When a loved one is diagnosed with Alzheimer’s disease, some caregivers make the decision to care for them at home. This is a difficult and potentially overwhelming task. Each day brings new challenges as you cope with changing ability levels and new patterns of behavior, like wandering and hallucinations. Simple tasks that were second nature in the past, such as dressing, bathing and eating become increasingly difficult to manage. Having a plan for getting through the day can help you cope.
Many caregivers have devised their own strategies for dealing with difficult behaviors and stressful situations. There is no one-size-fits-all solution for dementia caregivers, so the only way to find out what works for you is through trial and error. Each person with Alzheimer’s will respond differently to different strategies, and their effectiveness is likely to change throughtout the stages of dementia.
Devise a Daily Routine
Begin by studying your loved one’s daily routines. Try to detect patterns in behavior and to see if you can alter your routines to make things go more smoothly. For example, if your loved one is less confused or more cooperative in the mornings, adapt your routine to make the most of those moments. Keep in mind that abilities and preferences will fluctuate from day to day, so try to be flexible and adapt your routine as needed. From there, you can incorporate tips and strategies in the categories below to facilitate caring for your loved one.
Communicating with a person who has Alzheimer’s disease can be a challenge. It takes a great deal of practice to achieve mutual understanding, but these suggestions can help:
- Choose simple words and short sentences and use a gentle, calm tone of voice.
- Do not talk to the person with Alzheimer’s like a baby or speak about them as if they weren’t there.
- Minimize distractions and background noise—such as the television or radio—to help the person focus on and process what you are saying.
- Make sure you have their attention before speaking by addressing them by name and making eye contact.
- Allow enough time for them to respond, and be careful not to interrupt.
- If they struggle to find a word or communicate a thought, gently try to provide the word(s) they are looking for.
- Frame questions and instructions in a positive way.
- Be open to the person’s concerns, even if he or she is hard to understand.
- If you can’t understand what they are trying to say, look for clues in their emotions and body language and take their surrounding environment into consideration.
For many people with Alzheimer’s disease, bathing is a frightening and confusing experience. The elder may think they have just showered, but in reality their last shower was a week ago. They can become confused by the process and all of the products or become afraid of the water or a possible fall. Advance planning can help make bath time easier on both of you.
- Plan the bath or shower for a time of day when the person is most calm and agreeable. Be consistent and try to develop a routine.
- Respect the fact that bathing can be scary and uncomfortable. Be gentle, patient and calm.
- Move slowly and tell the person what you are going to do, step by step. Allow him or her to assist in the process as much as possible.
- Make sure you have all the products, towels and assistive devices you need set up before bringing your loved one into the bathroom. Draw the bath ahead of time.
- Be sensitive to the temperature of the water and the air. Warm up the room beforehand if necessary, and keep extra towels and a robe nearby. Test the water temperature before beginning the bath or shower.
- Minimize safety risks by using a hand-held showerhead, a shower bench, grab bars, and nonskid bath mats. Never leave the person alone in the bathtub or shower.
- Bathing may not be necessary every day. A sponge bath can be effective between full showers or baths.
For someone who has Alzheimer’s, getting dressed presents a series of challenges: choosing what to wear, getting some clothes off and other clothes on, and fastening items with buttons and zippers. Minimizing these challenges can make a significant difference.
- Try to have the person get dressed at the same time each day so he or she will come to expect it as part of their daily routine.
- Plan to allow extra time so that they can dress themselves as much as they are able without added pressure or having to rush.
- Allow the person to choose what they want to wear from a limited selection of outfits. If he or she has a favorite outfit or clothing item, consider buying multiples or the same style in a few different colors.
- Store some clothes in another room to reduce the number of options they have to choose from. Too many options can be overwhelming when trying to make a decision. Keep only a couple of outfits in their closet or dresser.
- Arrange the clothes in the order they are put on to help guide the person through the process.
- Hand them one item at a time or give clear, step-by-step instructions if they need prompting.
- Choose clothing that is comfortable, easy to get on and off, and easy to care for. Elastic waistbands and Velcro enclosures minimize struggles with buttons and zippers.
Some people with Alzheimer’s disease want to eat all the time, while others have to be encouraged. Eating and drinking involve the senses as well as coordinated fine motor functions, all of which can diminish due to the disease. Making some mealtime adjustments can help your loved one get the nutrition they need.
- View mealtimes as opportunities for social interaction. Try to be patient and avoid rushing.
- Aim for a quiet, calm atmosphere by limiting background noise and other distractions.
- Maintain consistent mealtime routines, but adapt to the person’s changing needs.
- Allow the person to choose what they would like to eat, but limit the number of options to choose from. Try to offer appealing foods that vary in taste, texture and color.
- Serve small portions or several small meals throughout the day.
- Make healthy snacks, finger foods, and shakes available. In the earlier stages of dementia, be aware of the possibility of overeating.
- Choose dishes and eating utensils that promote independence. If the person has trouble using utensils, use a bowl instead of a plate, or offer utensils with thicker, easier to grasp handles. Difficulty using utensils can also be addressed by serving finger foods like small sandwiches, chicken fingers, and fruit pieces. Use straws or cups with lids to make drinking easier and minimize messes.
- Encourage the person to drink plenty of fluids throughout the day to avoid dehydration.
As the disease progresses, be aware of the increased risk of choking and aspiration due to difficulty chewing and swallowing.
Find activities that match your loved one’s interests and abilities. Building on current skills generally works better than trying to teach something new.
- Simple, short activities without too many different steps or requirements are best.
- Help the person get started, and break the activity down into small steps.
- Offer praise for each step they complete, and watch for signs of agitation or frustration. If they become irritated, gently help or redirect their attention to something else.
- Incorporate favorite activities into your daily routine and try to do them at a similar time each day.
- To help maintain functional skills, enhance feelings of personal control and make good use of time, try to include them in an entire activity process. For instance, at mealtimes, encourage the person to play a role in helping prepare the food, setting the table, and cleaning up afterwards.
- Take advantage of adult day services, which provide various activities and social opportunities for seniors as well as respite time for their caregivers. Transportation and a meal are typically provided.
As the disease progresses, many people with Alzheimer’s begin to experience reduced bladder and bowel control. Incontinence can be upsetting and embarrassing for the senior and difficult to manage for the caregiver. Sometimes incontinence is indicative of a physical illness, so be sure to discuss it with the doctor.
- Create a routine for taking them to the bathroom and stick to it as closely as possible. For example, take toileting breaks every 3 hours during the day, and don’t wait for the person to ask.
- Watch for signs that they may have to go to the bathroom, such as restlessness or pulling at clothes, and act quickly.
- Be understanding when accidents occur. Stay calm and reassure the person if he or she is upset. Try to keep track of when accidents happen to help plan ways to avoid them. Consider scheduling an additional toileting break or getting to the restroom within 30 minutes of finishing a meal.
- To help prevent nighttime accidents, limit fluid intake in the evening hours just before bedtime.
- If you are going to be out together, plan ahead. Know where restrooms are located, and have the person wear simple, easy-to-remove clothing. Take an extra set of clothes and back-up incontinence supplies along in case of an accident.
Sundowning and Sleep Problems
Many people with Alzheimer’s become restless, agitated, and irritable during twilight hours and even into the night. This is referred to as “sundowning” or "Sundown" syndrome. These symptoms can be dangerous, both for your loved one and for anyone around them.
- Maintain a routine at sundown that replicates your loved one’s lifelong evening routine. This could involve putting on their pajamas, watching the evening news, or starting dinner.
- Monitor the impact of mealtime on the evening routine. The largest family meal could be served at midday.
- Limit caffeine intake, especially later in the day.
- Encourage exercise, as it tends to improve sleep. Consider scheduling physically demanding activities earlier in the day. For example, bathing could be done in the morning.
- Limit naps later in the day, but make sure that the person gets adequate rest if they need it. Fatigue can increase the likelihood of late-afternoon restlessness and exacerbate sundowning.
- Set a quiet, peaceful tone in the evening to encourage them to wind down and sleep. Eliminate loud noises or even play soothing music if the person seems to enjoy it.
- Try to keep bedtime at a similar time each evening. A consistent bedtime routine is very helpful.
- Use night-lights in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.
- Take precautions to provide a safe space for your loved one to sleep, so you can get a solid night’s rest, even if he or she stays awake or tries to wander.
Hallucinations and Delusions
As the disease progresses, your loved one may experience hallucinations and/or delusions. Hallucinations involve seeing, hearing, smelling, tasting, or feeling something that is not there. Delusions are false beliefs that the person thinks are real.
- Sometimes hallucinations and delusions are signs of physical illness, such as a urinary tract infection. Keep track of what the person is experiencing and discuss it with the doctor.
- Avoid arguing with them about what they are experiencing. Try to respond to the feelings they are expressing. Comfort them if they are afraid.
- Try to distract them or redirect their focus to another topic or activity. Sometimes a change in scenery, like moving to another room or going outside for a walk, may help.
- Avoid violent or disturbing television programs and movies. The person with Alzheimer’s may not be able to distinguish them from reality.
- Make sure the person is safe and does not have access to anything he or she could use to harm themselves or others.
- Discuss current and recent illnesses and medications with their doctor. Certain conditions and medications may cause hallucinations or delusions.
Keeping your loved one safe is one of the most important aspects of caregiving. Some people with Alzheimer’s disease have a tendency to wander away from home. Knowing how to limit wandering can protect a person from getting lost and injured.
- Make sure that they carry some kind of identification or wear a medical bracelet.
- Consider enrolling them in a wandering and/or medical alert program. The Alzheimer’s Association Safe Return program is a nationwide 24/7 emergency response service. Another national program is Project Lifesaver, which provides wearable location devices for wanderers and works hand-in-hand with trained public safety agencies to respond to wandering emergencies.
- Notify neighbors and local authorities in advance that your loved one tends to wander. Alert them to contact you or the police immediately if the individual is seen alone off of their property.
- Keep a recent photograph or videotape of your loved one on hand to assist police in the event they become lost.
- Keep exterior doors locked. Consider a keyed deadbolt or an additional lock up high or down low on the door. If the person can open a lock because it is familiar, a new type of latch or lock may help.
- Install an alarm or "announcing system" that chimes when exterior doors and windows open.
Caregivers of people with Alzheimer’s disease have to view their homes through new eyes in order to identify and correct safety risks. Creating a safe home environment can prevent many stressful and dangerous situations. Prevention begins with a safety assessment of every room in your home. Use the following room-by-room checklist to alert you to potential hazards and to record any changes you need to make.
- Install secure locks on all outside windows and doors, especially if they are prone to wandering.
- Remove the locks on bathroom and bedroom doors to prevent them from accidentally locking themselves in.
- Use childproof latches on kitchen cabinets and any place where cleaning supplies or other chemicals are kept.
- Label medications and keep them in a locked cabinet or medication box.
- Make sure knives, scissors, lighters, matches, guns, and any other potentially dangerous items are secured and out of reach.
- Keep the house clean and free from clutter. Remove throw rugs and any other hazards that might contribute to a fall.
- Make sure there is adequate lighting both inside and outside the home.
- Be aware of and anticipate kitchen safety issues, such as forgetting to turn off the stove or oven. Consider installing an automatic shut-off switch on appliances to prevent burns and house fires.
- Secure the yard with fencing and a locked gate. Equip the gate with a bell or chime that can alert you when it opens or closes.
- Ensure your home is equipped with plenty of smoke detectors. Test them monthly and change the batteries as soon as they begin to chirp.
Alzheimer’s disease directly affects the skills needed to safely operate an automobile. Making the decision to take away the car keys is difficult, and it needs to be communicated carefully and sensitively. Even though the person may be upset by the loss of independence, safety must be the priority.
- Look for clues that they can no longer drive safely, including getting lost in familiar places, driving too fast or too slow, disregarding traffic signs, getting angry or confused, and signs of damage on their car.
- Be sensitive to their feelings about losing the ability to drive, but be firm in your request that they no longer do so. Be consistent—don’t allow them to drive on “good days” but forbid it on “bad days.”
- When it’s time to stop driving, your loved one may resist. Instead of arguing, provide other options for transportation that will help them maintain their routines.
- Ask the doctor to use their authority to get your loved one to stop driving. The doctor can also contact the local Department of Motor Vehicles and request that their driving skills be reevaluated.
- If necessary, take the car keys. If just having keys is important to them, substitute a different set of keys.
- If all else fails, disable the car, move it to another location where it is inaccessible and out of sight, or sell it.
Visits From Family and Friends
Socialization is important to people with Alzheimer’s, even though they may not always remember who their visitors are. Use these tips to simplify visits and activities and make them more enjoyable for everyone who is involved.
- Plan visits for the time of day when the person with Alzheimer’s is at his or her best.
- Consider bringing along an activity, such as a simple craft or photo albums to look at. Be prepared to skip planned activities if necessary. Flexibility is key.
- Keep the environment calm and free of distractions. Sometimes soft music playing in the background can be enjoyable.
- Respect their personal space and don’t get too close.
- Remind them who you are if they don’t seem to recognize you.
- Don’t argue if they are confused. Validate their feelings, and change the activity or topic of conversation if they become upset.
- Remember not to take it personally if they don’t recognize you, are unkind, or respond angrily. They are likely reacting out of confusion and frustration.
It is important that your loved one receive regular medical care. Advance planning can help the trip to the doctor’s office go more smoothly.
- Try to schedule appointments for the time of day when they are most calm, rested and aware. Ask the receptionist what time of day the office is least crowded to avoid long waits and overwhelming your loved one.
- Let the office staff know in advance that they may be confused and act out because of their condition. Ask them for help to make the visit go smoothly.
- If they do not like going to the doctor, avoid telling them about the appointment until the day of the visit or even shortly before it is time to go. Be positive and matter-of-fact.
- Bring along a favorite snack or beverage and any materials or activities that they enjoy.
- Have a friend or another family member accompany you both so that one of you can be with your loved one while the other speaks with the doctor one-on-one.
- Remember to bring a detailed medication list and any helpful medical information and test results to the appointment.
- Write down any questions and concerns you may have before the appointment so you don’t forget to address them all with the doctor. Write down the answers or ask the doctor for written information and instructions, so you can keep them on file.
- Schedule routine checkups with specialists (dentist, ophthalmologist, dermatologist, audiologist, etc.) in addition to your loved one’s primary care physician.
Hiring In-Home Care
Professional caregivers who have extensive experience caring for seniors with Alzheimer’s disease can be a valuable addition to your loved one’s care team. They can assist with all of the facets of care detailed above, provide valuable companionship and enable you to enjoy some respite time.