Caring for Adults with Dementia

Tips on How to Communicate

When communicating with someone with dementia, do:

• Begin any interaction with a smile and a cheerful demeanor.
• Greet the person by name and create eye contact.
• Use short, simple sentences.
• Use body language to enhance the message, such as pointing or using gestures.
• Repeat, repeat, repeat, using the same words and a gentle tone.
• If agitation happens, stop and come back later.
• Ask for permission to help.
• Accept the blame and apologize whenever the person becomes upset or accusatory.
• Respond to feelings rather than words.
• Forgive yourself if your feelings become negative and spill out onto the person.

And keep in mind these "don’ts":

• Don’t lecture.
• Don’t reason.
• Don’t blame.
• Don’t remind them they forget.
• Don’t take it personally.

Handling Difficult Dementia Behavior

Different types of dementia and different stages of the disease can create a host of different symptoms that may be difficult to respond to. The following tips can make it a little easier to anticipate and respond to changing behaviors caused by dementia.

Responding to Paranoia

Dementia causes confusion and memory loss, which may manifest as a loved one becoming uncharacteristically suspicious or accusatory, a type of paranoia. Accusations of theft, infidelity, bribery or other crimes can feel hurtful, unfair and untrue. It can help if you remind yourself that your loved one’s brain is just trying to make sense of an increasingly confusing world.

To handle paranoia:

• Listen to the fear.
• Respond by taking it seriously.
• Don’t try to talk them out of the fear.
• Offer to help make the situation better.

Coping with Delusions

Delusions are fixed ideas and no amount of reason, cajoling or distraction will change the delusion. For example, a delusion could be an unwavering belief that there are bugs in the shower or that someone lives with your loved one in their room. Because they’re fixed, the only way to cope with delusions is to work around it and accommodate it in some way.

Here are some tips:

• Listen sensitively to the delusion.
• Take it seriously.
• Think of a solution that will accommodate it.
• Ask the person if that solution is okay with them.

Coping with Hallucinations

A hallucination is when a person sees, hears, feels, smells or tastes something that is not there. Hallucinations can occur in the early stages of some Parkinson’s-related dementias and the later stages of Alzheimer’s-type dementia. Hallucinations can also be a side effect of fevers or medications. They may be frightening or benign. But whatever they are, it is important to have a physician evaluate the person and determine if medication is needed or if a non-drug approach will be sufficient.

Here are some tips for coping with a hallucination:

• Listen to the feelings as well as the content of the fear.
• Respond to the feelings. If benign, you might say, “Isn’t that nice to see your daughter?” If frightening, you might say, “This is awful for you. Let’s see what we can do to fix the situation.”
• Attempt distraction, such as moving to another room or doing an activity.
• Be honest: “No, I don’t see it, but I know you do.”

Coping with Delirium

Delirium is an abrupt change in the brain that causes mental confusion and emotional disruption. It makes it difficult to think, remember, sleep or pay attention. Delirium often occurs during alcohol withdrawal, after surgery, due to medication, or when experiencing dehydration or dementia. If you suspect delirium, you must contact your loved one’s physician.

Handling Sundowning

"Sundowning" (also known as sundown syndrome) is not a formally recognized condition, and there is no standard definition for sundowning or its symptoms. However, sundowning in general often refers to trouble sleeping or increased confusion, restlessness, anxiety, or disorientation that lasts from dusk throughout the night for people living with dementia.

Sundowning is thought to be due to some combination of physical and mental exhaustion from the day, disruption to one’s biological clock, a weakening ability to distinguish dreams from reality, or reduced visual perception that results in upsetting shadows or difficulty seeing in dim light. Consequently, symptoms tend to grow more severe as dementia progresses.

There is no single approach that works best for handling sundowning. Simply be aware of triggers and make modifications to avoid those triggers.

Common triggers:A heavy evening meal, loud music, TV shows, poor lighting, darkness viewed through the windows at night, and alcohol/caffeine consumption are all common sundown syndrome triggers.

Strategies for avoiding sundowning: Sticking to a regular routine and spending time outside in the sunlight can sometimes help avoid disrupting biological clocks. Often taking a walk together can help, because physical movement can be calming. In the evening, keep interiors and exteriors well-lit, and pursue quiet activities.

Ensuring Safety with At-Home Care

Dementia affects each person in a unique way. You will need to continually assess your environment based on your loved one’s current symptoms, such as level of memory loss, comprehension, confusion, wandering, disorientation, and physical limitations such as balance, coordination and mobility.

Changes in symptoms of dementia may require additional environmental alterations. Individuals with dementia may forget how to use an appliance, get lost on their own street, become more sensitive to high or low temperatures, and grow more disoriented. In addition, their cognitive and physical abilities will change over time as the disease progresses. For example, as dementia progresses, people can lose the ability to recognize themselves in a mirror and will become agitated, certain that an intruder is in their home.

Here are some tips for making environmental modifications:

• Consider how to maximize independence. Involve your loved one in decisions whenever possible, and make sure changes are compatible with them.
• If the familiar works, don’t change it.
• Start with simple solutions first.
• Tailor modifications to fit a person’s age, interests and culture. For instance, use an apron—rather than a bib—to protect an avid baker’s clothing during mealtime, or place a futon on the floor for someone who falls out of bed.
• Weigh the risk level against maintaining independence, and seek a balance. For example, a man with poor balance fell frequently when walking, but he had been an athlete and remembered how to handle falls to reduce injury. Because of this, his desire to walk and feel independent outweighed the safety need to keep him sitting down all day.
• Maintain a consistent, predictable routine for all daily activities.

Top Recommended Modifications for At-Home Safety

• Locks:
  Install deadbolts above the doors to garages, basements, outdoor areas or rooms with hazardous materials. Remove locks on interior doors to prevent being locked in. Hide a house key outside in case the door closes and locks.
• Lighting:
  Install brighter lighting and nightlights for navigating at night. Because changes in light levels can be confusing or disorienting, you may want to install additional lights in dimmer areas of your home and outdoor lights to reduce the confusion about nighttime darkness.
• Kitchen:
  Install new stove knob covers or remove knobs when the stove is not in use. Store vitamins and medications out of sight and out of reach. If you have a garbage disposal, disconnect it from the power supply.
• Firearms:
  If you own a gun, remove it from your home or store it in a locked cabinet.
• Bedroom:
  Make sure there are plenty of seating areas so your loved one can dress and undress with ease. Rearrange closets and put everything within easy reach.

Strategies for Safe Bathing and Showering

Bathing can be a challenge for caregivers. Because of changes in visual perception and general confusion, people with dementia can think showering or bathing is frightening, uncomfortable, or dangerous.

Also, people with dementia often feel humiliated by the suggestion that they need help with bathing. When confronted with perceived dangers or humiliation, most people will try to protect themselves in some way, lashing out verbally or physically, which can result in safety hazards for both caregiver and care receiver.

Tips to Get Your Loved One with Dementia to Bathe or Shower

There’s no one right answer for how to approach showering and bathing. What works for one person may not work for another. However, there are some basic tactics you can take to make showering more pleasant.

• Before suggesting a shower, prepare the bathroom. Get everything ready and make sure the bathroom is warm.
• Turn the water on and make sure it’s warm.
• Try small talk or talking about something pleasant beforehand.
• Think of a purpose for the shower, such as someone coming to visit.
• Use euphemisms rather than the word “shower.” You may find more success with “freshen up,” “brush your hair,” or other phrases.
• Make the person the expert and give them choices. “Do you think that will work?” “Which soap should we use?”
• Make it a joint activity. “Should we both get freshened up before dinner?”
• If the person is embarrassed, have a large bath towel ready so they can cover up. If the person becomes angry at something you do, apologize. “I am so sorry; I won’t make that mistake again.”
• Don’t rush the process! Leave plenty of time.
• Adjust your expectations. It can be very challenging to get your loved one to take a conventional bath or shower. Remember that it’s OK to give a sponge bath between showers and baths.

Tips for Handling Wandering

A person with dementia can become easily confused by their environment, which may lead to wandering. Sometimes, they wander for a specific reason—maybe they want to visit a friend from their old neighborhood—and become disoriented once they get outside. Other times, they wander aimlessly or go explore an area that they mistakenly think they recognize. Any person with dementia is at risk for wandering, which is dangerous for the individual and stressful for family members. To protect your loved one, you should understand what can trigger wandering behavior and take steps to prevent it from happening.

Identify Triggers

Identify triggers that lead up to your loved one wandering off. Look for patterns. Was it just accidental? If so, more vigilance is required now. For example, in strange or crowded places, do not leave the loved one alone.

If it occurs at a certain time of day, plan activities or distractions that begin just before the wandering behavior.

Nighttime wandering is more complex. Again, look for patterns: Are they going to the bathroom and that triggers a search? Or have circadian rhythms changed, and they’ve confused day and night? Whatever the trigger, for a successful intervention, begin just before the wandering begins. If you wait too long, it will be difficult to intervene.

Implement a Safety System that Makes it Harder to Wander

The first step in a safety system is to assess your loved one’s ability to make decisions. Can your loved one call 911 in an emergency, or make decisions about safety? If not, the loved one cannot be left alone unsupervised. You will also need a plan to manage supervision.

Risk can also be reduced by installing deadbolts over all doors, setting up security alarms, or using alarm mats on the side of the bed.

Sometimes environmental modifications are effective, such as painting doors the same colors as the walls or using wallpaper that looks like a bookshelf rather than a door. Another strategy is to put away all cues that could trigger an urge to leave, such as keys, coats, or shoes.

Start Searching Immediately

If your loved one does wander off, begin searching immediately.

• Generally, you should start looking nearby, within a 1.5-mile radius.
• Wanderers typically walk in the direction of their dominant hand.
• Check any previous wandering areas, as well as near brush or tree lines.
• If you can’t find your loved one within 15 minutes, call 911. State that your loved one has dementia and has wandered off. Request filing a missing person’s report.

Join a Wandering Support Program

For added peace of mind, caregivers may want to explore programs such as the Wandering Support program offered by the Alzheimer’s Association and MedicAlert Foundation. Membership in the program includes 24/7 emergency response and an ID bracelet or accessory that helps law enforcement, first responders or good Samaritans contact caregivers and coordinate the safe return of their loved one.

Reducing Fall Risks

Fall risk is very high with dementia. As dementia progresses, impairment in gait, balance, and perception also progresses. Some medications prescribed to combat the signs of dementia may also affect balance. These impairments, along with basic confusion, lead to a tendency for falling. A thorough assessment of your home and your loved one’s safety can be your biggest tool to prevent falls, because it alerts you to areas needing urgent correction. Within the home, check for:

• Flooring:
  Is it slippery, cluttered or an uneven surface? Are there area rugs?
• Furniture:
  Are there unstable tables or chairs?
• Electrical cords:
  Are they on the floor or draped across desks and tables?
• Bedspreads:
  Do they reach and partially cover the floor?
• Grab bars:
  Are there any grab bars? Are they stable?
• Desired items:
  Are they easily accessible? Are they within reach?

When assessing a person with dementia’s safety, consider:

• Improper wearing of shoes (such as on the wrong foot) and clothes.
• Gait and balance problems.
• Dizziness and orthostatic hypotension (a form of low blood pressure).
• Urinary problems (frequency, urgency, incontinence).
• Improper use of walker or cane.
• Compromising medical conditions (Parkinson’s, degenerative joints, compromised breath control).
• Sleep disturbances.
• Hostility, anger, and mood changes.

Tips for Safety While Eating

Every dementia stage is characterized by changes in eating habits and skills. Those in the early stages of dementia often lose interest in formerly enjoyed foods and tend to prefer the same meals day after day. They can eat unassisted and correctly use all utensils, but they cannot eat and talk at the same time.

Those in the middle stages of dementia show pronounced changes in eating skills. Use of utensils is often limited to a spoon or the combination of hands and a spoon. Spills go unnoticed. Napkins, placemats, or loud music can become a distraction from the task of eating. They might gorge themselves or eat too quickly or eat too slowly. As dementia progresses, your loved one may eat non-edible items, because they don’t recognize what is or isn’t food. Food is sometimes hoarded or held in their cheek.

When the late stage sets in, someone with dementia is essentially unable to eat without total assistance. Both perceptual problems and motor problems prevent them from getting food to their mouth, and it might limit chewing and swallowing. For both the moderate and late stages, the caregiver must provide basic prompts, including gestures, demonstrations, and hand-over-hand assistance.

Safety is always a major consideration for any person in the middle to late stages. Here are some safety tips for helping a person with dementia eat:

• Never leave a person with moderate to late-stage dementia unattended while they are eating.
• Cut food in bite-size pieces.
• Provide verbal prompts to keep them focused on eating.
• Provide gestures, demonstrations and hand-over-hand prompts to help them begin eating or to assist with the steps of eating.
• If possible, have them sit upright and tilted forward slightly to prevent choking.
• Check food temperature before serving it.
• Lock up or hide dangerous chemicals including liquid detergents and other household cleansers.
• If they hoard food, find a non-humiliating way to remove food from wherever they’re storing it.

Psychosocial Aspects of Support

Of all the changes faced by a person with dementia, probably the most painful is loss of identity, often called “the loss of self.” It is bad enough to struggle with basic daily activities, but memory impairment and the resulting confusion can also lead someone to feel like they no longer “fit” in the social world.

Coping skills are gone, it becomes harder to get started with an activity, and apathy and isolation set in. Caregiver attempts to motivate are typically met with “No, I don’t want to,” because the person with dementia doesn’t know how to start or complete an activity. This leads to depression and accelerates further decline—but this decline can be made less severe if caregivers find strategies to overcome apathy and enrich the environment.

Overcoming apathy requires strategies based on the life story and underlying identity of the person with dementia. A caregiver needs to entice the individual with dementia, then reassure that person that they will be successful.

Here are some tips:

• Provide a truthful reason to do so something. “I need your help making salad. Can you tear the lettuce for me?”
• Relate the request to past interests. “Let’s go to Betty’s recital! She’s playing all your favorite Mozart pieces.”
• Make the person feel needed. “Mary and Angie are looking forward to seeing you in the church group. I don’t think you want to let them down. They would be so disappointed if you didn’t come!”
• Give reassurance. “You have always liked doing this craft. I will be there beside you to make sure we get each step right.”
• Find the “key” that unlocks motivation. Take note of words or enticements that work; these are unique to the individual, so you’ll have to experiment to find them.

Natural opportunities for social engagement, such as visits from old friends or attending family celebrations, can be successful as well. Following a few tips can make the experience a positive one both for the person with dementia and their friends or family members:

• Prepare friends and family in advance for what to expect.
• Let groups know that if the loved one becomes agitated, you will take them away from the group.
• Keep gatherings small.
• Speak slowly and simply to the loved one.
• Listen to the loved one and give them time to talk.
• If the loved one becomes confused, angry, or offended by a conversation, change the subject or take the loved one away from the group.

Maintaining Cognitive Function

All people need to maintain cognitive function to keep their brain agile. When we are young, the tasks we perform as part of our career, school, and other social activities are often sufficient. But when we retire and especially when we have dementia, we need consistent practice to ensure Whole Brain Fitness.

Whole Brain Fitness comprises three pillars: Mind, Body, Spirit. All three are required for successful aging.

Adapting Your Approach to the Progression of Dementia

Dementia is not a static state.

Your loved one’s abilities and preferences may change on a daily or weekly basis, and they will certainly change as dementia progresses. Consequently, you’ll need to modify the way you care for your loved one over time. Providing more help with bathing or adjusting your strategy for bathing, making dining odifications, or seeking out new activities better suited to their function level will all be necessary at some—or multiple—points.

Refer back to the Cardinal Principles often as a guide when you refine your caregiving approach. In addition, be sure to check in with your loved one’s physician periodically; they may recommend certain modifications. At some point, you may also find it helpful to adjust your care strategy to include at-home care or a memory care community.