Click On A Category Eating Problems Grief and Bereavment Safety Issues Sleeping Problems Wandering Problems Eating Problems Alzheimer patients present a variety of eating problems. Most take longer to eat. Some are easily distracted by noise or activity around them. Some patients have tremors and spill food. Others cannot remember how to use forks or spoons. They knock glasses of liquid over. Some patients even try to eat things like flowers or napkins! Some patients will not eat at all. And, some patients who do eat may have trouble swallowing. Many patients crave sweets, leaving the nutritious fruits, veggies, and meats behind. I have compiled some tips that may help you manage eating problems. Here they are: 1. Don't put the whole meal on the plate at one time. Use paper plates and put one food item per plate. 2. Some patients won't drink liquid if it has already been poured into a glass. However, if you let the patient see you pour the liquid into the glass, they may remember to drink it. 3. Provide contrast between the food and the plate. If the food is green, a white plate makes for good contrast. Many patients have problems with color discrimination. 4. If you put all the food on one single plate, rotate the plate often so the patient gets to see all the food on the plate. 5. Try to serve five or six small meals during the day , instead of three large ones. Patients have short attention spans and cannot deal with long meals. 6. Some patients have trouble swallowing thin liquids. You can use a thickening agent or use things like gelatins,puddings or ice cream. 7. Some patients lose the ability to taste. Sensation becomes dulled. Try flavor enhancers on food. Chicken broth can marinate chicken to give it extra flavor. Add bacon or cheese flavors to soups and veggies. 8. Some patients develop tastes for foods they once hated. For example, someone may have hated brocoli all their life, but suddenly they develop a taste for it. Why, we don't know. 9. Don't serve items with pits, bones, or in the wrapping. The Alzheimer patient may forget to remove the bone or pit or may choke when they eat the wrapper. 10. Try to toilet the patient before you sit them down to eat. This way, they will not interrupt eating. 11. Avoid hard-boiled eggs. The patient may try to swallow the whole egg without chewing it and choke. Always slice it through a cheese slicer first before serving. 12. If you have a patient who likes peanut butter, but has trouble swallowing peanut butter, try mixing some applesauce with it, to make it easier to swallow. 13. Keep soap away from patients at the dinner table. They may think the soap is something else to eat. 14. Always check the temperature of food or liquid before you serve it to a patient. Many patients have a reduced ability to both feel pain and to verbalize it, so you have to be aware of this. 15. Avoid tough, crunchy foods. Some patients will have trouble trying to swallow them. 16. Some patients will chew and chew. You have to tell them to stop chewing and say " swallow now". 17. If you serve food in containers, remember to take the lids off...the patient will not be able to figure out that food is under the lid unless they see it. 18. Try to use drinking cups with lids on them to prevent accidental spills. You can also use long straws through the lids, to make it easy for the patients. Many advanced dementia patients have what is called the "sucking reflex", much like babies, and the use of a straw can take advantage of that reflex. Grief And Bereavement Caring for a relative with Alzheimer's disease has been described as a "funeral that never ends". Caregivers see their loved one die a little bit each day, until they become a shadow of the person they once were. Grieving is an ongoing process, and even after the patient dies, grief still continues. Common feelings at the time of death include feeling depressed, a yearning for the deceased, and a flood of memories and thoughts associated with the deceased. An comprehensive study asked caregivers how they felt immediately after the death of their loved one from Alzheimer's disease. The statements made and the percent of caregivers making each statement are tabulated below. Feelings immediately after death of loved one Percent Reporting this feeling "The death was a relief" 77% "I was ready to let him/her go" 77% "I mourned for months before he/she died" 39% "I was ready to get on with life" 31% "The death was a relief,but I felt guilty" 31% "I kept praying that he/she would die" 23% "I could not cry at all" 23% Many caregivers reported they could not cry even at the time of death, but that their most intense crying had been done while performing caregiving duties. Elizabeth Kubler-Ross studied the stages of grieving that caregivers go through. There are five general stages of grieving, but not every caregiver experiences all the stages. The first stage is denial. This is felt at the time Alzheimer's disease is first diagnosed. The caregiver does not believe the diagnosis. They feel the doctor is mistaken and may seek a second opinion. Other caregivers simply ignore the diagnosis and pretend the patient will be fine. The second stage of grief is anger. The anger can be directed anywhere- at God, physicians,or other family members. Caregivers in this grief stage resent the care recipient for becoming ill and causing physical, mental, and financial hardships. Family members may quarrel about care of the patient or who is or is not doing their fair share of care. A third stage of grief is bargaining. In this stage, caregivers try to modify or postpone the disease from getting worse. They may search for new therapies, give the patient vitamins and minerals, or go to other medical specialists. A fourth stage of grief brings feelings of depression. In this stage, the illness and death of the patient is realized as inevitable. Feelings of despair, sleeplessness, social isolation, and physical illness may plague the caregiver in this stage. In the fifth grief stage, caregivers fully accept the imminent death of the patient. They live each day as best as possible, relishing the thought that the demented spouse, although impaired, is still alive and offers companionship, if not conversation. When a demented spouse dies, the caregiver initially feels a relief, because constant caregiving chores end. For a while, feelings of depression may even diminish. But as months pass after the patient dies, depression actually begins to increase in many caregivers. Why is not fully known. Many caregivers continue to attend support groups long after their loved one has died. One study found, in fact, that 10.2% of spouses continued to suffer from major depression for as long as three years after their husband/wife died . What determines the amount of grief felt by a caregiver? Research tell us that caregivers who place their loved ones in a nursing home experience far greater grief than those caregivers who have a loved one die at home . Also, caregivers who experience the most burden from caregiving seem to have the most grief when the patient dies. If the caregiver bonded affectionately with the patient , then grief is less at the time of death. But if there were feelings of ambivalence and guilt between the caregiver and care recipient, then the caregiver feels more grief at the time of death. Caregivers who obtain support and comfort from family and friends at the time of death seem to feel less grief than caregivers who stay isolated. For example, daughter caregivers feel less grief if at first, they get support from a parent , and then obtain support and comfort from widowed friends. Spouse caregivers who talk with others a great deal about the death of their spouse find that, a year later, they think less frequently about the spouse's death . If caregivers feel anger or guilt toward the patient, these feelings will make it more difficult to prepare for the eventual death of the patient. Many caregivers feel guilt when they place their loved one in a nursing home. These caregivers have more grief burden because of the guilt . Guilt may be felt by the caregiver because they feel they are not being caring enough, or maybe that they could have done something to have prevented a nursing home placement. Caregivers also feel anger for varied reasons. They may be angry at the patient who makes life difficult. They may be angry at other kin who do not do their share of caregiving. They may be angry at a social system that seems to place economic hardship on the patient and the caregiver. Safety Issues In the early stage of Alzheimer's disease, patients generally don't present safety problems. But because of the nature of the disease's progression, those in the later stages of Alzheimer's do present safety problems. For example, many early-stage Alzheimer patients can still safely drive a car. But by three years after diagnosis, more than 50% give up driving. Following are hints to help you, the caregiver, keep your loved one safe. 1. Alzheimer patients are prone to falls. Floors should be kept clear of loose items. Remove scatter rugs. Roll up lamp cords. Roll up extension cords. Move furniture from walking areas. Place tape on sharp furniture edges. 2. Put decals on sliding glass doors so Alzheimer patients don't accidentally attempt to walk through them. 3. Often, Alzheimer patients try to hide objects. Ovens, burners, and garbage disposals are favorite hiding spots. You may want to consider putting a lock on the oven door, and disconnecting the garbage disposal. 4. Never leave an Alzheimer patient alone in a car. They may get caught in the power windows, release the brakes, or accidentally start the car. 5. Store all medicines, solvents, and cleaning supplies in locked drawers and cabinents. 6. Consider removing the lock tumblers from a patient's room to avoid having them accidentally lock themselves in their room from the inside. 7. Keep clotheslines high enough that a patient can't walk into them. This may prevent a fall or even prevent them from choking. 8. Alzheimer patients have a reduced ability to feel pain. Many patients are unable to speak, so they cannot tell you they are in pain. Therefore, never feed a patient food or liquid without testing the temperature first. Also, always test the water temperature before exposing the patient to shower or bath. 9. Some patients can be frightened by the jets of water from a showerhead. Consider replacing the jet spray showerhead with one that gives off a fine spray. 10. Make the shower or bath tub a safer place by installing grab bars in the shower and bath to prevent falls. Invest in a sturdy bath or shower seat, which will allow a patient to bathe while sitting down. Also, consider a rubber, non-slip bath or shower mat with special suction cups. 11. Placing outlet covers on electrical sockets will help prevent a patient from receiving an electrical shock , should they stick a piece of metal into the outlet. 12. Alzheimer patients cannot see well in the dark. Provide night lights in walking areas and at the top of stairs. Provide low level table lighting for night use. Consider putting a safety gate at the top of stairs at night. 13. Many Alzheimer patients wander. Remember to keep upstairs windows locked. Sliding glass doors can be locked by putting a small board in the sliding track. You might want to consider using a red stop sign on the door. Research has shown that red is one color that patients do see well. 14. Alzheimer patients fatigue quickly. They seem to have the most energy in the morning and early afternoon hours. As darkness approaches, they become irritable and may display obstinate behaviors. often, they spend the night awake and wander about. This is referred to as " sundown syndrome ". A baby nursery monitor in the patient's bedroom will allow you to hear the patient if he or she begins to stir during the night. 15. Sundown syndrome can be eased for Alzheimer patients by making certain they receive regular exercise. Frequent walks outdoors in the bright light not only provides exercise, but it also exposes the patient to much needed sunlight. Research has shown that patients sleep better and longer if they receive adequate daily sunlight exposure. Bright light increases the secretion of melatonin in the brain. Melatonin regulates the daily rhythms of sleep, body temperature, blood pressure and heart rate. Melatonin is produced more as darkness approaches and reaches peak production sometime in the early morning hours. Research has also found that many Alzheimer patients have low blood levels of melatonin, so it is even more vital to increase melatonin production by bright light exposure daily. 16. Consider removing mirrors from a patient's room...some patients are unable to recognize themselves in a mirror. They may think a stranger is in their room. Try to fill the patient's room with photos of people and events that stir up pleasant memories. Sleeping Problems Alzheimer patients do not sleep well. They spend less time in deep,relaxing sleep. They also dream less. Many patients sleep during the day and are awake at night. The normal rhythm of sleep and waking becomes disordered. There are many reasons for the altered sleep pattern. The main reason is biological. Amyloid beta protein, which is found in alzheimer brains, causes disrupted sleep-wake cycles when injected into normal animals. Pain may keep a patient awake. If sleep disturbance is chronic, the patient should get a full medical evaluation to rule out medical causes for sleep loss. If a patient is depressed, he or she may have trouble falling asleep. A physician should assess your patient for depression. If your physician finds evidence of depression, he or she may prescribe an antidepressant-sedative to help. Stimulants, such as caffeine, which is found in many soft drinks, tea, and coffee, may keep the patient from sleeping well. Try to limit your patient's caffeine intake after suppertime. Patients may not sleep well if they are hungry. A bedtime snack such as warm milk may help. There are a variety of ways to promote restful sleep for patients. Patients who are more active at night may benefit from physical exercise such as walking during the day. Some patients with mild sleep problems may sleep better with over-the-counter sleep medications, such as the antihistamine Benadryl. Consult with your physician first, and if he or she agrees,a trial of Benadryl might be in order. Use Benadryl cautiously, since this drug can increase mental confusion, lower blood pressure, induce blurred vision, or increase constipation and urinary retention in sensitive elderly patients. Check to see if the patient's sleeping room is too hot or too cold. If unsure, ask the patient if the room temperature is comfortable. Some patients become disoriented if a sleeping room is totally darkened. If that is the case with your patient, consider leaving several nightlights on during sleep time. Some patients are afraid of the dark. For these patients, in addition to a nightlight, a softly playing radio may help. Try using the gradual dimming of lights (with a dimmer switch) as a cue to announce sleep time. Sometimes you need to make the bedding more comfortable. Try using quilts on the bed instead of blankets. Quilts are less likely to tangle than blankets. Bed rails should be used cautiously. They may successfully restrain some patients. However, other patients may try to climb over the bed rails, which could result in an injury. In fact, it is well known that many patients are prone to falls anyway, especially in the advanced stage of the illness. You can use some sort of sensor that emits a chime or beep when the patient moves out of bed. A problem closely related to sleep problems in alzheimer patients is "sundown syndrome". Many patients behave well during the day,but by day's end, they become fatigued,and this makes many patients tired and irritable. Patients with sundown syndrome may be very difficult to feed at dinner, at which time they may be irritable,abusive,and refuse to eat. Patients also become more cognitively -impaired. Thinking and remembering are more difficult for them when they are tired. Sundown syndrome has a variety of causes, including certain cardiovascular conditions, drugs, and dehydration. Some studies have shown that daily exposure to daylight is the single best way to normalize sundown syndrome in Alzheimer patients. (Dressing the patient for outdoors should not require any special consideration beyond the normal way one dresses for existing weather conditions.) If possible, try to expose the patient to some gentle outdoor activity each day such as taking a walk. Remember to include periodic rest breaks for the patient. NOTE: In planning exercise for your patient, it is extremely important to check with the patient's physician. Make sure there are not underlying medical problems that would prohibit exercise. Wandering Problems Wandering is common among Alzheimer patients. It is estimated that more than 50% of Alzheimer patients tend to wander. Although agitation is often associated with wandering, non-agitated patients may also wander. As dementia becomes more severe, wandering tends to increase. Wandering away from home can result in serious consequences. The National Alzheimer's Association offers a program called Safe Return to caregivers and extended care facilities. You only need to register once to remain a member for the life of your patient. This U.S. government-funded program is offered for a one-time fee of $40. A discussion of the Safe Return program follows this section. Why do some patients wander? What can be done to help avoid this problem? Boredom is often the cause. Finding interesting activities to fill your patient's time may stop his or her wandering. Your patient may be searching for familiar objects. For an Alzheimer patient, familiarity is comforting. Familiar objects such as favorite pieces of furniture, clothing, and pictures should adorn their living area. Extroverts wander because they have been social all their lives. They continue to enjoy going places and meeting other people. These patients are continuing to live their lifelong habits. Try to involve this type of patient with group activities that can fill their need to socialize such as those offered at adult day care centers. Stress causes some patients to wander. Look for the triggers in your patient's environment that creates stress. See if you can avoid those triggers. Possible stressors might include change in routine, excessive noise, or exposure to unfamiliar people. Fear may cause your patient to leave the immediate area. Your patient may misinterpret a sound or sight. He or she may be trying to get away from it as a way to seek security and safety. If you believe that your patient is hallucinating (seeing or hearing things that are not there) make every effort to keep the patient in sight at all times by someone in your household. Patients may wander if they need to go to the bathroom but do not know or remember where it is. You can help by setting up a regular bathroom schedule that works best for your patient, such as every two hours. Clearly mark the bathroom with a large sign and a picture of a toilet. What are some of the dangers of patient wandering? You can make your best effort to safeguard your own home for your patient, but if he or she wanders into the neighborhood, there are endless dangers. Swimming pools, yards cluttered with toys and lawn equipment, or unlocked garages with tools and poisonous liquids. Alert your neighbors to a potential wanderer. Ask them to call you immediately if they see your patient outside of the boundaries of your home. Other dangers include: Getting lost. Attach ID tags to your patient's clothing and include identification and your address and phone number in your patient's wallet. Bumping into objects. Patients increase their chances of injury and falls if they are bumping into objects because they are in an unfamiliar surrounding. What are some preventive measures I can take if my patient is a wanderer? Doors and doorknobs can be a safety problem. Your patient may not realize that a door is an exit. Here are several solutions. To hide a doorknob, use special door knob covers,such as those listed in the wandering products section. Hang a picture over a doorknob to disguise it. Use a product like "the stopper" which easily attaches to doors and discourages entry out. See the wandering products section. Obtain a medical bracelet for your loved one. Have the ID bracelet engraved to read, "I AM AN ALZHEIMER PATIENT." Provide the caregiver's address and telephone number. (Keep area code changes up-to-date.)ID bracelets are available at our Safety Products section, custom engraved. Tell friends and neighbors and the police department that you have an Alzheimer patient at home. If they see your patient away from your home unaccompanied, they will know immediate action is necessary. Give the neighbors your telephone number, especially if it is unlisted. What is the Alzheimer Association's Safe Return program? Safe Return is the only nationwide identity program for Alzheimer patients. The program operates through the National Alzheimer's Association. Since 1993, more than 72,000 patients have been registered. More than 97% of registered patients who have wandered away have been located and returned to their families. Joining Safe Return before your patient begins to wander is a sound idea. Once you register with the program, you supply the National Alzheimer's Association with a photograph of your patient, which becomes part of a national photo information database.You will receive wandering behavior education and training along with the telephone number of a 24-hour toll-free emergency crisis line.Once a patient is reported missing by a caregiver or family member, Safe Return immediately alerts local law enforcement agencies. How do I register for the program? There are several ways to register or learn more about the program. Choose the one that is most convenient to you.Register for Safe Return by calling the National Alzheimer's Association at 1-800-272-3900. You will be asked to fill out a simple form.Visit the National Alzheimer Association's website at www.alz.org. A list of local chapters is available at that site under "Programs and Resources." You may register through your local chapter.Call Safe Return directly at the toll-free number 1-888-572-8566.As of the year 2001, there is a one-time-only fee of $40. That fee entitles your patient to a lifetime membership. |