Caregiver FAQ

I always forget where I put things, do I have a dementia-related condition?

As you age, it is normal to occasionally lose your keys. A person living with dementia may not recognize what the keys are used for. Dementia refers to losses in memory, problem-solving, language, and other areas of thinking that interfere with daily life. Dementia is not a disease, it is a condition that can affect a person’s cognition, behavior, and mood.

If you have concerns about you or your loved one’s cognition, please contact your PCP or call the Dubin Center to schedule a memory screening!

What are some signs and symptoms of dementia?

• Difficulty finding words

• Trouble completing complex mental tasks, for example tasks with multiple steps, balancing a checkbook, paying bills

• Confusion about time, place, or people

• Misplacing familiar objects

• Personality changes, such as irritability or depression

• Loss of interest in important responsibilities

• Expressing false beliefs

• Changes in judgement/trouble making decisions

Is there a cure for this disease?

There is no cure for Alzheimer’s disease yet. However, medications are available that may be able to slow the progression of the disease in some people for a period of time. There may also be medication available to help manage the difficult behavior’s the PLWD (person living with dementia) may be showing. Researchers are constantly working toward a cure.

How do I communicate with the person living with the disease?

Throughout the progression of the disease, you may see changes in the PLWD’s communication that includes difficulty finding the right word, speaking less often, referring to gestures rather than oral communication, and difficulty organizing words logically.

Quick tips on communication:

• Use short, simple sentences

• Speak slowly and clearly while making eye contact

• Encourage them to join in conversation with others

• Let them speak for themselves during discussions

• Give them adequate time to respond

• Avoid creating complicated choices. For example, instead of “What would you like for dinner?” Try saying, “We’re having hamburgers for dinner tonight!”

• Avoid arguing, if the PLWD says something you do not agree with, let it be

• Demonstrate tasks to encourage participation

The PLWD is having challenges eating, they are hungry but not sitting and eating. What do I do?

You may notice a change in the PLWD’s eating habits such as forgetting how to chew and swallow, forgetting to eat, and loss of appetite. It is important to keep track of when they are eating to ensure they are not going long periods of time without food.

Here are some quick tips on how to manage these changes:

• Offer meals at regular times each day

• Prepare their favorite foods

• Be sure to allow enough time for a meal

• Offer smaller bites of moist food to help with swallowing

• Remove distractions from table

• Offer finger food for easier, more frequent eating throughout the day

• Avoid dehydration by offering a beverage with every meal and remind them to drink throughout the day

• Can they see their food? Ensure there is color contrast between the plate, placemat and tablecloth

• Are they having dental problems they can’t communicate? Do their dentures fit correctly? If they are having trouble swallowing, this is common.

• Call their physician to get speech and language therapy evaluation

• Be aware of the temperature of the food you are serving

• Fresh air and exercise can increase appetite

How do I know when I should place the PLWD?

Making the decision to place the PLWD in a facility can be a difficult one. It is important to remember that when you do decide to them, you are not only making the decision for the betterment of their well-being, but yours too.

Here are some signs that may help you know when the right time is to make this decision:

• Your person is no longer safe at home. This can be seen in different behaviors such as wandering or their susceptibility to falls

• You are feeling extremely overwhelmed. Taking care of your person is not an easy job, placing your person can help relieve some of the stress you may be feeling. Put your oxygen mask on first!

• You worry about your own safety in the home

• Your own health begins to decline

• You are feeling burnt out

How do I tell my friends and family about their dementia-related condition?

• Tell friends and family about Alzheimer’s disease and how it affects memory, thinking, and behavior.

• Use this as an opportunity to educate your loved ones about what dementia illnesses are and what to expect as the MIP declines.

• Share articles, websites, and other information about the disease.

• Tell them what they can do to help, such as come over to sit with the PLWD so you can go out and run errands, provide meals, or help with home repairs or safety modifications.

• Your friends and family care about the well-being of you and the person you are caring for, do not be afraid to ask for help, this is not an easy job.

How do I respect the PLWD’s independence while also making sure they remain safe?

It can be hard for a person with cognitive impairment or dementia to recognize they are not acting safe and sometimes it is hard for family members to spot it as well. It is best to approach this conversation with the PLWD like you are on their side. Let them know you are concerned about their safety and well-being. Sometimes it takes other people, like friends or doctors, to point out these changes. If other people have started to recommend the PLWD not live by themselves anymore, it is probably time to start thinking about some options. These could include moving in with someone else (like family or friends), moving to a senior living community or an assisted living facility.

How can I prepare for emergency hospitalizations and trips to the ER?

Always have a bag ready to go with essentials for the Emergency Room that has the following items:

• Health insurance cards

• Lists of current medical conditions, medicines being taken, and allergies

• Healthcare providers’ names and phone numbers

• Copies of healthcare advance directives (documents that spell out a patient’s wishes for end-of-life care)

• “Personal information sheet” stating the person’s preferred name and language; contact information for key family members and friends; need for glasses, dentures, or hearing aids; behaviors of concern; how the person communicates needs and expresses emotions; and living situation

• Snacks and bottles of water

• Incontinence briefs, if usually worn, moist wipes, and plastic bags

• Comforting objects or music player with earphones

• A change of clothing, toiletries, and personal medications for yourself

• Pain medicine, such as ibuprofen, acetaminophen, or aspirin—a trip to the emergency room may take longer than you think, and stress can lead to a headache or other symptoms

• A pad of paper and pen to write down information and directions given to you by hospital staff

• A small amount of cash

• A note on the outside of the emergency bag to remind you to take your cell phone and charger with you

• Some comfort items for home that will help your person feel comfortable

What can you do to make things go smoother at the ER?

• Ask a friend or family member to go with you or meet you in the ER. He or she can stay with the PLWD while you answer questions.

• Be ready to explain the symptoms and events leading up to the ER visit—possibly more than once to different staff members.

• Tell ER staff that the person has dementia. Explain how best to talk with the PLWD.

• Comfort the PLWD. Stay calm and positive. How you are feeling will get absorbed by others.

• Be patient. It could be a long wait if the reason for your visit is not life-threatening.

• Recognize that results from the lab take time.

• Realize that just because you do not see staff at work does not mean they are not working.

• Be aware that emergency room staff have limited training in Alzheimer’s disease and related dementias, so try to help them better understand the PLWD.

• Encourage hospital staff to see the person as an individual and not just another patient with dementia who is confused and disoriented from the disease.

• Do not assume the PLWD will be admitted to the hospital.

• If the PLWD must stay overnight in the hospital, try to have a friend or family member stay with him or her.

• Do not leave the emergency room without a plan. If you are sent home, make sure you understand all instructions for follow-up care.

Challenging Behaviors

Most of the Challenges caregivers face have a root cause. If the PLWD is having a behavior DON’T JUST DO SOMETHING, STAND THERE! First look to see if it’s physical, environmental or an issue with poor communication. Then use this list to possibly discover the root cause of the problem.

Root causes of behaviors stem from four primary areas: Physical wellbeing, Environmental factors, Communication deficits, and Issues with activities of daily living.

Common behaviors include: Agitation, anxiety, sadness, tearfulness, anger, mood swings, repetitive statements, sundowning, resistance to care, hygiene issues, incontinence, and shadowing.

Problems with behavior, physical:

• When someone is having a sudden onset of a behavior, the first thing we should check is their physical health. Are they constipated? Could they have a UTI or another infection?

• Are they hungry or thirsty? Could they be dehydrated?

• Are they having pain? Are they bruised anywhere or have a new injury or ailment causing pain?

• Are their pants too tight or are their clothes ill-fitting?

• Do they have to use the bathroom?

• Are they having side effects from medication?

• Could they be having a hallucination or delusion?

Problems with behavior, environmental:

• Is there too much commotion in the current environment?

• Is the climate okay? Are they too hot or too cold? Often, people with dementia are cold.

• Is the environment familiar or has the furniture been rearranged?

• Is the lighting poor or too bright?

• Is the environment overstimulating the PLWD?

Problems with behavior, communication:

Communication is oftentimes the greatest challenge for caregivers. People with dementia have poor memory, distorted perception, and judgement along with altered thinking. This causes a huge breakdown in communication. Sometimes they confuse the words yes and no or are not able to articulate their thoughts. We must anticipate their needs for them when this occurs as they may be no longer able to communicate their needs.

When someone is having a behavior, we must first check if their basic needs are met.

• Is poor vision or hearing causing a distortion or misinterpreted sights and sounds?

• Are they having a hallucination or delusion?

• Is the task they are doing too difficult or are they bored?

• Does the person feel useless while watching others do tasks?

• Do they need more exercise throughout the day?

• Are they anxious?

• Do they feel rushed with a task?

• Are you speaking too fast?

• Check your energy, your mood is contagious.

• Has there been a change in their schedule?

How can I deal with these behaviors every day? My person is so mean to me and all we do is argue.

Questions to ask yourself are:

• Were there any triggers causing the plwd’s mood change?

• Could their disease be progressing?

• Were there any cues the MIP was sending out prior to becoming agitated?

• Are they bored or overstimulated?

• Remember, you cannot argue with a person with dementia. People with dementia have lost their ability to reason and judge. They also suffer from impaired perception, executive functioning, language and abstraction skills.

• The best thing you can do is to step into their world as it is too difficult to get them to enter ours. To learn more about how to do this, sign up for The Savvy Caregiver course

The PLWD has had a sudden onset of incontinence, what should I do?

• Check to make sure they don’t have an infection. Once that has been ruled out, it is possible they may have forgotten where the bathroom is or how to use it. Speak with your physician about a PT/OT evaluation to help you and the PLWD learn how to stay at the highest functioning level.

• If it’s something new, check and make sure they aren’t dehydrated or have a Urinary tract infection.

• Is the person out of their normal routine?

• Did they have too much caffeine today?

• Ask your physician for an OT evaluation for toileting issues. Sometime people with dementia forget how to use the bathroom and an Occupation therapist can help retrain the plwd and the caregiver, to prevent accidents

• Limit Fluids in the evening

• Watch for any pulling on clothing or other behavior that could signal using the toilet

• Take the person to the bathroom after meals and every two hours

• Remind the person to use the bathroom

The PLWD refuses to take a shower, what should I do?

When showering someone with a memory impairment, first check to see how they showered when they were well. Maybe they took baths or sponge baths during the week and a shower on Sundays. If they are a woman, maybe she never got her hair wet and would go to the beautician weekly for a wash and set. Maybe they are embarrassed about taking their clothing off, if so try letting them in the shower with their clothes on. Their clothes then become heavy, and they instantly want to take the clothing off. Maybe they are afraid of the water, it can be scary due to perceptual changes. Ensure the bathroom is ready to go with a spa like experience. Have everything ready to go, shower on, towels out and ready. Ensure they are in the mood to shower and don’t force it, remember that their skin is thin as they are older and now only require showers 2-3x/week. Pick your battles.

The PLWD keeps going out the door, how do I stop them from wandering?

Many times, the person wanders because they are bored. Ensuring they are involved in an activity they find enjoyable and stimulating as well as getting enough exercise can be helpful in minimizing wandering. Take them on a scheduled walk as part of your daily routine. Also, why are they wandering? Are they trying to get home? Ask them about their home. Use this opportunity to engage them in reminiscing. Try putting a tile in their shoe. Obtain a scent kit from the Dubin Center and sign up for the ReUnite program.

The PLWD just sits there and stares off into space. Is this normal?

Yes, apathy is one of the main symptoms of dementia. Sometimes people become passive with activities and just being around stimulation (like a family visit) can be meaningful.

Beginning to experience memory loss can become a stressful and uncertain time.

Community Resources


Free Scent Kit Delivered to Your Home

As a local United Way agency, we work with our community partners to keep our clients safe. The ReUnite Program is a community based collaborative program between the Lee County Sheriff’s Office and the United Way, a non-profit organization, dedicated to improving the quality of life in our community.

The goal of this program is to aid first responders in search and rescue operations for at risk individuals who may be prone to wandering or getting lost. For more information on the program, please email [email protected] or call (239) 433-3900.

The Dubin Center now has scent kits available at our office and one of our team members can assist you with the application process. Call our office to learn more (239) 437-3007


African American Caregiver Training and Support. Click below to get the details for a great opportunity.

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