Alzheimer's Disease

Alzheimer's disease (AD), which is a form of dementia, is a progressive, degenerative disorder that attacks the brain's nerve cells, resulting in loss of memory, thinking and language skills, as well as behavioral changes. Caring for someone with Alzheimer’s disease is both physically and emotionally demanding, a challenge that may take more strength and patience than ever imagined. Look to friends, family and community resources for support.

When caring for someone with Alzheimer’s, consider practical strategies for communicating with them and keeping them safe. As the disease progresses, it becomes even more challenging, so prepare for the tough choices ahead.

• How to Handle Difficult Behavior with Alzheimer’s Disease Patients
• Who Can Help?
• Exercise and Alzheimer's
• Tips for the Holidays

How to Handle Difficult Behavior with Alzheimer’s Disease Patients
Although memory loss is the most well-known symptom of Alzheimer’s disease, behavior can also change. It is important to remember that these behaviors are caused by illness, not by intentional willfulness of the person with the disease. As brain damage increases, the patient cannot remember what was once considered normal, acceptable behavior. Below are common behaviors that develop and some tips for handling them.

• Agitated or violent behavior
• Wandering
• Driving
• Changes in hygiene
• Repetitiveness
• Difficulty with money management
• Changes in eating habits
• Inappropriate behavior in public

Agitated or violent behavior
Agitated or violent behavior can be caused by personality changes brought on by dementia. Mild-mannered people can become aggressive or lose inhibitions because of changes in their brain. Aggressive behavior can also be caused by physical discomfort or unexpressed emotions, such as frustration, fear or anger.

Agitation or violent behavior can be overwhelming. Below are several tips that will help address these issues.

• It is important to keep yourself and the patient safe. Remove all firearms and weapons from the reach of the patient, and stay away from someone whose violence puts you in danger. Call for help immediately if you or the patient is in danger of being harmed.
• Environmental changes and medications can help control violence in people with dementia.
• If danger is not an issue, remain calm since patient’s emotions are often a reflection of those close by them. If you escalate your emotions, the patient may also instinctively escalate their emotions.
• Do not argue with someone who is agitated. Patients with dementia often do not have the ability to follow an argument, and this frustrates them further.
• Try to distract the patient. If a certain activity has caused frustration or anger, changing the activity can help. For example, if they do not want to change clothes, switch to another activity and try getting them to change their clothes 15 to 20 minutes later.
• Do not try to negotiate or punish the patient for bad behavior. Cause and effect are beyond the cognitive ability of many with cognitive changes, so punishment will only further frustrate the patient, possibly causing more agitation or violent behavior.
• Try to keep a written account of aggressive or violent behaviors. This might seem overwhelming for a busy caregiver, but the record can help predict outbursts, so they can be prevented.
• Prevent aggression by following these tips:
• Maintain a daily routine – keep a regular schedule for sleeping, eating and other normal activities. Routines help soothe patients with dementia.
• Involve the patient in exercise to keep them energized during the day, which will help them sleep at night. Disruptions in sleep and pent up energy can lead to aggressive behavior. Exercise also helps maintain a healthy body and reduces aches and pains that can cause frustration and anger.
• Pay attention to signs of discomfort, pain, hunger and thirst as people with dementia often have difficulty communicating these feelings. Ask them if they are comfortable or need anything.
• Prepare patients for upcoming changes by using short, direct sentences to make it easier for them to understand and remember. For example, “Our good friend, Nancy, is coming to visit today. It will be fun to see her.” Keep your delivery positive, and remember you might have to repeat this information right before the activity.

Wandering
Patients with Alzheimer’s disease or dementia often become disoriented and begin to wander at some stage of the disease. Common occurrences include wanting to “go home” even when they are home or looking for someone they remember from the past. Sometimes, patients wander away from a new or unfamiliar setting, or forget how to find a familiar and convenient place, such as the bathroom, so they wander out the front door looking for it.

Help prevent wandering by following these tips.

• Maintain a daily routine – keep a regular schedule for sleeping, eating and other normal activities. Routines help soothe patients with dementia, and can help prevent boredom and anxiety, which can lead to wandering.
• Involve the patient in daily exercise to help maintain a healthy body and reduce aches and pains, which can cause agitation and lead to wandering.
• Avoid busy, crowded settings, such as shopping malls, loud sporting events or grocery stores that can be disorienting.
• Pay attention to signs of discomfort, pain, hunger and thirst to prevent patients from wandering to look for these things. Ask them if they are comfortable or need anything.
• Reassure patients that they are safe and remind them where they are. For example, “You’re in your favorite chair watching baseball on TV. This is a good place to be.”
• Make your home wander-resistant with modifications, such as “hiding” door locks by moving them above or below the normal location, camouflaging door handles by painting or covering them with material that matches the door, using motion detectors and bells attached to doorknobs, using night lights throughout the house, and keeping car keys out of sight.
• Have a plan in place when wandering begins to occur, such as:
• Asking neighbors to alert you if they see your loved one wandering
• Notifying local police in advance about their condition and that they may wander; if they do wander off and you cannot find them quickly, notify the police that they are missing and remind them they are a “vulnerable adult”
• Keeping neighbors contact information handy in case your loved wanders away from home
• Providing the patient with a medical alert identification bracelet that displays their condition and contact information
• Keeping a recent photo handy

Driving
At some point, it will no longer be safe for a patient with dementia to drive. There are signs that will indicate when this point is reached. Some common indicators include the patient becoming disoriented while driving in a familiar neighborhood or getting agitated, driving somewhere unintended (such as a previous job), and driving too slow or too fast.

The loss of independence associated with driving can cause anger, disappointment, frustration and a hurt ego. When the decision is made to prohibit driving, you must be sensitive to the patient’s emotions while communicating the decision to them, but also remain firm and unwavering. Consider asking the patient’s doctor to communicate that driving is prohibited for medical reasons.

Safety for the patient and for others is of utmost importance. In addition, there is an economic risk involved because, if you knowingly let someone with debilitating dementia drive and they injure someone, they can be financially responsible.

How do you deter an Alzheimer patient from driving?
 

• Talk about the dangers of driving before a tragedy occurs, not afterward.
• Offer to drive them places or ask friends and family to help you by providing transportation.
• Ask the patient’s physician to prohibit them from driving, in writing, due to the illness, medications and side effects.
• Although it seems deceptive, if the patient refuses to stop driving, hide the keys, disable the car, or get rid of it.

Changes in hygiene
Bathing can be challenging for patients because the disease may prevent them from understanding that they need to bathe, or they may have a fear of falling on the slippery surface (in the tub or shower). They also may be afraid of getting wet or getting water in their mouth, nose or eyes. There is often a sense of lost privacy and lost control.

Patient hygiene may be addressed with several tips about bathing.

 

• Provide as much privacy and independence as possible while bathing the patient; ask a son or brother to bathe a male patient and daughter, sister or female friend to bathe a female patient.
• Maintain a calm demeanor to balance the patient’s potential fears.
• Use the bathtub instead of the shower, if possible.
• Put a chair in the bathtub or shower.
• Provide handrails for stability.
• Never leave the patient alone in the bathtub or shower.
• If possible, arrange for a professional caretaker or nurse to come two or three times per week to bathe the patient. In between visits, you can give sponge baths to clean the face and private areas.
• If bathing upsets the patient or they become agitated, stop and focus on a more pleasant activity and then try again later; it’s okay to occasionally skip a bath.
• Make bath time part of their regular routine so it is perceived as a common activity.

Repetitiveness
People with dementia may repeat a question or activity multiple times because they are resolving or releasing anxiety, are bored and need an activity, or just don’t remember they have already completed the activity or asked the question.

Repetitiveness may be managed by following these tips.

• Listen to what is being repeated and the tone used to discern an anxiety or emotion behind the words. Respond to the concern rather than the specific question. For example, if fear is behind the repeated question, tell them “Everything is fine and you are safe here.”
• Find a structured activity that will engage them and provide a distraction from the repeated question or activity.
• If the patient is repeating an activity, such as folding a napkin over and over, ask them to help fold the laundry, so they feel useful and active while also distracting them from the cycle of repetition.
• Some repetitive actions signal that the patient’s brain is “stuck” in that mode, which is common and should not be alarming; sometimes a simple touch or redirected activity can break the cycle.
• Sometimes, the patient really is looking for an answer and doesn’t remember asking the question; write down the answer and put it where the patient can easily see it.

Difficulty managing money
At some point during the progression of the disease, the patient will no longer be able to handle financial details, such as paying bills, making purchases, overseeing investments, or interacting with banks and financial advisors. If they have handled financial concerns for a long time, it may be difficult to discuss turning financial control over to someone else.

Financial issues require discussion. Below are several tips that may help the patient, family and caregiver.

• When first diagnosed with memory issues, discuss how finances will be handled when the management of finances becomes burdensome.
• Identify a trusted person who can help with finances and who is willing to take over when necessary.
• Seek guidance from an attorney who is trained in elder or geriatric law. Social workers at the Nantz National Alzheimer Center can talk with you about legal resources. You can also find help at your local Alzheimer’s Association office and www.lawhelp.org.
• Be careful about divulging information about the patient’s disease, as there are some people who may take advantage of the situation. You may think it seems helpful to tell your bank tellers or credit card customer service representatives about their Alzheimer’s condition and that they cannot make withdrawals or purchases, but someone may fraudulently use this information. Instead, work with the bank or credit card company to set limits on the patient’s access without offering a reason.
• Make sure you are on a Do Not Call list to prevent phone solicitations. Be mindful of conversations the patient has when answering the phone in case it is someone asking for donations or selling something.

Changes in eating habits
Mealtime can become a power struggle when a patient with dementia refuses to eat or becomes a very finicky eater. Their tastes may change, they may lose their appetite, or they may not understand how or why to eat. Some people with cognitive illness develop paranoia and falsely believe that others are trying to poison them.

Unless there is an important reason for the patient to be on a specific diet, it is more important to just get them to eat versus what they eat. For many patients with dementia, the risks associated with not eating are greater than not eating well.

Eating may also cause issues. Below are some tips to help with mealtime and questions about nutrition.

• Let them eat what they want, without a strict focus on nutritional needs — if they love ice cream, let them have ice cream for dessert; if they love hamburgers, let them eat hamburgers every day.
• Provide choices instead of asking them to eat something specific — for example, “Do you want an apple or an orange?”
• Serve meals at the same time and place every day to maintain consistency and repetition, which is soothing to patients with cognitive challenges.
• Try having several small meals or snacks instead of three larger meals per day.
• Patients with cognitive challenges may forget the steps to begin eating, so show them — pick up your fork and take a bite to demonstrate.
• Give them one item to eat at a time, as several different colors and textures can be confusing.
• Use simple plates with no elaborate decorative designs to keep their focus on the food.
• Check with their physician to make sure the lack of appetite is not due to a physical problem. Some people with cognitive disease find it hard to swallow, and if this is the case, a physician might recommend a change in diet or routine to prevent choking.

Inappropriate behavior in public or in private
Dementia can affect the portion of the brain that regulates inhibitions. As the disease progresses, formerly modest people may take their clothes off, urinate or masturbate in public. There is usually no sexual or aggressive intent; it is simply a lack of control in the part of the brain that says this behavior is inappropriate.

Managing behavior of Alzheimer’s patients can be challenging. You may find these tips helpful during sensitive situations.

• Keep your shocked reaction in check. Calmly guide the patient to a bathroom or more secluded location and cover them, if necessary.
• Do not reprimand or show anger to avoid confusing them — they do not understand they have done something inappropriate.
• Distract the patient with another activity.

Who can help?
As a caregiver, you are not alone. In addition to treatment, the Nantz National Alzheimer Center provides advice, guidance, tools and support. Our goal is to slow memory-loss progress and improve the quality of life of every patient. Beyond our walls, there are wonderful organizations and people across the city, state and nation who will help you.

Nantz National Alzheimer Center Clinical Services
The Nantz National Alzheimer Center (NNAC) clinical social workers can help patients, families and caregivers navigate throughout the spectrum of the disease, offering one-on-one assistance, as well as direction on various support services offered in the Greater Houston area or your hometown. They will provide you with resources for everything from basic information about the disease and handling difficult situations to understanding what is covered by Medicare or by your private insurance policy. The NNAC’s goal is to educate and support you as you manage patient’s needs.

Alzheimer’s Association
The Alzheimer’s Association (www.alz.org) is one of the world’s top resources for families, caregivers and patients with all forms of dementia, including Alzheimer’s disease. They have local chapters across the country where you can get one-on-one assistance and guidance, and they host support groups where patients, families and caregivers can talk with people who have similar experiences. The Alzheimer’s Association also offers a helpline that provides information and guidance, in multiple languages, 24 hours a day, 7 days a week.

National Institutes of Health (NIH)
The NIH, part of the U.S. Department of Health and Human Services, is the nation’s medical research agency. It funds more medical research than any other organization in the world. The NIH Senior Health website (nihseniorhealth.gov) is a great resource for information about Alzheimer’s disease and caring for someone with Alzheimer’s disease.

Also visit the following websites for additional information:
 

• National Council on Aging www.ncoa.org/enhance-economic-security/5-resources-for-family.html
• Family Caregiving Alliance www.caregiver.org
• Find professional caregivers in your local area at www.care.com

Exercise and Alzheimer's
Exercise improves memory and could become a promising treatment for Alzheimer’s disease.

It has been known for some time that regular exercise lowers the possibility of developing Alzheimer’s disease; in comparison with seniors who do not exercise, those who exercise regularly lower the risk of developing Alzheimer’s disease by as much as 30 percent. Aerobic exercise improves the body’s motor function, auditory attention, memory, and executive function, increases cerebral blood flow, improves brain use of oxygen and glucose, and helps eliminate biochemical waste and damaging free radicals.

Interestingly, exercise also stimulates the production of factors that promote neural growth, such as brain-derived neurotrophic factor (BDNF) and insulin-like growth factor (ILGF); as a result, interconnections between synapses likely increase and processing brain capacity improves. Moreover, exercise helps regulate chemical neurotransmitters in the brain increasing in particular dopamine and acetylcholine, which are necessary to maintain nerve functions, mood and cognition. Exercise increases brain cognitive reserve, thereby reducing brain aging. Lastly, exercise improves psychological well-being, positive feelings, self-confidence, and improves the quality of sleep, which is critical for normal cognitive functioning.

Effects on the hippocampus
Aging and Alzheimer’s disease are both responsible for the shrinking of the hippocampus, which is the part of the brain often referred to as the “memory bank.” The progressive shrinking that occurs can be measured by magnetic resonance imaging (MRI). Controlled studies have demonstrated that aerobic exercise increases the volume of the anterior hippocampus by 2% and helps improve spatial memory, effectively reversing the normal rate of hippocampal atrophy by two to three years. Cognitive activity also may help increase hippocampal volume.

Exercise and your brain
Aerobic exercise appears to be an effective preventive intervention for dementia. There is also growing evidence that both aerobic and resistance training can help to maintain brain health in old age and perhaps improve cognitive function in Alzheimer’s disease. Studies continue to demonstrate the ability of exercise to enlarge specific areas of the brain, improve cognitive ability and increase lifespans. Exercise has even been shown to increase Mini Mental State Examination scores in patients with Alzheimer’s disease.

Tips for the Holidays
Stress has been a companion of holiday planning for most of us. When dementia and memory changes are part of the journey, it is helpful to consider the following suggestions:

Keep your loved one as involved as possible.
Consider what areas they can be involved in safely. Give them purpose — open and read cards together, discuss gift selections, give simple baking roles, sing songs and share holiday stories. Try to focus in the moment about the memories you are making rather than the outcome or perfect results.

Be consistent with medications and physician recommendations.
Even though you are busy, you will find that keeping with structure of medications, treatment and day programs will be better for the patient and ultimately for you.

Choose decorations carefully and allow yourself to make changes from past celebrations.
Look at areas of safety — lighted candles may not be a good idea and large blinking lights can cause disorientation. Create a beautiful home, accepting that it may be different than years before.

Recognize the effects of overstimulation.
Minimize overstimulation and your anxiety level as this can transfer to the patient. Keep things simple. Reduce the number of visitors, simplify the plan and allow a few days before and after an event to be quiet and relaxing.

Care for yourself.
Make a list of the usual things you do during the holidays. Decide which you really want to keep in your plan and what you can let go of. Allow others to help you and be clear in what you need them to do. Include time away for yourself and methods to help you regain your energy.

Additional Resources

Alzheimer’s Association	alz.org
National Institute on Aging	nia.nih.gov
NIH Senior Health	nia.nih.gov/health
Administration on Aging	aoa.gov
Texas Council on Alzheimer’s	dshs.state.tx.us/alzheimers/strategic.shtm
Alzheimer’s Association Houston and Southeast Texas Chapter	alz.org/texas/index.asp
Interfaith Care Partners: Alzheimer’s Care Team	interfaithcarepartners.org/CareTeam.html
National Institute of Health	nih.gov
ClinicalTrials.gov	clinicaltrials.gov
National Alliance for the Mentally Ill (NAMI)	nami.org
Older Drivers Project, American Medical Association	ama-assn.org/go/olderdrivers
The Hartford: A Practical Guide to Alzheimer’s, Dementia and Driving	thehartford.com/alzheimers
Research Forums Alzheimer Research Forum (Alzforum)	alzforum.org