Dementia

The Silent Side Effect Among Childhood Cancer Survivors

Dementia is a symptom of possible declining brain function. It is not a disease per se, but rather a sign or clue that something else is happening under the surface of the mind. Dementia can occur within a variety of underlying causes, and among several different age groups. The most common cancers among children and early adulthood consist of brain tumors/cancers, leukemia, and spinal cancers. Over the past half-century, there has been an increased survival rate in pediatric cancer patients. Cancer symptoms among children between 1-4 years old have now been suppressed for another year, including a survival rate of about 90%, due to huge treatment developments. The most common treatments are radiation therapy, chemotherapy and surgery, which, unfortunately, comes with potential longstanding side effects.

Multisystem Side Effects of Chemotherapy Treatment in Children

Dementia is diagnosed by a specialized physician or a neurologist that uses specific testing of your child’s cognition (brain function). The following is a list (not all inclusive) of possible signs your child may be suffering with post-chemo dementia:

• Slight changes in mood/personality, sleep cycles, fatigue
• Depression, isolation, decline in self-care, anxiety, shame
• Uncertainty, loss of focus, and lastly forgetfulness

If you recognize one or more of these health changes listed above in your child, please report this to their oncologist as soon as possible.

Pulling out the Root Cause of Childhood Dementia

There are many diseases that may mimic these symptoms, and it’s best to catch these subtle changes early, so a physician can assess your child using scientific, reliable testing to eliminate other possible diagnoses. Childhood cancer survivors may even show signs of dementia within months to a couple of years upon completion of chemotherapy (on top of the 50% rate of cognitive decline that accompanies just the childhood pediatric cancer diagnoses alone).

In addition, there are many other helpful tests to confirm or rule out dementia. Your child may need to give blood and urine samples, undergo brain scans, and neurological testing to determine the root cause of dementia. These tests are both quick, yet a little uncomfortable. It may help to bring a comfort item along for these appointments. For example, a child with dementia may want to hug their favorite teddy bear, while my mother-in-law found comfort in her doll/favorite stuffed animal.

Treatment

Medical professionals almost always begin with the least intrusive, non-medicated treatments first. Both physicians and nurses gather health histories and current symptoms to create a unique treatment care plan tailored for your child. These care plans are never set in stone, only to promote achievable health goals, or amended goals/therapies throughout the disease process, per your child’s abilities. Your physician and/or social worker may help you find resources you can rely on for extra support, like The Sassy Carmen Foundation. This foundation greatly helps not only the children’s mental health, but the parent’s as well, possibly reducing high risk burn out.

Incurable Dementia

Unfortunately, not all forms of dementia are 100% curable. However, as more research has been done, scientists have discovered that certain behaviors like pacing, agitation, and aggression are linked to children communicating their pain, fear, stress, thirst or hunger. My mother-in-law became agitated during a meal when I disposed of her trash. So, I allowed her to keep it, no big deal, plus, it gave her a sense of control and independence. Many times, you will realize arguing with a child who suffers with dementia is just exhausting and pointless.

Coping with Behaviors from Dementia

Pick and choose your battles wisely, especially when it comes to child safety. Step in and redirect them from using scalding hot water to wash hands or calmly direct them away from trying to escape out the front door (if within reach). Distraction is your best friend, change the subject, activity, even the environment, if possible, to prevent/lessen agitative behaviors.

Reorientation

It is key in children/adolescents who have been diagnosed with dementia, to follow a consistent daily routine as much as possible. Remind them of the current day, month, year, and place. Sudden changes in environment like a surprise visitor, doctor’s appointment or even loud television/multiple conversations can frazzle them. If these non-invasive interventions aren’t working, medication may be prescribed by your child’s doctor. Healthcare professionals should explain both the positive and negative effects of the medication, and how much to take and how often.

Caregiver Helpful Pointers

It’s one thing to know about dementia, yet an entirely different perspective when you are caring for a child who suffers from it. Watching my mom-in-law progress through the stages of Alzheimer’s (another form of dementia) has been devastating for my family. Her two sons especially, felt uneasy at times having to provide personal hygiene care tasks like bathing, and taking her to the bathroom and dressing her. But interestingly, once they both understood the cause of her behavior wasn’t defining who she was as a person, caring for her became much more manageable.

No one reacts perfectly all the time loving someone with dementia, and this is absolutely normal. Please don’t be self-critical when, not if, you overreact as a result of your child’s accidental misbehavior. My family and I apologized several times for our swift over-reactions to my unwitting Mom-in-law. She accepted our apologies, somehow aware that we were trying our best to care for her.

Safely Prepared Proxy

I cannot stress enough the importance of educating yourself as the strongest health advocate for your child with dementia, and other family members/caregivers about your child’s dementia and specific triggers that may upset them. Prepare and plan ahead of time for each stage of the disease, keep a log with notes about any changes in your child’s behavior.  Due to under-researched studies, taking notes on behalf of your child is helpful for not only your child’s well-being, but so the physician has a more educated and focused treatment plan to work with (that may help other children/parents in the future). Every childhood cancer patient is different genetically, and emotionally, no two are ever the same. In general, you must be sure your child is safely cared for in the early stages of dementia, here are some pointers to assist:

• Turn down the hot water heater temperature, test water temperature before use
• Install keyed-only locks on interior doors to prevent a child from unknowingly running away/becoming disoriented in an unsafe place
• Install bed alarms to prevent potential night time falls
• Unplug your oven/microwave or turn off gas to the stovetop (if within your child’s reach), install/check fire alarms and CO alarms
• Placement of safety gates as needed to prevent potential falls downstairs
• Utilize a Phone app with voice enabled emergency calls
• Pillboxes/cleaners/household chemicals hidden and locked out of reach

Educate Yourself, Caregivers, and School Faculty Prior to Your Child’s Return to School

Ask your child’s doctor for educational materials you can take home for your review, and forward them to your child’s school/teacher/counselor; initiating adaptive learning techniques in a therapeutic, all-inclusive setting for children having dementia as a result of chemotherapy. Don’t be shy to ask questions, and bring a notebook with you to appointments, or ask for visit summary notes afterwards. It’s too tiresome remembering every detail the doctor recommends.

Respite Care

When you need a break, find helpful, trusted resources prior to you becoming burned out. Three compassionate ladies, all affected by the devastation of losing a loved one as a result of cancer, built the following foundation back in 2020 to assist both families and children who suffer from the many symptoms and side effects associated with childhood cancer. This foundation thrives on donations to promote supportive activities including: creating family memorabilia, transport relief, gas stipends, and even helps families save quality time spent with their loved ones, and lastly by lessening the burden of extra household duties. These duties include, but are not limited to:

• Preparing super healthy meals of your choice to boost your child’s immune system,
• Delivering fresh food to your door, and
• Purchasing sanitizing toiletries/household cleaning products

You are not Alone, Support is Here at The Sassy Carmen Foundation

You must, must, must carve out time for self-care. There are so many helpful programs and resources at the Sassy Carmen Foundation that could give you a much-needed reprieve along you and your child’s difficult journey. Please know, you are never alone when it comes to loving your child through this debilitating, unpredictable illness.

Sassy Support

The Sassy Carmen Foundation outreaches to both children and families who are wholistically suffering from cancer and its intrusive effects. While this Foundation specializes in childhood cancer patients and parental support, they also understand the importance of self-care, family advocacy and empowered parental education. The supportive community programs found here foster respite care (based on personal experiences), catering to your unique individual and family needs both at home and in your community.

References:

1.https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/dementia-early-signs

2.https://memory.ucsf.edu/treatments-stays/medications-dementia

3.https://www.dementia.org.au/about-dementia/childhood-dementia#diagnosing-childhood-dementia

4.https://pmc.ncbi.nlm.nih.gov/articles/PMC10444646/#:~:text=The%20presence%20of%20cognitive%20impairment,facets%20of%20executive%20functioning%2C%20such