How to Improve the Quality of Life of an Elder with Dementia

Everything that an Alzheimer’s disease patient has ever learned eventually fades from memory. People with the disease gradually forget how to speak, how to act, how to dress, even how to eat. As the judgment and ability to care for self deteriorate, family, friends, and medical profes-sionals must take responsibility. With the right approach, you can vastly improve the quality of life of an elder with dementia.

Dealing with Behavioral Challenges

Each person with dementia experiences unique changes in behavior. While the changes can be upsetting to others, the person is not acting this way on purpose. There are underlying reasons such as:

• Pain or illness.
• Noisy environment or over-stimulation.
• Unfamiliar or unrecognizable surroundings.
• Frustration due to difficulty communicating or completing activities.

Two common behavior challenges are acting out and wandering. Some general tips for keeping the behavior in control is discussed below. For more individual information, talk with your hospice team.

Acting Out

People with dementia sometimes become anxious or agitated, and may even scream, hit, or push. Try not to take the aggressive behavior personally. Instead, stay calm and use a soft, reassuring tone. Redirect by engaging in a relaxing activity, such as art, music, or massage. Contact the hospice team since changes in behavior can be signs of infection, illness or pain.

Suggestions:

• Keep the area quiet with few distractions.
• Make note of what “triggers” the behavior and try to avoid it.

Wandering

You may notice the person pacing or walking aimlessly as a result of confusion, restlessness or boredom. For some, it is a way of communicating fears or needs. Make sure the person is getting the right amount of rest, food and drink. Provide reassurance that he is safe. Allow him to wander in areas that are well lit and secure, and walk with him.

Suggestions:

• Remove throw rugs and electrical cords that could cause tripping.
• Install childproof latches or doorknobs.
• Post signs for rooms (ex. “Bathroom”, “Kitchen”).
• Keep car keys out of sight.
• Keep identification on him at all times.
• Do not rearrange furniture.

Sundowner’s Syndrome

People with early-stage dementia sometimes become agitated or confused at certain times of the day. The end of the day or late afternoon is a common time for this to occur. This is referred to as sundowning or Sundowner's Syndrome. People who suffer from Sundowner's Syndrome often have trouble sleeping and their dementia symptoms are exacerbated late in the day. Symptoms for Sundowner’s syndrome1 include increased agitation, anger, confusion, depression, disorientation, paranoia, rapid mood changes and restlessness. These emotions then trigger behaviors such as crying, hiding things, pacing, wandering or even violence. The individual may experience hallucinations. It's still not clear what causes sundowning (e.g., the changing environment and light, or having had a full day of activities, or being tired), but the following suggestions, courtesy of the Alzheimer’s Association2, can help in dealing with symptoms of Sundowner's Syndrome:

Suggestions:

• Allow for light exposure in the early morning to help set internal clock.
• Encourage exercise throughout the day to expend excess energy.
• Limit caffeine intake, particularly in the evening.
• Have a quiet nighttime activity ready and a private space for relaxing.
• Consider purchasing a bedside commode to alleviate the need to visit the bathroom during the night.
• Schedule doctor's appointments regularly and make sure pain isn't an issue.
• Make sure that the house is secured so your loved one will be safe if he or she wanders at night.

Dealing with Communication Problems³

Of all the complications of dementia, the struggle to communicate may be the most troublesome. Memory loss and confusion can create barriers in a once close relationship. In addition, it is harder to understand wants and needs.
Non-verbal means of communication become increasingly important as the ability to use and convey words diminishes. Body language, tone of voice, touch and eye contact promote on-going, sensitive communication. Adopting new ways of communication will help maintain the personal relationship and dignity for the person with dementia.

Suggestions:

• Look directly at the person, approaching him from the front.
• Use a gentle touch to get his attention—try not to startle.
• Greet by his first name.
• Use short, simple words and sentences.
• Speak slowly, clearly and deliberately.
• Give one-step directions.
• Ask questions one at a time.
• Patiently wait for a response, give extra time to respond.
• Accept silence. He may not talk as much as before.
• Eliminate background noise and distractions.

Communication Helper

Body Language

• Gestures help explain the verbal message.
• Avoid sudden movements.
• Maintain eye contact at the person’s eye level, for example when he is sitting, sit with him.
• Smiling helps to gain and keep his attention.
• A gentle touch on the arm or hand can guide and provide a physical connection.

Tone of Voice

• Tone and pace of your words may unintentionally express negative attitudes.
• A relaxed, lower tone of voice conveys patience.
• Do not talk to him as you would a child.
• Avoid quizzing, such as, “Don’t you remember?” Instead, offer reminders.

Use Music Therapy to Relieve Stress

Music is very effective in easing the stresses of dementia. The rhythm, pitch and melody can stimulate different parts of the brain. It can soothe an agitated person, relieve anxiety and decrease pain. Furthermore, it provides a means of reminiscence and can bring a sense of belonging and spirituality.
Music helps a person with dementia express himself. By singing or playing a familiar song, you may notice changes in facial expression, increased eye contact, vocal activity and movement.

Suggestions:

• Sing or hum a familiar song, such as Take Me Out to the Ball Game, while completing personal care like bathing him or changing his sheets.
• During meal times, play familiar recorded music with a relaxed tempo.
• Rock or move gently to his favorite music, for example, big band or classical music.
• Listen to music from concerts he attended and tell stories about it.
• Play quiet music at bedtime.

NOTE: Listening to music may conjure both positive and negative memories and feelings. If certain types of music cause agitation, try another song or stop the music altogether.

Engage in Activities that Improve Well-being

Exercise

Speak to your loved one's physician so you know what kinds of exercise are physically possible. Daily walks are beneficial for both of you, but if that's not appropriate, you may want to consider chair exercises such as the Sit and Be Fit routines shown on public television. Remember, as with any exercise routine, a little is better than nothing at all.

Engage in Memory Jogging Activities

There are a number of board and card games that can help jog the memory of the players. Going through photo albums can also help stimulate the memory of the patient. Consider the activities that the patient used to enjoy prior to the onset of dementia and find safer forms of those activities for him to engage in.

Animal Therapy

If your loved one likes animals, consider animal therapy. Visits from calm animals are a great way to introduce something new and interesting to his or her environment, and research has shown that the interaction between humans and animals have therapeutic healing qualities. Make sure the animal you bring is not aggressive or excitable, and stay close during initial visits.

Listen more to him

It is generally accepted that a person is more likely to feel important and useful when asked for advice rather than just being engaged in social conversation. So when planning reminiscence activities, try to create ones in which your loved one can pass along knowledge to you. If she has always enjoyed cooking, try pre-cutting ingredients (or laying them out in advance) and asking her how to make a favorite dish. Keep a recipe book out for reference, should you need it.

Socializing

Every person has different social needs. Some people prefer to be left alone for long periods of time, while others enjoy companionship. Assess your loved one's social needs and try to find ways to meet them. Often volunteers can be integrated into a schedule so as to provide companionship and allow you a chance for your own personal time. Adult day care and adult day health care programs give older adults the opportunity to socialize with a group of peers; before making an appointment, make sure the program accepts participants with dementia. Some programs specialize in this type of care and incorporate activities tailored to the needs and interests of people with dementia.

Reminiscence

You may already be incorporating "reminiscence" activities without even knowing it. Does your loved one tell you stories from the past when a memory springs to mind? This is oftentimes the basis for reminiscing. It can occur organically when you look at photographs or conversation prompts a memory. As a caregiver, you can promote reminiscing by helping with associations that come up in conversation. Many people with dementia are comforted by returning to distant memories, since the past feels far more familiar. Objects from childhood, such as dolls or other toys, can help jog memories from earlier in life.

Touching

For many older adults, the only type of human touch they experience is clinical, such as during doctor's appointments. But most humans have a need for physical contact. Small gestures that include touching can provide a sense of well-being and assuage feelings of loneliness. When approaching your loved one, make careful movements that won't cause alarm. Some noninvasive ways of touching include massaging cream into feet or hands and brushing your loved one's hair. The improved emotional outlook reduces fatigue, anxiety, depression and tension. Use gentle touch when you need to get his attention. Gentle massage can provide further connection.

Suggestions:

• Be clear about your intention, telling him exactly what you are going to do.
• Massage over clothing, which may be more comfortable for him.
• Do not require him to move.
• Be aware of skin irritation or inflammation.
• Keep in mind that his skin may be fragile and sensitive.

Better Caregiving

Environment and ambience contribute to the comfort of a person with dementia and his caregiver. Soothing music, limited distractions and pleasant aromas, such as lavender, promote relaxation. Post pictures of fond memories and remembrances. Also, be sure furniture is easy to get in and out of, with comfortable cushions and pillows.

Enhance Environment

You want to make it easy and safe for the patient to find his way around. Complexity can result in compounding the confusion he also feels. Putting large signs (use of pictures can help) on areas such as bathrooms and kitchen can help guide the patient.
Try to decipher whether problematic behaviors are a result of your loved one's environment. Consider the following issues when assessing the environment:

• Look for patterns of behavior. Something as innocuous as a doorbell ringing can be upsetting to a person with dementia. If this happens, try posting a note to have visitors knock instead.
• A person with dementia may mistake dolls and/or images from the TV or in the mirror for actual people. If this is a problem, cover or remove mirrors and dolls and turn off the TV.
• Busy patterns, particularly on walls or carpeting, can agitate a person with dementia. Choose plain designs if possible.
• Don't forget that you are an important part of the environment. Some of the best things you can do are to stay calm, divert attention away from a negative stimulus, and speak in soft tones. Sometimes offering praise or treats such as food items can alleviate anxiety.

Keep a Routine

Keeping a routine schedule can help keep confusion at bay. Each day should begin with orienting activities to help patients to remember who and where they are and what they will be doing that day . Most daily routines are filled with basic activities like meals, grooming and bathing. Try to include other activities that are engaging and mentally stimulating (but not overly challenging), such as exercise and games

Bathing

Before beginning any personal care for the person, such as bathing, consider any sensitivity he may have and how to accommodate it. Think about how and when the person with dementia prefers to wash. (Is he a late-riser? Does he prefer to wash before bed?) Have the room ready, warm and free of drafts.

Suggestions:

• Begin in the least sensitive area of the body, such as hands and arms.
• Wash his hair last or at a separate time.
• Give him something enjoyable to hold like a sponge ball.
• Play soothing music or sing familiar songs.

Sleeping

Sleep problems are part of normal aging and can be more severe with dementia. Some people with dementia experience “sundowning”, which is characterized by increased agitation, restlessness and confusion at dusk and through the night. This can make it difficult for him to get the sleep needed to function well.

Suggestions:

• Limit intake of alcohol and caffeine.
• Plan days with interesting activities and exposure to daylight.
• Establish set times for getting up and going to bed.
• Limit daytime napping.
• Establish a bedtime routine.
• Avoid upsetting activities near bedtime.
• Ensure safety in the bedroom.
• Stay calm if he awakens in the middle of the night.

Eating

Often a person with dementia experiences changes in appetite or ability to eat. While these new eating habits can be distressing for the caregiver, there is a reason, or several reasons, for these changes. Loss of interest, inability to chew or swallow, inability to recognize the need to eat, depression, or forgetting how to feed himself can affect his eating. Talk to the hospice team about whether he needs well-balanced meals. You may be able replace meals with high calorie snacks he enjoys.

Suggestions:

• Reduce the size of helpings.
• Offer finger foods.
• Alter the flavor of foods since his tastes may have changed.
• Chop or puree food to ease chewing and swallowing.
• Avoid large groups of people during mealtime.

Offer one food at a time with the correct utensil. Too many choices can cause confusion.

Overeating

In some instances, the person cannot sense fullness or differentiate nutritious foods from foods that are less healthy. He may not understand the timing of meals, or the differences between breakfast, lunch, dinner and snacks, or is unable to recall when he last ate. In this case, it is better to limit access to snacks, especially sugary ones, which may trigger a “sugar high” resulting in complaints of feeling tired, depressed or hungry. Overeating or excessive caloric intake will result in unwanted weight gain, which has a negative effect on the individual’s mobility.

Suggestions:

• Provide alternatives that satisfy the sweet tooth but are lower in calories such as sugar- free gelatin and pudding, cookies containing dried fruit and/or nuts, low sugar candies.
• Introduce activities that decrease boredom and keep focus away from food and eating.
• Maintain a consistent meal schedule.
• Look for snacks the individual may have hidden.

Swallowing

Difficulties in eating can be the result of physical conditions, such as Dysphagia (trouble managing oral secretions or drooling), weakness of a voluntary cough or swallow, and involuntary tongue thrusts. They can also result in changes in voice quality/tone (hoarseness/moist sound), frequent throat clearing, poor oral hygiene, and weight loss or dehydration.

During mealtimes, the person may experience uncoordinated chewing or swallowing, multiple swallows for each mouthful, pocketing of food in the cheeks, or coughing or sneezing during/following eating. Furthermore, pain or discomfort in the throat or chest when swallowing, sensation of food/liquid “sticking” in the throat, may require something special is done with the head or neck to ease swallowing. In such cases, eating may be so strenuous as to cause fatigue, changes in respiratory patterns, hoarseness or reflux.

Suggestions:

• Keep eating and speaking separate to avoid choking.
• Avoid lengthy mealtimes which contribute to fatigue.
• Do not leave the person alone while eating.

Take Good Care of Yourself

When caring for a person with dementia, it is not unusual to experience a variety of feelings—from satisfaction to anger to sadness. These feelings are neither good nor bad. They are your feelings and affect your life and well-being. Seek support from other caregivers and stave off stress by sharing information.

Suggestions:

• Know you limits. Prioritize your day and do not feel guilty about chores that don’t get done.
• Plan ahead and have a back-up plan.
• Ask for help when it is needed and accept it when it is offered.
• Trust your instincts.
• Do not expect to feel cheery every day.
• Talk to the hospice team. Share your concerns and feelings.
• Look for support from other family members.
• Maintain good health. Get enough rest, eat properly, and exercise.
• Do not isolate yourself. Try to maintain friendships and other social contacts.
• Watch out for signs of depression. (See below)
• Utilize “respite care.”
• Contact your local Alzheimer's Association chapter for on-going support groups.
• Be gentle with yourself.
• Take one day at a time.

Studies have shown that a significant number of caregivers experience feelings of depression as their loved one enters the late stages of dementia. If you are experiencing any of the following symptoms, please contact the hospice team:

• Feelings of guilt.
• Hopelessness, emptiness, doom.
• No sense of joy in daily activities.

Taking the above some steps can vastly improve the remaining life of a dementia patient. This is not all one sided. You too can benefit. Caring for a loved one can improve the relationship between caregiver and care recipient, and can contribute to increased self-esteem in the caregiver.

References

1. Sundownerfacts, Accessed December 4, 2009.
2. Alzheimer’s Association, Accessed December 4, 2009.
3. Caregiver Guide – Dementia.

Related Articles

• How to Deal with Combativeness
• Controlling Unsafe Wandering Behaviors in Alzheimer’s Patients
• Alzheimer’s Disease: Understanding Wandering Behavior
• Sundowner’s Syndrome—Causes, Symptoms, Suggestions