Handling Difficult Situations

What to Do When the Patient Refuses to Go to the Doctor

  • Schedule the visit for them and accompany them. Be firm in the way you present the appointment and present it as fact, not choice. (We are going to the doctor this morning.”)
  • Tie something the person enjoys doing to the visit to the doctor. (“After we see the doctor, we can go to lunch.”)
  • Depending on the individual, you may want to inform them of the appointment the week before, the day before, the hour before, or just after you get into the car.
  • Use another reason, other than memory loss, for the check-up, (e.g., check your blood pressure, flu shot, get prescription refilled, etc.).
  • Enlist the aid of other family members or trusted friends and advisors who may be able to convince the person that a check-up is needed.
  • Validate their fears and agree with their arguments. (“I know you are healthy and don’t feel you need to see a doctor, but I would feel so much better knowing you have a clean bill of health.”)
  • If the person is afraid of an Alzheimer’s diagnosis, reassure them that there are many other treatable things that cause memory loss.
  • Try not to argue about or have lengthy discussions that will only increase the person’s resistance to going.
  • Tell your loved one that you need to go to the doctor and ask them to come along. (The caregiver can get blood pressure checked or something simple at the actual visit to make the person feel more at ease.)
  • Tell them that the insurance company is requiring a check-up for insurance renewal.
  • Ask the physician to call them to schedule an appointment.
  • Call ahead or write down your concerns (specific signs and symptoms you have noticed) and give them to the doctor ahead of time if you don’t want to discuss them in front of your loved one.
  • Try to get the person’s appointment for the first appointment of the day (to reduce waiting time) or at the time of the day when the person is least agitated.

What to Do When Handling the Finances Is No Longer Possible

  • Remember, money represents independence. It is very difficult to give this responsibility up willingly!
  • If person has typically paid the bills, set a special time to go over bills together or arrange a time to “check” them before they are mailed.
  • Get important legal documents, like POA, as soon after the diagnosis as possible so the person has control in planning. Arrange your POA at the same time so the person does not feel “singled out”.
  • It may help to leave a written reminder for the person, such as, “My son, John, takes care of my check book.”
  • Tell the person that you have arranged for a financial planner to handle all check books in the family to remove that burden from everyone.
  • Arrange for a PO box and have mail sent there to avoid confrontation when bills arrive or to screen for solicitation mail that might become a problem (e.g., contests, donations).
  • Arrange for “automatic payments” via bank to all vendors to allow moneys to be automatically withdrawn from the person’s checking account each month.
  • Avoid arguments at all costs!
  • Assure that the person always has a small amount of spending money.
  • If the person insists on having checks, get checks stamped as “voided” from the bank.
  • Establish “tabs” with trusted, regular merchants so that the person can still shop.
  • Be prepared for accusations that you’re “stealing” from them.

What to Do When the Patient Can No Longer Drive Safely

  • Try a frank discussion with the person about a driving problem you noticed. Be tactful and gentle in your approach, not confrontational.
  • Arrange for someone else to drive.
  • Get support and agreement from others (family, physician,, clergy, attorney, friends, etc.)
  • Let the physician (or advisor the persons trusts) take the lead in telling the person they can no longer drive; have them write a letter to this effect, or prescription.
  • Have insurance agent provide written documentation that the person will no longer have insurance coverage.
  • Blame not being able to drive on the long wait for test results or the insurance company, not on the person’s inability to drive.
  • Do not leave the person in the car alone while it is running or the keys are in the ignition.
  • Co-piloting is not recommended. There is not enough time to cue someone in a hazardous situation.
  • Reduce the need to drive (e.g., arrange for prescriptions/groceries to be delivered, for friends to come over regularly, to drive the person to regular stops or to take the person out regularly, etc.)
  • Don’t assume that taking away a driver’s license will discourage driving. Be prepared.
  • Don’t put off the issue if the person is a danger to themselves and others. The caregiver could be held legally liable if they knowingly allow a demented person to drive and they get in an accident.
  • Get the BMV to revoke the person’s license. Call our helpline (888-303-0180) or read Legally Suspending a Patient’s Driving Privileges for guidelines.
  • Experiment with ways to distract the person from driving (e.g., someone else should drive because taking new route, bad driving conditions, medications make the person too drowsy, you want the person to enjoy the scenery, etc.).
  • Control access to the keys.
  • File down key so that it no longer works or put a wrong key on the person’s key ring.
  • Disable the car (remove the distributor cap or starter wire, or instal battery with “on/off” switch).
  • Move the car so it is out of the person’s vision (park down the street, etc.).
  • Consider selling the car.
  • Be firm and positive about not driving. Don’t waiver in the decision, but avoid arguing about it or giving long explanations for why the person cannot drive. (Say something like, “Until the doctor is finished running tests, you cannot drive” OR “because you are on medication”, etc.) Spend your time and energy helping to preserve the person’s dignity by focusing on the things they can still do an enjoy.
  • Get a non-driver State ID card for the person for check cashing and other identification needs.

What to Do When Your Loved One Is Unwilling to Move

  • Try to determine the overriding reason behind their resistance to moving, e.g., denial, fear, pride, a “stubborn personality”, not being ready, etc. Understanding “why” may help you choose the most appropriate strategy for overcoming their resistance.
  • Involve the person, as much as they’re comfortable with, in planning for the move and give them as much opportunity as possible to make choices, if there are choices. (“Let’s go look at some of the apartments and you can choose whatever place you like the best. Or you can move in with us. I’ll go along with whatever you decide.”) Keep in mind that there is a difference between making the decision, which the caregiver might have to do, and participating in the planning, which the impaired person can be encouraged to do. If a person is too impaired to understand what is happening, it may be better to make the move without the added stress of involving them in decisions about the move.
  • If it’s early in the disease, try explaining the need to move in a reassuring way, but avoid getting into lengthy discussions or explanations, which often increase their resistance. (“Dad, you left the stove on yesterday, and I want you to be safe.”)
  • Use another reason, other than Alzheimer’s, for the move. (“Mom, it’s just not safe for you to live alone in this neighborhood anymore.”)
  • Understand and acknowledge the person’s feelings from their perspective; they’re giving up their independence and it’s extremely hard for them. Enlist their support in the process. (“I know it’s hard to leave your house and it will be an adjustment for both of us. Thank you for helping me make this move as easy as possible.”)
  • Play up the advantages of the move. (“Since you don’t have a car, we’ll be able to take you anywhere you want to go if you move in with us.” Or, “At the senior apartments, you won’t have to worry about shoveling snow.” or any household chore you know they particularly dislike.)
  • Enlist the support of the person’s physician, perhaps even asking them to write a letter (e.g., “As you know, you have experienced short-term memory loss for some time now as well as – any other medical condition. For your health and safety, I’m prescribing a comfortable apartment for you at _______ where you will be able to get some additional support but keep your independence.”) This will provide the person the opportunity to read and re-read the explanation and removes the burden from the family.
  • It is often helpful for a person with dementia to move before their illness becomes too severe so that they can better adjust to their new environment.
  • Be prepared for a period of adjustment. Help them by putting cues, favorite items, and orienting material in the new location.
  • If appropriate, consider including this decision in the early stage planning process. Open, early, and continual communication can help the person with dementia and their family to agree on a course of action before a crisis occurs.
  • Slowly introduce the person to the new location several times before the move occurs.

If you need help determining whether your loved one is able to live alone, print and answer this self-evaluation questionnaire.

Procedures to Legally Suspend an Individual’s Driving Privileges

Driving Assessment

The person’s doctor can write a doctor’s order for them to have a driving assessment done. This is frequently a service offered through the occupational/rehabilitation departments of major hospitals. In South Bend and surrounding areas, Memorial Hospital’s Rehab Department performs this service. The phone number is 574-647-2605. They will provide a very thorough assessment (3-4 hours). Families should verify payment options in advance of getting the test to assure they’re able to afford the cost and determine how much of it Medicare will pay for. The results of the tests are forwarded back to the referring physician. If the person does not pass the test, it is incumbent on the physician to take further steps to revoke the license, i.e., writing a letter to the Bureau of Motor Vehicles or completing the form, “Request for Driving Ability Review” to request the license be legally revoked.

Bureau of Motor Vehicles

Someone in the family (or physician or others) can submit the “Request for Driving Ability Review” form (available online at BMV: http://www.in.gov/bmv/3103.htm) (along with a physician’s letter, if possible) to the Bureau of Motor Vehicles at the below address, requesting a driving ability review and stating reasons why. This information should include some examples of the person’s unsafe driving because of their medical diagnosis and why the person is not safe continuing to operate a car. The information must be signed, however, it will remain confidential, and the author will not be revealed to the person with dementia. The address is:

Indiana Bureau of Motor Vehicles Credential Programs
ATTN: Medical Review Clerk
100 N. Senate Avenue, Room N402
Indianapolis, IN 46204
(888) 692-6841

It is recommended that this information be sent by registered mail, return receipt requested.

  1. BMV will send a letter to the person with dementia, stating that their ability to drive has been questioned, but it will not say by whom. There will also be medical forms enclosed that the person must take to their physician to be completed within 30 days and returned to the BMV.
  2. If the papers are not completed within 30 days, the license will automatically be revoked for failure to submit an acceptable medical report. If the forms are completed on time, a doctor on the BMV Medical Advisory Board will be assigned to review the case and make the final decision whether to suspend the license or not. The individual will then be notified in writing that their license has been revoked.

NOTE: It is sometimes helpful to get Police or Sheriff involved. In some cases, law enforcement is willing to speak with the doctor directly, or they will contact the BMV to revoke the license.

Dealing with Activities of Daily Living

General Tips to Assist with Activities of Daily Living (ADLs)

Personal care activities, e.g., eating, bathing, hygiene, dressing, grooming, toileting

  • Remove factors of “excess disability” (anything that hinders the person from being able to function, e.g., pull over clothes) i.e., find ways to simplify and KEEP IT SIMPLE.
  • Recognize their importance to self-esteem.
  • Always focus on the person, not the task; don’t expect perfection.
  • Stick to the same routines, habits, preferences.
  • Do something pleasant a half-hour before (e.g., massage)
  • Allow the person to do as much by themselves as possible (Do “with” not “for”)
  • Begin conversationally before launching into a task.
  • Let them know that’s going to happen before each step.
  • Simplify steps, one at a time.
  • Don’t rush.
  • Give choices but limit choices (Not, “what do you want to eat?” Instead, “Do you want eggs or cereal for breakfast?”)
  • Prepare for the activity in advance and have everything you need to assist the person.
  • Demonstrate the activity, if necessary, and give multi-sensory cues (taste, smell, etc.)
  • Modify for increasing impairment – Encourage, Cue, Assist, and Do

Bathing and Grooming

  • Understand/assess/respect psychological factors such as fear, privacy, and vulnerability issues. Fear of water is common.
  • Assure dignity by assuring privacy. Use privacy screens. Close doors. Make sure the individual is covered as much as possible.
  • Determine the best time of day for your loved one (when they’re most relaxed, least interruptions) and develop a routine around that time. Be prepared to try again, if necessary.
  • Try to observe personal preferences (before disease) as best as possible (e.g., bath vs. shower, morning vs. evening)
  • If the individual is still able to read and follow notes, write reminders for them, e.g., “Mary needs to bathe on Monday, Wednesday, and Friday.”
  • Avoid unnecessary explanations, reminders, and discussion about the need to bathe. Be matter-of-fact. Don’t ask if they want to bathe in a “yes” or “no” form. Say simply, “It’s time for your bath now.”
  • Break each step into smaller steps; involve the person in each step, as possible, to give them control.
  • Use appropriate products and adaptive safety equipment (e.g., bath benches, hand-held shower heads, bath bars, non-slip devices)
  • Observe safety factors like water temperature.
  • Prepare bathroom in advance with all supplies. Cover mirrors and windows if necessary.
  • Make sure room temperature is comfortable and the bathroom is warmed up in advance. Persons with AD tend to be very cold most of the time. Use warm towels, robe, by putting in dryer first.
  • Let the person feel the water before they get into it. Gently pouring water on their hands may reassure them.
  • Coach and cue the person to participate and use distractions, like music or snacks, if necessary.
  • Focus on pleasantness of interaction, not just cleanliness, e.g., pleasant room fragrance. Try candles and softer lights. Use scented soaps, bath oils, or bubble bath.
  • Modify your approach as impairment increases (encourage, cue, supervise, assist and do) – evaluate each of the changes carefully. Never leave later-stage patient in bathroom alone.
  • Consider a sponge bath while person is on commode or “waterless” soap, if all else fails.
  • Dont get upset or confront the person if they refuse a bath. Try again later when they are less agitated.
  • Keep hairstyles simple and quick to style, or take the person to hairdresser for hair care. This is usually enjoyable for them and one less task for the caregiver.
  • Try applying after shave or cologne to entice.
  • Provide mouth care after each meal. Yawning in front of someone can help trigger opening mouth.
  • Use child-sized item to reduce anxiety (e.g., hairbrush, toothbrush, combs, etc.)
  • Try oral swabs soaked in mouthwash.
  • Use soft bristle hairbrushes, large tooth combs, spray detanglers.

Dressing

  • Recognize the importance of clothing for comfort and self-esteem.
  • Select easy-to-wear clothing – avoid tight-fitting clothes, zippers, buttons. Replace buttons with velcro.
  • Limit the number of clothing choices – only a few outfits in the closet at a time and store away off-season clothing.
  • Put complete outfits on one hanger.
  • Make separate areas for dressing and undressing.
  • Lay items on the bed in the order that they should be put on.
  • Accept change in dress and grooming as the person’s ability to make decisions changes.
  • Remove the hamper from sight to prevent access to dirty clothing.
  • If the person continually wears the same thing, create a reason to change, “you look so nice in blue…” and then remove the old clothes after they change when the person is not watching.
  • If the person is reluctant to change or undress, create a reason, e.g., “you’ll probably feel so much better in clean, fresh clothes … this new shirt sure smells nice.” Or “let me help you put on these fresh clothes so that we can go to the ice cream parlor.”
  • Choose washable, no iron clothing that is one size larger than needed.
  • Provide visual cues to help them change or dress, e.g., clean pants (“Mmm, these pants must have just come back from the laundry; they smell so nice!”)
  • Don’t argue over, or worry about, how the person looks – choose your battles! (Don’t get hung up on coordination issues)
  • Don’t rush them.
  • Buy duplicates, if possible, of favorite clothing.
  • Try privacy screens to enhance feelings of security.
  • Avoid “over the head” items to decrease anxiety.
  • Remove soiled clothing immediately.
  • Contrast the colors of top and bottom to provide a visual cue to lessen difficulties with toileting and undressing.
  • Start undressing by taking off shoes – it’s less threatening than taking upper clothing off.
  • Undress the person from under a covering, such as wrapping a towel around their waist before removing pants.
  • For total hands-on care, always explain each step of what you’re doing (but avoid long explanations or arguments). Speak conversationally in between. (“Boy, it sure is nice outside today. Maybe you can sit outside for a while after you’re dressed.”)

Eating

  • Limit the number of food choices.
  • Use smells or small tastes to encourage eating (e.g., fresh coffee brewing, bacon frying, increased spices and flavoring)
  • Use finger foods that are easy to eat.
  • If the individual has been accustomed to cooking, they might enjoy helping with preparations, e.g.,. setting table, stirring food, folding napkins, etc.
  • Eliminate noise and distractions while eating.
  • Follow the person’s previously established dining patterns and preferences as much as possible.
  • Use solid colored dishes, cups, tablecloths. Contrast the color of the dishes and tablecloth so the person can clearly see where the dish ends and the table begins.
  • Follow simple rituals and routines.
  • Be aware of safety hazards, e.g., hot plates.
  • Use adaptive utensils and plates, as appropriate, and encourage independence (e.g., bowl instead of a plate, spoon instead of a fork).
  • Provide snacks, water, and high-calorie drinks, plain in sight, throughout the day to supplement meals, if needed. Ask the doctor whether food supplements will help.
  • Remove utensils, when appropriate – esp. knife.
  • Avoid foods that are high in caffeine, especially after 3:00 p.m., e.g., tea, coffee, chocolate, soda.
  • Make sure the person is hydrated (6-8 cups of liquid daily).
  • If the person is restless, try smaller, more frequent meals.
  • Verbally guide the person through the meal.
  • Be alert for signs of choking.
  • Notify the doctor if the person is gaining or losing weight very rapidly.
  • When eating out, choose quiet, familiar, well-lit restaurants and go at the restaurant’s least busy time. Try to visit the restaurant on the same day of the week at the same time of day.
  • To avoid a potential toileting problem in public, carry a card that says: “Man (woman) in Ladies (Men’s) Room” and post as needed.

Toileting

  • Don’t accept incontinence as an inevitable part of the illness. Get an assessment from your doctor and seek treatment.
  • Take the Alzheimer’s person to the bathroom on a schedule (e.g., every 2 hours) or give regular reminders.
  • Be aware of non-verbal signals that the person needs to use the bathroom.
  • Keep the bathroom door open, put a sign or picture on the door to the label room (e.g., picture of toilet or tub), keep a well-lighted pathway at night.
  • Cover mirrors and windows if necessary. Use the privacy screen.
  • Remove any obstacles; assure that clothing is easy to remove and that there is an easy path to the bathroom.
  • Consider posting a large sign reading “toilet” over the commode, use a colored rug on the floor and colored toilet seat to provide contrast to the toilet area, and remove waste cans and plants from the floor.
  • If a person resists entering the bathroom, put on a radio or tape player with their favorite music and dance or march in with them!
  • Cover sinks and keep radiators covered with colorful printed covers.
  • Keep records of when person uses the bathroom.
  • Encourage fluids early in the day; decrease or eliminate fluids before bedtime.
  • Eliminate caffeine, including chocolate, after 3:00 p.m.
  • Use appropriate products, such as adult pads and briefs, mattress covers.
  • To avoid a potential toileting problem in public, carry a card that says: “Man (woman) in Ladies (Men’s) Room” and post as needed.

Medications

  • Keep track of all medications. In early stages, a sectioned pillbox and a checklist might help. Call our helpline to ask for information on other medication dispensing systems.
  • Notify all physicians involved in a person’s care of all meds taken to prevent possible interactions.
  • Be aware of medication side effects. If serious side effects occur, report them to their physician.
  • Don’t rely on their word that medication has been taken. Watch to be sure it is taken on time and in the right amount
  • Store medications in a safe place to prevent accidental overdosing.
  • Don’t change doses without consulting a doctor.
  • If swallowing is a problem, crush or mix with soft food like pudding, mashed potatoes, apple sauce.
  • Use a pharmacy that delivers medications (one less errand to do)

Managing Behavior Problems

Managing behavior problems of people living with Alzheimer’s and dementia

How would you feel if:

  • You are asleep in a chair at home when suddenly you are awakened by a person you have never seen before trying to undress you?
  • You are feeling bored and restless at home, so you decide to go out for a walk but you find that your front door has been locked and a stranger appears and tells you to go and sit down?
  • You are trying to get dressed, but it seems that someone has stitched up the sleeves of your jumper, removed some buttons from your jacket and hidden your shoes?
  • You are feeling sick and lying in bed, but no one is around you to help you go to the toilet, and so you wet the bed?
  • Someone approaches you in the street and starts speaking to you in a foreign language? You tell them that you don’t understand, but they keep on repeating themselves.
  • You are feeling really angry about something, but nobody around you will take your grievance seriously and they keep telling you that everything is fine?
  • You open your front door to a stranger who tells you that it’s time you had a bath?
  • You’re on vacation with your friends, in an area you’ve never visited before. Suddenly you realize that you have become separated from your friends and you are lost in strange surroundings, with only a sea of strange faces in front of you?
  • You’re late for picking up your children from school and you’re in a hurry, but the person with you won’t let you go?

Communicating through behavior

  • Persons with AD retain their desire to control their environment and their lives.
  • Memory loss creates fear and uncertainty; these feelings may trigger challenging behaviors
  • Persons with dementia have lower stress (frustration) level than normal
  • Behavior is a form of communication
  • All behavior has meaning. It may not make sense to the caregiver, but it has a purpose for the person with AD
  • Often, both caregiver and patient are caught in a cycle of fatigue, which magnifies challenging behaviors
  • Try to interpret behavior as you would a “foreign language”

T–E–A–C–H: Strategy for responding to problem behaviors

Task, Activity

  • Too complicated?
  • Too many steps combined?
  • Not modified for increasing impairment?
  • Unfamiliar?

Environment

  • Too large?
  • Too much clutter?
  • Too much stimulation?
  • Too little stimulation?
  • No cues or orientation?
  • Poor sensory judgment?
  • Unstructured environment?’
  • Unfamiliar environment?

Attitude of Caregiver

  • Were you speaking for them?
  • Ignoring them?
  • Approaching them suddenly or from behind?
  • Rushing them?
  • Were you being vague or unclear?
  • Expecting perfection or consistency?
  • Were you arguing, correcting, criticizing, saying something like, “don’t you remember I told you…?”
  • Using “reality orientation”?
  • Asking for factual information or “quizzing” them?
  • Going on and on with logical explanations for whatever?
  • Bossing them around or treating them like a child?

Communication Problem

  • Person unable to express thoughts/feelings/needs to caregiver?
  • Person unable to understand what caregiver is saying or doing?
  • Person feeling frustrated? confused? patronized? anxious? afraid? etc.
  • Person feeling isolated and left out?Person feeling disoriented?
  • Person doesn’t understand, or misinterpreting, the situation at hand?

Health or Physical Concern

  • Effects of medications?
  • Impaired vision or hearing?
  • Acute illness?
  • Dehydrated?
  • Constipated?
  • Depressed?
  • Tired?
  • Has a physical need (e.g., bathroom)?