As the care partner of someone with early onset Alzheimer’s disease, you may be feeling additional stress as we enter this holiday season.  While we are still in the midst of COVID-19, there are steps you can take to modify family traditions.  The suggestions below can help keep you and your loved ones safe, yet still provide opportunities to enjoy the holiday season and make new memories.

Shift your expectations
Simplify your celebrations as much as possible. Give yourself permission to only do things that can be easily managed. Have a conversation with family and friends to discuss the changes in this year’s holiday gatherings.

Celebrating in the midst of COVID-19
If your loved one with early onset Alzheimer’s disease is living at home, the following activities are great ways to keep them involved in celebrating the season:

• Schedule a holiday parade. Ask family and friends to drive by your house with homemade signs with holiday decorations.
• Bake Christmas and holiday cookies together.
• Go for a walk in your neighborhood, or drive through other neighborhoods, to look at the holiday lights.
• Send holiday cards and have your loved one sign the cards if they are able.
• Spend a morning or evening outside with hot chocolate and blankets.
• Listen to favorite Christmas carols or hymns.
• Watch favorite holiday movies.

Remember to maintain at least 6 feet of distance between yourself and any person who is not a member of your household.

If your loved one is in a long-term care facility and the facility has approved visits with COVID protocols, please abide by their guidelines. Encourage friends and family members to schedule time for window visits or an online visit via Zoom or Facetime. Whether your loved one is living at home or in a care facility, please avoid large gatherings.

Don’t feel pressured by the past
It is important not to compare past holiday memories to what is currently possible. Care partners can create added stress for themselves when they compare how things used to be to how things are now. Focus on the present and use this time to create new memories and traditions.

Surround yourself with support
Ask friends and family members to help—whether it’s going to the grocery store or coming to sit with your loved one so you can have a break. —you need to take care of yourself. This may be a good time to join an online support group. Being able to share your feelings and experiences with others that understand what you’re experiencing can be invaluable.

We get “Silver Alert” notifications on our phones when someone with Alzheimer’s disease wanders away from their home. If you’re brave enough to read the comments on news and social media sites, there’s always at least one comment that says, “they should have done a better job watching them.”  If it was only that simple.

I never thought wandering was something Gayle would experience because I was with her 24/7, but it happened right in front of me. I watched her demeanor shift as she took off out of the house. I ran behind her as she walked into the middle of one of Houston’s busiest streets. Fortunately, with the assistance of our neighbor, I was able to get her home safely.

The Alzheimer’s Association estimates that 6 in 10 individuals with Alzheimer’s will wander at some point. Wandering does not equate to an inattentive care partner, but occurs for a multitude of reasons:

• Following past routines, such as going to or leaving work, picking up children from school / sports activities, going to the grocery store.
• Fear or uncertainty of an unfamiliar place.
• Searching for something or someone, such as past family members or friends.
• Looking for the bathroom, food, or wants time outside.
• As the disease affects visual guidance and navigation, they may get lost in familiar places.
• Changes in medications.
• Delirium is an abrupt change in the brain that causes increased confusion and emotional disruption.

Research has also shown wanderers usually go in the direction of their dominant hand or in the direction of the sun or light.

Tips to Prevent Wandering

Not all wandering is harmful if your loved one is in a safe and controlled environment, such as within your home or yard. Wandering becomes dangerous if your loved one leaves their home, especially in extreme temperatures, or if they wander to a secluded area.

If you begin to experience your loved one wandering, keep a log that includes:

• Day of the week
• Time of day
• What activity were they doing prior to wandering.
• If you see them walk out of their familiar surroundings, note what they were doing and the direction they went.

As you begin to identify the times wandering occurs, plan meaningful activities to keep your loved one engaged. If they consistently want to go outside at 4:30 pm, plan daily walks at that time. If your loved one wants to “go home”, avoid telling them they are already home. Validate their feelings as they may be feeling scared, abandoned, or disoriented. Provide reassurance they are safe and try and engage them in a comforting activity.

Increased stimulation can often become overwhelming to the person with early onset Alzheimer’s disease, so it’s best to avoid busy or crowded places. Also make sure there is not a lot of stimulation at home. Multiple sources of input can cause increased anxiousness and agitation. Additional safety precautions include:

• Having someone at home with your loved one at all times. Please don’t leave your loved one alone in the car.
• Various alert devices let you know your loved one is attempting to leave your home. Options include:
  • Pressure-sensitive alarm mats placed at the doors or bedside.
  • Covers over doorknobs.
  • Door alarms that chime when a door is opened.
  • Sliding bolt locks placed high on front and back doors (out of their sight line).
• Removable curtains over doors.
• Hide the car keys, regardless of whether they are still driving.

 Returning Safely Home

We recommend enrollment in the MedicAlert + Safe Return program with the Alzheimer’s Association. If an individual with Alzheimer’s or a related dementia wanders and becomes lost, care partners can call the 24-hour emergency response line to report it. A community support network is activated, including local Alzheimer’s Association chapters and law enforcement agencies, to help with safe return. This enhanced service provides critical medical information to emergency responders. To get more information and to enroll for the MedicAlert + Safe Return program, please call 1-888-572-8566 or register online at: medicalert.org/safereturn.

Everyone at the Gayle Wells Foundation for Early Onset Alzheimer’s & Care (GWF) was stunned and disheartened to learn of the recent changes to the Texas Social Work Code of Conduct, allowing social workers to refuse service to people based on disability, sexual orientation, gender identity, and gender expression. Governor Greg Abbott submitted this request and did not honor the 30-day requirement for public comment. The change was voted on and approved at a joint meeting of the Texas State Board of Social Worker Examiners (TSBSWE) and the Behavioral Health Executive Council, TSBSWE’s governing body. The Texas Chapter of the National Association of Social Workers was not consulted about this change and they are mobilizing action steps to fight this decision.

Social workers fight every day to serve the needs of people who are frequently dismissed by others. To give permission for any professional social worker to discriminate towards vulnerable populations is a lack of basic human decency. There has never been a more important time for us as social workers to make our values known.

The GWF serves individuals, care partners, families, and healthcare professionals who are impacted by early onset Alzheimer’s disease. According to the legal definition of “disability”, all individuals who have received a diagnosis of early onset Alzheimer’s disease and other forms of dementia are considered disabled and can be denied service by social workers based upon the changes made to the Texas Social Work Code of Conduct.

It is appalling to think anyone could be turned away because of a diagnosis that defines them as disabled, who they choose to love, or the gender they identify with. As a result of the changes to the Texas Social Work Code of Conduct, lives will be lost, and people will be treated unfairly and not represented at a time when a public health crisis is a daily reality.

The Code of Ethics as set forth by the National Association of Social Workers (NASW) states the following regarding the ethical responsibility related to discrimination:

Social workers should not practice, condone, facilitate, or collaborate with any form of discrimination on the basis of race, ethnicity, national origin, color, sex, sexual orientation, gender identity or expression, age, marital status, political belief, religion, immigration status, or mental or physical ability.

While the GWF is a nonprofit, 501(c)(3) organization, our staff are licensed social workers. This allows us to expand the level of services to individuals and families impacted by early onset Alzheimer’s disease.

The GWF will always honor and abide by the NASW Code of Ethics and will not tolerate or allow any staff member, student intern, board member, or volunteer to discriminate against any individual or group for any reason. The GWF is currently working on several initiatives specific to the LGBTQIA+ community and we will continue to provide services to all individuals impacted by early onset Alzheimer’s disease and other related dementias.  We will always honor our core value of respect—holding each of you in highest regard for your unique life experiences.

By: Todd Wagoner, LCSW

With a diagnosis of early onset Alzheimer’s disease, navigating the world of medical terms can feel like learning a foreign language. While some experts assert that you can learn to speak a foreign language with some fluency in about 48 days if you study the language for 10 hours a day, who has that kind of time, especially when you are caring for someone with early onset Alzheimer’s disease?  Understanding medical terminology and following routine medical advice can become overwhelming when the terms keep individuals and care partners from gaining a clear understanding of their treatment plan, medical test results, or medications prescribed by medical providers.

The Journal of General Internal Medicine reports healthcare providers such as physicians, nurse practitioners, and physician assistants use terminology not understood by individuals and family members as often as seventy (70) times per discussion. ¹ This communication gap can leave both the care partner and individual with early onset Alzheimer’s disease vulnerable to mistakes in care and heightened stress. Confusion over medical terminology can even lead to a medical emergency, which we want to help you avoid.

What can care partners do to ensure good communication regarding the individual’s plan of care?   Here are a few suggestions we hope will help:

1. If you are unsure about a particular term or a plan, ask questions. It’s essential to allow yourself to say, “I’m not sure I understand what you mean,” or, “I’m unsure what the plan is, can you please clarify?”
2. Repeat what you think you heard back to the healthcare professional, even if you believe you understand, to make sure everybody is on the same page before leaving the conversation.
3. You may find it helpful to have another friend or family member present with you and your loved one when complex discussions take place or new information is shared. This person can take notes to document the information shared and recommended plans. If test results or information discussed is upsetting, having someone else present allows the care partner or person with the disease to experience natural reactions or emotions while still being able to leave the appointment with the information you need for the days ahead.
4. Ask for any additional information you feel you need or ask to speak with someone knowledgeable about your questions and concerns and who will take the time to discuss them. Medical offices and hospitals hire qualified clinicians such as pharmacists, nutritionists, respiratory therapists, nurses, and social workers who can sit with you and your loved one to address your concerns and help you fully understand whatever you need to know.

The care partner is the best advocate a person with early onset Alzheimer’s disease can have.  No one has a more intimate understanding of their needs, wants, and desires as the two of you navigate a complex medical system with its own “foreign” language.  You become the individual’s voice to help members of the medical community remember they are treating a person and not just a condition. As a result, your questions, conversations, and concerns help the medical team better address and honor your loved one’s values, goals, and choices. In this way care partners can assist healthcare systems in becoming more person-centered and less disease-centered.

On the Gayle Wells Foundation website, you will find a comprehensive list of terms commonly used by medical professionals when treating someone with early onset Alzheimer’s disease. You can access our list “Common Medical & Alzheimer’s Terms” by clicking here. If you are a care partner and you have found other solutions for navigating medical conversations, we would love to hear what has worked for you or hear your questions as you care for your loved one with early onset Alzheimer’s. If you have questions or need assistance, please reach out to Laura Sutherland, LMSW, at laura@gaylewells.org.

Pitt, Michael B., Hendrickson, Marissa A. “Eradicating Jargon-Oblivion—A Proposed Classification System of Medical Jargon.  Journal of General Internal Medicine.  November 11, 2019.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1496869/pdf/jgi_263.pdf

By: Melinda Mattson

Early onset Alzheimer’s disease brings changes on every level, but perhaps none as distressing as those which affect the mind. One of the cruel realities of the disease is the damage to the brain for the individual with early onset Alzheimer’s. While there is no known cure to stop this process, there are things we can do to slow the progress of the disease and keep our loved one’s mind active.

Noticing your loved one lose their train of thought or not recognize familiar places can be frightening. The progression of the disease can seem like a foregone conclusion leaving care partners feeling helpless and defenseless. But the adage “the best defense is good offense” is especially true for care partners and their loved ones.

You have likely heard the benefits of brain games for staving-off the onset of dementia, but you may not know mentally stimulating activities can help those living with early onset Alzheimer’s disease as well. “Research studies suggest that exercising the brain can improve the thinking capacity and memory of people with dementia. Regular brain training slows the rate of cognitive decline and improves the quality of life of people with Alzheimer’s disease.” ^[1] Stimulating activities can delay the decline of cognitive function for individuals with early onset Alzheimer’s and those with other forms of dementia. In addition to improvement in cognitive function, cognitive stimulation improves the disposition and overall quality of life for individuals and their care partners.

A Cochrane Library study review included 15 trials with a total of 718 participants and found that participants with mild to moderate dementia who engaged in these activities twice a week for 45 minutes improved quality of life and they were able to communicate and interact better than previously. ^[2]

You know your loved one best and know what activities might or might not fit into your life and unique circumstance and stage of disease progression.  Here are just a few examples of practical ways to keep the mind active. Find a few you think might bring some enjoyment and benefit to you and yours:

• Listen to music and try to name the instruments you hear playing
• Work on crossword and word puzzles
• Play nostalgic card games
• Read books
• Exercise
• Garden and focus on the sights and smells of the outdoors
• Bake and focus on the aroma in your home

Simple as these activities seem, they do enrich our lives and promote brain health as much as physical exercise does for our body. For those who are looking for additional options, please read Engagement and Activities that Promote Purpose. In this document, we provide suggestions for making everyday activities more meaningful and enjoyable for you and your loved one. In addition to activity ideas, we have provided an expansive list of museums, zoos, and aquariums that can be accessed online.

As always, we at the Gayle Wells Foundation for Early Onset Alzheimer’s & Care are here to support you in your journey. If you have any questions about early onset Alzheimer’s disease, please contact us at laura@gaylewells.org. We are here to help.

^[1] Max Jones of the Allday Chemist, Five Myths About Alzheimer’s Debunked

^[2]Cochrane Database of Systematic Reviews, February 15, 2012

Exciting research has been published about the discovery of a new type of plaque linked to early onset Alzheimer’s disease. Learning more about the “coarse-grained” plaques will hopefully lead researchers to look at interventions and treatments differently for those with early onset Alzheimer’s disease. Click here to access article.

By: Emily and Scott Sutherland

For decades now, the scientific and medical communities have conducted fascinating studies on the powerful connection between music and the human brain. And, while much of human consciousness remains a mystery, these studies repeatedly conclude that our bodies seem hard-wired to connect music with long-term memory.

In her book, The Power of Music, Elena Mannes tracked individuals’ relationship with music throughout their life span and found an undeniable correlation between the effect of certain musical chords and intervals with brain development and function. Hearing is the first of the five senses to develop while a baby is still growing in the womb and is typically the last to cease during an individual’s final breaths, suggesting that hearing takes on a significant role in every stage of life.

We also know that music stimulates activity in more parts of the brain than any other human function. From this discovery, we are learning how music can tap into the long-term memories of people whose short-term memories are less active or inaccessible, such as individuals with Alzheimer’s disease and severe dementia. Numerous case studies offered further evidence suggesting that music seems to wake up memories and emotions in ways nothing else can.

Incorporating music into the care plan for people facing short-term memory deficits is believed to create a powerful emotional connection to experiences from the happiest parts of their lives. Often care partners report seeing their loved one “light up” with joy in response to certain songs. Many observed their loved one being able to sing along, even remembering every word, or being able to play the song on an instrument they hadn’t played in years.

Here are some ways you might consider utilizing the power of music to improve the lives of someone living with Alzheimer’s:

1. Find music that connects with significant life events or eras of the person’s life before Alzheimer’s.Consider the concerts they attended, favorite artists from their youth, or even songs played at their wedding or other special life events. If you aren’t sure, perhaps asking friends or family members could offer some insight, or perhaps researching artists or composers that were popular during significant stages of the person’s life might help you find songs they will enjoy.
2. Experiment with new music that might have a calming effect on the individual.
   Even music that was not part of the person’s early memories may evoke a positive response, as music can, by its very nature, tend to create feelings of well-being, calm, and even have a healing effect on the nervous system.
3. Decide on the time of day when certain music might be most helpful.
   For many people with Alzheimer’s, playing classical music or old hymns at bedtime can bring much-needed comfort that helps individuals with sleep challenges. For others, listening to upbeat favorites might lift spirits in the morning to get the day started on a positive note. Finding the right music for the right time of day might take some experimentation but may offer a powerful remedy to help a person with memory issues through otherwise difficult periods of time.
4. Carefully pay attention to the person’s reactions.
   When you first try playing music for the individual, watch their reactions closely. Notice any body language or attempts to communicate how the music makes them feel. If you notice any agitation or negative response, be ready to stop the music quickly, as it may be triggering unpleasant memories. Keep track of songs, artists, or genres that elicit a positive response and, if necessary, make a list of songs to avoid if the person does not respond positively to certain music.
5. Keep trying.
   Incorporating music into your care plan may take a bit of trial and error. Still, you will be glad you persisted when you observe just how powerfully music can help a person with Alzheimer’s tap into parts of their memory that are alive and well, even if only for a few moments.

As with all Alzheimer’s treatments, results and reactions can vary widely from person to person, but a growing body of research suggests that music can be a safe and highly effective elixir for the symptoms that often accompany this disease, including anxiety, confusion, fear, and isolation.

As the Gayle Wells Foundation continues to connect with individuals and families affected by early onset Alzheimer’s disease, we invite you to share your experiences with music as part of your care plan so we can continue to learn from one another.

Please feel free to connect with us on the Gayle Wells Foundation Facebook page and/or email us here to share what you have learned about the use of music in your journey as a care partner.

Early onset Alzheimer’s disease strikes people in their 30s, 40s, 50s, and 60s. While the majority of individuals in our country have late onset Alzheimer’s, the number of cases of early onset Alzheimer’s disease is increasing. The Alzheimer’s Association estimates approximately 5% of the Alzheimer’s population has early onset Alzheimer’s which equates to around 250,000 to 300,000.  Some researchers believe the numbers of people with early onset Alzheimer’s disease to be greater than current estimates.

Below are some of the common challenges and impacts experienced. We’ve provided this information in a list format for ease of reading and to encourage others to share with us additional challenges they’ve experienced. While this list may seem overwhelming, these challenges are experienced on a daily basis and need to be recognized.

Difficulty obtaining an accurate diagnosis & treatment by medical professionals

• It can often take more than a year from the time a person first seeks medical attention for his/her symptoms to the time when a diagnosis of early onset Alzheimer’s is made.
• Individuals may be dismissed or misdiagnosed by healthcare professionals because of their young age.
• Symptoms are often attributed to depression, change of life, or stress.
• When a diagnosis of early onset Alzheimer’s is made, there is often little information provided to the individual and family regarding education and support services in the area.

Financial & Employment Issues

• For individuals under the age of 65, they are often still employed at the time symptoms are first noticed.
• They may struggle with usual job tasks, yet the reason for this change may not be understood by the person, the employer, or co-workers.
• Due to a lack of understanding and awareness of early onset Alzheimer’s disease, the individual may be terminated or leave their job voluntarily, and this may happen before a diagnosis has been made.
• The process of applying for Social Security Disability Income (SSDI) is a cumbersome process. The Social Security Administration has added early onset Alzheimer’s disease to its “Compassionate Allowance” list, which in theory is supposed to streamline the approval process. However, we continue to hear from families that their applications are denied.
• With the loss of income, savings and retirement accounts can be quickly depleted, leaving minimal resources to pay for dementia day programs, in-home care, or long-term care facilities.

Impact on the Individual Diagnosed with Early Onset Alzheimer’s Disease

• They often have insight into their condition.
• Feelings of frustration in not being able to continue activities and interests.
• Low self-esteem.
• Desire for purposeful activities that match their level of cognitive function and physical fitness.
• Dealing with the stigma of the disease.
• Frustration with becoming dependent on someone else for basic tasks of daily living.

Impact of Early Onset Alzheimer’s Disease on the Spouse / Partner

• Difficulties with coping.
• Less social support.
• Financial strain.
• Decrease of intimacy and companionship.
• Loss of confidante and best friend.
• Increased stress can be due to additional responsibilities, such as maintaining the marriage / relationship, raising children, household responsibilities, and keeping or finding employment as they may be the sole source of income.
• Spouse / partner may also be caring for children under the age of 18, as well as aging parents.
• Fear of what the future holds.
• Limited time for themselves which can lead to increased health issues.

Impact on Children in the Home Under 18 Years of Age

• Children often take on responsibilities of assisting with care for the parent, household chores, and caring for younger siblings.
• May feel shame and embarrassment regarding their parent’s symptoms.
• Experience anxiety about the stress in their parents’ relationship.
• Fear and grief.
• Loneliness as the ‘healthy’ parent is now focused on their spouse.
• Anger and frustration about caring for their parent.
• Worry and concern about getting early onset Alzheimer’s disease in the future.
• Children often will not disclose they are caring for a parent for fear they will be removed from the home.
• With respect to school, children who are caring for a parent with early onset Alzheimer’s disease may have decreased academic performance, difficulty concentrating, increased absences from school, and withdrawal from extracurricular activities.

Lack of age-appropriate services and programs

• Individuals with early onset Alzheimer’s disease may have recently left their job due to the disease, so they are looking for activities of a “work” nature.
• Shortage of professional / specialist services.
• Inadequate information, programs, and services for racial, ethnic, and cultural populations.
• Challenges finding long-term care placement as facilities are designed for and populated with older adults.
• Some memory care facilities have a minimum age requirement, which prohibits individuals with early onset Alzheimer’s disease that are younger than the age requirement.

End-of-Life

• If an individual is not on Medicare and they don’t have health insurance, end-of-life care options may be limited.
• Some hospice organizations may offer public or charity services, however the information is not readily accessible.
• Undocumented individuals with early onset Alzheimer’s disease may be less likely to seek out health care due to fear of being deported.
• There are individuals with early onset Alzheimer’s disease that die alone. Loved ones may feel that their loved one is “no longer there” and state it’s too hard to visit and be with them.

The Gayle Wells Foundation for Early Onset Alzheimer’s & Care was created to address these challenges and we are actively working to implement education, programs, and services.  If you have additional challenges you wish to share or are interested in becoming part of our community, please contact Laura Sutherland, Founder & Executive Director, at laura@gaylewells.org. Together, we can make a difference in the lives of those impacted by this disease.

By: Scott & Emily Sutherland

Early onset Alzheimer’s disease creates a great deal of emotion in both the individual with the disease and the care partner. When individuals begin to show signs of memory loss, the people closest to them are likely the ones to notice these changes first. For instance, a loved one may repeatedly ask the same question without realizing it has been asked and answered multiple times. Whether these signs and other symptoms are new or they’ve become the norm, it’s a reality unlike anything you’ve ever experienced. Fear, anger, and sadness are just some of the emotions everyone around this disease easily feels. But the power of observation helps us to be less reactive and moves us to a place of learning, care, and greater empathy.

“The two most important research skills are observing and listening. We don’t always see as much as we think we do, and we need to practice looking for information. Unless we are observing closely, we might not notice non-verbal behavior or other cues that tell us the meaning behind what is going on.” (Source: Youth-led Participatory Action Research)

Here are two ways the power of observation can help in navigating early onset Alzheimer’s disease:

1. Gathering Information

Observation opens our eyes and ears to pay attention to what’s happening and how the disease is progressing within the individual, in the home, and in their workplace. This reflection is also helpful for the care partner to observe how they, their family members, and friends interact with the person who has the disease. An effective way to harness all of this information is to write it down in a journal. Journaling can be helpful in many ways, allowing us to sort through all of the emotions that accompany the disease and communicate effectively and purposefully with family, friends, and the medical community as the disease progresses.

2. Care

The greatest priority is to uphold the dignity of the individual with the disease which means we must continue to see them as a person and not the disease. This takes great care and compassion. And yes, it’s natural to become reactive to what we’re seeing happen in our loved one, but the power of observation allows us to practice greater empathy for the journey. By gathering information and processing what is happening around the disease we are better able to care more effectively for ourselves, the individual with the disease, and the family.

Here is an exercise to practice the power of observation. (Source: www.mindtools.com)

1. Test your observation by describing a photograph, or listing everything in the room you’re in right now without looking.
2. Record and consider your observations. Go beyond the things you see. Note the smells and sounds you experience too.

Finally, you are not alone. If you have any questions about early onset Alzheimer’s disease and what you are observing, please contact us by clicking here. We are here to help.

By: Todd Wagoner, LCSW

Care partners sacrifice immeasurable time and energy to provide the necessary structure, health, and quality of life for those living with early onset Alzheimer’s disease. Often the toll your sacrifice is taking on your well-being goes undetected or unaddressed. 

Now more than ever, as the COVID-19 pandemic creates additional challenges for creating meaningful connections, we encourage individuals caring for someone with early onset Alzheimer’s disease to find support for your well-being.

Author, counselor, and teacher, Dr. Barry Jacobs, writes, “The sturdiest, most gung-ho caregivers may disregard the impact of dipping into their own reserves each day until that day, that year later, when the cumulative depletion makes them feel sucked dry as an empty well.”

Self-neglect breeds social isolation when you deny yourself the support needed to provide care.  This is especially true as the pandemic creates increased prolonged isolation for so many people.

Are you experiencing any of these signs of care partner isolation?

• Feeling lonely and withdrawn from family and friends
• Depression, frustration and increased stress
• Less energy and creativity to manage day-to-day care
• Feeling trapped in a seemingly unending and impossible set of circumstances
• Physical symptoms such as high blood pressure, weight gain, back or joint pain
• Feeling overwhelmed due to lack of information about the disease or inability to find available support services

Not recognizing these signs tends to keep care partners from taking actionable steps to find support and increase your capacity. Yet isolation is a prevalent challenge for most people caring for someone with early onset Alzheimer’s.

Reasons care partners feel disconnected from support networks may include:

• Previous social supports may withdraw due to stigma around the disease.
• Care partners may be alone in the care duties without understanding or support from family or friends.
• In the COVID-19 reality, perhaps there is a sense of fear that inviting others’ help might expose you and your loved one to life-threatening illness. 
• Withdrawal from previous activities and lifestyle due to the time required for care responsibilities.
• Lack of social interaction and stimulation from individuals, other than their care recipient, often triggers loneliness.
• Withdrawal to avoid frequently explaining the actions of a loved one to others.

Yet prolonged isolation can deepen feelings of guilt, resentment, and chronic grief, causing withdrawal from the individuals and support services you need most.

Know this: there is hope. There is always hope. Although you cannot remove the impact of early onset Alzheimer’s disease on your loved one, nor can you change the outcome, you can take essential steps to change how you approach home care. Doing so can improve your outlook and overall ability to cope with the demands of caring for your loved one. 

Here are three simple steps for reducing isolation as you support someone with early onset Alzheimer’s disease.

1. Acknowledge feelings of isolation

There is a sense of powerlessness that exists when a care partner feels deprived of much-needed support. Recognizing your need for support opens you up to a greater understanding of what you need. That understanding can then evolve into the belief that you can do something about the isolation you feel. 

2. Share your experience

Seek out opportunities to talk about the challenges you face with friends, family members, or other care partners. Sharing your experiences with others can provide you with much-needed understanding and may help relieve the guilt you may feel for the feelings you experience at times. 

If making connections is difficult, particularly amidst COVID-related restrictions, consider joining online care partner support discussions. Regularly scheduled discussions of this kind are hosted online by the Gayle Wells Foundation. You can find information on those forums below. These online forums offer a powerful exchange of experiences to reassure care partners that you are not alone in these challenges. Often, helpful ideas and coping skills that have worked well for others are also exchanged. 

3. Ask for help

In his book, The Emotional Survival Guide for Caregivers, Dr. Jacobs encourages care partners to reach out to others. In the COVID-19 reality, communication may need to take the form of video calls, phone calls, texts, online forums, or emails. 

Asking friends and family to help with shopping or grocery delivery or getting in-home assistance if you feel safe to do so, may profoundly reduce your sense of isolation.

As care partners carry on the essential work of supporting someone with early onset Alzheimer’s, it is imperative to be vigilant about your physical, mental and emotional well-being, not only for your sake but for the sake of your loved one. 

To learn more about online care partner forums hosted by the Gayle Wells Foundation, click here. We hope to see you there. Together we can provide much-needed awareness, strength, and practical help to address the on-going challenges of caring for someone with early onset Alzheimer’s disease.

Jacobs, Dr. Barry J., The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent, The Guilford Press, 2006.