disease progression

Tips for Coping with Sundowning

When you hear the term sundowning, you often understand what it means as caregivers almost everywhere use it. You’ve heard about the person with dementia becoming increasingly confused as the day comes to an end with noticeable behavioral changes, including increased agitation and yelling.

Sundowning syndrome is not a disease itself; however, there is enough evidence to suggest that this phenomenon does exist in some individuals with dementia. Approximately 66% of older adults with dementia have sundowning syndrome.

Healthcare costs for Alzheimer’s are rising, and most of the costs come from the care and management of neuropsychiatric symptoms. Developing effective treatments for night-time agitation is difficult because a concrete understanding of where the symptoms originated is minimal.

This agitation and behavioral disturbances late in the day have also been associated with faster cognitive decline, increased falls, institutionalization, and, unfortunately, caregiver burden.

Having a solid understanding of this syndrome, ways to prevent an episode, and what to do when one is already happening are all things this post will review.

What is sundowning?

While it is not an actual disease, sundowning is a term used to define a group of symptoms that people with Alzheimer’s and other dementias may experience.

The term sundowning is appropriate because most individuals with these symptoms seem to experience them at full force when the sun begins to set. It helps to understand that a person can have these behaviors at any time of the day, and it doesn’t mean they will never experience them in the morning or around lunchtime.

Behavioral symptoms of sundown syndrome include confusion, aggression, anxiety, pacing, roaming, screaming, or refusing to follow directions. These behaviors typically begin as the sun starts to set and can last well into the night, disrupting the person’s sleep.

Symptoms of sundown syndrome

The symptoms of sundown syndrome will be most noticeable at night as the sun begins to set. The syndrome is most likely to affect a person with dementia in the areas of their thinking ability, personality changes, ability to reason, and noticeable changes in their behavior.

While each person will respond to this syndrome differently, some common symptoms include the following:

Pacing
Restlessness
Increase in anxiety
Increase aggression
Crying for no reason
Wandering around aimlessly
In some cases, paranoia and hallucinations, or delusions

It’s hard to say if sundowning is permanent since there isn’t a firm diagnosis or definitive reason for the symptoms that come with it. Understanding what triggers the syndrome and what aggravates it helps to cope better when faced with it and sometimes even prevent it.

Alzheimer’s sundowning tips

When the signs of sundowning start to happen, it can be scary and overwhelming for the family helping to care for their loved one. Try to remain calm and remember that the other person can often feel your tension and respond with an increase in agitation.

You can prepare yourself by noting the times of the day you start to see the symptoms coming about. Be mindful of the events leading up to the symptoms. Some questions to think about are:

When did the activities of the day finish?
Did they get too much stimulation or not enough?
Was there a lot of action happening around them?
Did they get enough food and drink during the day?
What were the interactions like between other people?
Were there any new medications added to their regimen?

You can decrease the frequency and intensity when you think about the things that often trigger the symptoms. Listen to the person as calmly as possible and help them understand that it is ok and you are there to support them.

The National Institute on Aging suggests trying these measures as well:

Reduce noise and visitors
Use distraction if they are becoming upset
Space activities out rather than doing a lot in one day
Don’t give the person caffeinated beverages late in the day
Have a routine for early evenings with soft music and lighting
Get enough rest at night, and keep daytime naps short and early
Increase exposure to light, even if that means sitting by a window

There seems to be a disruption in the circadian rhythm of people experiencing sundowning symptoms. Circadian rhythm is the cycle of physical, mental, and behavioral changes that our bodies undergo in a 24-hour cycle.

An earlier study shows that more activities that involve light exposure during the day will help to reduce this circadian rhythm disruption. These findings support that early-day activities involving the outdoors and sun exposure will significantly help to ease night-time sleep disruptions.

Why does sundowning occur

At this time, the cause of sundown syndrome in a person with dementia is unknown. Many theories give reasonable explanations, and some even suggest that certain situations may exaggerate the symptoms or make them worse. There is also a theory that how we respond to them while they exhibit these symptoms can make the signs worse and more intense.

According to the National Institute on Aging, one possible reason for this syndrome is that changes in the brain with Alzheimer’s can affect that person’s “biological clock,” leading to confusion in their sleep-wake cycles.

Other suggestions for this syndrome include:

Side effects of prescription medications
Lack of sleep or being overly tired
Lack of exposure to daytime light
Daytime overstimulation
Unmet physical needs
Caregiver fatigue
Depression
Pain

Sundowning can be a challenging aspect of Alzheimer’s dementia to experience for both the person with the disease and their caregivers. The caregiver burnout that can happen with this syndrome can increase and intensify as the disease progresses.

Understanding how to cope with the syndrome’s stressors will help keep your loved one with Alzheimer’s dementia home with you and happier in the long run.

Key Takeaways

Sundowning syndrome is a term used for a particular group of symptoms that occur during the late evening hours.
Behavioral changes are usually associated with these symptoms, which range in intensity.
There is a noticeable change in the patient with Alzheimer’s circadian rhythm, possibly due to damage in the brain’s pathways with the disease.
Increasing exposure to light during the day and keeping evening routines simple are great measures for coping with the symptoms.

Resources

Merck Manual. Behavioral and Psychologic Symptoms of Dementia. https://www.merckmanuals.com/professional/neurologic-disorders/delirium-and-dementia/behavioral-and-psychologic-symptoms-of-dementia?query=sundowning

Cleveland Clinic. Sundown Syndrome. https://my.clevelandclinic.org/health/articles/22840-sundown-syndrome

National Institute on Aging. Tips for coping with Sundowning. https://www.nia.nih.gov/health/tips-coping-sundowning

Nighttime Agitation and Restless Legs Syndrome in Persons With Alzheimer’s Disease: Study Protocol for a Double-Blind, Placebo-Controlled, Randomized Trial (NightRest). Research in gerontological nursing.

Field measurements of light exposures and circadian disruption in two populations of older adults. Journal of Alzheimer’s Disease.http://europepmc.org/article/MED/22699845#impact

WRITTEN BY:

Courtney Battaglia BSN, RN

Courtney Battaglia is a registered nurse with a bachelor’s degree from the University of Texas at Arlington. She has over 12 years of experience working directly with patients, many of whom experienced the effects of Alzheimer’s and dementia. Courtney is dedicated to providing resources for families and patients who are experiencing this diagnosis and continues to advocate daily for this population.

By combining her nursing knowledge with her passion for writing, Courtney strives to arm the public with the most accurate information for their health-related questions. While maintaining an active presence in delivering exceptional patient care, Courtney continues to promote and foster education to the public by breaking down recent research and news trends into easy-to-understand information.

Effective Communication: How To Talk With a Person Who Has Alzheimer’s

Communication is an essential tool everyone uses. Once we lose that seemingly small ability, it is not uncommon to find frustration filling its void. Communicating is vital for maintaining meaningful social interactions and meeting the needs of yourself and others. There are various forms of communication, such as verbal communication, body language, and even written communication.

People with Alzheimer’s disease eventually lose part or all of that capability to communicate. When a condition takes away something vital, like communication, it can be highly frustrating for the person with the illness and the person with whom they are trying to communicate.

As the caregiver for someone with dementia, it is essential that when you communicate with a person who has Alzheimer’s, you remain aware of the way you are communicating. Caregivers should use the type of communication that shows that they are there to help, have compassion and that they are there to support them.

Understanding the changes that may occur in communication and the following helpful strategies can make all the difference in the quality of life a person with Alzheimer’s can experience.

Changes in Communication

Since Alzheimer’s disease is progressive, meaning it worsens over time, the changes you see in a person’s communication will change depending on their disease stage.

Typically in the early or beginning stages, memory loss is mild, and this person still can have meaningful conversations and participate actively in social situations. You may start noticing things like they repeat the same stories or even have difficulty finding the word they need to use.

They may need help following long conversations and lose their train of thought when talking. It is common for them to get frustrated during a conversation if they can’t be understood. Some people who speak English as a second language may even revert to their native language, forgetting they know English altogether.

In the late stages of the disease, communication becomes much more difficult. Nonverbal communication often gets used in this stage, and you can expect things like the use of facial expressions and vocal sounds instead of actual words.

Tips for Effective Communication

People with Alzheimer’s Disease are not able to alter how they communicate with us. What they are going through is out of their control. Being the carer of your loved one with this disease, you can adapt how you communicate with them. Aiming your communication skills at increasing their attention and simplifying conversations is helpful.

Keep communication simple

Encourage the person with dementia to use the most comfortable communication for them. They may prefer writing over talking or referring to pictures.
Use basic language and speak at a slow rate so the other person has time to process.
Keep your sentences short, remember that processing words for them can be a struggle, and only ask one question at a time.
Step-by-step instructions are great to use when they need to complete tasks.
Alzheimer’s patients might need you to repeat instructions, and it is essential that you remain calm and do not show frustration.
Ask yes or no questions. The person with Alzheimer’s may find this easier to process and answer.

Keep a calm environment

Minimize potential distractions by turning off the TV or radio. It is also important to keep the communication one-to-one so that your loved one doesn’t become distracted by the other person.
Try to remain still while you are communicating with them. If the person you are trying to communicate with sees you fidgeting around, this may inadvertently cause anxiety within themselves.

Put a check on your communication skills

Remember to approach the person with dementia from the front and always maintain eye contact.
Talk to them as an adult and not as if they are a child.
Ask questions where the person has to fill in their response. The questions can be as simple as “I need” or “I can’t,” and then they tell you what is missing to help address their needs.
Use proper facial expressions when you are supposed to feel happy, scared, or sad while telling a story.
Keep your tone at an appropriate level, and make sure your body language is appropriate.

Listen to how the person responds emotionally; there may be more behind the meaning of what they are trying to tell you.

What should I not do when communicating with a person with Alzheimer’s

The next most rational thing to wonder is how I should not communicate with someone with Alzheimer’s. Communication becomes very difficult when frustration happens from ineffective communication. Follow these helpful tips when you are not sure what to do.

Do not argue; this creates frustration and confusion
Don’t question specific memories, and don’t confront them
Don’t speak to them as if they are a child
It is better to avoid questions where deep memories may live
Try not to boss them around and try to tell them things they can do rather than what they cannot do
Avoid attempting to guess what the person is trying to say in order to hurry the conversation
When talking to a third person about your loved one with dementia, do not treat the situation as if they are not there

If you notice the person with dementia is becoming frustrated with their communication, you might want to try distraction. Try to switch the conversation to something more pleasant or even step away. Remember to avoid taking the things they say in frustration to heart; it is a genuinely confusing time for them.

Working with the person with Alzheimer’s healthcare team is vital to ensure they get the best quality of life possible. Don’t forget to take care of yourself and reach out to support groups for Alzheimer’s caregivers if you feel things are becoming too much. Resources for support, self-care and caregiving are available.

Takeaway Points

When communicating with a person with Alzheimer’s disease, remember to keep communication simple and use short sentences at a slow pace.
Using pictures may help when finding the right word is difficult.
Don’t argue with someone experiencing Alzheimer’s; sometimes, using distraction by asking a different question can help ease frustration.
Alzheimer’s disease is progressive, and communication abilities will fluctuate depending on the stage of the disease.

Banovic, S., Zunic, L. J., & Sinanovic, O. (2018). Communication Difficulties as a Result of Dementia. Materia socio-medica, 30(3), 221–224.
National Institute on Aging. Alzheimer’s Caregiving: Changes in Communication Skills.
Alzheimer’s Association. Communication and Alzheimer’s.
Mayo Clinic. Alzheimer’s and dementia: Tips for better communication.

WRITTEN BY:

Courtney Battaglia BSN, RN

Have a Merry, Bright & Simple Holiday

Gathering at the end of the year to celebrate special occasions and holidays is precious time with loved ones. When someone you care about or care for has Alzheimer’s disease, these times can also be stressful. Alzheimer’s is not uncommon, with one in nine older adults over age 65 living with this form of dementia. The fact that someone is cognitively impaired should not be a barrier to including them or their caregivers in holiday plans.

A change in routine can be exciting but also challenging for families managing dementia. To set everyone up for success, this month’s article explores:

Why positivity matters.
How to maximize intake by brightening holiday surroundings for those with dementia.
What it means to keep things simple.

Merriment Matters

Brain capabilities in people living with Alzheimer’s change gradually. Reading comprehension and recall of names wane as do other aspects of memory. The ability to perform higher-level tasks such as balancing a checkbook or organizing a space declines; this is known as executive function. Decision-making without support also becomes difficult. Those experiencing these types of deficits often try to cover them up.

What is important to remember though is that the ability to sense emotion varies but remains intact in those with Alzheimer’s. Research shows that the temperament of another person or the mood of a situation is recognizable despite dementia. One’s capacity to do this varies, of course, based on the level of disease.

Interestingly though, identifying and carrying positive emotions forward is less impaired. Studies seek to explain this better, as the inability of a person with Alzheimer’s to process emotions is linked to poorer caregiver outcomes.

Here are some suggestions to keep a holiday occasion lighthearted:

Provide a fun nonalcoholic drink or piece of candy to guests on arrival
Play music – find out what the person enjoys listening to or has in the past
Offer festive costume jewelry or other adornments for guests
Ask the person to help! Involve them in straightforward tasks and give praise
Organize the seating to include the person with dementia in the social group
Identify a quiet or safe outdoor space in case the person needs a break

Brightness Helps Appetite

Illuminating a person’s eating space stimulates the senses and appetite. This is confirmed by Bailey Franklyn, registered dietician, and owner of Harvest Table Nutrition. She has years of experience working with older adults including those with cognitive impairment. As Alzheimer’s disease advances, not only can appetite diminish, but also the taste for food changes. This has to do with the affected areas of the brain.

A preference for sugary food is not uncommon and so maintaining a balanced diet is more challenging. “While a balanced diet is ideal, if your loved one is more interested in eating dessert than the main meal, it’s OK every once in a while. Provide gentle encouragement to prioritize more nutritious foods, but if they gravitate toward sweeter foods, eating something is better than nothing,” says Franklyn.

Below are some more tips from both Franklyn and the Alzheimer’s Association to optimize intake during the holiday season or anytime.

Provide good lighting. Vision impairment may coexist in someone with dementia. Having a well-lit space while dining helps people with low vision or other impaired senses to distinguish between the plate and eating surface and between food choices.
Consider plate color. Small-scale studies highlight the fact that plate color promotes food consumption. Red is a winning color.
Incorporate music. Brightening the atmosphere with pleasing sound proved beneficial in studies. People who dined with music ate better than those without.
Get an aquarium!? Perhaps it’s the calming effect of watching creatures move silently through water. Maybe it’s the reflection of light combined with the bright colors of large fish. Regardless, a small study showed that older adults with dementia who ate in the presence of an aquarium consumed 20% more after two weeks.
Stay connected. It is important to make eye contact and offer light topics of conversation, but most importantly, just keep the person company. “Provide assistance throughout the meal if needed, or encouragement and reminders to take bites of food and sips of fluids,” advises Franklyn.

Additional tips to maximize intake:

Add variety by displaying different colored foods against a contrasting background
Play with texture to promote interest (e.g., slices of avocado versus guacamole)
Allow the person to take their time and to eat with their hands even if messy
If the person is losing weight, sneak in some extra calories when you can (e.g., add heavy cream to mashed potatoes or more butter to the vegetables)

Keeping It Simple

For the caregiver and host, keeping things simple is best. Simple means whatever is most manageable and least complicated. Easier said than done!

First and foremost, ask yourself…Should I even be taking my loved one out at this time or offering to host an event? Declining to participate in or attend a party can be done kindly and doesn’t require a lengthy explanation. Saying, “No, thank you,” is a complete sentence. Or stating that you have other plans – even if that is to stay in and read a favorite book while someone else takes your loved one out – is claiming important time for yourself.

As dementia care expert Teepa Snow advises, make sure as a caregiver you have connected with your support network and revved up your self-care! These are key holiday survival tactics.

What is a support network?

This is anyone or anywhere that reinforces your well-being and strength and replenishes your abilities. It could be family, friends or a therapist. It might be a class or church. It could be a caregiver support group or a hiking club. It should include a health care provider. Support is what shores up your capacity to remain whole so that you can be available to safely care for your loved one. Wholeness is physical, emotional, mental and spiritual.

What is self-care?

Glad you asked!

Self-care is self-love and self-advocacy. It is being careful not to overcommit which often means needing to process decisions with trusted people. It is receiving invitations and assessing honestly if you want to participate. It’s going where you want to go. It is saying yes to fun and healthy choices. It is going to see your medical provider for check-ups.

Instead of decking your own hall during the holidays, it may mean saving energy and resources by opting to go for a drive to enjoy community decorations or hanging ornaments at a family member’s home.

If you do attend or host a holiday event and want to include your loved one who has Alzheimer’s, here are some tips from age space to simplify things:

Finger and bite-sized foods are often easiest; buy pre-cut items to minimize prep
Keep the space including the dining area uncluttered
Label food and let the person with dementia serve themselves
Ask other friends or family to attend to your loved one for a time

Making the holiday merry and bright is possible without overcomplicating matters. Typically, this requires asking for help, which is not always easy but is almost always appreciated by those around you. When you devote most of your time in service to another, it is usually recognized, however, others may not be sure how to help you in return. Be brave and ask for what you need! Resources for support, self-care and caregiving are available. For more information, start with your local chapters of the Council on Aging or Alzheimer’s Association.

WRITTEN BY:

D. Dow Stick MSN, APRN

Dow Stick is a freelance health writer and nurse practitioner in Western North Carolina. She earned a Bachelor of Science degree in Biology from the University of Mary Washington and a Master of Science degree in Nursing from East Tennessee State University. Her experience as an advanced practice nurse includes adult primary care, hospice and palliative care, chronic disease management, and addiction medicine. Her interests are in the health and wellness of older adults as well as the advocacy and support of those living with dementia, especially her own 95-year-old grandmother.

Nurse Dow LLC is her content creation platform designed to provide print editors and marketing managers with authoritative copy that resonates with health consumers. Find her at NurseWriterDow.com.

Gift Giving to Those with Dementia

The holidays are right around the corner. What do you get mom who is living with dementia? Or perhaps grandpa, sister, or the resident you adopted?

The Dementia Connection Model© is a cognitive-behavioral framework that takes into account how the person living with dementia is progressing through their disease, focusing on what we know works well with advancing dementia – sensory stimulation. When a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). When positive sensory-based engagement strategies are used, this can ignite positive feelings and memories, promoting productive behavioral expressions and connections (Stelter, 2021). And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person.

These various sensory stimuli can be given as holiday gifts, like music for auditory stimulation, pet companions or therapeutic dolls for tactile and visual stimulation, essential oils for olfactory stimulation, their favorite foods for gustatory stimulation, and so on. Let’s dive deeper.

Music (Auditory)

Playing their preferred music has shown to increase lucidity in the moment, improve communications skills, and experience positive emotions, whether for a couple of minutes or a few hours. Therefore, put together some of their favorite playlists, even holiday music you know they love. Play it at the holiday gatherings to influence them to feel calm, happy, safe and secure. Then also give it to them for a great holiday gift – perhaps uploaded on an airpod or music list that caregivers can play for them.

Pet Companions (Visual & Tactile)

The unconditional love of a pet may offer a wonderful connection to someone who may not always be able to fully communicate. Pets also provide visual and tactile stimulation, and they can improve mood and increase physical activity. Furry friends also assist as conversation starters. “Even people with Alzheimer’s recognize a dog, and they see that the dog is someone new in their environment. I think they see it as someone with whom they can interact without any worry,” says Mara M. Baun, DNSc, at the University of Texas Health Sciences Center at the Houston School of Nursing. If it is not possible or appropriate to get a real pet, try a realistic stuffed or animatronic puppy or kitten. When introducing a stuffed or animatronic animal, it is important to let the person you care for lead the way. You can approach them by saying, “What do you think about this?” The answer will likely let you know if they see it as real or not. Some individuals may know it isn’t real and still enjoy it very much. At some point, however, those with dementia may think they are real and enjoy them as if they are their own pets. Watch their eyes light up as they care for them and pet, kiss and snuggle them.

Therapeutic Dolls (Visual & Tactile)

Children light up the world of people with dementia. Depending on the activity they are doing, such as reading or playing a game, the interaction could stimulate all senses. As the disease progresses, using therapeutic dolls may prove helpful. A person with dementia should receive a lifelike 5- to 8-pound infant doll or mannequin to care for and nurture. Most often, the doll brings joy, unconditional love, and purpose while also providing a multi-sensory experience influencing them to feel calm, happy, safe and secure. A person with Alzheimer’s disease may care for a doll as though it is a real baby, providing the person with important daily tasks. Doll therapy may also prompt positive past memories, from when they were parents, and help them feel that they are contributing in a meaningful way. The dolls don’t need to be lifelike in every way, such as wetting themselves or crying, to provide a nurturing experience for someone with dementia. Dolls with closed mouths are preferable, because your loved one won’t feed them as often. Also, try to offer dolls with eyes that open and close, as this may signal to your loved one when the baby is awake or sleeping. Additionally, offer dolls that are similar to your loved one’s ethnicity. To add to the experience, purchase accessories to go along with your gift—doll clothes, bottles, blankets, diapers, and so on. Your loved one or resident will enjoy the doll more by using these tactile objects with their baby. Caring for a doll also provides cognitive stimulation, such as when your loved one is organizing the clothes by color, type, or size. A doll can provide hours of activity and can be used morning, noon, and night.

Aromatherapy (Olfactory)

WIthin the Dementia Connection Model, comes an approach to care called The Perfect Day™. Each part of the day (i.e., morning, mid-day, afternoon/evening), specific olfactory stimuli should be used to encourage positive behavioral expressions and minimize sundowning behaviors. In The Perfect Day method, start in the morning with peppermint and a citrus scent. This helps increase mental clarity while improving mood – great for a morning time regimen; citrus additionally increases appetite. At meal times, citrus scents should be used to encourage eating and keep the ‘mood of the room’ elevated. Then, about 30 minutes prior to sundowning and through the afternoon and evening, lavender should be used to promote a sense of calm and encourage sleep. If the person can still smell and they don’t care for the scents being used, then simply try another essential oil that has the same benefits. Give the gift of The Perfect Day today!

Favorite Foods (Gustatory)

Giving the gift of food is timeless. Choose foods you know they love or even recipe books that include some of their own recipes from the past! To enhance this experience, perhaps as a gift from you to them, have them help you cook or bake some of their nostalgic recipes, so they can reminisce based on the smell and taste of these foods. And you two can bond in something you both may have enjoyed in the past together.

The holiday season should be as joyous as possible for everyone. Buying holistic, positive, sensory-based tools for that special someone living with dementia can enhance the quality of this holiday season for them.

At the Dementia Connection Institute, we are always striving to educate caregivers and professionals to fill their toolbox with lots of tools to be prepared when caring for those living with dementia. When caregivers are educated and prepared, this allows those living with dementia to live freely in their new world, without judgment, controls, and negativity.

Learn more about the above mentioned engagement strategies and more at one of our upcoming seminars. Family caregivers and professionals can become certified as a Dementia Connection Specialist (DCS)! Now offering our seminars virtually and in-person.

The holidays are right around the corner. What do you get mom who is living with dementia? Or perhaps grandpa, sister, or the resident you adopted?

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WRITTEN BY:

Dr. Jennifer Stelter

Dr. Jennifer Stelter, also known as The Oil Doctor, Psy.D., is a Clinical Psychologist and Johns Hopkins Press author, who specializes in dementia care. She has 20 years experience in the healthcare field and over a dozen in the senior living industry. She is a Certified Dementia Practitioner and Certified Alzheimer’s Disease and Dementia Care Trainer through the National Council for Certified Dementia Practitioners.

Additionally, she is the CEO of NeuroEssence, LLC at the Dementia Connection Institute and the creator of the Dementia Connection Model(c). Also, she is the author of The Busy Caregiver’s Guide to Advanced Alzheimer Disease. At the Dementia Connection Institute, we provide training and education on dementia care to professionals and family caregivers with a heavy focus on ‘prescribing’ with non-pharmacological interventions and engagement and empowering care providers to do the same. The vision is that those living with dementia will be able to experience and navigate their new world freely because caregivers and professionals feel better educated, prepared, and empowered in how to provide quality dementia care. We are now open! Visit us at DementiaConnectionInstitute.org.

Jessica Ryan

Jessica Ryan is a university educated Biologist and Educator, a Certified Dementia Practitioner (CDP) through the National Council of Certified Dementia Practitioners (NCCDP), an AromaTouch® Technique Trainer certified by Dr. Hill, a top doTERRA Wellness Advocate, and a founder and co-creator of AromaTechniques an aromatherapy and hand massage technique specific to the “vintage” population. She is the CEO of The Oil Mama, LLC, and co-founder and co-owner of NeuroEssence, LLC. She has 25+ years of experience in education and the sciences from high school to university and professional level. Over the last 10 years she has committed to staying on the forefront of evidence- based essential oil uses and educating individuals and families on reducing toxic load and increasing cellular nourishment as the key to healthy mind and body at any age. She has pioneered a specialization in working with the “vintage” population, healthcare professionals, and caregivers to educate them on the usage of therapeutic essential oils for longevity and quality of life as it relates to the Alzheimer’s, Dementia, and brain health.

Jessica regularly leads workshops and offers valuable and continued support through her various resources and one-on-one consultations. She also offers additional services to healthcare and residential facilities as related to the “vintage” population including caregiver and continuing education, hospice tools, and customized community wellness plans.

“I am Thankful for…” from the Eyes of Those Living with Dementia

“Hey, how you doin,’ You’re lookin’ good!” said Fred*, a resident with dementia who lives at a Skilled Nursing Facility. He greeted us like this every morning and was thankful when we conversed with him often about his family and our families. He showed us by bumping fists with us afterwards.

Juana, an Assisted Living Memory Care resident, always said, “Help me, help me” in Spanish. Then, she calmed, with a beautiful smile on her face, when we draped her with her favorite blanket that kept her warm and smelled like her late husband. She appeared to feel blessed.

Seeing Roberta glow when we put on the pearl necklace her mother once gave her. She would feel the pearls between her fingertips. She didn’t have to say anything because the absence of her repeating “do I look good?; what should I be doing;…” stopped. You can tell she felt grateful for the support around her, at least that is what we observed.

Betty, a loved one of Rosemarie, who was taking care of Betty and wanting assistance from us, just wanted to cook. So, when she began to mix her food together, spilling a little here and there, we sat down with her and “cooked” with her. We laughed, told stories, and exchanged recipes. Then, we ate a bit of what we made. It was quite tasty, if I do say so myself. She said, “Thank you for coming to my cooking class. I look forward to seeing you next week.”

Wouldn’t it be amazing if those living with dementia could just articulate what they are thankful for or what makes them happy and calm?… Well, they don’t need to. We need to…meaning, we need to be able to use our eyes and ears and deductive reasoning to try to understand what the person is experiencing. We have to adjust, not them. When we adjust, then they can live in their new world, free from negativity, judgments and controls.

So, we, as caregivers, can simply observe their facial expressions and body language. Does mom appear to be experiencing positive or negative feelings? If her facial expressions and body language seem to indicate she is not happy, then you should engage her with positive sensory stimuli. If mom seems happy, well then you found a new tool for your toolbox that you can use in the future to help her. And if you already know mom’s fav music, food, activities and so on, those are more tools to proactively put in your toolbox to help promote a positive environment with positive stimuli to help prevent negative feelings and behavioral expressions.

Therefore, what would make your loved one or residents thankful, happy and calm this Thanksgiving holiday? Those will be your tools to help calm them, lift their spirits, and encourage their independence. Welcome to the newest empirically-validated approach: Dementia Connection Model©.

The Dementia Connection Model is a cognitive-behavioral framework that takes into account how the person living with dementia is progressing through their disease (regressing towards an earlier developmental age, i.e., retrogenesis), focusing on what we know works well with advancing dementia – sensory stimulation. When a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). Therefore, positive stimuli should be used to promote positive feelings and memories, this then promotes positive behavioral expressions. And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person.

All-in-all, using the Dementia Connection Model can truly help you, as the caregiver, observe, figure out, engage and connect. Whether for your loved one or residents in your care, knowing this can help you accept what is going on and feel empowered and confident with your ability to do this. Use this model this holiday season.

For more information on the Dementia Connection Model and much more, go to www.DementiaConnectionInstitute.org. To receive training on the Dementia Connection Model and become certified, for both family and professional caregivers, go to https://www.dementiaconnectioninstitute.org/certification-programs.

Listen to Dr. Jennifer Stelter on the Bridge the Gap Podcast Ep. 225.

*All names have been changed for confidentiality purposes.

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WRITTEN BY:

Dr. Jennifer Stelter

Jessica Ryan

In Their World at Halloween Time

Halloween can be a fun time of year for children and teenagers to dress up as their favorite characters, attend parties, go trick or treating, and eat lots of candy. Heck, even adults may partake as well. However, for those with progressing dementia, Halloween time can be quite scary, increasing unproductive and negative behavioral expressions. But why?

Within the Dementia Connection Model©, a cognitive-behavioral approach to dementia care, the first pillar is the theory of Retrogenesis, which explains that as the disease is progressing, the person’s skills are reverting back towards infancy. Skills include taking care of their independent activities of daily living (IADLs) and ADLs, their emotional intelligence, memories, communication abilities, and more. Dr. Barry Resiberg found in his research of this theory that those living with dementia who are in their later parts of the moderate phase and in late stage are developmentally the ages of 7 years old to 4 weeks old.

Now put yourself in the shoes of a 5-year old or 3-year old. They get scared when seeing evil costumes, darkness, scary sounds, etc. Therefore, people who have later-stage dementia may also experience this fear. When they experience fear, they then show this in their behaviors, causing unproductive or negative behaviors in order to protect themselves.

Simply put, when a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). Therefore, when negative experiences occur, this will cause them to feel negative feelings, memories, and unproductive and/or negative behavioral expressions, like aggression or wandering. However, positive stimuli will promote positive feelings and memories then positive behavioral expressions. And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person.

So, some positive stimuli that can be used around Halloween time are the following:

Olfactory – diffuse a cinnamon essential oil that can help uplift the mood and provide that nice fall scent.
Gustatory – have on hand a handful of their favorite candies and give it to them in moderation (taking into account their current recommended diet).
Visual – reminisce with pictures of Halloween events or play relaxing scenes of leaves falling from the trees or taking a walk in the Autumn woods. Decorate with fun, not scary decorations, and avoid costumes, or at least the scary ones.
Auditory – play their favorite holiday music they enjoy rather than scary sounds, loud bangs, and screams often on Halloween recordings.
Tactile – have them partake in making fun decorations or engage them in a Halloween game where they are also using their cognitive skills.

In conclusion, the holidays are around the corner, and it’s best to plan ahead when you care for those living with dementia. They deserve to enjoy the holidays just like you and I. Therefore, when using the Dementia Connection Model, you can put yourself in their shoes to understand their experience, and then provide positive stimuli that would promote positive feelings, memories, and behavioral expressions.

At the Dementia Connection Institute, we are always striving to educate caregivers and professionals to fill their toolbox with lots of tools to be prepared when caring for those living with dementia. Become trained in the Dementia Connection Model through the Dementia Connection Specialist Certification Program or help us spread the love of dementia education by becoming a Trainer. Learn more at https://www.DementiaConnectionInstitute.org/Certification-Programs.

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WRITTEN BY:

Dr. Jennifer Stelter

Jessica Ryan

liquid diet soup bowl with colorful puree

Is It Ok for People With Dementia to Primarily Drink Supplements?

Ponder this question…if you could only drink your meals for the rest of your life, would you want to? I think hardly not. It’s not a way of life…it’s not quality of life. However, it’s up to each person; it’s their right to decide this. But we know that when people are progressing in their disease of dementia, when their ability to eat decompensates, that choice becomes compromised. Or does it?

A quality dining program offered at home or within a community allows choice to be available. Choice is possible when using the Dementia Connection Model©, an empirically-validated cognitive behavioral framework. This model’s main approach includes using sensory stimulation.

When a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). Therefore, positive stimuli should be used to promote positive feelings and memories, this then promotes positive behavioral expressions. And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person.

Therefore, when various stimuli are used within a dining program, these will either influence positive or negative feelings for that person. They will then know what their choice is, innately. Then, the caregiver can observe their reactions and continue to provide more of what they like. Whether that’s particular food they like, colors of plateware they are attracted to, music they want to hear during meals, smells they enjoy, and more.

In 2016, I conducted a focus group with a memory care assisting living community in the midwest, who were looking to improve their dining experience for their residents. With challenges of weight loss and an increasing need for supplemental use, running up costs for the families, they knew something needed to be done. The focus group ran for three months with this given prescriptive engagement plan used at each meal: aromatherapy (olfactory stimulation), music (auditory stimulation), and colored plates (visual stimulation). The aromatherapy and music were started 30 minutes prior to each meal, and colored plateware was used based on the needs of the individual. Purees were served in bowls to make it look like soup (visual stimulation), and therapy assisted with any adaptable equipment needed (tactile stimulation). Results showed promising results:

46% of residents increased their food consumption
54% of residents gained or maintained weight
72% decrease in supplemental use

And after 30 days, residents, who could but weren’t before, were wheeling themselves independently to the dining room on their own, as they were able to learn what the scent and sound meant – “It’s time to eat!”. This allowed residents to practice their own navigation skills and provide them with a form of physical activity, on top of gaining back their independence. It also allowed staff to just focus on the residents who really needed help, freeing up their time to be used in a more productive manner.

All-in-all, choice is possible from an organic process that happens in our brain when using the Dementia Connection Model. At the Dementia Connection Institute, we are always striving to educate caregivers and professionals to fill their toolbox with lots of tools to be prepared when caring for those living with dementia. When caregivers are educated and prepared, this allows those living with dementia to live freely in their new world, without judgment, controls, and negativity.

Learn hands-on about the Dementia Connection Model to enhance your skills in communication, ADL care, engagement, behavioral management, environmental design, and much more in our new dementia certification programs. Become certified as a Dementia Connection Specialist (DCS) or Dementia Connection Specialist Certified Trainer (DCSCT)! Now offering virtual and in-person seminars. Learn more.

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WRITTEN BY:

Dr. Jennifer Stelter

Jessica Ryan

Social Prescription in Dementia Care

When we think about how far research has come in dementia care, the unfortunate reality is that there is still no known medicine for it, as well as no cure. We truly think our industry is close. Therefore, the medical model doesn’t work in dementia care. However, we can’t say that there isn’t any treatment available, because we have social prescription. Social prescription is about getting to know the whole person living with dementia, from their preferences in life, roles they’ve been in, understanding what makes them happy and calm, who surrounds them in their life, and their strengths and weaknesses; essentially it’s the essence of who they are. Around 70-75% of a person’s overall health are their social determinants, not their physical or medical health. And several modalities in dementia care have proven positive outcomes by using aspects of social prescription, like the Best Friends™ Approach, Montessori Method, and Validation Therapy. The newest empirically-validated approach upholding social prescription is the Dementia Connection Model©.

The Dementia Connection Model is a cognitive-behavioral framework that takes into account how the person living with dementia is progressing through their disease, focusing on what we know works well with advancing dementia – sensory stimulation. When a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). Therefore, positive stimuli should be used to promote positive feelings and memories, this then promotes positive behavioral expressions. And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person.

The key to this connection is to consistently (i.e., structured, daily) provide these positive experiences in order to reinforce the connection and skills to maintain their highest level of independence for as long as possible (also called habilitation). This is the key to social prescription, utilizing a “prescription” of social determinants when providing good quality care. Within the Dementia Connection Model, the caregiver trials which sensory stimuli are effective, like types of music for auditory stimulation, essential oils for olfactory stimulation, and so on. Then, they determine the frequency and when this will be implemented based on what would be the most beneficial for the person they are caring for. Yes, caregivers should feel free to “prescribe” these interventions to their loved ones or seek assistance with a knowledgeable provider to do so; physicians shouldn’t have to take responsibility for this, although they should be a supporter and contributor.

Within the Dementia Connection Model, comes an approach to care called The Perfect Day™. Each part of the day (i.e., morning, mid-day, afternoon/evening), set sensory stimuli should be used to encourage positive behavioral expressions and minimize sundowning behaviors. These various sensory stimuli include auditory stimulation with music, olfactory stimulation with aromatherapy, tactile stimulation with exercise, pets, dolls, and more, and so on. Let’s dive into the aromatherapy part of The Perfect Day.

Aromatherapy is a relatively safe, all-natural use of essential oils to support one’s health. Although research has shown that a person’s sense of smell may decrease as Alzheimer’s disease progresses, the nose is still an entryway for the sensory stimuli of essential oils because the nasal cavity and nerve cells in the nasal lining are the closest entry to the limbic system. This connection between the sense of smell and the limbic system accounts for the influence of essential oils on mood and memory. Using essential oils can aid in efforts to restore the body back to its natural balance. For example, if you’re feeling sad, they may help you feel content; if you are feeling anxious, they may help you relax. Essential oils can be diffused in the air, placed on stoned jewelry, or applied to pulse points around the neck and wrist areas, like perfume or cologne. Within 20 seconds of inhaling, an essential oil will start to work. And by 30 minutes they have surfaced the whole body. Many clinical trials support the effectiveness of essential oils, including lavender and cedar for reducing anxiety and peppermint for mental stimulation. Essential oils may also be used as part of efforts to stimulate the appetite, help with sleep, increase energy, improve attention and concentration, and much more.

A published review from 2019 provides an excellent summary of studies supporting the therapeutic use of essential oils in people with Alzheimer’s disease specifically. In The Perfect Day method, the prescription recommended to help curb negative behavioral expressions and sundowning includes using peppermint and a citrus scent in the morning. This helps increase mental clarity while improving mood – great for a morning time regimen; citrus additionally increases appetite. At meal times, citrus scents should be used to encourage eating and keep the ‘mood of the room’ elevated. Then, about 30 minutes prior to sundowning and through the afternoon and evening, lavender should be used to promote a sense of calm and encourage sleep. If the person can still smell and they don’t care for the scents being used, then simply try another essential oil that has the same benefits, truly fitting this prescription to the person’s preferences. Now, when this prescription is used daily, there is an immediate effect on promoting positive feelings and behaviors, however, after about four weeks, the person may associate these senses with understanding what time of day it is and what they should be doing, decreasing confusion, loneliness and fear.

It’s important to keep in mind that any substance with a fragrance, including essential oils, may cause an allergic reaction in individuals with sensitivities. Use caution and test a small amount of the oil when introducing it. You will want to consult with your loved one’s health care practitioner and be sure to mention any essential oils and other supplements that you may be using or want to use.

All-in-all, we need to start using social determinants to create prescriptions that we know work for those with dementia. Start this by trying The Perfect Day, using aromatherapy, within the Dementia Connection Model. At the Dementia Connection Institute, we are always striving to educate caregivers and professionals to fill their toolbox with lots of tools to be prepared when caring for those living with dementia. Within social prescription, creating prescriptions using these tools helps when providing care.

For more information on the Dementia Connection Model and much more, go to www.DementiaConnectionInstitute.org. To grab your own ‘The Perfect Day’ aromatherapy kit, go to www.NeuroEssenceOlfactoryToolboxes.com.

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WRITTEN BY:

Dr. Jennifer Stelter

Jessica Ryan

Connecting to Those Who Have Dementia. It’s Simple.

Caregivers of those with dementia experience a wide range of emotions during their caregiving journey, including a sense of loss that they can no longer connect to that person, like they could before. Or, for those who are new to caregiving for that individual, they just can’t feel successful in aligning with them. With many frustrating interactions, they find themselves saying things like “This isn’t who my mom is” or “I just can’t seem to do anything right for her” or “Why does this keep happening?”, leaving the caregiver feeling hopeless.

What would make that individual with dementia happy again, to feel safe and secure, and calm? Although this can seem impossible to imagine, it can be quite simple. For their own sanity and peace, the caregiver needs to lower their expectations of the person they are caring for. There is a level of acceptance needed that the person they are caring for does not have all the skill-abilities as a fully-functioning adult, yet the developmental level of a young adolescent, according to Dr. Barry Reisberg’s research and his theory of retrogenesis. Therefore, their chronological age does not match their developmental age. As the disease progresses, the person’s skill abilities go in the reverse order in which they learned them (i.e., their skills are reversing towards infancy), including mobility, communication and language, coping, independent activities of daily living (IADL’s) (like managing money, prescriptions, etc.), and then ADL’s (like dressing, grooming, etc.). This also includes how the person learns and navigates their world – adapting to a new world they now live in – as it mimics very similarly to the world a young child lives in between ages 7 years old to 4 weeks old, indicated by Dr. Reisberg. In this new world, the person with dementia is using their senses to understand what is happening around them, and these stimuli influence the person’s mood and memories all the time, very similarly to an adolescent’s experience before the first 5 years of life. This does not mean we treat those with dementia like children, but better yet we put ourselves in that person’s shoes to understand clearer what they are capable of. This leads to acceptance.

When a person with dementia is stimulated using their senses, that information is processed either directly or indirectly in the limbic system of their brain that houses the amygdala (feelings) and hippocampus (memories). Therefore, positive stimuli should be used to promote positive feelings and memories (i.e., sensory stimulation). And when the caregiver is the one providing these positive experiences, the person with dementia will either connect or re-connect with them because they like how they feel with that person. The key to this connection is to consistently (i.e., structured, daily) provide these positive experiences in order to reinforce the connection and skills to maintain their highest level of independence for as long as possible (also called habilitation).

This framework I described above is called the Dementia Connection Model©, utilizing Dr. Reisberg’s theory of retrogenesis (the WHO & WHY), the act of habilitation (reinforcing skills consistently, over and over) (the HOW & WHEN), and intervening using sensory stimulation (the WHAT). With over 10 years of research and hands-on work with individuals with dementia, caregivers and staff, I created this model to provide an avenue of acceptance and a better understanding of the progression, as well as to put tangible tools in caregivers’ hands, so that there is a strong, harmonious connection between the person with dementia and their care partner.

Multi-sensory based tools have been clinically proven to enhance the life of those living with dementia. Tools include preferred music (auditory stimulation), aromatherapy (olfactory stimulation), pet and infant-doll therapy (tactile stimulation amongst others), using colors to one’s advantage (visual stimulation), and many more.

When the caregiver is better educated and prepared, this sets them up to feel confident and competent. In turn, they provide better quality care and engagement. Then, the person with dementia benefits because they can freely be themselves as they are now, without judgements, controls, and expectations. Their world is and should be filled with ‘sunshine and roses’; it’s that simple.

For more information, stay informed about the newly opened Dementia Connection Institute by NeuroEssence, LLC. And read more about the Dementia Connection Model© in my newly released workbook-style guide called The Busy Caregiver’s Guide to Advanced Alzheimer Disease, published by Johns Hopkins Press, available at Amazon, Barnes and Noble and Johns Hopkins Press Bookstore.

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WRITTEN BY:

Dr. Jennifer Stelter

Jessica Ryan