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Guide to Dementia Care at Home

Last updated: March 25, 2013

Even though most dementia cases come from irreversible causes, there is still much that families can do to help their loved ones continue to function as well as possible for as long as possible. Creating a safe, comfortable, and supportive environment for someone with dementia can feel like a daunting and even overwhelming task for the caregiver, but fortunately there are now some accepted standards of dementia care that can help guide families to care for their loved one.

Dementia Care Techniques

Researchers, doctors, and eldercare professionals are still discovering and refining what works and what doesn't when it comes to dementia care. A lot of different techniques and strategies have been tried, some with more success than others, but clinicians have found that there are some principles and practices of dementia care that can and do work more often than not. For example:

  • Encourage and maintain independence for as long as possible - Studies have found that a technique called "graded assistance," combined with daily practice and positive reinforcement can go a long way to maintaining functional independence. Graded assistance is a method of helping someone accomplish a task with the least amount of aid possible, using a spectrum of assistance from verbal prompts to physical demonstration, physical guidance, partial physical assistance and complete physical assistance.
  • Music can be very effective - Studies have shown that music soothes and can help reduce problem behaviors, such as agitation and aggression (especially during mealtimes and bathing). However, it's important to note that the music should be something that the person with dementia prefers, not necessarily what the caregiver thinks would be nice to listen to. Playing your loved one's favorite types of music is typically the most effective form of dementia therapy.
  • Pet therapy, lighting manipulation and group therapies can be effective - These therapies concentrate on cognitive skills and/or social activities that have been tried to varying degrees of success.1

The following information is adapted from Caregiver Guide: Tips for Caregivers of People with Alzheimer's Disease, published by the National Institute of Aging (NIA).2 Although it was originally written specifically for Alzheimer's care, much of the information is applicable to other types of dementia care, and we have included it here for your reference and information. Remember to consult with your doctor about what is appropriate to your loved one's condition before following any advice or recommendation.

From the NIA's Alzheimer's Care Guide:

Finding out that a loved one has Alzheimer's disease (AD) can be stressful, frightening, and overwhelming. As you begin to take stock of the situation, here are some tips that may help:

  • Study your day to see if you can develop a routine that makes things go more smoothly. If there are times of day when the person with AD is less confused or more cooperative, plan your routine to make the most of those moments. Keep in mind that the way the person functions may change from day to day, so try to be flexible and adapt your routine as needed.
  • Consider using adult day care or respite services to ease the day-to-day demands of caregiving. These services allow you to have a break while knowing that the person with AD is being well cared for.
  • Begin to plan for the future. This may include getting financial and legal documents in order, investigating long-term care options, and determining what services are covered by health insurance and Medicare.

Communication

  • Choose simple words and short sentences and use a gentle, calm tone of voice.
  • Avoid talking to the person with AD like a baby or talking about the person as if she weren't there.
  • Minimize distractions and noise-such as the television or radio-to help the person focus on what you are saying.
  • Call the person by name, making sure you have her attention before speaking.
  • Allow enough time for a response. Be careful not to interrupt.
  • If she is struggling to find a word or communicate a thought, gently try to provide the word she is looking for.
  • Try to frame questions and instructions in a positive way.

Bathing

For some people with AD, bath time can be a frightening, confusing experience. Advance planning can help make bath time better for both of you. 

  • Plan the bath or shower for the time of day when the person is most calm and agreeable. Be consistent. Try to develop a routine.
  • Respect the fact that bathing can be scary and uncomfortable. Be gentle and respectful. Be patient and calm.
  • Tell the person what you are going to do, step by step, and allow him to do as much as possible.
  • Prepare in advance. Make sure you have everything you need ready and in the bathroom before beginning. Draw the bath ahead of time.
  • Be sensitive to the temperature. 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 handheld showerhead, shower bench, grab bars, and nonskid bath mats. Never leave the person alone in the bath or shower.
  • Try a sponge bath. Bathing may not be necessary every day. A sponge bath can be effective between showers or baths.

Dressing

For someone who has AD, getting dressed presents a series of challenges: choosing what to wear, getting some clothes off and other clothes on, and struggling with buttons and zippers.

  • Try to have the person get dressed at the same time each day so she will come to expect it as part of the daily routine. 
  • Encourage her to dress herself to whatever degree possible. Plan to allow extra time so there is no pressure or rush.
  • Allow the person to choose from a limited selection of outfits. If she has a favorite outfit, consider buying several identical sets.
  • Arrange the clothes in the order they are to be put on to help the person move through the process.
  • If the person needs prompting, provide clear, step-by-step instructions.
  • Choose clothing that is comfortable, easy to get on and off, and easy to care for. Elastic waists and Velcro enclosures minimize struggles with buttons and zippers.

Eating 

  • Ensure a quiet, calm atmosphere for eating. Limiting noise and other distractions may help the person focus on the meal.3
  • Provide a limited number of choices of food and serve small portions. You may want to offer several small meals throughout the day in place of three larger ones. 
  • Use straws or cups with lids to make drinking easier.
  • Substitute finger foods if the person struggles with utensils. Using a bowl instead of a plate also may help.
  • Have healthy snacks on hand. To encourage eating, keep the snacks where they can be seen.
  • Visit the dentist regularly to keep mouth and teeth healthy.

Activities 

Finding activities that the person with AD can do and is interested in can be a challenge. Building on current skills generally works better than trying to teach something new. 

  • Don't expect too much. Simple activities often are best, especially when they use current abilities.
  • Help the person get started on an activity. Break the activity down into small steps and praise the person for each step he completes.
  • Watch for signs of agitation or frustration with an activity. Gently help or distract the person to something else.
  • Incorporate activities the person seems to enjoy into your daily routine and try to do them at a similar time each day.
  • Take advantage of adult day services, which provide various activities for the person with AD, as well as an opportunity for caregivers to gain temporary relief from tasks associated with caregiving. Transportation and meals are often provided.

Exercise

Incorporating exercise into the daily routine can benefit both the person with AD and the caregiver. Not only can it improve health and help everyone sleep better, but it can also provide a meaningful activity for both of you to share. 

  • Think about what kind of physical activities you both enjoy, perhaps walking, swimming, tennis, dancing, or gardening. Determine the time of day and place where this type of activity would work best.
  • Be realistic in your expectations. Build slowly, perhaps just starting with a short walk around the yard, for example, before progressing to a walk around the block.
  • Be aware of any discomfort or signs of overexertion. Talk to the person's doctor if this happens.
  • Allow as much independence as possible, even if it means a less-than-perfect garden or a scoreless tennis match.
  • See what kinds of exercise programs are available in your area. Senior centers may have group programs for people who enjoy exercising with others. Local malls often have walking clubs and provide a place to exercise when the weather is bad.

Incontinence 

As the disease progresses, many people with AD begin to experience incontinence, which can be upsetting to the person and difficult for the caregiver. Sometimes incontinence is due to physical illness, so be sure to discuss it with the person's doctor.

  • Have a routine for taking the person to the bathroom and stick to it as closely as possible. For example, take the person to the bathroom every 3 hours or so during the day. Don't wait for the person to ask.
  • Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at clothes. Respond quickly.
  • Be understanding when accidents occur. Stay calm and reassure the person if he is upset. Try to keep track of when accidents happen to help plan ways to avoid them.
  • To help prevent nighttime accidents, limit certain types of fluids-such as those with caffeine-in the evening.
  • If you are going to be out with the person, plan ahead. Know where restrooms are located, and have the person wear simple, easy-to-remove clothing. Take an extra set of clothing along in case of an accident.

Sleep Problems

Nighttime can be a difficult time. Getting the person to go to bed and stay there may require some advance planning. 

  • Set a quiet, peaceful tone in the evening to encourage sleep. Keep the lights dim, eliminate loud noises, even play soothing music if the person seems to enjoy it.
  • Try to keep bedtime at a similar time each evening. Developing a bedtime routine may help.
  • Encourage exercise during the day and limit daytime napping.
  • Restrict access to caffeine late in the day.
  • Use night lights in the bedroom, hall, and bathroom if the darkness is frightening or disorienting.

Hallucinations and Delusions 

As the disease progresses, a person with AD may experience hallucinations and/or delusions.4

  • Sometimes hallucinations and delusions are a sign of a physical illness. Keep track of what the person is experiencing and discuss it with the doctor.
  • Avoid arguing with the person about what she sees or hears. Try to respond to the feelings she is expressing, and provide reassurance and comfort.
  • Try to distract the person to another topic or activity. Sometimes moving to another room or going outside for a walk may help.
  • Turn off the television set when violent or disturbing programs are on. The person with AD may not be able to distinguish television programming from reality.
  • Make sure the person is safe and does not have access to anything she could use to harm anyone.

Home Safety and Wandering 

Creating a safe environment is one of the most important aspects of caregiving and can prevent many stressful and dangerous situations. Caregivers of people with AD often have to look at their homes through new eyes to identify and correct senior home safety risks, as well as to prevent wandering, a dangerous tendency of people with AD.

  • Install secure locks on all outside windows and doors and keep them locked, especially if the person is prone to wandering. 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 latch or lock may help.
  • Remove the locks on bathroom doors to prevent the person from accidentally locking himself in.
  • Be sure to secure or put away anything that could cause danger, both inside and outside the house.
  • Use childproof latches on kitchen cabinets and any place where cleaning supplies or other chemicals are kept.
  • Label medications and keep them locked up. Also make sure knives, lighters and matches, and guns are secured and out of reach.
  • Keep the house free from clutter. Remove scatter rugs and anything else that might contribute to a fall. Make sure lighting is good both inside and out.
  • Consider installing an automatic shut-off switch on the stove to prevent burns or fire.
  • Make sure that the person carries some kind of identification or wears a medical bracelet. If he gets lost and is unable to communicate adequately, this will alert others to his identity and medical condition.
  • Keep a recent photograph or videotape of the person with AD to assist police if the person becomes lost.
 

Driving 

Making the decision that a person with AD is no longer safe to drive 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 safe driving is no longer possible, including getting lost in familiar places, driving too fast or too slow, disregarding traffic signs, or getting angry or confused.
  • Be sensitive to the person's feelings about losing the ability to drive, but be firm in your request that she no longer do so. Be consistent-don't allow her to drive on "good days" but forbid it on "bad days."
  • Ask the doctor to help. The person may view the doctor as an "authority" and be willing to stop driving. The doctor also can contact the Department of Motor Vehicles and request that the person be reevaluated.
  • If necessary, take the car keys. If just having keys is important to the person, substitute a different set of keys.
  • If all else fails, disable the car or move it to a location where the person cannot see it or gain access to it.

Visiting the Doctor

It is important that the person with AD receive regular medical care beyond Alzheimer's care. Advance planning can help the trip to the doctor's office go more smoothly. 

  • Try to schedule the appointment for the person's best time of day. Also, ask the office staff what time of day the office is least crowded.
  • Don't tell the person 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 something for the person to eat and drink and any activity that he may enjoy.
  • Have a friend or another family member go with you on the trip, so that one of you can be with the person while the other speaks with the doctor.
 

Source:

  • National Institute on Aging, 2012. 

1 For more information on the most up-to-date findings that might help you, talk to your doctor.

2Information provided by the NIA is free of copyright and in the public domain. Additional information can be found at the NIA website: http://www.nia.nih.gov/.

3Please also see the reference to research findings on the use of music, located at the beginning of this article.

4 In some types of dementia, such as Lewy Body Dementia (LBD), hallucinations can occur at the first onset of symptoms. For additional information on LBD, please refer to our article on dementia: Understanding Dementia: A Basic Overview.

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