Joy A. Glenner

by When Your Loved One Has Dementia

  1. Turn on warm, running water. Do not touch the inside of the sink as you wash.

  2. Wet your hands and wrists thoroughly under the running water. Keep your hands lower than your elbows to keep dirty water from running back down to hands.

  3. Use enough soap to work up a good lather.

  4. Rub your hands together and your fingers between one another.

  5. Drag your nails over the palms of your hand to clean them. Rub for fifteen to twenty seconds (or the time it takes you to sing the “Happy Birthday” song).

  6. Rinse your hands well. Keep them pointed downward.

  7. Dry your hands with a clean paper towel, not cloth. Use the same paper towel to turn off the faucet. Toss it in the wastebasket.

  When should you wash your hands?

  • before and after any type of personal care (yours or your partner’s)

  • before and after meals

  • before handling food

  • before taking or giving medicine

  • after sneezing or coughing

  • after using the bathroom

  Clean/Dirty Areas

  If you have a bout with the flu, cold, or other infectious disease in your home, establish “clean/dirty areas.” You may already do this without thinking. It simply means having a separate area for all laundry (clothes, bedclothes, towels) contaminated with infection. Keep dirty laundry that is not infectious elsewhere. Be sure to wash the two types separately as well.

  Make Your Environment Safer

  Falls: A Danger in the Home for All of Us

  Some 60 percent of all falls occur in the home. About one-quarter of them are a result of hazards that can usually be avoided with careful planning and minor environmental changes.

  Falls are a common reason for early admission to long-term care for all aging adults. The risk is greater for patients with dementia because the disease causes an inability to understand and correctly move about in the environment. Medications can cause confusion, dizziness, and loss of balance, resulting in falls. When this happens to a person with dementia, if the environment is unsafe as well, it is a “fall waiting to happen.”

  Look at all medications. Watch for prescription overdose and potentially dangerous combinations, including over-the-counter medications, herbal remedies, and alcohol.

  Be aware of your own risk for falling. Fatigue or stress can damage your health and safety and can impair your ability to provide safe care. Age-related conditions, such as decreased vision, can affect all of us. Therefore, we all need to be aware of environmental adaptations to maximize safety.

  The most risky areas of a home are the living room, bedroom, and hallway floors and the stairways. Bathrooms and the kitchen are the two most dangerous rooms.

  Box 4-1. Common Falling Hazards

  Most falls in the home result from hazards such as those listed in box 4-1. There are many other types of hazards in our homes which are safe for us but not for a person with dementia. These include stoves, microwaves, kitchen utensils, and shop tools. Examine your home carefully and relocate or lock up any potential hazards.

  All of us need to be aware of fall hazards in our homes and at work and reduce the risks. Remember, outdoor areas can be hazardous as well.

  The Fall Risk Is Greater for Your Partner

  In addition to the changes of normal aging, the person with dementia loses the functions that enable all of us to walk, sit, dress, eat, and use the bathroom by ourselves (see the PALMER symptoms in chap. 1). These losses combined with the normal changes of aging make the environment very unsafe for a person with dementia. The problems a person has with decreased judgment, perception, organization of movement, ability to process information, and reacting appropriately often result in falls. Your partner can’t protect him- or herself; you must protect him or her.

  What You Can Do to Prevent Falls

  Remember, even if your partner has no problems with the environment now, it does not mean he or she will be fine later. Make adaptations now to avoid emergency changes later. There are many things you can examine and perhaps change in your home to prevent falls.

  Lighting. As we get older, we need lighting two to three times stronger for us to see well. Lighting must be uniform and minimize shadows and glare. Older eyes cannot adjust quickly to lighting changes. Therefore, we all should have increased lighting levels and rails on stairs to keep us from falling. Your partner will have even more trouble due to perceptual problems. Sudden lighting changes can cause your partner to fall or to refuse to move on.

  Color contrast and/or texture. A person with dementia may misinterpret a change in carpet color or texture or a change in floor finish as a change in elevation. To prevent falls, it is helpful to provide uniform floor colors between areas your partner uses most frequently. If your partner shuffles or has hypertonia with an unsteady gait, thresholds and floor level changes can be dangerous fall hazards.

  Obstructions and changes in level. Persons with dementia have trouble with spatial perception—judging distances, heights, and changes in level. The person may not be aware of what is around him or her. (Remember, awareness is the basis for memory; see PALMER symptoms, chap. 1.) The person may not see obstacles in the path or may misjudge the distance. For example:

  • The person may misjudge the distance to a chair or its height when sitting and may fall. (To help, furniture should contrast in color with the floor.)

  The person may misjudge and fall on steps without color contrast or with poor lighting. (Add good lighting and some type of a color contrast strip to edges.)

  • The person may be frightened to walk on a shiny waxed floor that he or she perceives as wet or icy. (Reduce or eliminate wax.)

  Seating. Most people with dementia eventually need some help getting in and out of chairs. Make sure seats are not too deep or too high. Chair arms provide leverage and will help a person remain steady. Never use chairs with wheels. Dementia can eventually affect balance. People with moderate or severe dementia may lean to one side. Even sitting upright in a chair or on a toilet can pose a danger of falling. You need non-tip chairs with good backs and sides. You may need belts on raised toilet seats to make your partner secure.

  Wandering, Pacing, and Falls

  People with dementia frequently wander or pace. It is difficult to understand how someone who has lived in the same home for twenty-five years can now trip over a coffee table that has always been in that same spot, yet, because of problems with awareness and perception, the person could trip and fall. There are things you can do to reduce your partner’s risk of falling:

  • Make sure pathways are free of obstacles. Secure extension cords, remove loose rugs, and move intruding furniture.

  • Watch for exhaustion. When your partner is tired, he or she may lose balance more easily and fall. You may need to guide your partner to a chair and sit with him or her to encourage the person to rest.

  • If your partner paces or wanders at night, make sure the lighting is adequate. Eliminate shadows. Falls are more common at night.

  The Role of Medications in Falls

  Medications can have side effects ranging from the need to use the bathroom more frequently (usually at night) to loss of balance and dizziness. These can be normal side effects (talk to your physician and pharmacist to clarify) or side effects from over-medication, combining medications improperly, or combining medications with alcohol. Keep in mind that medications include prescriptions, over-the-counter medications, and herbal medications. Side effects of improper combinations and overmedication can cause serious falls.

  How to Prevent Other Types of Accidents in the Home

  There are many other types of hazards you need to remove when your partner has dementia (see box 4-2 for more examples). You need to:

  • Secure the stove by removing burners or putting an on/off switch inside a cabinet (turns off electricity to an electric stove).

  • Put “child-proof” latches on cabinets containing dangerous pro
ducts or, if possible, put the products in a part of the house to which your partner does not have access (don’t forget to safety-proof the garage and/or shop area too).

  • Lock doors to unsafe areas.

  • Install alarms on doors, windows, and outdoor gates if your partner wanders.

  • Reduce faucet hot water temperature.

  • Put plastic plugs in unused outlets.

  Box 4-2. How Safe Is Your Home?

  It’s not too difficult to create a safe environment for your family member.

  Olivia invited her sister Yvette, who has dementia, to come and live with her. Once Yvette adjusted to the new situation, it appeared that Olivia’s dining room was going to be one of her favorite places. She liked to sit at one side of the dining room table and look out the large window across the room. She usually fiddled with the small objects Olivia had on display on the buffet or rummaged in the buffet to look for things to hold and move about. Olivia decided it was better to redo the dining room than constantly have to steer her sister to other areas of the house or worry about her favorite dishes and mementoes.

  Olivia moved dishes and other valuable dining room objects to the kitchen and moved unbreakable plastic containers and inexpensive utensils (nothing sharp!) from the kitchen to the dining room. She also added other things Yvette liked to the buffet drawers and shelves: yarn, fabric squares, colorful magazines, postcards, costume jewelry. She changed the items frequently so Yvette had new things to examine. In addition, she added plastic gliders—not wheels—to the bottom of the chairs to make them move more easily on the rug. She put double-sided tape on the bottom edges of the rug to ensure that Yvette wouldn’t trip on it. She put child-proof plugs in unused outlets and taped up (shortened) the cord on the one lamp so that Yvette wouldn’t trip over it. She also increased the wattage of the overhead light so there would be fewer shadows in the evening.

  5 The Necessities of Daily Life

  Getting Things Done with, Not Just for, Your Loved One

  Goal: This chapter will help you and your partner accomplish the basic Activities of Daily Living (ADLs), with the least possible stress. ADLs include eating, bathing, grooming, transferring, walking (or getting about with an assistive device), toileting, continence care, and dressing. (Transferring and walking were discussed in chap. 4.)

  The chapter will help you:

  • understand what excess disability is and how to avoid it

  • understand good nutrition for you and your partner and the unique nutritional and eating concerns for your partner with dementia

  • understand bathing and grooming problems that your partner may have and how to avoid battles while dealing with them

  • deal with toileting and continence care effectively as the disease progresses

  • enable your partner to continue to dress him- or herself for as long as possible

  Understanding Excess Disability and How to Avoid It

  Excess disability is incapacity a person displays that is greater than his or her true disability. Excess disability happens because, for one reason or another, a person with dementia is not doing all the things that he or she is still able to do.

  Think about your own caregiving situation. Could your partner do more than he or she is currently doing by him- or herself? Could your partner perform a task more easily if you allowed more time? Do you do things for your partner just because it seems easier that way? Do you help your partner because he or she seems to be having more difficulty than previously? Could your partner do more if you gave him or her simple, one-step instructions?

  Remember that if you use all those good interaction techniques discussed in chapter 3, you will probably have better luck keeping your partner involved in his or her own ADLs. Those techniques are important to use all the time.

  Your definition of success for your partner must change as the dementia changes him or her. If you do not assess your partner regularly and adapt the amount of help you’re providing accordingly, you may either not help enough or help too much. Either way, you will create an excess disability. If you don’t help enough, the person may refuse to finish the task, may quit before it is done, or may do it incorrectly. If you help too much, the task will get done, but the person will not use his or her remaining skills and may decline more rapidly as a result.

  Always remember: If a person with dementia does not use skills, he or she will lose them. It is truly “use it or lose it” for an Alzheimer patient.

  Betty is caring for her mother, Salina. Betty is the sole support for both of them and must work full-time. Salina attends an Alzheimer day care program five days a week, from 9:00 A.M. to 5:00 P.M.

  Once Salina is up, she dresses and eats breakfast independently while Betty gets dressed herself—at least Betty thinks she does! This morning Betty notices that her mother is not eating breakfast. She encourages her mother to eat, reminding her that they have to leave soon. Ten minutes later Betty checks on her again, and she has eaten only a few bites. Betty is very concerned that she will be late for work and sits down and starts feeding her mother. Is Betty creating an excess disability for her mother?

  Goal: For Betty’s mother to keep functioning as well as possible, given her level of impairment due to AD

  Problems Meeting the Goal

  • Betty is expecting her mother to function as she always has and in the same amount of time.

  • Betty is not aware that her mother has declined because she has not assessed her skills regularly.

  • Betty has not figured out how to adapt tasks for her mother without taking over completely.

  She will not create an excess disability by feeding her mother occasionally, but, if she takes over most or all of the time, she will create an excess disability.

  Approaches to Try

  • Betty should accept that her mother is declining due to dementia. She should realize that she is not failing as a caregiver because her mother can no longer do all she used to.

  • Betty should assess her mother’s skills regularly—all her ADLs, not just eating.

  • Betty should think through how to help without doing too much. She must allow more time and guide her mother step by step. She should do as little as possible but help when needed.

  Nutrition and Eating

  Many ailments common to older adults are due to poor nutrition—inadequate intake of essential nutrients, dietary fiber, and water. As you care for your partner with AD, you must take care of yourself as well. You cannot provide good care if you have poor health due to poor nutrition.

  A balanced diet is not difficult to carry out. Check with your physician about any additional dietary restrictions you or your partner should follow. A balanced diet should include:

  • fish, legumes (beans), nuts, or dairy products as a substitute for meat as often as possible

  • lots of vegetables and fruit

  • whole grain breads and pasta (fiber)

  • six to eight glasses of water or other fluid every day

  • sparing amounts of red meat (lean only), foods high in saturated fat, sugar, and salty foods

  A balanced diet will help you and your partner:

  • maintain muscle and skin tissue

  • maintain energy level

  • maintain a healthy immune system

  • cope with stress

  • prevent pressure sores

  Poor nutrition is common in persons with dementia because they have difficulty eating and may not eat balanced meals as a result. Even though eating is a habitual skill, something we have done all of our lives, it takes concentration and attention. It can be complicated when there are different items to eat in front of us and different types of utensils to use. In addition, different things we eat feel differently in the mouth and must be chewed and swallowed differently. Choking problems are all too common in patients with dementia. Never leave your partner alone when he or she is eating.

  You may want to pat yourself on the back jus
t because you manage to get your partner to eat something, but it is very important that the person eat a balanced diet.

  Goals

  • continued enjoyment of meals

  • safe eating: avoidance of choking

  • weight maintenance

  • adequate calorie/nutrients, especially protein

  • vitamin/mineral supplementation

  • adequate water (the ability to store water declines with age)

  • good oral hygiene

  • avoidance of urinary tract infections, and constipation/diarrhea

  Problems Meeting Goals

  • You may be forcing food, scolding if the person does not eat, pressuring the person to eat, or rushing the person.

  • You may not be paying enough attention to chewing and swallowing, which can cause choking.

  • Your partner may be finding the environment noisy or confusing.

  • Meal times may be inconsistent.

  • Your partner may be facing too many choices.

  • Your partner’s glasses, dentures, or hearing aids might not be in place or not fitted properly.

  • Your partner may be unable to understand how to use utensils.

  • Your partner may be unable to recognize food as food or to recognize the type of food.

  • The person might be “pocketing” food (keeping it in a corner of the mouth instead of swallowing).

  • The person may be having trouble transitioning from chewing to swallowing because these require two separate facial movements.

  Approaches to Try

  Reminder: Meals should be pleasant, attractive, flavorful, and safe. Do not adapt or assist with meals more than is needed. Even mildly impaired patients, however, should probably not eat alone. They usually do not need adapted food or assistance but monitor them for any signs of a decline in functioning.

  • Plan meals and make shopping lists. Prepare food ahead of time and freeze some of it. This will help you find the time for nutritious meals, reduce your stress, and keep you from buying fast food (at least most of the time!).