Stages of Alzheimer’s Disease

There are many models used to explain the disease process, some using only 3 stages with others using 7 or more stages.  Each is useful in it’s own way.  We will present a model with 4 stages indicated.

As with all models, this information is provided for instructional purposes only.  Persons with Alzheimer’s disease or dementia may exhibit symptoms from more than one stage at any given time.  For clarification about the progression of the disease, please contact our toll-free Helpline at 888-303-0180.

Stage 1 – Forgetfulness

Symptoms

  • Memory loss of recent events begins to affect job performance
  • Vague complaints
  • Less tolerant
  • Angry
  • Less energy
  • Slow to react and learn
  • Forgets what he/she was just told to do
  • Loss of spontaneity, spark or zest for life
  • Loss of initiative – can’t start anything
  • Mood/personality changes – anxious about symptoms – keeps to self
  • Poor judgment – makes bad decisions
  • Takes longer with routine chores
  • Trouble handling money or paying bills

Examples

  • Forgets which bills are paid
  • Forgets which cards are played in bridge
  • Forgets phone numbers and grocery list
  • Difficulty driving a car
  • Difficulty cooking or following recipes
  • Difficulty maintaining a checkbook
  • Loses things
  • Arrives at wrong time or place, or constantly rechecks calendar
  • “Mother’s not the same – she’s withdrawn, disinterested”
  • Appears less outgoing, hides things, gets upset easily
  • Spends all day making dinner and forgets three courses
  • Pays the bills three times over or doesn’t pay for three months

Care

  • Try to understand the person’s anger and confusion (and your own)
  • Offer support in times of frustration
  • Begin to organize and simplify daily routines; structure the home environment for safety

How We Can Help

  • Helpline 888-303-0180
  • Memory loss forum
  • Community referral lists (day care, geriatric assessment, etc.)
  • Caregiver Orientation Series
  • Support groups
  • Website

Community Services Available

  • Area Agency on Aging
  • Council on Aging

Stage 2 – Confused

Symptoms

  • Needs assistance to manage affairs
  • Can’t calculate, understand, concentrate, plan or decide
  • Slow to react or overreacts
  • Can’t cope with failure
  • Self-absorbed
  • Increasing memory loss and confusion
  • Shorter attention span

Examples

  • Not performing activities of daily living such as bathing and cooking
  • Giving money to strangers

Care

  • Be prepared to offer supervision
  • Provide help, but treat as an adult
  • Give one-step directions
  • Limit choices and set routines
  • Remind and repeat gently
  • Encourage strengths but accept some withdrawal

How We Can Help

  • Helpline, toll-free at 888-303-0180
  • Caregiver Orientation Program
  • Family care planning
  • Community referral lists (care, geriatric assessment, etc.)
  • Support groups
  • Website

Community Services Available

  • Respite and time-out opportunities
  • Adult day services and other community resources
  • Area Agency on Aging
  • Council on Aging

Stage 3 – Disorientation

Symptoms

  • Obviously disabled
  • Lethargic
  • Disoriented to time and place
  • Uncertain how to react
  • Poor recent memory
  • Inappropriate behavior problems
  • Problems recognizing close friends and/or family
  • Repetitive statements and/or movements
  • Restless, especially in late afternoon and at night
  • Occasional muscle twitches or jerking
  • Perceptual motor problems
  • Problems organizing thoughts
  • Can’t find right word – makes up stories to fill in
  • Problems with reading, writing and numbers
  • May be suspicious, irritable, fidgety, teary or silly
  • Loss of impulse control/sloppy; won’t bathe or afraid to bathe – trouble dressing
  • Gains and then loses weight or may see or hear things that are not there:  “My daddy is waiting for me outside.  I’m going home.”
  • May have fixed ideas that are not real (delusions)
  • Needs full-time supervision

 Examples

  • Can’t remember visits immediately after you leave
  • Repetitive movements, statements, tapping or folding
  • Sleeps often and awakens frequently at night and may try to jump up and “go to work”
  • Perceptual motor problems, such as having difficulty getting into a chair or setting a table
  • Can’t find right words:  “I used to be a boss big man and now I”m an big old dummy? …”
  • Problems with reading numbers –  can’t follow  written signs, write name, add or subtract
  • Suspicious – may accuse spouse of hiding things or infidelity
  • Loss of impulse control such as forgetting table manners
  • May forget proper place to dress/undress
  • Huge appetite for junk food or other people’s food
  • Forgets when last meal occurred, then gradually loses interest in food
  • Samples of perceptual losses or hallucinations: “There are babies in this house.” “The police are after me.” “I want to go home.”

Care

  • Devise and use memory aids
  • Offer reassurance
  • Approach slowly
  • Explain before doing a task
  • Decipher meanings
  • Relate to feelings, not to words
  • Use touch to communicate

How  We Can Help

  • Helpline 888-303-0180
  • Family care planning
  • Support groups
  • Caregiver Training program
  • Advanced disease program

Community Services Available

  • Respite, in-home, special residential or nursing home care
  • Council on Aging
  • Area Agency on Aging

Stage 4 – Dependency

Symptoms

  • Can’t recognize family or self in mirror
  • Needs assistance with simple tasks
  • Appears apathetic
  • Perception is distorted
  • Physical disabilities
    • Loss of coordination
    • Inability to feed himself or to swallow
    • Greater immobility (may be unable to walk)
    • Seizures
    • Skin breakdown
    • Loss of bowel and bladder control
  • Loses weight even with an adequate diet
  • Little capacity for self care
  • Can’t communicate with words
  • May put everything into mouth or touch everything

Examples

  • Looks in the mirror and talks to own imiage
  • Needs help with bathing, dressing, eating or toileting
  • May groan, scream or make grunting sounds

Care

  • Assist with daily needs
  • Remember that the behavior is not intentional
  • Understand the disease is affecting the patient
  • Ask for support in both practical and emotional matters
  • Look to the community for resources/respite care
  • Nursing home placement may need to be considered

How We Can Help

  • Helpline 888-303-0180
  • Family care meeting
  • Support groups
  • Advanced Disease program

Community Services Available

  • Hospice and nursing home options as appropriate

Living with Alzheimer’s Disease

Coping Techniques

  • Take a break or “time out” when you get frustrated or upset.
  • Let it go.
  • Talk with someone to let out feelings, and seek advice.
  • Laugh – look at the lighter side!
  • Know that misplaced items will turn up.
  • Use calendars, watches, and daily lists as reminder aids.
  • Get help with tasks that are causing anxiety or frustration.
  • Be patient with yourself.
  • Allow more time to accomplish things.
  • Have kinder, more realistic expectations of yourself.
  • Just do the best you can!

Helping Others Understand

The onset of memory loss and/or Alzheimer’s disease can bring up a number of different issues in social and family relationships. Relationship strengths and vulnerabilities may be accentuated. The following are some commonly expressed concerns among people who experience memory loss:

  • Friends and family may not see you day-to-day. Because of this, they may not understand or believe the changes that you are experiencing. They may minimize your memory loss or may look for evidence of memory loss in everything that you do, being overprotective of you.
  • People do not know what to do or say and may withdraw or attempt to help in ways that may not be constructive. On the other hand, some friendships may deepen or new ones come into your life as a result of your circumstances.
  • Historic relationship dynamics may surface more intensely, leading to enhanced closeness or enhanced conflict.

Suggestions to Consider

  • Be upfront with friends and family. Tell them about your memory loss. If you seem comfortable talking about it, they may feel more comfortable with you.
  • Friends and family members ay benefit from receiving information about memory loss and/or Alzheimer’s disease so that they may have a clearer understanding of some of the changes you are facing.
  • Encourage friends or family who seem to have a hard time dealing with the changes you are experiencing to attend support groups.
  • When friends or family offer to help, suggest specific ways in which they may be of assistance. Let them know what you do, and don’t, need help with.
  • Be willing to teach others about the best ways to communicate and interact with you.
  • Stay as involved as you can in the things that interest you. Don’t isolate yourself from others. On the other hand, make sure you don’t overdo activities and get overtired. Find a good balance between activity and rest.

Dealing with Changes

Environmental Tips

  • Keep clocks and calendars in full view throughout the house (one day per page calendars work best) where you can frequently see them.
  • Post important/emergency/commonly-used numbers by the phone.
  • Keep a date book or notebook with you that logs all appointments and special dates/events. Cross off the days as they pass. Have a place in this notebook that has important/commonly-used phone numbers, your address and a map to your home, and a place for you to jot down important notes.
  • Write down things you want to remember, such as “to do” lists, people’s names, reminders of where things are kept, etc.
  • Consider carrying tablets or recorders to record thoughts you want to hold on to.
  • I might be helpful to make a simple list of the day’s activities each morning.
  • Try to keep a regular daily routine as much as possible.
  • Consider buying a wristwatch that also shows the date.
  • Remove distractions and do one thing at a time.
  • Leave familiar objects in the same location. Keep a specific place for easily misplaced objects like glasses, keys, etc.
  • Use pillboxes and other devices to organize meds.
  • Label drawers and cabinets to describe contents.
  • Ask your family to set up work stations to allow you to more easily perform tasks.
  • Keep a photo album with pictures/names of family, friends, places and events.
  • Use alarm clocks and cooking timers to remind you of things you have to do at a certain time. If you’re not at home and want to remember something, leave yourself a message on your home answering machine.

Physical Tips

  • Eat well-balanced meals.
  • Ask your doctor about healthy exercises and exercise regularly. Aerobic exercise, like brisk walking, will reduce stress and soothe your mind.
  • Cut down on alcohol or eliminate completely. Alcohol impairs thought processes and memory.
  • Have your eyes and ears checked regularly.
  • Continue regular check-ups with your primary doctor.
  • Take a nap in the afternoon if you need to. Fatigue increases memory problems. Find a good balance between activity and rest.
  • Take someone with you when you go out.
  • Register in the Safe Return program that provides a bracelet with the inscription “memory loss”. If you get disoriented in a public place, this will help people to assist you.

Social/Mental/Emotional/Spiritual Tips

  • Be easy on yourself and do all you can for yourself, even if it takes extra time. Your memory problem is due to a medical illness and is no fault of your own.
  • When friends/family offer to help, suggest specific ways they may be of assistance. Let them know what you do, and don’t, need help with.
  • Be patient with those who love you, as they are also in need of support.
  • Remember that you are not Alzheimer’s disease. You are a multi-faceted individual with a life full of accomplishments, talents, and interests.
  • Stay as involved as you can in the things that interest you.
  • Be upfront with friends/family/others. Tell them about your memory loss; this will help put both of you at ease and eliminate unnecessary stress.
  • Don’t hurry or let others hurry you.
  • Don’t be afraid to ask for help if you need it.
  • Take a break if something is too difficult.
  • Keep repeating things you want to remember.
  • Keep your mind active.
  • Lapses with names (and other memory glitches) are normal and happen to all of us. If you have forgotten, ask.
  • Socialize regularly and don’t isolate yourself.
  • Maintain your spiritual life. If you belong to a church, keep attending, or keep doing whatever spiritual practices that bring you comfort and strength.
  • Share your feelings and concerns with our loved ones and teach them the best ways to help you. Cultivate a good support system. Join a support group for people in the early stages.
  • Work with your family to continually monitor and assess safety risks (e.g., driving, ability to stay home alone) and trust them to help.
  • Do more of the things, including small things, that give you pleasure and help you eliminate stress (e.g., taking a bubble bath, listening to music, playing with a pet, watching sports on TV, etc.).
  • Keep your sense of humor; it helps to laugh at mishaps that might otherwise frustrate you.

12 Steps for Caregivers

  1. Although I cannot control the disease process, I need to remember I can control many aspects of how it affects me and my relatives.
  2. I need to take care of myself so that I can continue doing the things that are important.
  3. I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.
  4. I need to cultivate the gift of allowing others to help me because caring for my relative is too big a job to be done by one person.
  5. I need to take it one day at a time rather than worry about what may or may not happen in the future.
  6. I need to structure my day because a consistent schedule makes life easier for me and my relative.
  7. I need to have a sense of humor because laughter helps to put things in a more positive perspective.
  8. I need to remember that my loved one is not being “difficult” on purpose; rather than his/her behavior and emotions are distorted by the illness.
  9. I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
  10. I need to increasingly depend upon others and their relationships for love and support.
  11. I need to frequently remind myself that I am doing the best that I can at this very moment.
  12. I need to draw upon the Higher Power which I believe is available to me.

Environment and Safety

Environment

  • Routine, Structured, Consistent (e.g., same things at the same time of day)
  • Tranquil, Calm (e.g., limit number of visitors at one time)
  • Continuity (e.g., furniture in the same place, routine schedule, memorabilia within sight)
  • Free of distractions, avoid over-stimulation
  • Avoid under-stimulation (e.g., use music)
  • Orientation / visual cues (e.g., calendars displaying one day at a time)
  • Contrasting colors for emphasis, camouflaging colors to de-emphasize
  • Be sensitive to lighting/glare and use soft lighting to eliminate shadows, dull finish on floors, turn on lights at least 2 hours before sunset to reduce the incidence of sundowning
  • Remove or cover mirrors, if necessary

Safety

  • Adequate lighting
  • Check stored food for spoilage
  • Lock up unsafe items (e.g., guns, poisons, medications, tools)
  • Secure hazardous areas (e.g., pools, stairs, stove, hot tubs, refrigerator, glass doors)
  • Remove clutter; clear pathways
  • Take knobs off of stove; unplug appliances (e.g., microwave)
  • Cover thermostats
  • Avoid look-alike objects (e.g., edible vs. non-edible)
  • Water temperature (120 degrees or less)
  • Helpful devices (e.g., grab bars, hand-held shower head, bath chair)
  • Remove lock or cover latch on bathroom door
  • Tack down electrical cords
  • Use chairs with arms

Home Safety Checklist

Throughout the Home

  • Have all expired and unneeded prescriptions been discarded?
  • Has the house or apartment been cleared of clutter and simplified as much as possible? (What you want to create is an environment which has what the person with dementia needs, but as few other objects as possible.)
  • Are the furnishings and often-used items always kept in the same place?
  • Is constant noise and confusion avoided? Are the television and radio shut off when not in use? (A person with dementia generally does better in a quiet, calm environment, although soft, classical music may be calming.)
  • Have area rugs been removed or fastened down?
  • Are electric and extension cords in good condition ad secured in a way that minimizes the possibility of someone tripping over them?
  • Is the house or apartment well lit?
  • Are shiny floors with busy patterns avoided? (If the person bumps into walls or furniture despite good lighting, placing reflector tape on furniture corners or along baseboards may help.)
  • Are there working night lights in the hallways?
  • Are they turned on at night?
  • Do all stairways have banisters?
  • Are the stairs and hallways free from clutter which could cause a fall?
  • Is the top of each stairway protected with a safety gate to prevent falls? (Such gates may only be needed at night.)
  • Is there adequate space for the person to pace and otherwise move freely? (Many persons with dementia become agitated and need space to move around.)
  • Have all tools and appliances the person can no longer use been safely removed or locked up? (Such tools and appliances may include an iron, hairdryer, razor, electric mixer, or food processor, sewing machine, lawnmower, electric knife, heating pad, or power tools.)
  • Have all firearms been locked up?
  • Are the car keys in a place where the person cannot find them?
  • Have all paints, solvents, insecticides, and poisons been locked up?
  • Are all doors secured in such a way that the person cannot get out without assistance? (Wandering is a common symptom of Alzheimer’s disease and can be extremely dangerous if the person becomes lost or disoriented outside. Locks can help prevent wandering but must be installed in such a way to make the person’s “escape” difficult without making access to the house impossible in the event of an emergency, like a fire. Because Alzheimer’s disease makes the acquisition of new knowledge difficult or impossible, installing a new and unfamiliar lock or placing an old lock in a different place on the door may be enough to prevent the person from opening the door.)
  • Are all windows secured in such a way that the person can’t get out without assistance? (It is essential that the windows be easily opened in the event of a fire. If you have any questions about the safest way to secure your windows; consult the fire Department.
  • Have all radiators been blocked off or covered with radiator guards?
  • What about exposed hot water pipes?
  • Is the use of cigarettes and matches either prohibited or carefully supervised? (Cigarettes and matches handled by an intellectually impaired person are a major fire hazard.)
  • Have interior doors been altered to prevent the person from accidentally locking himself in a room? (This can be done by removing the locks or taping the door latch open.)

Kitchen

  • Is the stove inoperable when not in use? (Improperly operated stoves are a major cause of accidental injury and fire. For the safest and most effective way to make the stove inoperable consult the dealer, our repairmen, the gas company, or an electrician.)
  • Have all cleaning products, polishes, bleaches, and detergents been removed or locked up?

Person with Dementia’s Bedroom

  • Has everything the person doesn’t need and use regularly been removed from the room to make it as simple and uncluttered as possible? (Remember to go through all closets and drawers, removing everything except the clothes the person uses on a day-to-day basis.)
  • Is there a sturdy lamp by the person’s bed which he can operate easily without knocking it over? (A remote control on/off switch with a simple push-button control may be helpful.)
  • Have all area rugs been removed from around the person’s bed? (These are easy to slip on, particularly when getting out of bed at night or when in a hurry.)
  • Is there a clear and unobstructed path between the person’s bed and the bathroom?
  • Is the person’s room well lit?
  • Is there a working night light in the person’s room?
  • Is it turned on at night?

Person with Dementia’s Bathroom

  • Has everything been removed from the bathroom except such essentials as a towel, a bar of soap, a toothbrush, and some toothpaste? (It is best to keep the bathroom as simple as possible and to provide the person with shampoo, an extra towel, a denture case, shaving cream, etc. only when needed. As the disease progresses, even the towel, soap, toothbrush, and toothpaste may be used inappropriately if left out.)
  • Have all medications (both over the counter and prescription) and toiletries been removed from the bathroom? (Remember to clear out or lock up the medicine cabinet. You should dispense all medications.)
  • Are there non-slip decals or a non-skid mat in the tub or shower? (To avoid confusing the person, it is best to use mats and decals which blend in with the color of the tub or shower.)
  • Are there grab bars in and near the tub and shower for the person to hold onto while getting into the tub and while taking a bath or shower? (The mere presence of grab bars does not guarantee safety. Make sure that they are bolted to the wall and that they are installed at a height and in a location convenient for the person to use.)
  • If the person has difficulty using the bathtub, is the bathroom equipped with a bathtub bench and a hand-held shower?
  • If the person has difficulty using the toilet because of stiffness or unsteadiness, is the bathroom equipped with grab bars around the toilet and with an elevated toilet seat available through most medical supply houses?
  • If the bathroom is far from the person’s bedroom, is a portable commode kept in the bedroom?
  • Are small rugs and bath mats removed except when the person is betting out of the tub or shower?
  • Do the rugs or mats have non-skid bottoms? (Such rugs and bath mats should be used only to keep the person from getting the floor wet and making it slippery.)
  • Does the bathroom have a working night light?
  • Is it turned on at night?

Although not directly related to the home environment, there are a number of additional safety precautions a family caring for an Alzheimer’s person should take. For example, the family should have a written emergency plan describing procedures to be followed in the event of a medical emergency, a fire, or the person’s wandering away from home. The plan should be posted near the telephone, along with the phone numbers of the Police and Fire Departments, the local poison control center, and your family doctor. Notify the local police precinct immediately if the person wanders away.

Keep a recent photograph of your relative on hand, as well as photocopies which can be quickly distributed to the police and to neighbors if the person gets out unaccompanied. Obtain an identification bracelet for the person which gives his name and address and indicates that he is memory-impaired.

It may be wise to inform your neighbor that your relative has Alzheimer’s disease, particularly if he has a tendency to wander. Informing them of the nature of his illness, and telling them what to do if he is seen outside alone, may help prevent his wandering beyond the neighborhood. There are innumerable stories of disoriented persons with dementia being returned home by caring neighbors and local merchants.

A final safety precaution involves the decision about whether to leave your relative alone at home. You will have to use your judgment about whether he is intellectually intact enough to be left alone for even short periods of time. A person whose behavior makes him a potential danger to himself or to others – or a person who can neither recognize nor respond appropriately to an emergency situation – should not be left unsupervised.

Responding to an emergency situation frequently requires that a person be capable of communicating the need for help to others. One reason why a person with dementia may be incapable of responding is that he can no longer communicate that need clearly. The ability to both understand and use language diminishes as Alzheimer’s disease progresses.

You can purchase the items you need to make your home safe at places like Toys-R-Us, hardware stores, home safety catalogs, and online.

Communication Challenges

Needs of Persons with Alzheimer’s Disease (AD)

The primary goal for the caregiver is to find ways to meet these needs throughout the course of the disease.

  • To feel connected
  • To feel respected
  • To be appreciated
  • To feel loved
  • To be known
  • To be understood
  • To experience belonging
  • To share, give, love
  • To be helpful, useful
  • To feel safe

Feelings Associated with Alzheimer’s Disease and the Goal of Person-Centered Care

A person with Alzheimer’s disease shares all the same emotions and feelings as a person without cognitive impairment. The goal of person-centered care is to move the person from the feelings listed below in the left-hand column to the ones listed in the right-hand column. The shift may be only momentary, but person-centered care suggests that if we can link these moments together, then challenging behaviors will be reduced and the quality of life improved for the person with Alzheimer’s disease.

LossFulfillment
LonelinessConnectedness
SadnessCheerfulness
ConfusionOrientation
Worry / AnxietyContentment
FrustrationPeacefulness
FearSecurity
ParanoiaTrust
AngerCalm
EmbarrassmentConfidence

Key Elements of Communication

  • Communication: Process by which information and feelings are exchanged among individuals through common symbols, signs, or behaviors.
  • Verbal communication: Involves a complex feedback loop of organizing, sending, receiving, decoding, and responding to messages. (We take complexity for granted.)
  • Non-verbal communication: Consists of cues, gestures, and body language. Only 7% of the message is attributed to words used, the rest is through non-verbal messages we send.

Persons with dementia retain non-verbal communication skills long into the disease, much longer than verbal, so body language (of both the person with dementia and the caregiver) becomes very important and the primary mode of communication.

Non-Verbal Communication

As people with AD lose their cognitive abilities, they experience the world through their senses:

  • Touching (e.g., back rub, hand/foot rub, grooming activities, etc.)
  • Music (make sure it’s the kind of music they enjoy!)
  • Walks, sitting together, sharing meal
  • Use your voice to soothe (e.g., read to them, affirmations)
  • Create pleasant, reminiscent aromas (can use them as cues, e.g., bath oils for bathing, fresh coffee brewing at breakfast time)
  • Use multi-sensory cueing (e.g., ask them if they would like coffee while pouring it, so they can both see and smell it)
  • Pets
  • Muted decor, e.g., carpets, drapes, avoid busy patterns, minimize glare from windows/lights, even lighting
  • Spiritual connections (e.g., favorite prayers or Bible verses, hymns, rituals, incense, etc.)
  • Keep familiar, beloved items in visual field. Also remember familiar, beloved sounds, smells.
  • Use contrasting colors to items to be used (e.g., plate against place mat, colored toilet seat)
  • Ask for their help with a task
  • Limit distractions. Reduce clutter, confusion, noise (e.g., TV too loud, glare from lighting, too many people, spaces too big or small, mirrors)
  • Keep room temperature comfortable (AD persons generally run very cold)

“Do’s and Don’ts” for Communicating with the Memory Impaired

Do…

  • Listen
  • Use short, simple sentences and familiar words
  • Give directions, one step at a time
  • Be patient; expect repetition (e.g., the same question, over and over)
  • Help them fill in the blanks
  • Read their facial expressions and body language (even over words) and respond accordingly
  • Ask for their opinion
  • Watch your own body language; keep it calm, positive, and reassuring (the person will tend to mirror your mood)
  • Give them praise, love, and lots of reassurance
  • Let them help, even if they don’t do the job “quite right” – fix it later
  • Respect and use their “best” time of day — for making decisions, plans, and doing activities
  • Stick to as consistent a routine as possible (do the same things at the same time of day)
  • Keep your sense of humor and laugh with them
  • Keep the environment as calm and unchanging as possible, without too many distractions (e.g., TV, radio, etc. at the same time)
  • Let the person make as many decisions as they still can (unless that decision jeopardizes their own safety or someone else’s safety)

Don’t…

  • Correct or argue (even when you know they are wrong!)
  • Expect perfection
  • Speak for them
  • Do things for them that they can still do for themselves
  • Use long, logical explanations
  • Remind a person that they forget (e.g., “Don’t you remember we talked about this yesterday?”…)
  • Talk down to a person or treat them like a child
  • Talk about a person in his or her presence as if they are not there (e.g., “Yesterday he couldn’t remember our address.”…)
  • Ask questions of the person that requires remembering facts
  • Try to explain or prepare too far in advance
  • Rush or hurry them
  • Give too many choices
  • Try to teach the person new things
  • Take negative comments they might make personally; it’s the disease talking (e.g., “You’re stealing from me!”)
  • Give the person orders, demands (e.g., “Don’t do that!”)
  • Refuse help from others!

11 Golden Rules for Communicating with the Memory Impaired

  1. A smile is worth a thousand words. (People with dementia will mimic our mood and body language more than our words.)
  2. Respond not so much to what they are saying but the way they are saying it (their emotions).
  3. The goal of care-giving is to promote positive emotions.
  4. It’s okay to tell “therapeutic fibs” to promote positive emotions.
  5. Build on what’s left, not on what’s lost.
  6. Helping does not mean taking over.
  7. You can’t change their behavior or reaction, so change yours.
  8. They can’t resist, if you don’t insist.
  9. They can’t remember your reassurances; keep repeating them.
  10. Don’t try to bring the person with dementia into your reality; it’s a losing battle. Instead, be with them in their reality.
  11. Let go of power struggles; people with Alzheimer’s disease are always right! (Once Alzheimer’s is diagnosed, the person is excused 100% of the time.)

The Driving Controversy: Alzheimer’s and the Automobile

A Guide for Caregivers

by Lisa Snyder

To drive or not to drive? That is a big question and one that will face every individual diagnosed with Alzheimer’s disease (AD) or a related memory disorder.

We frequently are asked questions about this complicated and controversial subject. While each situation may vary a bit, these are some general themes and concerns.

How does Alzheimer’s disease affect driving?

Symptoms of memory loss, disorientation, and changes in vision and perception may result in drivers getting lost, misjudging distances, forgetting the “rules of the road” or having slowed reaction times when making the multiple quick decisions needed to drive safely on the roadways. Concentration may be affected as well as coordination. Some memory-impaired people find that they are more easily frustrated in stressful situations. or, conversely, insight may be impacted such that individuals with AD are quite unaware of the safety hazards they may be posing to others due to their driving errors. All of these circumstances can affect driving performance and safety.

Do people with Alzheimer’s disease have more accidents?

Research findings in this area are not consistent. Some studies indicate that drivers with AD or related memory disorders are 4-8 times more likely to experience motor vehicle accidents. Others conclude that drivers in the early stages of AD have a slightly greater risk than most drivers but have a lower risk of accidents compared with young male drivers. Some findings suggest that the AD-diagnosed driver tends to get in more “fender-bender” types of accident rather than in major collisions. However, there are reported incidents of drivers killing pedestrians and/or other drivers due specifically to errors caused by their dementia. It is difficult to evaluate how many near misses are avoided by other drivers compensating for the errors made by the driver with AD (i.e. being forced to abruptly brake, needing to go around a person lingering in an intersection, having to yield inappropriately, etc.) Also, individuals with AD may give up driving prior to having an accident.

Will a driver’s license automatically be revoked due to a diagnosis of Alzheimer’s disease?

In some states, physicians are mandated by law to report a diagnosis of AD to the Health Department who then reports to the Department of Motor Vehicles (DMV). In other circumstances, concerned family or friends may make a report. The DMV may then review the driving and/or medical records of the diagnosed individual. In the case of a physician referral, the DMV will ask the physician to document any impressions of the person’s ability to continue driving.

The diagnosed person would then be sent a letter indicating the need for a driving evaluation.  At an appointed time, a written and driving test is administered. If the person passes, his/her license is renewed, sometimes with restrictions i.e., yearly re-evaluation or driving in a certain area only. If the person fails, the DMV usually gives an opportunity for re-examination, although this should be discouraged. Some diagnosed individuals report having good days and bad days and may want to try again on a “good day”. However, it is just this variation in ability that can create one of the hazards of driving with Alzheimer’s disease.

What are the signs of an unsafe driver?

While some individuals with Alzheimer’s disease show good insight into their abilities and limitations, others do not and will need to be evaluated more closely by family members, friends or professionals.  The following are some common areas of concern:

  • Forgetting how to get to familiar places may be an indication of significant changes in memory or concentration.
  • Misjudging distances (i.e., following too closely, turning too widely or narrowly) may be due to changes in vision or perception.
  • Disregarding traffic signals, including running stop signs or red lights, or stopping at a green light.
  • Poor decision making in traffic is common and includes not using turn signals, weaving across lanes, becoming confused at four-way intersections or not yielding to traffic when needed.
  • Driving too slowly is common and may indicate changes in perception and judgment.
  • Losing one’s temper or becoming easily frustrated is common enough on busy roads. However, the person with AD may also have an inability to process the multiple stimuli and demands of driving and as such, becomes more easily overwhelmed.

If a person with AD drives with a license and gets into an accident, can he/she be sued?

A driver’s license allows an individual to drive as long as there are no impairments that put them at risk of harming others. If a person diagnosed with AD is in an accident, it does not automatically mean he/she is legally responsible for the accident. It would have to be proven, by evidence that the impairment caused or contributed to the accident. However, if the disease progresses and obviously affects driving as previously discussed, and the diagnosed individual does not voluntarily seek re-testing for driving safety, or report for it if requested, this poses complications. Should the person then get into an accident, she/he could be charged with knowingly driving (or a family member charged with letting him/her drive) in a disabled condition that placed others at risk for injury. As such, even though a person has a license, it is essential to show a good faith effort to monitor the effects of AD on driving performance. It is strongly recommended, for legal and ethical purposes, to be voluntarily re-tested on a regular basis (i.e., every six months.) Please contact your local DMV or an attorney with specific questions on this issue.

What steps are being taken to better understand, evaluate and test the impact of AD on driving?

Researchers are continuing to study comparisons in the driving patterns of normal elderly controls and individuals with AD to better discern the specific impact of AD on driving. One frequent finding is that visual-perceptual and attention problems have the most impact on driving. Efforts are underway to create a more sensitive and specific battery of tests that will measure these impairments. This will enable physicians of the DMV to effectively identify a cut-off point when it is no longer safe for a person with AD to be driving.

It is clear that the evaluations performed by the DMV are not always effective in detecting the particular impairments of those diagnosed with AD. Investigations are underway to evaluate the effectiveness of driving simulators as a means at testing specific problematic scenarios. These would enable a person to be tested without the risk of placing an impaired driver on the road.

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)?