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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.

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

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.

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.

2C26D170-D84F-4FE8-A137-5827268361AC-Small (1)

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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.

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