In our blog post titled “My Name is Not Early Onset Alzheimer’s Disease”, we discussed the importance of learning and understanding someone’s history to ensure they maintain their personhood instead of being defined by their disease. We also asked the question of how care partners, family members, friends, healthcare professionals, and communities can change their perspective.  This can be accomplished by considering the power behind words we use when talking about those who have been diagnosed with the disease.

The words used to talk or write about those living with early onset Alzheimer’s disease has a significant impact on how they are treated by those around them. Additionally, the words we use have a strong influence on beliefs and opinions formed by our communities.

Consider for a moment how you feel when negative language is used to describe you or someone you love. Most likely, those words have a direct impact on your mood and self-esteem. Now imagine you’ve been diagnosed with early onset Alzheimer’s disease. With one diagnosis, you are no longer defined or recognized as the unique individual you’ve been since the day you were born. Instead, you are defined by your diagnosis and symptoms. People begin talking about you—not necessarily to you.

Knowing the facts about the disease is vital. Making assumptions about a person’s abilities based upon stereotypes of the disease, guarantees a negative outcome. While early onset Alzheimer’s disease can affect language skills, planning, problem solving, and sensory perception, there are many symptoms that may be experienced throughout the disease process, yet each person experiences the disease differently. Every person’s brain stores their unique personality, characteristics, and experiences. The truest statement ever spoken was, “When you meet one person with the disease, you’ve met one person with the disease.”

Typically, the language used to describe early onset Alzheimer’s disease focuses on the negative aspects of the disease. The words used often focus on the losses experienced. This leads to continued stereotypes and approaches to care that focus on weaknesses instead of one’s continued abilities and strengths.

In the last two months of Gayle’s life, she experienced a medical crisis that resulted in a lengthy hospital stay and subsequent placement in a memory care facility. While I understood the need for assessments and medical language to describe her condition, I did not anticipate her diagnosis and decreased abilities would become her new identity. There were many people who didn’t talk to her, they talked about her. The terms used to describe her were often “stinging”. Rarely were people discussing Gayle, the person. Her identity became an ever-growing mountain of terms and words that came across as demeaning.

A shift is beginning to happen and people are using more sensitive and honoring language, but there is still much education to be done. The language used to talk about those living with early onset Alzheimer’s disease, their care partners, and the disease itself, must be:

• Accurate
• Empowering
• Healing
• Inclusive
• Non-stigmatizing
• Respectful

The Gayle Wells Foundation for Early Onset Alzheimer’s & Care has created a document titled Language Guidelines: Reframing for Respect that provides a list of terms often used to describe those living with the disease and their care partners. In the document, we provide a chart that details language to be avoided, language of respect, and reasons for the change.

We invite you to share with us in the comments section below, any words or terms that have been used to describe you or your loved one, that you found offensive or demeaning. We want to continue to build our language guidelines with input from our early onset Alzheimer’s community.

If you’re living with early onset Alzheimer’s disease or caring for someone with the disease, relaxation is not an easy thing to attain during the day. National Relaxation Day is Saturday, August 15, and below are some suggested activities that may provide relaxation and new memories.  The activities can be done with family members living in your home as well as individually. Give yourself permission to take a moment and breathe.

• Listen to comforting, soothing music
• Look at photos
• Paint with non-toxic watercolors
• Draw or color
• If able to watch TV, watch a favorite movie
• Create albums or scrapbook of photos, newspaper clippings, cards, etc.
• Tell your loved one you’re glad you have this time with them
• Have a picnic in your backyard or place a blanket on your living room floor for an indoor picnic
• Have food delivered from your favorite restaurant
• Enjoy a cup of coffee, tea, or favorite beverage together
• Make root beer floats
• Make your own sundaes

I’ve just been diagnosed with early onset Alzheimer’s disease. So many decisions to make but I know my family and friends will be supportive. Surely society will understand that I’m still myself and they will allow me to continue living my life in the best way possible.

The statement above is what we wish would happen when a person is diagnosed with early onset Alzheimer’s disease, but it is often not the case. Too often, the person with the disease is immediately treated differently. The person’s identity is stripped away and replaced with the label of their diagnosis and symptoms. People with early onset Alzheimer’s disease are often described as “victim” or “sufferer”, and these descriptions render them as “less than”. In the words of Dr. G. Allen Power, “We are quick to assume that people’s capabilities are less than they are, and we treat them accordingly.  A focus on deficits makes us quick to position people as incapable and we disempower them.”

Early onset Alzheimer’s disease does not cause someone to stop living their life nor does it render them useless in society. Each person is a unique individual with their own personality, history, relationships, memories, thoughts, talents, ideas, roles within families and communities, cultures, beliefs, and occupations. Each individual has their own unique heart and soul.

“We’re still here. We still have ideas and can express them. Just be patient and listen to us. We are real people! There is a difference between the people and the disease. The disease is what makes us different.” –Robert Simpson

It’s time to shift perspectives about those living with early onset Alzheimer’s disease. Recognize their individuality and honor their history. This allows them to maintain their identity instead of being defined by the disease. How can we as care partners, family members, friends, and healthcare professionals change our perspectives? We must move beyond placing misguided judgements and limitations on those living with the disease. Our goals should be to “preserve identity, celebrate personhood, and create meaning in the moment.”  (1. Power, Dementia Beyond Disease, 42.)

Below are ten (10) steps to enhance the identity of those living with early onset Alzheimer’s disease:

1. Focus on the whole person, even when their experiences are shifting as a result of the disease.
2. Talk to the person instead of about the person. They are not just a list of symptoms and losses.
3. View life from their perspective so you can understand how to best support them.
4. Allow them to be involved in their life.
5. Engage in conversations with them about their feelings, abilities, concerns, fears, and desires.
6. Listen to them unconditionally, without interruption. Listen with your heart and soul.
7. Live in the current moment instead of focusing on the past.
8. Be patient and loving.
9. Keep in mind that care and support is not a “one size fits all”. Honor their unique characteristics, hobbies, interests, and desires.
10. Provide an environment of security and respect.

We invite you to read the statements titled “Our Beliefs”, which outlines our philosophy for those living with early onset Alzheimer’s disease as well as their care partners and families.

Join us next week as we continue the discussion of how to honor and respect those living with early onset Alzheimer’s disease with our blog post titled “Reframing for Respect: Words that Heal”.

1. Power, Allen G. Dementia Beyond Disease (Baltimore: Health Professionals Press, Inc., 2014), 42.

Urinary tract infections (UTIs) are an uncomfortable and miserable experience. However, when someone has early onset Alzheimer’s disease (EOAD) or other forms of dementia, the infection becomes much more problematic. Whether the person is living at home or in a memory care facility, care partners must pay close attention and look for warning signs that could indicate the presence of an infection.

What is a Urinary Tract Infection?
A urinary tract infection (UTI) occurs in the urethra (where the urine comes out), bladder, and kidneys. They are typically caused by germs that enter the body through the urethra. UTIs are more common in women than men, as the urethra is shorter in women, thereby the bacteria has less distance to travel to reach the bladder.

What Causes a Urinary Tract infection?
There can be many causes of UTIs, but for those with EOAD and other forms of dementia, a leading cause comes from increased difficulty in cleaning themselves after using the bathroom. When incontinence occurs and they need to wear disposable underwear, the risk of infection increases as underwear may not be frequently changed. Continuing to sit in dirty underwear allows germs to easily enter the urethra, leading to a UTI.

Additionally, UTIs can occur when the person is not drinking enough liquid to stay properly hydrated. Urine becomes more concentrated and can cause inflammation to the lining of the bladder, thereby increasing the risk of infection.

Symptoms and Signs of a Urinary Tract Infection
The common signs and symptoms of a UTI for most people include:

• Urgent need to urinate
• Urine that looks cloudy and/or dark (very dark yellow or brownish in color)
• Urine that has a strong odor or contains blood
• Burning or pain when urinating
• Fatigue
• Pain, pressure, or discomfort in the lower abdomen, back or sides

For those living with EOAD and other forms of dementia, the signs and symptoms of a UTI often display as sudden changes in behavior. As the disease progresses, your loved one may not be able to verbalize their pain and discomfort, so it becomes critical to watch for visual cues as well. Signs and symptoms to watch for include:

• Sudden outbursts and agitation
• Increased confusion
• Drastic decline in mental function
• Changes in appetite
• Unexpected falls
• Increased or sudden incontinence
• Continually having to use the bathroom
• Holding their stomach or saying their stomach and/or back hurts
• Pulling at their clothes (especially the waistband of their pants)
• Facial expressions that indicate discomfort and pain
• Moaning

How to Treat a Urinary Tract infection
If you suspect your loved one has a UTI, don’t wait to see if it gets better. Call their doctor right away. UTIs are extremely hard on people with EOAD and other forms of dementia, and can cause serious health problems if left untreated. Confusion and agitation increase due to the infection, so you need to get them treated right away.  Their doctor will collect a urine sample and possibly perform other tests to determine the diagnosis and prescribe treatment.

How to Prevent a Urinary Tract Infection
The following steps can be taken to help reduce the occurrence of a UTI:

• Have your loved one drink plenty of fluids. It is easy for the person with EOAD to become dehydrated, especially in the mid to late stages of the disease.  As their care partner, don’t wait for them to ask for something to drink.  Give them 6-8 glasses of water or beverage that they like (not alcohol). Offer the liquids frequently, as it will help keep them hydrated.
• Cranberry juice has been shown to help reduce UTIs.
• Fruits, vegetables, and foods high in fiber can help prevent constipation, another cause of UTIs.
• Foods that have a high-water content can also help with hydration. (See our blog post “Hydration, Hydration, Hydration”.)
• Set a bathroom routine of every two (2) hours. This helps keep the bladder empty, preventing your loved one from holding their urine for long periods of time.
• Keep a clear path to the bathroom.
• Help your loved one maintain good hygiene. Have a supply of personal hygiene wipes next to each toilet in the house. These wipes can be used to clean the genital area each time they use the bathroom.
• If your loved one is using disposable underwear, make sure the underwear is frequently changed, and the genital area is cleaned with wipes every time their underwear is changed.
• If your loved one lives in a memory care facility or nursing home, please have a conversation with the staff to ensure the above steps are taken with your loved one.

We often associate the risk of dehydration with rising temperatures during the hot summer months. However, dehydration can happen any time someone is not taking in enough fluids. For those living with early onset Alzheimer’s disease and other dementias, the risk of dehydration is increased. If you are a care partner to someone with the disease, it can be easy to lose track of their fluid intake with the numerous tasks you encounter throughout the day.

It only takes a 2% loss in body fluid, that isn’t replaced, to cause mild dehydration. Signs of dehydration can include:

• Increased confusion
• Weakness
• Less frequent urination
• Dark-colored urine
• Constipation
• Muscle cramping in arms and legs
• Fatigue
• Dizziness
• Headaches

There are a variety of reasons that lead to a higher risk of dehydration for those with this disease. Causes of dehydration throughout the stages include:

• Early stages: a person may simply forget to drink because they are less sensitive to thirst and/or cannot recall when they last took a drink.
• Moderate stages: a person may struggle with remembering the mechanics of how to get a drink—how to turn on the faucet, where the glasses are kept and how to get the beverage into a glass. It may also be increasingly difficult for them to hold a glass or drink from it without the use of a flexi-straw or modified cup.
• Advanced stages: the risk of dehydration is most severe in this stage as one’s sense of thirst may be lost, or they are unable to express their need for a drink. It can also be difficult for care partners to recognize their loved one is thirsty.

Additional causes may also be attributed to medication side effects. Some prescription medications have a diuretic effect, which means additional fluids are being lost due to the medication.

Ideally, your loved one should be consuming 6-8 cups of fluid each day. Below are some suggestions to promote fluid intake:

• Make fluid intake a “team” effort.  As a care partner, it is important for you to also stay hydrated. Take time throughout the day to sit and have a glass of water or cup of herbal tea together.
• Prompt them to drink often.  Give your loved one a small glass of water every 60-90 minutes. Drinking smaller amounts of liquid at a time can be easier than presenting them with a large glass of water, which may feel overwhelming.
• Eliminate challenges.  If your loved one has difficulty holding or drinking from a glass, take steps to eliminate those challenges. Small no-spill cups with a handle can improve their confidence. There are many cup options for adults, so you don’t have to buy one that is meant for a child. Flexible or one-way straws can also help if drinking from a glass becomes difficult. Clear liquid can be hard for them to see in a clear glass, so adding fruit can make it easier to identify the water.
• Provide them with options.  While water is always the best option for hydration, your loved one may not enjoy the taste of plain water. As the disease progresses, adding flavors can help with fluid intake.  Adding fruit to the water, such as strawberries, lemon, oranges, pineapple, and blueberries, can increase flavor. Fruit juices can also be diluted by adding a small amount of water. Sports drinks and Pedialyte have a stronger flavor and also contain salts, minerals, and electrolytes.
• Review medications with your physician.  If your loved one is taking medications that increase the risk of dehydration, we recommend talking with your physician. They may be able to provide additional suggestions for promoting hydration.
• Add foods throughout the day with high water content.  As you prepare meals, consider adding food items with a high water content. Below is a list of ten (10) foods and their corresponding water percentage. The percentage is based upon a one-cup serving:
  • Lettuce – 96%
  • Cucumber – 95%
  • Tomatoes – 94%
  • Watermelon – 92%
  • Bell peppers – 92%
  • Strawberries – 91%
  • Cantaloupe – 90%
  • Peaches – 89%
  • Oranges – 88%
  • Cottage cheese – 80%

Broth-based soups are also a good option. It’s also nice to provide items as special treats, such as popsicles, hot chocolate, lemonade, applesauce, and Jell-O.

If your loved one is living in a memory care community, please ask the staff what steps are taken to ensure residents stay hydrated. If they tell you that beverages are available in the refrigerator for residents when they get thirsty, please ask them to give your loved one something to drink every 60-90 minutes. It is within your right to advocate for your loved one to get the proper amount of hydration they need each day.

Next week’s post will focus on the causes and implications of urinary tract infections, which can often result from being dehydrated.

Red, white, and blue…the Fourth of July is a day of celebrating with BBQs, outdoor activities, and fireworks. While large community gatherings have changed this year, the tradition of fireworks is still taking place in many communities throughout the country. While fireworks can bring great excitement to many, that is not always the case for those living with Alzheimer’s disease and other dementias.

Your loved one may have once loved fireworks, but Alzheimer’s disease and other dementias may cause them to react differently. The loud noise from fireworks can become unfamiliar and create confusion and fear, which can intensify anxiety and agitation. Each pound of firework explosive carries an average of 150 decibels of sound, the same sound level of a jet plane taking off and significant enough to cause ear drum rupture. The disease can also cause one’s hearing to become more sensitive than before, which can exacerbate the sound and cause additional distress. Additionally, the flashing lights and changing colors may also trigger fear leading to increased agitation and anxiety.

If fireworks cause anxiety and fear for your loved one, these suggestions may help reduce the stress:

• Encourage your loved one to talk about fireworks. Did they find fireworks exciting and fun or too loud and scary?
• Remind your loved one that the celebration is coming up and they may begin to hear fireworks.  While they may not recall that you told them, a consistent reminder in a soothing tone can help.
• Early in the day may be a good time to show them a video of fireworks. There are many firework videos available on YouTube. Mute the sound and explain to your loved one that these lights in the sky will happen in your community that night and you will be with them until it’s over.
• If the lights from the video bother them, then close the blinds and drapes in your home before sunset to block out the flashing lights.
• A fan creates the sound of white noise, which can help block out the sound of fireworks. Ear protection (ear plugs or headphones) can also help.
• Fireworks can sound like gunshots, which can be scary, especially if your loved one is a war veteran. If fireworks are expected in your community, play their favorite music or audiobook through headphones to distract them from the noise.
• The Fourth of July can be a great time to form new memories. Ideas of things to do together include making crafts, baking Fourth of July themed desserts, and decorating the house. This can also double as art therapy. Making decorations may have a positive, stimulating effect on those with Alzheimer’s disease and dementia.

The actions your loved one displays is their way of communicating. As care partners, we must be respectful of their needs and how they are feeling. Implementing precautions to meet your loved one’s needs can lead to an enjoyable day for everyone. We wish you a safe holiday weekend.

By:  Emily & Scott Sutherland

According to the National Alliance for Caregiving and the Alzheimer’s Association, approximately 12% of care partners live more than an hour from their loved ones with Alzheimer’s disease. However, with COVID-19 restrictions keeping memory care facilities closed to visitors, many more care partners now find themselves facing the challenge of staying connected and involved in the health of Alzheimer’s patients without being physically present.

Preemptive Planning

If the person is still living at home and you can plan a visit, be sure their living space is safe and everything is in working order.  For example, making sure their appliances are functioning well, walking areas free of tripping hazards, and other potential safety issues in their living space.

Simple thoughtful gestures such as labeling cabinets and drawers, providing clear instructions for the use of household items like the television remote or coffee maker can empower your loved one with support when you can be there to show them. They may also appreciate a list of names and phone numbers (or photos with phone numbers for those who struggle with reading) to help empower them to reach out to others as needs arise.  The Gayle Wells Foundation has created a home safety checklist that can serve as a useful guide in assessing the safety of your loved one’s living situation.

Everything runs more smoothly with a bit of extra planning and organization. If you haven’t already begun to help with the person’s finances, moving to online bill payment allows you to manage their bill payments remotely, protecting the patient from having laps in service or overpaying due to confusion or inability to keep track of their accounts.

Building Partnerships with Healthcare Professionals

The nurses, doctors, and other healthcare professionals are likely working harder than ever right now and need to know they are appreciated. Additionally, building bridges with your loved one’s care team creates an important partnership where ideas can be exchanged, health updates given, and messages relayed as needed.

If you haven’t done so already, it is helpful (as early after diagnosis as possible) to ask your loved one to provide you with written permission to access their medical information. Once this has been done, doctors and specialists can include you in all communication pertaining to your loved one’s health. Being able to assist a person with Alzheimer’s to keep appointments, track medications, as well as communicate with doctors and specialists, will help you advocate for them, either in person or from a distance.  When you have built a strong, communicative relationship with health care workers or others who have direct contact with your loved one, they can notify you of any unmet needs or changes in their condition.

The Gayle Wells Foundation has created a checklist of common symptoms/changes that could be helpful in assessing the progression of symptoms or overall well-being of your loved one.  Categories of symptoms/changes to assess include:

• Communication
• Social engagement
• Judgement / decision making
• Orientation / recognition to time, place and people
• Bathing & grooming
• Nutrition & hydration
• Toileting
• Physical
• Wandering & safety

Building Strong Bonds

Aside from the necessary details of caring for loved ones’ health, the truth remains that Alzheimer’s is an isolating reality. The most important thing we can do for people with this disease is continually assure them that they are valued, loved, and known, even from a distance. One gripping news story recently showed a husband singing to a love song to his wife of more than fifty years through the window of her care facility.

The use of technology in order to stay connected, through phone calls or video apps can be a helpful way to connect with loved ones. Technology may become increasingly challenging as the disease progresses, however, so for people in later stages of the disease, remote connection will require an entirely new level of energy and creativity.

You may find it helpful to think of ideas using the five senses:

Sight – Sending visual expressions of care might include photographs, signs or drawings to hang in their living space, scrapbooks, or cards with beautiful things that hold special significance to them. Silk flowers can brighten up a space without requiring the water or upkeep fresh plants or flowers require.

Sound – Music is a powerful gift that touches the soul in a unique way, but especially those with memory issues. Consider ways your loved one can enjoy recordings of a favorite artist, genre or era, perhaps with the help of care workers or even playing music through your phone.

Smell – There’s nothing quite like the familiar smell of a favorite candle or flower to trigger feelings of comfort and contentment. Even a favorite perfume or essential oil on a cotton ball can be enclosed with a letter and can offer a meaningful touch of thoughtfulness.

Taste – A care package with a favorite treat or beverage is another thoughtful option. One woman remembered her mother’s lifelong love for ice cream and found ways to make sure her mother was served ice cream whenever possible.

Touch – A soft blanket, stuffed animal, or cozy shawl can provide a pleasing sensory experience in all stages of the disease, even when other senses begin to fade. Helping your loved one feel physical comfort can even be as simple as sending lotion for healthcare workers to apply to dry skin, or warm socks for those who tend to have cold feet. Gayle Wells, who was an animal lover, enjoyed visits from a pet even when the disease took its rapid decline.

One of the misunderstood truths about Alzheimer’s disease is that the person you know and love is still that person at a deep, internal level, even when they cannot communicate with you. People in all stages of Alzheimer’s or dementia can still feel emotions and sensory input, whether or not they can communicate them. Even when you are exhausted and aren’t sure you are getting through, know that your care is more essential than your loved one can tell you. Take lots of deep breaths and take heart in knowing that your role in fighting this disease is vitally important. And you can be sure the Gayle Wells Foundation is here to support you in any way possible.

You are the reason this Foundation exists, so please let us know how you are doing, what you need, and what you are discovering that could help others who are caring for a person with this disease.  You can reach us at laura@gaylewells.org.

The Gayle Wells Foundation for Early Onset Alzheimer’s & Care (GWF) is offering online forums to provide support and education to those caring for someone with Alzheimer’s disease or dementia.  Each session will provide specific tools and resources to assist in caring for yourself as well as the person living with Alzheimer’s disease or other form of dementia.  In addition, these sessions create an opportunity to build relationships with others and gain emotional support.  We have scheduled sessions through April 18 and will continue to add sessions as we continually assess the needs of our community.  These sessions are at no cost to participants, and you can attend as many sessions as you wish.

To access complete session descriptions and meeting links, please click here.

We are living in unprecedented times as we experience the impact of the coronavirus (COVID-19).  There are many opinions on whether the steps taken have been excessive, but when you are dealing with a pandemic, being complacent can be dangerous. This disease has drastic consequences for individuals with compromised immune systems, as well as those over the age of 60. Individuals living with Alzheimer’s disease and other related dementias are at an increased risk as well, and it is vital to take all steps necessary to ensure their health and well-being.

We are aware that many care facilities have begun restricting visitors and have implemented new visiting guidelines. Dementia day and respite programs have also begun to make changes, with some closing for the next several weeks. This can create additional stress to an already taxing situation for the person with the disease, their care partners, and families.

If you find yourself in this situation, we ask that you please be mindful that in addition to the stress you are experiencing, the daily routine of your loved one is also changing.  Your loved one may be feeling anxious, scared, depressed, confused and may not understand what is happening in the current situation. These feelings of uncertainty may be displayed in any of the following ways:

• Restlessness
• Pacing
• Yelling
• Searching and rummaging around for something
• Refusing to do something

Tips for deescalating feelings of uncertainty and agitation include:

• Remain calm and comforting
• Do not get angry or criticize your loved one
• Redirect the person’s attention to another activity or topic
• Minimize the stimuli in the environment (i.e. turn off the news on TV)
• Reassure your loved one that you are there, ask if you can help, and let them know they are safe
• Play their favorite music

We also encourage you to follow the recommendations from public health officials to keep your home and community safe and disease free.

• Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use an alcohol-based hand sanitizer.
• Avoid touching your eyes, nose and mouth with unwashed hands.
• Avoid touching your loved ones face with unwashed hands.
• Avoid close contact with people who are sick.
• Stay home when you are sick.
• When coughing or sneezing, cover your mouth and nose with flexed elbow or tissue.
• Clean and disinfect frequently touched objects and surfaces.

Please take a moment to click on the links below to follow us on Facebook and Instagram, as we will be posting activity and stress-relief ideas to assist you during this time.

Facebook:  https://www.facebook.com/gaylewellsfoundation

Instagram:  https://www.instagram.com/gaylewellsfnd/

Please take good care of yourself and your loved ones.

Warmest regards,

Laura Sutherland, LMSW
Founder & Executive Director

By:  Todd Wagoner, LCSW

What’s predictable about Alzheimer’s disease and other types of dementia is that the disease itself is unpredictable.  For many care partners who observe the progression of dementia, it’s not unusual to see changes in the care recipient’s ability to process and remember the information they receive as well as experience an overall decline in their functional abilities (bathing, dressing, eating, and sometimes, walking).  Care partners routinely wake up knowing that not every day will be the same.  Some days a care recipient will reflect the spouse or parent they were twenty years ago, leaving the care partner to think the disease doesn’t exist.  However, care partners may wake up only to observe the personality is completely different and displaying behaviors they would never think to see.  In these moments, care partners benefit in knowing key strategies to help guide them through difficult moments that can rise to the level of a possible crisis.  Here are some ideas to keep in mind:

1. Differing Realities – As noted, the care recipient perceives the world differently, so their ability to communicate their needs (hunger or pain) and understand why they are anxious requires the care partner to be prepared to know how to respond when difficult moments arise.
2. Personal Inventory – As a care partner, be mindful of your temperament.  Does your face or actions express stress and frustration?  If so, the care recipient will reflect your feelings, so it will be important to be patient, create a calm atmosphere, and be aware of your feelings and actions.
3. Slow Down – Approach the care recipient with a smiling face and know your nonverbal tone sets the tone for the interaction.  Speak calmly, approach from the front, and meet them at eye level.  Speak using short sentences to not overwhelm the care recipient with too many thoughts or instructions.
4. Don’t Argue – If behaviors begin to escalate, it is best not to argue.  What the care recipient is thinking and feeling is very real based on their perception of reality.  Don’t challenge their thinking as this may worsen the situation.  For instance, if the care recipient says he/she needs to get ready to go to work, the care partner can respond with, “Okay, then let’s go have breakfast first.”  The response is supportive, using a pleasurable task without being argumentative.
5. Validate Feelings – Respond to the care recipient’s emotions, and not their words.  Express how sorry you are if the care recipient is upset.  Voice how you think they are feeling to allow the care recipient to feel heard.  For instance, the care partner can say, “I know that can be frustrating.  I would be upset too.”  It’s very important for the care recipient to feel understood as you try to join their point of view.
6. Reflect Thoughts and Ideas – As you connect, begin to mirror their actions and consider an activity to distract or redirect their actions — for example, pace alongside if the individual is pacing.  Or, use a serious and indignant tone if the care recipient is upset about some injustice.  Also, food is a prime motivator and can be used to distract in these moments, as noted in Strategy #4.
7. Structure and Routine – Individuals with dementia benefit by receiving a consistent structure to their day.  Structure and routine help lessen the care recipient’s feelings of stress and anxiety, which can lead to increased irritability and agitation.  Also, helping the care recipient to engage socially serves as a healthy distraction while giving the care recipient a place to spend their anxious energy.  Consider connecting with a local adult day program where the care recipient can participate in a social environment designed for cognitively impaired individuals.  Adult day centers offer opportunities for individuals to enjoy activities while providing the care partner a brief break to rest, run errands, or finish other tasks.
8. Medical Assessment – If the observed behaviors don’t improve by utilizing the above approaches or the behaviors worsen with the addition of auditory/visual hallucinations, consider having the care recipient seen by your primary care physician.  An increase in behaviors may be the result of some form of infection, such as a urinary tract infection, which is treatable.  If the primary care physician is not available, a local med check or urgent care office can be a good secondary option.
9. Crisis Intervention – If the behaviors continue to escalate where the care recipient is becoming aggressive (physical or verbal), and safety for all parties becomes a concern, a formal crisis evaluation may be necessary.  To complete a crisis evaluation, contact your local mental health crisis center or transport your care recipient to your local hospital emergency room.  Now, it’s important to note some crises are too dangerous to transport to an emergency room, so it is best to call 911, where first responders can help deescalate the situation and begin a plan to secure everyone’s safety.   If you do call 911, make sure to tell the responders the person is living with dementia, which may cause them to act aggressively.   **Please see disclaimer below
10. Final advice – As Jeff Puttkammer and Keri Fitzpatrick wisely state, “Communication with a person who has dementia can be rewarding and frustrating within the same five-minute time span.  Fear is a prevailing feeling for those with dementia, and providing a sense of safety can be the number one response they need.”¹

Reference:

Dementia De-escalation: Proven Verbal De-escalation Strategies for People with Dementia – https://hss-us.com/getmedia/d94b237d-db55-4e69-a3b6-528a75f0a0e8/Dementia-Deescalation-WhitePaper.pdf.aspx

Medical & Crisis Intervention Disclaimer
While the Gayle Wells Foundation for Early Onset Alzheimer’s & Care (GWF) makes every attempt to ensure material provided on this site is accurate, current, and complete, the information in this post and on our website is not designed to, and does not, provide medical advice.    The content is not intended to be a substitute for professional medical advice, diagnosis or treatment.  Municipalities, cities, counties, and states vary on crisis intervention training, policies, and procedures.  Please contact your physician, healthcare provider, local dementia clinic, mental health clinic, and/or emergency room to determine the best action to take should you be faced with a crisis. 

You are encouraged to confer with your doctor with regard to information contained on or gathered through this website.  You are encouraged to review the information and develop a crisis plan with your professional healthcare provider.

Todd Wagoner is a Master’s level clinical social worker with over 25 years of health care experience in hospital discharge planning and, most recently, serving as geriatric social worker for the Touchpoint Healthy Aging Transition Services, a geriatric specialty clinic through the Community Health Network in Noblesville, Indiana.