playing with food may be a signal that the person has too many choices. Put one utensil on the table and one food on the plate at a time.

  • Reduce sensory confusion at meals: Make sure the area is well lit. Use a plate color that contrasts with the food. Remove condiments from the table.

  • Eliminate distractions. Make sure the person is comfortably seated and doesn't need to use the bathroom.

  • Cut food into small pieces. If he or she chokes easily, switch to soft foods. Curved spoons, divided plates, and straws can make self-feeding more manageable.

  • Serve foods containing fiber to help prevent constipation.

Toileting

  • Put a colorful sign or reflective tape on the bathroom door to make it easy to find.

  • Buy slacks and pants with elastic waists, which are easier to manage than snaps and buttons.

  • Keep a diary of when the person urinates and has bowel movements, and remind him or her to use the bathroom at these intervals. Restlessness or agitation may indicate bladder or rectal fullness.

  • Help the person get into a comfortable position on the toilet.

  • If the person has trouble urinating, have him or her blow bubbles through a straw in a glass of water.

  • Restrict fluids two hours before bedtime. A portable commode or urinal bottle at the bedside may be helpful.

  • Use incontinence aids such as disposable pads and briefs, condom catheters for men, and waterproof pads and mattress coverings to protect furniture.

  • Try to be calm and understanding when accidents occur.

Sleeping

  • Discourage long naps during the day.

  • An afternoon walk or other exercise may promote a better night's sleep and help curb restlessness or wandering.

  • The sleeping area should be quiet and dim, but not completely dark. Keep a night-light on in the bedroom (and in the bathroom).

  • Be sure the person avoids caffeine after about 1 p.m.

  • Place locks near the bottom of doors leading outside. Lock all outside windows.

Activity

  • Observe how much activity the person can tolerate. Some may still enjoy a meal out or a social gathering, but others may become overstimulated or anxious.

  • Look for signs that the person is becoming frustrated. If so, turn the person's attention to another activity or offer help.

  • Provide opportunities for exercise, outdoor walks, and rides in the car — activities that people with Alzheimer's tend to enjoy.

  • Focus on variations of activities the person enjoyed before becoming ill. If he or she liked cooking, for instance, he or she may be able to wash vegetables.

Safety measures

An environment that's safe for the average family nearly always contains hidden hazards for someone who is mentally impaired. As you try to anticipate safety hazards, look at the world through the eyes of a cognitively impaired person. Conduct a thorough inspection of all areas in and around the house, looking for potentially harmful things that the person with Alzheimer's might misuse or misinterpret.

  • Correct hazards that could cause tripping and falling: cluttered areas, extension cords, throw rugs, slippery floors, dim lighting, and uneven surfaces. The route from bedroom to bathroom should be clear of clutter and have night-lights.

  • Lower the temperature on water heaters and insulate any exposed hot-water pipes. Block off radiators with furniture or a gate.

  • Keep cleaning supplies, insecticides, gasoline, paint, solvents, and medicines out of reach or stored in cabinets with childproof latches. Get rid of poisonous houseplants, and put small items (pins, buttons, etc.) out of reach.

  • Hide the stove knobs so the person can't turn on the burners. If you have an electric stove, install a switch that inactivates the burners, or switch off the stove at the fuse box or circuit breaker. If you have a gas stove, ask the local gas company for suggestions on how to disable it. Childproofing knobs may help here, too.

  • Make certain that all stairs have sturdy handrails and good lighting. Install a gate at the top of the stairs.

  • Install handrails and grab bars in the bathroom. Use a skid-resistant mat inside the tub or shower.

  • Lock away all firearms, power tools, sharp knives and scissors, and machinery.

Tips for caregivers and friends

Get organized. Call a family meeting to decide what kind of care is needed and determine who should research it, give it, and help pay for it. Anyone who can't attend in person should try to do so by phone. Try to put aside differences so the focus stays on your loved one's needs. Make a list of what needs to be done and who can do it. While it's helpful to have one person take primary responsibility, everyone should offer to take on specific tasks. In some families, people sign up for tasks and companionship on particular days of the week or month. To help defray costs, one large New England family asked everyone to pitch in monthly on a sliding scale that varied depending on financial ability.

Ask for help. Try to find out whether your loved one already has an informal network of support. Do any friends and neighbors stop by to visit or lend a hand? If you ask them to do so, many people may be willing to help more formally or call you if anything seems amiss.

Offer support — and accept it. If you're not the main caregiver, ask that person how you can help. Offer specific suggestions. For example, could you take over for a weekend, a few weekdays a month, or a much-needed vacation? Could you provide or coordinate certain services, such as housecleaning or transportation to doctor's appointments? If you're the main caregiver, spell out what needs to be done and what sort of help you require. Don't try to do everything yourself "because it's easier." Let other people step up to the plate. When someone offers help, accept it. If no one offers help, ask for it. Write out a list of smaller tasks that people could do, such as cooking an occasional dinner or running errands, and dole these out. Or simply ask others to check off what they can do.

Collect medical information. Keep a well-organized health care binder that includes information on the patient's current ailments, medications, allergies, medical history, specialists seen, and treatments. Add a copy of legal papers (durable power of attorney, health care proxy, living will, etc.), too. The Alzheimer's Association offers a checklist of helpful information for personal health records (www.alz.org/carefinder/support/documents/phr_checklist.pdf). You may wish to organize your personal health record online. The nonprofit American Health Information Management Association also offers useful information on setting up a personal health record at www.health.harvard.edu/learnphr. AARP also offers suggestions for organizing key information and free tools for one such system, which you can find at www.health.harvard.edu/aarptools.

Obtain respite care. Regular respite care from professionals, family, and friends can give you much-needed breaks. Find out if there are any adult day care services available in your community.

Join a real-time or virtual support group. Support groups — face-to-face or online — allow you to talk out frustrations and share helpful ideas with other people in your situation. The Alzheimer's Association, local hospitals, senior centers, or community groups offer support groups, too.

Blow off steam. Post numbers you can call when you're feeling overwhelmed, such as helplines (see "Resources"), good friends, and supportive people dealing with similar challenges. Exercise or relaxation techniques may help when you're frazzled, too. Try to carve out regular slices of time to yourself. And set up back-up plans for those precious minutes or hours to help ensure that minor emergencies won't derail you.

Take care of yourself. Eat well, get enough rest and exercise, and pursue activities that bring you pleasure. If it's too hard to find the time, consider getting extra help with some household chores.

Finding help and support

Families often complain that physicians don't adequately explain what they need to know. To avoid feeling isolated, learn everything you can about the disease and about dealing with the person who has Alzheimer's. An excellent place to start is the Alzheimer's Association (see "Resources"). It has assembled a wealth of information from health professionals and caregivers, including practical guides for managing nearly any problem you might encounter.

The Alzheimer's Association organizes family support groups where caregivers share their problems and solutions. The online blogs and message boards are helpful sources, too. The organization also connects families with community resources, including adult day care programs (many of which are specifically geared toward patients with dementia) and in-home respite services.

Caregivers often try to shoulder the burden alone because they are too shy, proud, exhausted, or afraid to seek help. All too often, they wear themselves out and become depressed or ill. Caring for someone with Alzheimer's is a major undertaking that is beyond the resources of a single person. It's essential that you care for yourself by getting away from your responsibilities from time to time.

If you're becoming depressed, seek professional help. You also need to recognize your own limits. The time may come when you can no longer provide in-home care and must move the person to a long-term residential care facility.

One woman's story: Caring for a mother-in-law with Alzheimer's

Florence was 77 years old when she was diagnosed with Alzheimer's. She lived with her son Glenn and his wife Kathy for seven years before moving to a nursing home and then, after several years, to a specialized Alzheimer's care center. It wasn't until then that the couple realized the benefits of the expert care available in a setting specifically geared for patients with dementia. Kathy and Glenn learned some useful tips to manage Florence's cognitive limitations without upsetting her, as Kathy explains below.

One approach we learned was to use "lie-lets." For example, Florence wondered why she hadn't heard from her sister, someone she was very close to. Rather than saying, "Don't you remember? Mabel died eight years ago," I simply and matter-of-factly explained that Mabel was on vacation in Florida and said she'd call as soon as she got back. This misinformation would ease Florence's anxiety and restore her equilibrium about the matter. Sometimes Florence would say that she wanted to go home. Instead of saying, "I'm sorry, you can't go home," we would tell her that we couldn't take her home that evening but would try to make arrangements to do so within the next few days. Most of the time, she'd forget her worry or request in a few hours or days. Trying to drill the truth into people with Alzheimer's is upsetting to them, and what's worse is that once they forget the truth, those upset feelings remain, but without a clear cause, which can be even more disturbing.

Before Florence went into the nursing home, we went through her old photographs and I asked who each person was and if she could remember the occasion. I made notes in the album, so Glenn and I could later recreate the scene for her. Some of the photos stuck with her — for example, a wedding cake she'd made — and it was something she would show to people with pride.

My relationship with Florence was a caring one, but often difficult even when she was healthy. When she first went into a nursing home, it was hard to accept that she'd reached a point where others could do a better job of caring for her than I could. The burden of caring for someone with dementia can take a toll, but I was surprised at the full weight of my grief when she died. In an odd way we became more attached during this very tough time.

The other advice I'd offer is to realize that sometimes, you just can't make it better. Just do the best you can to make your loved one know you're present and available.

Author: Harvard Health Publications
Date Last Reviewed: 10/1/2011
Date Last Modified: 9/23/2013
Copyright Harvard Health Publications