Living With Childhood Dementia: Coping Strategies And Treatment Options

Childhood dementia disorders tend to be extremely rare conditions that may impact a child’s overall memory and nervous system function. These conditions may be linked to progressive brain damage caused by rare genetic disorders, which may negatively impact both quality of life and life expectancy. Although rare, childhood dementia can be highly impactful, and the estimated premature deaths due to childhood dementia are typically similar to those of childhood cancer. 

Like adult dementia, childhood dementia symptoms and memory loss may be improved through treatment and lifestyle changes. Treatment options may involve working with a team of mental and medical health professionals who can prescribe medication and provide therapy. Parents of children with dementia may benefit from speaking with therapists who can help them cope with this challenging situation.  

As a parent, coping with childhood dementia can be challenging

Connecting with a therapist can help

Understanding the causes and risk factors of childhood dementia

A variety of genetic disorders may cause childhood dementia. Although there is typically a genetic link, the exact causes of childhood dementia are currently unknown. According to the Childhood Dementia Initiative, several risk factors or causes may contribute to its development:

• Genetic mutations: Inherited genetic mutations can increase the risk of childhood dementia. Mutations in specific genes, such as those associated with conditions like Niemann-Pick disease, neuronal ceroid lipofuscinoses (NCLs, also called Batten disease), and other rare disorders, can lead to neurodegeneration.
• Metabolic disorders: Certain metabolic disorders, such as Tay-Sachs disease, can lead to the accumulation of toxic substances in the brain, resulting in neurodegeneration.
• Infections: Infections of the central nervous system, such as encephalitis or meningitis, can sometimes trigger inflammatory responses that contribute to neurodegeneration.
• Autoimmune disorders: Some autoimmune disorders can target the nervous system, leading to neurodegeneration. For example, autoimmune encephalitis can cause inflammation in the brain.
• Environmental factors: Exposure to certain environmental toxins or substances, such as lead, can increase the risk of neurodegenerative diseases in children.
• Brain trauma: Severe head injuries or traumatic brain injuries can sometimes lead to neurodegenerative changes in the brain over time.

It may be important to note that childhood dementia refers to a complex and varied group of disorders, and the specific symptoms and progression can vary widely depending on the underlying cause. Early diagnosis and appropriate management can be crucial in providing the best possible care and support for affected children and their families.

Symptoms and diagnosis of dementia in children

Diagnosing childhood dementia can be challenging due to the rarity of these conditions and the overlap of symptoms with other disorders. A comprehensive evaluation by a team of specialists, including pediatric neurologists, geneticists, and neuropsychologists, is often needed. The diagnostic process may include the following steps:  

• Discussion of medical and physical health history: The healthcare provider may gather information about the child's symptoms, medical history, and family history of neurological disorders. A physical examination may also be conducted at this time.
• Neurological examination: A neurological examination can assess the child's motor skills, reflexes, coordination, and sensory function.
• Genetic testing: Genetic testing may be recommended to identify any underlying genetic mutations that could be causing dementia symptoms.
• Brain imaging: Imaging tests like MRI or CT scans may be used to assess the structure and function of the brain and to look for any abnormalities.
• Blood and urine tests: These tests may be done to check for abnormalities in metabolic function or to rule out other possible causes of symptoms.

Individuals with both adult and childhood dementia tend to have shorter lifespans than those without dementia. With that said, early detection and treatment may improve symptoms and reduce the overall impact of dementia. Both the child and their family members are likely to be heavily impacted by a childhood dementia diagnosis, which is why it can be beneficial to develop a solid foundation of coping strategies for the family.

Coping strategies for families living with childhood dementia

The group challenges of childhood dementia can be experienced by the child, their parents, siblings, and other family members. Managing negative feelings and thought patterns, as well as any depressive or anxiety disorders that develop, can be a vital part of creating and maintaining a supportive environment. It can be crucial for all family members to develop and maintain a strong emotional support network of friends, family, support groups, and licensed mental health professionals.

It can be challenging for family members and caregivers to manage all that goes into taking care of a child with dementia while also working and providing for a family. Developing a set of routines and a daily plan for managing patient care can go a long way in reducing stress and anxiety for families managing childhood dementia. Working with a mental health professional can be a good place to start when developing coping strategies and techniques to manage the responsibilities of daily life.

As a parent, coping with childhood dementia can be challenging

Connecting with a therapist can help

Treatment options for childhood dementia

Treating childhood dementia is typically a multidimensional process that may involve a combination of medication, physical therapies, and psychotherapies. Depending on the cause and symptoms, medication may be an option, particularly for childhood dementia that stems from metabolism-based conditions. As with other prescription medications, it can be important to establish open communication between the patient and the doctor regarding side effects and overall impacts. A doctor can monitor the effectiveness of medications over time and adjust the dosage as needed. 

Physical therapy interventions

Individuals with childhood dementia may also benefit from a variety of physical therapy interventions. Working with an occupational therapist or speech therapist can help them maintain fine motor movements as well as speaking abilities, both of which may be impacted by dementia. Physical therapy can help a child with dementia improve muscle coordination, manage pain, and maintain mobility. 

Benefits of therapy

Parents may benefit from adding regular therapy sessions to their self-care routines. It can be challenging to manage the stress and difficult emotions that can be associated with having a child with dementia on one’s own. However, leaving the house to go to therapy may not always be feasible. Online therapy can provide an available alternative to in-person care by empowering parents to attend sessions from the convenience of home. Often, sessions can be scheduled outside of traditional office hours as well.

Research suggests that online therapy can be helpful for caretakers of individuals with dementia. For example, a 2023 study stated, “Internet-based psychoeducational programs can improve some aspects of caregivers’ mental health and emotional well-being.”