Resources

Pedal for Alzheimer's cyclist Ride Tennessee drinking skratch

How To Train for Your First Century Ride

Have you ever wanted to complete a century or metric century ride but don’t know where to start? Training for your first big ride can be daunting, but follow these simple steps to prepare your mind and body to accomplish your goals!

Step 1. Build a Solid Base and Plan

You want to start your training conservatively. Make sure you know your limits. It is better to go on a shorter ride at first to see how much your body responds. Start with 30 minutes to hour-long rides to establish a solid base. If you accomplish a 30-minute ride and you have enough energy to keep pedaling, consider adding 10-15 minutes to your next ride. It is not encouraged to feel completely exhausted after completing your first few rides. This could set you back with more recovery time needed, or worse, it could lead to an injury that could take you off course for completing your first century.

Step 2. Gradual Increases and Consistency

Consistently add 15-20 minutes to your rides weekly, focusing on longer days on the bike. You don’t need to ride every day but make sure you are staying consistent with training. As you feel stronger on longer rides start to increase your time, intensity and mileage gradually. Weekends are a great time to add more time and distance on the bike.

Step 3: Fueling and Recovery

When training for your first century, it is crucial to fuel your body properly and get enough rest and recovery. As your weekly training miles increase, your energy expenditure will increase. You need to fuel your body with the proper nutrition on and off the bike. Plus, don’t forget to eat and drink often while on your rides. Carry plenty of food and water for your rides or have planned stops to refuel while on the road. Fueling properly before and during your rides will help the body keep running at peak performance and reduce the risk of dehydration and bonking (the inability to continue, extreme physical weakness, usually caused by lack of glycogen in the body). Consuming the proper nutrition after a ride will help with the recovery process and add those essential nutrients that were depleted during the ride.

For more on what to eat during a ride, read tips from Susan Kitchen, Sports Certified Registered Dietitian, USA Triathlon and Ironman Certified Coach.

Sleep is also a very important part of the recovery and building process. Your sleep is important because it helps reduce cortisol levels. Cortisol is a hormone that breaks down tissues in the body for energy. Logging proper sleep allows the body to produce growth hormones to rebuild injured tissues from your training. Enjoy the opportunity to reward your body with recovery and sleep.

Step 4: Training Partner or Groups

Training for a century can lead to many hours of pedaling alone. Why not make it more enjoyable and train with others? Not only is it fun to have the same goal and accomplish that goal together, but there are many great aspects to training with people. Your training partner or group can help keep you motivated, stay on track with your training, help you push through those tough times, and have a fun social aspect to boost morale.

Step 5: Tapering for your Century

When your event is on the calendar, begin tapering two weeks before. You will want to reduce your training volume by 20-25% in week one of the tapering process. During this week, you want to focus more on recovery time, sleep and nutrition.

One week out, aim for a 2-3 hour steady paced ride. Mid-week, cover half or just over half of the event distance. During this week, you will start preparing the body to complete your first century. Continue with a proper nutrition plan to give your body the fuel it needs to complete the ride. Also, make sure you are getting enough sleep to aid in the recovery process and be ready to crush your goal!

Step 6: Enjoy the Journey

Remember, start slowly and progressively work your way up to your cycling goal! Most importantly, relish the process and have fun achieving your cycling milestones. Make sure you are riding fun routes that will keep you motivated and wanting to ride more. It’s time to hop on your bike and go for gold.

To learn more about Pedal for Alzheimer’s or resources about cycling, click here.

WRITTEN BY:

Brandon “Monk” Feehery

Feehery is a professional crit and road race cyclist who has raced in the USA Professional Cycling Championship for the past ten years. He has won multiple stages, been on the overall podium eight times and won the overall two times in the ten-day crit-racing series, Intelligentsia Cup Chicago. He currently races for the Miami Blazers and uses his global reach to share the mission of Pedal for Alzheimer’s. Feehery won his first National Championship in the overall and crit at the Collegiate Road National Championships in Richmond, Va. He also placed third in the 2016 Tour of Fuzhou and fourth in the 2015 Delta Road Race. Over his professional cycling career, Feehery has over 50 professional wins.

Regan Craig and Carl White, Grandaddy during the Holidays

Why I Ride: Ambassador Regan Craig

While I’m not sure he ever owned one himself, my grandfather bought every bike I owned as a child. He grew up in the Great Depression and had neither finances nor the time for a bicycle, but that didn’t stop him from wanting to ride.

He was one of those guys who exemplify the Greatest Generation. He had to leave school at age 12 to take over the family farm, then served in Europe during the Second World War. He took advantage of the opportunities military service provided including earning his high school equivalency.

Grandaddy was able to build a successful construction business and start a family. Grandaddy either lived next door or across the cotton patch all the years we shared on this Earth. I often rode the bike he gave me down a field road to get from my home to his.

We lost Grandaddy to Alzheimer’s in 2001. I started cycling a few years later. When Kyle Dortch shared about Pedal for Alzheimer’s in late 2022, I knew I had to be involved.

I’ve lost many other family members to Alzheimer’s, but my grandfather, Carl White, is the reason I ride. He comes to mind on lots of solo rides, especially passing a field road on the edge of a cotton patch.

WRITTEN BY:

Regan Craig

Reagan Craig is a Pedal for Alzheimer’s Ambassador from Jackson Tennessee.

Luca Giori Why I ride Pedal fro Alzheimer's Ambassador cognitive functioning

Why I Ride: Ambassador Luca Giori

Pedal for Alzheimer’s, a 501c3 non-profit charitable platform, holds a special place in my heart. As a soccer player turned cyclist, I embarked on this incredible journey in 2019 after rupturing my ACL. While I’ve always been an athlete, the world of road cycling opened up new horizons for me. Little did I know that my newfound passion would intersect with a cause that’s deeply personal to me.

Luca Giori Why I ride Pedal fro Alzheimer's Ambassador cognitive functioning

Luca Giori Why I ride Pedal fro Alzheimer's Ambassador cognitive functioning In 2011, one month after arriving in the United States from Italy, I received the news of my grandmother’s passing. It wasn’t Alzheimer’s, but rather a brain tumor that had slowly grown over the past year. Although different, her decline in mental faculties bore striking similarities to the mental deterioration experienced by Alzheimer’s patients. Witnessing her gradual loss of the ability to perform even the simplest tasks was heart-wrenching. It was a stark reminder of the relentless nature of diseases that rob individuals of their cherished memories and abilities.

Beyond my own experience, I’ve seen the profound impact of Alzheimer’s on several of my close friends who are caring for parents battling this relentless disease. Alzheimer’s affects not only the afflicted individuals but also their entire families, who bear the emotional and physical burdens of caregiving. It’s a disease that touches the lives of countless people, leaving no community untouched.

Luca Giori Why I ride Pedal fro Alzheimer's Ambassador cognitive functioning

Luca Giori Why I ride Pedal fro Alzheimer's Ambassador cognitive functioning As a veterinarian, I’ve dedicated my life to the continual improvement of my professional knowledge and competence. This commitment extends beyond the health of animals to the well-being of all living beings. Cognitive decline is a recognized condition not only in humans but also in our beloved animal companions. In the spirit of “One Health,” a collaborative approach that recognizes the interconnectedness of people, animals, plants, and the environment, I felt a calling to become an ambassador for Pedal for Alzheimer’s.

My mission as a Pedal for Alzheimer’s ambassador is twofold. First, I aim to educate and raise awareness about Alzheimer’s, a disease that affects not only people but also our cherished animals. The shared suffering and the potential shared solutions underline the importance of comprehensive research, embracing the interconnection between our well-being and that of our animal companions.

Luca Giori Why I ride Pedal fro Alzheimer's Ambassador cognitive functioning
My journey with Pedal for Alzheimer’s is not only a testament to my personal growth as a cyclist but also a commitment to a cause that touches my heart deeply. I ride with Pedal for Alzheimer’s not only for those who are afflicted but also for the hope of a brighter future where Alzheimer’s is no longer a source of pain and loss. Together, we pedal towards a world free from the shadow of this devastating disease, where memories are cherished, not stolen, and where the health and well-being of all living beings are valued and protected.

Learn more about the Pedal for Alzheimer’s Ambassador program.

Donate in honor of Luca and to help further his impact.

Luca Giori Pedal for Alzheimer's ambassador 2023

WRITTEN BY:

Dr. Luca Giori

Luca Giori, DVM, PhD is an Associate Professor in the Department of Biomedical & Diagnostic Sciences at The University of Tennessee in Knoxville.

PFA, pedal for Alzheimer's, cyclist, cycling, bike, group ride

Group Ride Etiquette

So you are going on a group ride, here are the most important group ride etiquette rules for cyclists.

Make Sure to Point Out ANY Hazards in the Road

Riding in a group makes it hard to see all hazards out there. The best way to make sure everyone is staying safe is to point and call out all hazards. Making sure everyone knows about the hazard is key. Not just the front of the group but everyone needs to know about the hazard. Making sure to physically point and call out anything from a pothole, a dog off leash, glass, or cars pulling out. Key is to stay safe and have fun.

Being Safe on the Road

The riders at the back should keep their attention on cars that are behind the group. Using hand signals to let the car know when it is safe to pass the group or trying to hold them off until it is safe to pass. They should let the group know when a car is passing or trying to pass. The riders in the back should know when it is safe for the group to double up or to ride single file.

Group Ride Pace

The group should always know the pace before the ride. Whether it is a no drop, tempo, or race pace. This is key so you don’t have riders left behind or getting pissed off and never coming back to the ride because it was supposed to be a no drop ride and you have riders pushing a pace that other riders can’t keep up. If you want more of a workout stay on the front longer but don’t increase the pace.

Stay Off of the Brakes

When you are riding in a group you want to stay off the brakes as much as possible. If you need to make minor adjustments to your speed it is best to coast or lay off the pressure on the pedals whenever possible. This allows the riders behind you to do the same thing. When you tap on the brakes the rider behind you needs to make a quick judgment on how hard to hit the breaks.

Usually causing them to slam on the brakes so they don’t run into the back of you. This doesn’t give the rider behind them a lot of time to react and could cause the rider behind you to slam into the back of you and could potentially cause a crash. There are times when you need to use the brakes, but try to make minor speed adjustments without slamming on the brakes to avoid any issues.

Pace the Climbs for the Middle of the Group

When the pack hits rolling hills it can be hard to keep the group together, especially when “that guy” drills it on the front. When drafting is less of a help to the riders in the middle and rear of the group ride, it’s important for the riders at the front to consider everyone when establishing the climbing pace. On social group rides it’s typical to wait at the top of longer climbs, but to minimize the frequency of these soft pedal periods or stoppages, try to set a pace that’s comfortable for the middle of the group. This may mean it’s a bit easy for the fast guys at the front and pretty challenging for some folks at the back, but this pacing strategy is good for keeping the group together over the majority of hills.

PFA, pedal for Alzheimer's, cyclist, cycling, bike, group ride

Standing Up Out of the Saddle

When you stand up to pedal your weight shifts back and causes your bike to move back.

Sometimes when you do this, your wheel could almost move a full wheel length back and could cause the rider behind you to overlap wheels or run into the back of your wheel. This could cause a crash. If you want to stand up out of the saddle, make sure the rider is a safe distance behind you. If they are not, you can let them know you are getting out of the saddle by flicking both elbows or simply tell them you are getting out of the saddle. Doing this will allow the rider behind you to move away from your wheel without causing a crash.

Don’t Overlap Wheels

In a group never overlap wheels with the rider in front of you. We can’t always see what is going on in front of us and at any moment a rider might swerve to avoid a pothole or they get hit by a gust of wind. When you are overlapping a wheel this could cause them to take out your front wheel and end up on the ground.

Have Fun!

We all go on group rides to have fun and enjoy being on the bike with others. The last thing we want is someone getting hurt or not being able to finish the ride because of something that could be prevented. Follow these simple steps to have a fun group ride.

WRITTEN BY:

Brandon “Monk” Feehery

Ambassador Julie Dortch and Grandfather with Alzheimer's cyclist Why I Ride

Why I Ride: Ambassador Julie Dortch

Tapping into my “why” for riding bicycles actually begins with my background in running. For years, I ran recreationally and always called it ‘jogging’ instead of running. It wasn’t until my friend and her sisters convinced me to join on their long-run Saturdays that I realized moving my body at any pace was considered running for me, and after my first half-marathon in the heat of Tennessee in July, I was hooked. Throughout my miles pounding the pavement, I began to use the time as reflection on God’s blessings in my life. Many miles were spent praying for others and receiving promises on my own life.

Fast forward through a few running-related injuries and my gears shifted towards riding bicycles with my husband, Kyle. We met so many amazing people through years of riding and racing road bikes. Pedal for Alzheimer’s stood out along the way as an organization that we were introduced to by a mutual friend and knew we had to support. At the time, my grandfather, Kenneth Stafford, was only in the early stages of Alzheimer’s and still mostly the same, walking every morning and joining my parents for supper every night.

When I think about my journey with cycling, I’m reminded of the natural ebb and flow of life. Putting in hard work, grinding on days that seemed to be a chore, but enjoying the sense of accomplishment and the company of amazing people.

As the years progressed in my grandfather’s disease, I witnessed firsthand the work ethic of my mother in caring for him. I am quickly reminded the grit and determination that I love about cycling was more than likely ingrained in me from my grandfather’s hard work ethic. Observing my mother caring for her father was a true display of a long line of character traits that I still admire and aim to emulate.

Ambassador Julie Dortch and Grandfather with Alzheimer's Why I Ride

He worked a full time job as postmaster of my small hometown while running a local dry-cleaning business. He then stayed busy even in retirement with fishing, woodworking, and gardening. When I explain that I honor my grandfather’s memory by cycling, it is not because he loved to ride bikes. Actually, I’m not sure I ever saw him on a bicycle. But, his drive, hard work ethic, and love for family time are some of the same qualities that I connect with cycling, and I’m determined to continue those qualities in his honor.

Learn more about the Pedal for Alzheimer’s Ambassador program.

Make a donation in honor of Julie and in loving memory of Mr. Kenneth Stafford.

WRITTEN BY:

Julie Dortch

Julie and her husband, Kyle, reside in Springfield, Tennessee where she is an assistant principal for the local school district. They enjoy riding mountain bikes, camping in their van, and loving their 12-year-old furry family member, Gunner.

PFA, pedal for Alzheimer's, cyclist, cycling, bike, tire tube

Cycling Tools to Always Bring With You on a Ride

Whether you’re an experienced cyclist, just starting out, or somewhere in-between, these are the necessities for any ride.

Always Carry Your Cell Phone

You should always have a fully charged phone on you when you go out for a ride. You can use it to call for help, find directions if you get lost or as a light if you get stuck riding in the dark. It could save you in multiple situations. When you are out on the road you could have an issue with your bike where you are not able to make it back home safely. You could use your phone to call someone to pick you up. If you don’t have anyone in the area that you know who can pick you up, you could always call an uber. We all know cycling isn’t the safest sport out there and anything could happen to your or another rider. You can use your phone to call for help. The cell phone is the #1 thing to bring on every ride.

Make Sure to Have a Tube, Pump/CO2 and a Tire Lever

When you get on the bike make sure you have a proper tube that will fit on your bike. You do not want to just bring any tube. Make sure the valve stem is long enough and the correct size. If you flat and go to pull out your tube you don’t want to see that it is a mountain bike tube for a road wheel or too small of a stem that you can’t inflate your tire. With this you want to make sure your pump/CO2 works. You don’t want to get stuck on the side of the road with a flat tire wondering how you are going to get home.

PFA, pedal for Alzheimer's, cyclist, cycling, bike, tire tube

Bring a Multi-tool with a Chain Tool

A multi-tool will allow you to fix most things on a bike. If your seat slips or you need to tighten your handlebars you can pull out the multi-tool to fix the issue. Make sure the multi-tool has the proper sizes to fix most bolts on your bike. If possible you want to make sure you have a chain tool that is connected to the multi-tool. If you are out on a ride and your chain breaks, without that chain tool you might be stuck out there. You can use the chain tool to connect the chain back together to get you home.

Money/Credit Card is Important When Going Out for a Longer Ride

This could save you from bonking or suffering from dehydration. If you run out of water or food you can stop at a store, gas station or restaurant to refuel and get back on the road.

Always Bring Extra Food and Water

Even if you are going on a short ride, it is smart to pack a snack and bring extra water. You might plan on only riding for 45 minutes but you take a wrong turn or get a flat and that 45 minute planned ride turns into a 2 hour ride. This extra fuel will help give you the extra energy you need to get home.

WRITTEN BY:

Brandon “Monk” Feehery

Self-Care for Spouses Caring for a Partner with Alzheimer’s Disease

A caregiver can be anyone who helps an individual with various tasks of daily living, transportation to and from health appointments, and assisting someone with financial decisions.

While the most common type of caregiver people think about are paid healthcare professionals, friends, family members, and spouses can also be caregivers.

Being a caregiver for your spouse with Alzheimer’s disease can feel like the most appropriate decision and the only one you can think of because who can take better care of your partner than you?

The problem is when you, acting as a caregiver, experience caregiver burnout. When a person experiences this caregiver burnout, they start to live in a state of physical and mental exhaustion. Caregiver burnout is critical to avoid because you may start to develop changes in your own health and perception of your relationship with your partner.

This article will help you develop better-coping strategies and provides tips for caring for a loved one with Alzheimer’s disease.

How to cope when your spouse has Alzheimer’s disease

When it comes to having a spouse or partner that has Alzheimer’s disease, it is normal to feel like if you stop to take time for yourself, you are being selfish. Remembering to take time for yourself is also critical because you can’t expect to properly assist anyone if you are not in a good mindset.

Often, when you are acting as a caregiver for someone else, your own health gets placed on the back burner. When you can’t stop for yourself, you may find that your health conditions worsen, and you are suddenly physically unable to care for your spouse.

Consider the following Alzheimer’s disease caregiver tips to help you prepare for being a caregiver as well as help to better care for yourself so that you can care for your spouse.

Increase your physical activity. Find an activity that you will find enjoyable, such as walking or yoga. Start in little increments and gradually increase the amount of time and how many days you perform this activity. Physical activity will help relieve stress and comes packed with health benefits when done consistently.
Take up other people’s offers to help. Accepting other people’s offer to help can be difficult because you might feel like you don’t want to burden them; however, they are probably asking because they want to help! If someone asks how they can help, assign them a task and relieve yourself of that burden.
Connect with others. Find a community, either online or in-person, of others in similar situations to yours. Hearing others express frustrations you have as well can be a big reliever in knowing you are not alone.
Implement techniques to encourage relaxation. Learning relaxation techniques is incredibly beneficial to help you deal with those times when frustration is high. Relaxation techniques use skills like visualization and meditation, for example.
Empower yourself by staying knowledgeable about the disease. Remain current on all the latest information in the progression and treatment of Alzheimer’s disease. Follow your favorite organization on social media or join their mailing list to ensure you get the latest news.
Remember to plan for the future. Planning includes not only your future but your spouse with Alzheimer’s future as well. It can be difficult to think about, though it’s essential to prepare for the chance of you not being around to care for your spouse. Think about who and how you would want care provided to your partner. Start and even keep planning for your financial future. Remember to budget for unexpected bills.
Try to remain flexible. The person with Alzheimer’s disease needs will change over time. Sometimes a task they could do a couple of days ago has changed, and they can’t perform that same task. Remember to be fluid and not let frustration turn a situation into a bad one.
Take a break. Prevent yourself from getting overwhelmed. Stop when you must, and remember it’s ok if your house isn’t perfectly clean. What’s important is that you stop to care for yourself as well.

Different stages of Alzheimer’s disease can affect you as a spouse differently. So knowing and understanding your role as a caregiver in these stages is helpful to anticipate the amount of help you will need to provide to your spouse and the kind of help you may need yourself.

Care during the early stages

In the early stages, most people can function independently, and your role should be that of support. Your spouse will need you to be there as a companion and to help them make decisions that involve their (and your) future.

During this time, you and your partner can start planning for the future financially. Consider the costs that may occur in treatment, from medications to therapies. You and your partner can discuss care measures that will happen later on as the disease progresses. Consider whether you and your partner can afford an in-home caretaker or if it is more financially reasonable to consider more of an assisted living type facility.

Care during the middle stages

You may notice more behavior changes beginning to occur during the middle stages of Alzheimer’s disease. The person with Alzheimer’s disease will start to have difficulties with activities of daily living like bathing and dressing during the middle stages.

Your spouse may need a more structured routine to help cope with these new changes. It’s also important to stay flexible during this time because you might need to change that routine as the disease progresses and your spouse’s needs increase.

During this time, you have to remember to take time for yourself. The caregiver role you are now in can be very demanding and a considerable change from before.

Caregiving during the late stages

When a person is in the late stages of Alzheimer’s disease, their need for care is often high. They might have problems with eating and need meals cut up for them or even a specialized diet.

The person going through the late stages of Alzheimer’s disease will often need extensive care. Your partner may need full-time care, meaning they might need to be in a facility with healthcare professionals responding to their needs around the clock.

Signs of caregiver stress

Being a caregiver can have its burdens, and knowing what caregiver stress might look like is helpful. When you are focusing on someone else’s needs, it’s common not to notice your own, and unfortunately, when you go long enough and do not realize you’ve reached your limits, your health can become affected.

When you start to notice any of the following, it may be a sign that you are experiencing caregiver stress:

Difficulty concentrating
Frequent moments of sadness
The increased need for alcohol
You start to get irritated easily and quickly
Feeling tired even after a decent night’s sleep
Gaining weight quickly or even losing weight rapidly
Anger towards your spouse with Alzheimer’s disease
You haven’t connected with friends and family recently

When you start to notice any signs that you are experiencing caregiver stress, then you should reach out for help. This is the time to talk with other family members and enlist them in some of the care for your partner.

Respite care is something to consider. Respite care is when the caregiver will take some time off from their responsibilities in being a caregiver. Services are often offered from care either in the home or adult day care and sometimes can be provided by short-term nursing home care when needed.

While caring for a spouse with Alzheimer’s disease can be stressful, it is important to know that you are not alone. Ask family and friends for help when you need it. Reach out to community programs and resources for help when you need it. Take care of yourself so that you can better care for your loved one.

Key Takeaways

Caregivers can develop caregiver burnout and experience physical and mental exhaustion.
It is important to ask for help when you start developing signs of caregiver stress so your health doesn’t suffer.
Accept help from others when they offer it, and remember to take time out for yourself.
During the early stages of Alzheimer’s disease, plan for the future with your spouse to make arrangements.
Keep in mind that during the late stages of Alzheimer’s disease, the care needed by your spouse will be high and often around the clock.

Resources

Alzheimer’s Association. (n.d.). Early stage caregiving. https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage

Eldercare Locator. (n.d.). Community Resource Finder. Administration for Community Living. https://www.communityresourcefinder.org/

MedlinePlus. (n.d.). Caregiver health. U.S. National Library of Medicine. https://medlineplus.gov/caregiverhealth.html

Mayo Clinic Staff. (2021, January 6). Caregiver stress: Tips for taking care of yourself. Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

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.

Alzheimer’s Dementia: Early Signs and Screening

There is no single test that identifies Alzheimer’s disease, therefore delays in diagnosis often occur. This is problematic because Alzheimer’s is typically an extended illness, and the burden on families, caregivers, and the healthcare system is considerable. Shortening the time between disease onset and confirmation of the condition can ease the impact on a family’s resources.

Closing the gap requires awareness of the early signs of cognitive problems and the subsequent application of appropriate screening methods for dementia.

Signs and Symptoms

An initial sign of Alzheimer’s disease is trouble remembering new information to a degree that interferes with independent functioning. People with the condition will rely more and more on others to help them navigate things like conversation or event details, lost items, and retracing their steps. According to the Alzheimer’s Association, additional changes that warrant a medical and cognitive evaluation are:

Change in mood or personality
Withdrawal from usual activities
Decreased or poor judgment
New problems with words in speaking or writing
Trouble understanding visual images and spatial relationships
Confusion regarding time and place
Difficulty finishing familiar tasks
Limited planning and problem-solving abilities

caregiving family cognitive function

Mild Cognitive Impairment versus Dementia

Dementia is a syndrome characterized by a collection of mental, physical, and behavioral changes that present in a certain pattern that helps identify the type. Alzheimer’s disease is the most common form of dementia. Not all cognitive impairment results in Alzheimer’s, but those with the former are more likely to experience further decline. The National Institute on Aging reports that for those over age 65 with mild cognitive impairment (MCI), up to 20% develop dementia within a year’s time.

An important distinction between MCI and dementia is that those with the former issue are still functionally independent and able to successfully live alone. Here’s a snapshot of other basic differences between MCI and dementia.

Mild Cognitive Impairment

Losing things often
Stable behavior
More difficulty with word finding than people of same age

Dementia

Unable to retrace steps and find an item
Personality changes
Difficulty relaying information in a logical or clear way

Identifying and Managing Dementia

Primary care providers may be well-versed in dementia recognition and work-up while others are less exposed and aren’t as confident. Physicians, nurse practitioners, and physician assistants who see patients and families first, have to decipher between the nuances of MCI and dementia. They must also rule out other possible causes of memory loss and confusion like depression, infection, or vitamin deficiencies.

Specialists

Being able to engage with treatment and care solutions early on improves the quality of life for those affected and may also decrease misuse and overreliance on hospital-based resources. However, access to specialists to help confirm a dementia diagnosis and/or to co-manage the course of the illness may be limited. Such specialists – listed in the table below – often require a referral, which can be a barrier to timely follow-up.

Geriatricians – Primary care physicians with dedicated training in the care of older adults.

Geriatric psychiatrists – Physicians focused on mental health and behavioral conditions related to aging.

Neurologists – Specialists who diagnose and treat nervous system abnormalities including brain disorders like dementia.

Neuropsychologists – Mental health professionals with advanced training in psychology including memory testing.

Barriers to diagnosis

A history and physical by a medical provider is by far the most useful tool in tracking memory and behavioral changes over time. A clinician will evaluate overall health status which may illuminate factors that are contributing to cognitive problems. They will also order needed tests such as lab work or brain scans to further investigate underlying causes of memory impairment.

As outlined above, lack of access to an experienced medical provider and/or a neuro specialist can be barriers to a proper dementia assessment. Other reasons for a delay in diagnosis

include:

Subtle onset of signs and symptoms
Assumption that signs are a “normal” part of aging
Difficulty getting the person with dementia in for testing
Disease stigma and subsequent shielding of the person by loved ones

Cognitive screening tests

In reality, the confirmatory test for Alzheimer’s disease is a biopsy of brain tissue at the time of death. As this is obviously not possible for patients living with dementia, the best providers can do is perform testing that leads to a “probable” diagnosis.

The following are examples of validated cognitive screening tests used to begin the process.

Ascertain Dementia 8 (AD8) – An 8-item survey that identifies early cognitive changes by asking about memory, orientation, judgment, and function.

Mini-Cog – A brief but sensitive test applying word registration, word recall, and clock drawing to detect early dementia.

Mini-Mental State Exam (MMSE) – An eleven-question assessment of thinking, communication, understanding, and memory that determines mental status and cognitive function.

Montreal Cognitive Assessment (MoCA) – A multi-variable test (e.g. visuospatial abilities, short-term memory, executive function) that is highly sensitive for mild cognitive impairment.

Supportive testing

The Alzheimer’s Association identifies the below tests as building blocks toward confirmation of a dementia diagnosis:

FDA-approved digital cognitive assessment tools like the self-administered Computer Assessment of Mild Cognitive Impairment (CAMCI).
- Utility: Can be accessed remotely; provides automated, standardized results.
Brain imaging such as MRI, PET, or CT scans.
- Utility: Identifies abnormal brain tissue consistent with a type of dementia.
Genetic testing
- Utility: Provides opportunities for early identification and informed decision making for those at-risk.
Depression and anxiety screening
- Utility: Identification of treatable chemical imbalances and behavioral components that compound cognitive issues.

Conclusion

The presence of memory problems, confusion, and personality shifts is unsettling to those affected. Often friends and loved ones are the first to notice such changes. Getting the individual properly evaluated depends not only on their willingness to participate but also the availability of resources – including access to experts in dementia care. A history and physical exam should be first and include a recognized cognitive screening tool. If warranted, a more involved work-up might involve brain imaging and referral to a neuro specialist for confirmatory testing as well as management recommendations.

Sources

Alzheimer’s Association. Medical tests for diagnosing Alzheimer’s disease. https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests

Alzheimer’s Association. Overcoming stigma. https://www.alz.org/help-support/i-have-alz/overcoming-stigma

de Miranda, L. F. J. R., Matoso, R. O., Rodrigues, M. V., de Lima, T. O. L., Nascimento, A. F., Carvalho, F. C., Moreira, D. R. M., Fernandes, J. C., de Paula, J. J., Magno, L. A. V., Caramelli, P., & de Moraes, E. N. (2011). Factors influencing possible delay in the diagnosis of Alzheimer’s disease: Findings from a tertiary Public University Hospital. Dementia & neuropsychologia, 5(4), 328–331. https://doi.org/10.1590/S1980-57642011DN05040011

Li Yang, Jing Yan, Xiaoqing Jin, Yu Jin, Wei Yu, Shanhu Xu, Haibin Wu, Ying Xu & Caixia Liu (2018). Estimation of diagnostic performance of dementia screening tests: Mini-Mental State Examination, Mini-Cog, Clock Drawing test and Ascertain Dementia 8 questionnaire, Aging & Mental Health, 22:8, 948-952, DOI: 10.1080/13607863.2017.1320701

National Institute on Aging. How is Alzheimer’s disease diagnosed? https://www.nia.nih.gov/health/how-alzheimers-disease-diagnosed#:~:text=Perform%20brain%20scans%2C%20such%20as,other%20possible%20causes%20for%20symptoms.

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.

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

Primary Care for Alzheimer’s Disease

The most common type of dementia is Alzheimer’s disease and about 1 in 9 adults over aged 65 have the condition. The greatest risk factor for developing Alzheimer’s is advancing age. This means that the older a person is, the more likely it is to occur. As an illustration, from 2022 Alzheimer’s Disease Facts and Figures, here are percentages of those affected:

5% of people aged 65-74
13.1% of people aged 75-84
33.2% of people aged 85 and older

Researchers project two significant population events by 2050. Both will impact individuals living with dementia and the care they receive.

Approximately one in five people will be 65 years old or older. This is due to advances in medicine, improving socioeconomic factors and the maturing of the large baby boom cohort (those born 1946-64).
About 7 million people aged 85 and older are projected to have Alzheimer’s dementia, accounting for about half of all older adults with this condition. This means too that millions of people serving as caregivers will require guidance and support.

The readiness of primary care

Primary care providers (PCPs) may be family doctors, internal medicine physicians, nurse practitioners or physician assistants. Active management -meaning regular communication, visits and attendance to ongoing issues – results in a better quality of life for patients and caregivers. Studies reflect that PCPs are very aware of the increasing age of their patient panels and because of it, feel a duty to stay current with changes in dementia care.

A tough reality though is that a 2019 survey by the American Alzheimer’s Association revealed that only half of the 1000 physicians polled believed they were prepared to meet the practice demands associated with such an increase in older Americans with dementia. Related issues are not only longer visit times but also the many health care updates competing for practitioners’ time. Also, more than half of PCPs stated there were not enough specialists to assist. And they are correct. The U.S. Department of Health and Human Services estimates a deficit of almost 27,000 geriatricians nationwide by 2025.

Specialists

PCPs look to the following experts to not only co-manage the progression of Alzheimer’s disease but also to offer vital support and services to caregivers and families.

Geriatricians specialize in the care of elders and are trained to consider the aging body and mind’s distinct needs regarding medication, illness and injury.

Neurologists focus on the diagnosis and treatment of nervous system disorders like dementia.

Neuropsychologists are clinicians who evaluate and characterize people’s responses to brain injury or disease.

Other health professionals who specialize in geriatrics but remain in short supply include nurse practitioners, pharmacists and social workers.

Building a relationship

Foundational in the giving and receiving of care for Alzheimer’s disease is for all parties to actively invest in a relationship. How can each side accomplish this? It starts by having realistic expectations of one another.

If Alzheimer’s disease is known, it is important for those affected by the condition to keep the PCP informed of any changes in demographics or health status. This includes moving, tobacco and alcohol use, falls, medication starts or stops, plans for extended travel and any urgent/emergency care visits or hospital stays.

Likewise, it is reasonable for the patient and family to have the following expectations of the PCP’s office:

Up-to-date screening to measure the progression of cognitive impairment
Effective management of related symptoms/behaviors
Resources for the training and support of family and caregivers
Coordination of care including referrals to available specialists
Treatment information and time to discuss best choices for the individual
Health care directive introduction and guidance

Medical providers are held to standards of care including mandatory continuing education. An example of this training would be the latest research on Alzheimer’s prevention. Holding up their professional end of the relationship means investing in such learning opportunities and sharing new knowledge with patients.

Interestingly though, almost half of PCPs from the above survey shared that the most valuable education regarding dementia came from their interactions with patients and families. This points to the true interdependence between the individual affected, the caregiver(s) and the chosen primary clinician.

Preparing for a visit

Be proactive but keep expectations simple! A change in routine and travel outside the home can make for a long day, so don’t try and do more than get to the office and back. Do your best to confirm transportation; sometimes getting to the clinic is the biggest hurdle.

Gather needed information before the day of the appointment. You may have homework from the last meeting and being prepared will make things go more smoothly on clinic day.

Examples of what to bring:

Personal notes on changes in memory or behavior
Dates and times of PRN or “as needed” medications
Record of weights and food preferences
Lab results
A list of questions and concerns to be addressed at the visit

During the visit

Stay present to feelings that arise and notice any stress points. Medical offices can be full of distractions and chaos. Let the staff know if you have certain time restraints. Ask about:

names and phone numbers of important contacts and
whether your provider ever makes house calls.

Waiting can result in anxiety, restlessness or sleepiness. Stay calm and try to be flexible if circumstances change; it is ok to transition to a phone or video appointment or reschedule altogether. Remember that you don’t have to stay for labs or other testing if asked, it can be done at a future time.

After the visit

Review the experience in your mind, on paper or with a trusted person.

Did you get what you needed?
Is the follow-up plan clear?
How do you feel about going back?

These questions will guide your next steps and encourage discussion as you continue in your relationship with primary care.

Sources

Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. 

Alzheimer’s & Dementia. Special Report on Primary Care Physicians and Alzheimer’s Care in America.

U.S. Dept of Health and Human Services. National and Regional Projections of Supply and Demand for Geriatricians: 2013-2025.

WRITTEN BY:

D. Dow Stick MSN, APRN

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.