Click HERE to download a pdf of our Personalized Care Book.

How can you afford assisted living? HERE is a copy of a Consumer Reports article that has some useful information.

How to Choose an Assisted Living Checksheet - provided by the Larimer County, Colorado Office on Aging

Please B.R.E.A.T.H.E. - "Caregivers, this is the BEST way to understand (and respond to) Alzheimer’s behaviors" by Barbara Worthington

Understanding the Dementia Experience

A guide to caring for someone with dementia

Disease Process

There are many forms of dementia ranging from FTD, Alzheimer’s disease, Vascular dementia, etc. In each case and with each person, the disease progresses differently. The information here is not intended as medical advice or information on your particular disease or its progression. Rather, this is information compiled from our years of experience on caring for individuals who have any form of dementia.

Truths about Dementia

The disease is progressive:

  • Abilities deteriorate
  • Understanding deteriorates
  • Actions and manners go through many changes
  • Physiological changes:
    • The disease will rob people of memories and things they’ve ever learned
    • The person WILL be able to always remember the "emotional connection"
  • May forget family members but have a measurable reaction to someone they love and someone who loves them
  • Regardless of the specific dementia diagnosis, the person with dementia wants to be treated with dignity and respect
  • Every single one of us is unique—that holds true for the person who has dementia!
  • The adage "if you know a person with dementia, you know ONE person with dementia" is true — every person with dementia has unique needs and wants and actions!
  • It is NOT easy for one person to provide all of the care for a person with dementia
  • It is perfectly okay to ask for help
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Memory Issue

  • Your loved one may forget physical memories such as address, children’s names
  • She may forget automatic abilities such as how to use eating utensils or how to get dressed
  • Geographical disorientation
  • This extends to the person’s body—people may forget the layout of their bodies (may try to put legs into shirt sleeves)
    • Each person experiences a different reality and may not be capable of remembering YOUR version of reality
    • She is not capable of internalizing YOUR reality
    • If you try to insist that his reality is wrong and yours is right, you will only produce anxiety and agitation
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Doing Things

  • Fine motor movements will diminish
  • Gross motor movements will change—lack of stamina in walking—will take progressively shorter steps
  • Difficulty in understanding “back, front, left, right, up, down” or other relative directions
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Emotions

Emotions remain fairly intact. He will continue to feel happiness, sadness, grief, joy, etc. There will most likely
be a change in his ability to control his emotions and he may have excessive expressions of emotions.

  • A negative or positive event will have a long lasting effect even though the actual event will be forgotten
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Effective Communication

Only 7% of communication is the actual words we use. The rest of communication is tone of voice and body language.
As your loved one progresses through this disease, she may stop speaking completely. She may have different manners or actions. His words and thoughts may be unorganized. The processing of all information is slowed—verbal and visual. The key to effective communication is:

Patience

  • Allow him the time to communicate
  • If he gives incorrect information, that’s okay—there is no need to correct it
  • Offer your hand—palm up
  • Use his preferred name
  • Wait for a response
  • Use vague speech
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Short

  • Speak in slow, short sentences
  • It takes time for someone to process what you are saying
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Simple

  • Approach her from the front
  • Speak directly to her
  • Think of ways to communicate without asking questions
  • Limit distractions during communication
  • Maintain eye contact
  • Use yes/no questions—repeat the question verbatim
  • Give one simple direction at a time—task breakdown

Don’t ask—most responses will be "no". Simply say: "come with me" and walk toward the bathroom.
When you are in the bathroom, say: "turn here" and guide her body to where you want to position it.

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Slow

  • Speak and move slowly & distinctly
  • Don’t press for an answer—it takes longer for her to process and respond to information
  • Use touch and distraction
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Steady

  • Use familiar words—use slang words
  • Smile
  • Approach from the front
  • Get at his eye level
  • Offer your hand—palm up
  • Agree—contradicting or arguing leads to stress for everyone!
  • Repeat, repeat, repeat
  • Be Patient! Wait for a response

Communicate in a manner that is consistent with dignity and respect

  • Don’t speak in “elder-speak” or in a child-like manner
  • Don’t order her around
  • Don’t tell him what he can’t do
  • Don’t talk about him as if he isn’t there
  • Don’t be condescending
  • Don’t finish her sentences
  • Don’t argue
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DO NOT lecture, correct, or scold your loved one

Avoid negative words such as "don’t", "can’t", etc.

  • Speak to your loved one in a normal tone of voice. Try not to revert to "elder speak" or "baby talk".
    Your loved one is an adult with a brain disease—not a child.
  • Speak in the positive, for example: If it is raining outside you should say "Stay inside" rather than "Don’t go outside"
    (The brain focuses on the "action" of your statement — if you say "don’t go outside" then the message being heard is “go outside”)
  • A person with dementia loses that "filtering" system and may say and do things he/she would otherwise have never said or done. Do not react to those
    words — simply ignore. That’s the dementia speaking — not your loved one!
  • Avoid using the "R" word (remember). The person with dementia may NOT remember but may become unsettled if you try to make them remember.
    Just enjoy the moment. For example, if you are looking at photos, just comment on that "cute child".
  • If your loved one asks for breakfast 20 minutes after eating, simply offer a smaller portion of breakfast. He may have forgotten that he’s already eaten.
  • Your loved one may not always appear to understand what you say, but she WILL understand your tone of voice and body language
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Routine = Consistency = Happiness

  • Try to keep a routine for meals, bathing, personal care
  • Holidays are not a regular routine thing—your loved one may have always enjoyed the annual Thanksgiving get-together but it may be stressful now that he has a cognitive impairment
  • Down-play holidays, decorations, large family gatherings
  • Maintain a consistent atmosphere: keep noises low
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Personal Care

When you interact with a person with dementia, he may not know where he is, who you are, what you want to do, why you what to do it, and why it is done!
He may lack the understanding of the overall context. He may feel anxiety, fear, or frustration. He has lost all anchors and connections to the "real world".

  • Personal care can be especially intrusive and she may feel threatened when you approach. If she is physically threatening just give her plenty of space and approach later.
  • He may not remember that you are his wife and you might have to establish trust every time you perform any personal care
  • He may not realize that he needs help and may be offended that you are offering
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Money

Money is generally an issue for individuals with dementia. They have always paid their own way and have most likely kept close track of their finances.

  • Replace cash with fake bills — you can purchase fake money at a school supply store or even at a local Dollar Store
  • Cancel any credit cards from local businesses and let him continue to carry the cancelled cards in his wallet
  • Ask your grocer if you can have a variety of the credit/debit cards (Visa, MasterCard, American Express).
    You don’t have to load money to them, simply replace the REAL cards in his wallet with the zero-dollar value cards.
  • Get a blank check register at your bank and write in a few transactions. Put some blank checks in the
    check book holder—use a black marker to block out your account number.
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Actions and Manners

People with dementia may have limited verbal communication skills so they are likely to demonstrate manners or actions
that are commonly referred to as "behavioral" issues. We don’t use those words. A person with a brain disease
is not "mis-behaving" — he is simply trying to communicate with you.

Some common actions you might see are physical assertion, verbal assaults, sexual, hoarding or gathering, wandering or
roaming, or worrying about wanting to "go home".

Some of the typical reasons for those actions or manners are:

  • Cognitive changes:
    • Maybe cannot button his shirt
    • May be confused about where she is
  • Illness:
    • Urinary Tract Infection (UTI)
    • Common cold
    • Blood sugar high/low
  • Physical/pain:
    • Arthritis
    • Headache
    • Soreness in limbs
    • General pain

    (It’s possible that he has always had general pain but never articulated it and simply dealt with it. Watch for
    cues—grimace, frown, etc.)

    Ask her if "it hurts" - (don’t say "do you have pain?")

  • Hearing loss or vision issues
  • Hunger
  • Need to use the restroom
  • Interpersonal
    • She may not remember that you are her husband and may be reluctant to have a “strange” man care for her
    • Environment
    • Every little change can be considered an “event” that may trigger confusion, sleep disruptions, anger, etc.
    • Imagine that you are suddenly living in the middle of a family in France—they don’t speak the same language, their foods are different, their wall decorations are different, it smells different, and you are scared!
    • Mirrors can be disturbing—often times people with cognitive impairments think of themselves as being a different age—they may not even recognize the face in the mirror and it may be upsetting. On the other hand, some folks like "visiting" with that new person in the mirror!
  • OVERSTIMULATION is a huge problem!
    • Limit commotion or any high level of activity.
    • Limit distractions such as television, loud music, other people
  • When you are having difficulty in mentally processing your life and environment, the more noise and distraction lends itself to more confusion and more difficulty in processing anything.
  • Room temperature—as people age and become less physically active, their circulatory system and internal thermometer is different….they may feel cold.
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Dining

The idea of "breaking bread" is much more than the physical action of tearing apart a loaf of bread. We use that term to denote a time when we spend with others to eat and share social time, and to have pleasant interaction with those whom we are most comfortable. Meal times are when we are able to relax and get together to share our lives and often reminisce about what has brought us together.

Food is the most basic of needs in that it is fuel and nourishment for our bodies but eating a meal with someone also satisfies another basic need: human interaction.

When your loved one has a cognitive impairment such as Alzheimer’s disease, "breaking bread" can quickly turn to one of stress and challenges. There are a multitude of things you can do to ensure that your meal time is one of pleasure and not so stressful.

  • Plates & bowls & cups
    • Use red or bright orange dishes
    • Large flat bowls work well—easier to keep the food on the plate
    • Use coffee mugs with handles for soups, ice cream—easy to hold while eating
    • Drink out of coffee mugs with handles or use travel mugs with handles and lids
    • If the person is able to use one, try drinking out of straws
    • For someone who cannot tilt their head back far enough to drink, use “nosey cups” (search online)
  • Flatware
    • For individuals who have difficulty holding flatware, try adaptive flatware with large handles (search online)
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Finger foods

  • There may be a time when your loved one can no longer use utensils or may not know what to do with utensils
  • Finger foods do not have to be pre-made manufactured foods (see ideas here)
    • Purchase a small sandwich maker and put any food you serve between the pieces of bread and prepare according to manufacturer instructions
    • You can put any food in the sandwich maker: scrambled eggs, spaghetti, meatloaf, casseroles, mashed potatoes, etc
    • Ice cream cones are great holders of foods and can be carried around
    • You can put any food in the ice cream cone: salad, scrambled eggs, casseroles, mashed potatoes, etc.
  • "Burritos"
    • Use a rolling pin to flatten a piece of bread, (remove crusts), place the food on the bread and roll up like a burrito
  • Sandwiches
    • Sandwiches tend to fall apart or "slip" apart.
    • Try sandwiches made with something that will "stick" the pieces of bread together: tuna, egg salad, peanut butter, grilled cheese
    • Cut sandwiches into quarters—much easier to handle
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Food vs. Non-food

  • The person with dementia may try to put something in her mouth that isn’t intended for consumption
  • No one will squeeze a tube of toothpaste into their mouth until they do!
  • Keep small items out of sight and out of reach (craft items, fake fruits, decorations, soap, live plants, etc.)
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Clothing

  • Your loved one may have difficulty buttoning or fastening clothing. Consider using sweat pants or elastic-waist knit pants for ease of clothing changes.
  • Undressing inappropriately—try to figure out any underlying cause of the undressing:
  • Is clothing uncomfortable? Scratchy, hot, cold, etc?
  • Does she need to use the restroom?
  • Is he in pain? Does he have an infection (UTI)? Hungry?
  • At times, your loved one may undress to relieve bladder or bowels at an inappropriate time or place. If this is a common occurrence, consider using “adaptive clothing” (available at www.buckandbuck.com)
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Sleep

  • As the caregiver, you will find yourself sleeping with one eye open and one foot on the floor!
  • As people progress through this disease, some will sleep 20 hours per day while others are satisfied with 4 hours of sleep each day.
  • When your loved one sleeps, you need to nap!
  • When your loved one awakens at 3:00 am, she may have some need such as hunger, pain, needing to use the bathroom, or perhaps an infection (UTI)—or she just might be done sleeping for the night!
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Activities

All of us want to keep busy and to be needed. It is no different for someone with a cognitive impairment. None of us are entertained each day so you don’t need to find things to entertain your loved one.

  • Ask for help—and be thankful for the help
    • “Help” might be dusting silk flowers or folding washcloths (the end result is not important—it’s the “doing” that is important)
      • Activities should be very short in length
      • Flexible—it’s okay to have different rules for playing a game
      • It is fine to BE and not to DO—sometimes observing is a great activity
      • Ideas:
        • Sorting anything
        • Feather dusters
        • Write a grocery list
        • Woodworking (sanding)
        • Food preparation (snap beans, shuck corn)
        • Folding laundry
        • Baby Dolls and Stuffed Animals are great for folks to hold
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Apathy

Your loved one may demonstrate loss of drive or inability to use initiative. She will begin to rely on others to cue her in order to be involved in activities or conversation.

  • She may sit for long periods of time and appear to do nothing purposeful—this is not harmful—apathy is caused by dementia
  • Periodic stimulation is useful—but don’t OVER-stimulate
  • Your loved one will not exhibit full-time engagement, as he did in the past. The part of the brain that controls initiation of activity or communication is damaged
  • It is OKAY to just "be"
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Redirection

  • Redirect-do not restrain
  • Always agree!
  • Honor his reality and use a kind, compassionate approach
  • Remain calm — use same phrase over & over
  • Remain in control — don’t be intimidated
  • Use positive words: "please stop" instead of "don’t"
  • Use non-verbal cues (motion with your hands)
  • First answer her emotional appeal—if she is looking for her mother, does that mean she’s feeling worried and insecure?
    • FIRST: Reassure her by saying you aren’t sure where her mother is right now but may be back within the hour
    • SECOND: Use distraction by offering her a glass of water, a hug, a walk, etc.
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Safe and Secure

For someone with dementia who is living at home, it is very likely that he will wander. You can install keyed locks on your doors that prevent him from simply walking out the door without your being aware.

  • Child safe locks are available at most retail outlets. You can install the magnet locks on your cabinets where you keep sharp objects, cleaning supplies, or medications
  • Shut off the breaker to your stove when you aren’t using it so that your loved one won’t injure herself by accidentally turning on a burner
  • Keep your water temperature at 120 degrees or lower to avoid accidental burns
  • Disable the auto switch on your gas fireplace
  • Use foam soap at your sinks rather than liquid or bar soap that can easily be ingested
  • Lock the doors that access the garage or the basement.
  • Keep your car keys in a secure place—if your loved one attempts to use the car, you can provide him with a set of keys that do not work for the car.
  • Keep linens out of reach where they cannot be accidentally flushed down the toilet.
  • Keep a list of medications, habits, contact, Advanced Directive, insurance information, photo ID, etc. on hand for emergency responders.
  • Make photo copies of and laminate everything in her wallet (insurance cards, driver’s license, etc.). Return the laminated copies to her wallet and you hold on to the originals.

Click HERE to download a pdf of our Personalized Care Book.