Toll-Free Telephone Support

Alzheimer’s and Dementia Services of Northern Indiana offers confidential telephone service that provides emotional support, disease information, caregiving tips and support, and referral to local community services. Call 888-303-0180 or 574-232-4121.

Definitions

Normal Age-Associated Memory Loss

  • Slowdown of the ability to process new information (e.g., learn a new card game
  • Slowdown of short-term memory (e.g., where did I put my keys, glasses?)
  • Slowdown of search and retrieval functions (e.g., forgetting names, words

Dementia

  • The loss of cognitive or intellectual function, such as thinking, remembering, and reasoning, so severe that it interferes with a person’s daily functioning and everyday life
  • Not a disease in itself, but a group of symptoms that accompanies certain diseases or physical conditions
  • Symptoms include poor judgment, disorientation, short attention span
  • More than 50 different types of dementia exist, 15-20% are treatable, so it is important to get a comprehensive clinical assessment

Treatable Dementia (or “Pseudo-dementia”)

  • Depression
  • Alcoholism
  • Drug reactions
  • Thyroid disorders (or other metabolic)
  • Nutritional deficiencies
  • Brain tumors
  • Head injuries
  • Infections (e.g., AIDS, meningitis, UTI)
  • Grief reactions
  • Vision and hearing loss
  • Fatigue

Causes of Progressive Dementia

About Alzheimer’s Disease

What is Alzheimer’s Disease?

  • NOT a normal part of aging (senility, hardening of the arteries, or organic brain syndrome were terms used years ago to describe what we now call dementia)
  • The most common form of dementia
  • A progressive, degenerative neurological illness
  • Marked by gradual onset
  • Destroys brain cells, results in structural and chemical changes.
  • Brain cells are not replaced.
  • Characterized by plaques and tangles in the brain
  • Caused still undetermined
  • Course of disease can take 2-20 or more years; average 8-10 years

Alzheimer’s Disease is NOT…

  • A mental illness
  • A normal part of aging
  • Senility
  • Contagious
  • A result of using aluminum pans or foil
  • A result of Lyme or any other disease
  • Preventable
  • Reversible
  • A “funny” disease
  • A race-oriented disease
  • Only for older adults

Alzheimer’s Disease IS…

  • A medical illness
  • The most common type of dementia
  • A progressive, degenerative and neurological illness
  • Characterized by chemical and structural changes in the brain
  • Affecting approximately 4.5 million Americans
  • Affecting about 10.3% of people, of all races, and gender, 65 years of age or older
  • Also affecting persons in their 30s and 40s
  • The fourth leading cause of death among adults
  • Diagnosed 100% only through brain autopsy after death

A person with Alzheimer’s Disease can…

  • Perform simple tasks
  • Enjoy previous hobbies, if somewhat modified
  • Enjoy favorite foods, music and activities
  • Show love and affection
  • Experience emotions such as sadness, fear, loneliness and anger
  • Accuse others of false actions and behaviors
  • Act suspiciously toward other people
  • Lose or hide items
  • Curse, strike out, cry, spit or act inappropriately
  • Respond to voice tone and eye contact
  • Experience pain or discomfort from other conditions
  • Respond to supportive, predictable environment

A person with Alzheimer’s Disease cannot…

  • Communicate clearly
  • Understand fragmented or abstract thoughts
  • Understand sarcasm or humor
  • Understand open-ended questions
  • Express him/herself coherently
  • Cooperate consistently
  • Respond to reason
  • Learn new things
  • Make decisions
  • Drive, as the disease progresses
  • Recognize familiar objects or people
  • Understand what an object is
  • Complete a task without directions
  • Comprehend complex orders
  • Maintain past skills
  • Control all actions
  • Participate in conversations in the later stages

Warning signs of Alzheimer’s Disease

  • Increasing incidences of short-term memory loss that effects everyday living of job
  • Difficulty doing familiar things such as using an appliance or tying a tie
  • Forgetting common words, using the wrong word, or having problems naming a common object, such as a pencil
  • Putting things in strange places or frequently losing or misplacing things
  • Getting lost or disoriented easily, even in familiar places; disorientation to time or place
  • Problems with complicated tasks, or with abstract thinking (e.g., balancing a checkbook)
  • Problems with judgment (doing things that don’t seem to make sense)
  • Major change in personality (e.g., confused, afraid, suspicious) or sudden changes in mood or behavior
  • Losing interest in doing things (or losing interest quickly if not encouraged)

How Alzheimer’s Disease Affects the Brain

The disease is characterized by the gradual spread of sticky plaques and clumps of tangled fibers that disrupt the delicate organization of nerve cells in the brain. As brain cells stop communicating with one another, they atrophy – causing memory and reasoning to fade.

Tangles and plaques first develop in the entorhinal cortex, a memory-processing center essential for making new memories and retrieving old ones.

Over time, they appear higher, invading the hippocampus, the part of the brain that forms complex memories of events or objects.

Finally the tangles and plaques reach the top of the brain, or neocortex, the “executive” region that sorts through stimuli and orchestrates all behavior.

A brain ravaged by Alzheimer’s shrinks in size and weight as the disease destroys neural tissue. The once tightly packed ruts and grooves on the surface of a healthy cerebral cortex become visibly pitted with gaps and crevices.

Diagnosis and Treatment of Alzheimer’s Disease

How is Alzheimer’s Disease Diagnosed?

Currently, there is no one clinical test that can determine whether a person has Alzheimer’s disease. There seems to be some hope on the horizon that a test will be developed in the future. Many conditions exist which exhibit similar symptoms to Alzheimer’s; some are treatable and reversible, some are not. Several tests must be performed to rule out any of the conditions or diseases that can be clinically diagnosed. At this point, the only definitive test for Alzheimer’s disease is examination of brain tissue obtained from biopsy or autopsy. Biopsy is almost never done.  The usual course is diagnosis at autopsy. There is an accepted criteria established by the NINCDS Work Group (National Institute of Neurological and Communicative Disorders) that is widely used. Following this criteria, the results are considered about 90% accurate and involve the following:

  • A DETAILED MEDICAL AND SOCIAL HISTORY because of the wide range of possible causes of dementia, a detailed history is exceptionally important. It may be obtained from the patient (if possible), from the best informed relative or acquaintance available, and/or from past medical records. Also, a careful history of events that have affected the patient’s emotional status is important to have. Special attention should be given to whether onset of symptoms was gradual or sudden.
  • MEDICATION INVENTORY because a complete inventory of prescription and over-the-counter drugs is necessary. Drugs and the interaction of drugs may cause dementia-like symptoms. A urine screen may be indicated to determine the presence of some drugs.
  • HISTORY OF SUBSTANCE ABUSE OR MISUSE/INTOXICATION can be the cause of usual behavior or may complicate the problems associated with a dementing disorder or condition.
  • A COMPLETE PHYSICAL EXAMINATION should be thorough since diseases present in many organs systems may cause dementia or delirium. Special emphasis and attention should be given to the neurological examination.
  • A MENTAL STATUS EXAMINATION includes an evaluation of level of consciousness; attention; orientation; short-term memory; long-term memory; language ability (including naming, repeating, understanding, reading, writing); ability to draw of copy; calculating ability; manipulation of knowledge (as in proverb interpretation or identifying similarities between words); affect; stream and content of thought; judgment.
  • LABORATORY TESTS AND SCREENING with the following included: complete blood cell count; electrolyte panel; screening metabolic panel; thyroid gland function tests; vitamin B-12 and folate levels; tests for syphilis and, depending upon history, for human immunodeficiency antibodies; urinalysis; electrodardiogram (ECG); chest roentgenagram. Some type of brain scan – Computerized Tomography (CT) or Magnetic Resonance Imaging (MRI), and an electroencephalograph (EEG). A lumbar puncture may also be indicated.
  • PSYCHIATRIC ASSESSMENT evaluation may be indicated especially if there is a significant history of depression or other psychiatric illnesses.  Depression may be so severe that it produces a true cognitive deficit that is reversible with successful treatment. Depression commonly is present with other causes of dementia, especially Alzheimer’s disease.

Diagnosis Specialists

For information on how to contact each of the above in your area, contact our toll-free Helpline, 888-303-0180.

Neurologist

  • Does neurological testing (CT-Scan or MRI)

Neuropsychologist

  • Tests memory, language, reasoning and arithmetic skills

Psychiatrist

  • Assesses for depression/other psychiatric disorders
  • Manages medications

Internist/Geriatrician

  • Does complete physical exam
  • Acts as primary care physician

What Are the Benefits of Early Diagnosis?

  • To treat reversible causes early in their course and prevent inappropriate treatment
  • Medications most effective when started early and in early stages
  • A starting point for acceptance and discussion
  • Disease education minimizes the stress of “unknown”
  • Disease education and strategies teach families how to better respond to a person’s needs and changes throughout
  • Patients can be offered participation in drug trials
  • Allows AD person and family to plan for the future and address legal, financial, and family matters
  • Allows AD person and family to maximize life opportunities (e.g., take that vacation they’ve been saving for)
  • Allows AD person and family to address safety issues

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.)