Living with NBIA & Dementia

Living with NBIA-related dementia presents daily challenges that affect both the child and their family. Changes in movement, memory, and behavior can make once-familiar routines more difficult, while parents and siblings often experience feelings of stress, grief, and uncertainty. At the same time, families also discover resilience, compassion, and new ways to connect with their loved one.

This journey is not about “fixing” every problem but about finding balance, creating supportive environments, and celebrating moments of joy, no matter how small. With the right coping strategies, medical guidance, and emotional support, families can maintain a sense of stability while ensuringnthat the child continues to feel valued and included.

The following sections share practical advice, encouragement, and resources to help families cope with daily life, understand symptoms as they progress, and maintain a sense of normalcy despite the challenges of NBIA dementia.

Daily Life & Coping

Coping with NBIA-related dementia or other forms of Childhood Dementia requires patience, creativity, and flexibility. Every family develops its own approach, but a few guiding principles can make everyday life less overwhelming and more rewarding.

Understanding and Accepting Changes

Symptoms may gradually affect memory, mood, communication, and movement. Acceptance does not mean giving up hope-it means adjusting expectations to focus on abilities that remain. This mindset helps families reduce frustration, appreciate small milestones, and celebrate daily victories.

Developing Coping Strategies

Identify challenges-such as meals, dressing, transitions between activities, or school routines-that cause the most stress.
Prioritize well-being and joy rather than trying to control every detail or prevent every difficulty.
Break large tasks into smaller, manageable steps to make progress visible and reduce overwhelm.
Use visual aids, schedules, or checklists to help your child or young adult follow routines more independently.

Coping is not about perfection; it is about balance. Seeking help from relatives, friends, care professionals, or community organizations lightens the load and prevents caregiver burnout.

Creating Stable Routines

Predictability provides reassurance and helps children with NBIA or Childhood Dementia feel secure. Simple, consistent routines-like regular mealtimes, morning rituals, therapy sessions, or calming bedtime activities-reduce stress and encourage participation in family life. Flexibility remains important, but structure gives comfort and stability.

Morning rituals: brushing teeth, getting dressed, and breakfast at consistent times.
Regular mealtimes: help maintain nutrition and reduce irritability.
Evening calming routines: reading, listening to music, or quiet reflection before bed.

Caregiver Well-being

Families often focus so intensely on the child’s needs that they neglect their own health. Self-care is not selfish-it ensures caregivers have the strength to continue supporting their loved ones. Even short breaks, regular checkups, physical activity, and connecting with other families in similar situations make a big difference.

Take brief rest periods during the day or enlist support for respite care.
Set realistic expectations-some days will be harder than others.
Participate in support networks, online communities, or parent groups for guidance and encouragement.
Maintain personal health routines, including exercise, nutrition, and social interactions.

Symptoms & Progression

Dementia associated with NBIA or other forms of Childhood Dementia affects each child differently. Symptoms may begin subtly-changes in memory, learning, motor skills, or behavior-and progress over time. Understanding these patterns helps families respond with compassion and plan effectively for care and support.

Early Symptoms

In the initial stages, families may notice small changes that signal the start of cognitive or physical challenges:

Difficulty focusing or remembering recent events.
Mild changes in mood, such as irritability or frustration.
Subtle motor issues, including stiffness, clumsiness, or slower coordination.
Occasional confusion with familiar routines or tasks.

Recognizing early signs allows families to seek medical guidance, implement support strategies, and adjust daily routines to reduce stress.

Progression Over Time

As dementia advances, symptoms may become more noticeable and complex. Children and young adults may experience:

Increased memory challenges, particularly with new information or recent events.
Difficulty speaking, understanding instructions, or expressing needs.
Changes in mood, including anxiety, withdrawal, or emotional outbursts.
Loss of mobility or greater reliance on assistive devices like wheelchairs.
Challenges with daily activities, requiring additional support or supervision.

Each child’s journey is unique, but patience, empathy, and consistent care remain crucial throughout the progression.

Emotional and Behavioral Changes

Dementia can affect emotions and behavior in addition to physical and cognitive skills. Children may experience frustration when unable to communicate, while siblings and parents may feel sadness or anxiety. Families benefit from:

Open communication about feelings and challenges.
Access to counseling, therapy, or support groups.
Strategies to redirect behaviors gently and provide reassurance.

Planning for the Future

While the progression of NBIA or Childhood Dementia can feel overwhelming, proactive planning helps reduce uncertainty. Families are encouraged to:

Work closely with healthcare teams to adjust care plans and therapies as needs evolve.
Explore adaptive tools and technologies that support independence.
Prepare emotionally and practically for increased care requirements.
Utilize support networks for guidance, practical advice, and shared experiences.

Despite challenges, many families find moments of connection, joy, and resilience. Awareness, preparation, and support empower families to navigate each stage with compassion and care.

Maintaining Normalcy

Living with NBIA or other forms of Childhood Dementia can significantly change daily routines, but families can still nurture a sense of normalcy. Consistent routines, social connections, and joyful experiences provide comfort and stability for children, young adults, and their families, even in the face of progressive symptoms.

Keeping Routines Familiar

Predictability helps reduce stress and confusion. Families can focus on maintaining daily rhythms while adapting as needed for medical or cognitive changes:

Follow regular meal, therapy, and sleep schedules whenever possible.
Keep school or learning activities on a consistent routine, adapted for the child’s abilities.
Use visual cues, calendars, or charts to support understanding of the day.

Consistency fosters a sense of security, helping children and young adults feel more confident and calm.

Supporting Social Connections

Friendships and community engagement remain vital for emotional well-being, even as symptoms progress:

Encourage participation in adapted school, group, or therapy activities.
Arrange short visits with friends or family to prevent fatigue.
Use technology, like video calls or messaging, to stay connected when in-person visits are challenging.

Creating Joyful Moments

Maintaining normalcy means focusing on shared joy and meaningful experiences:

Engage in creative activities, such as music, art, or storytelling, tailored to the child’s interests and abilities.
Read familiar books or listen to favorite songs to spark recognition and comfort.
Celebrate achievements and milestones, however small, to create positive memories.

Balancing Care and Independence

Children with NBIA or Childhood Dementia may need increasing assistance, but promoting independence where possible supports self-esteem:

Offer choices for daily activities, meals, or clothing instead of making all decisions.
Encourage participation in manageable household tasks to provide a sense of purpose.
Acknowledge accomplishments and provide positive reinforcement to strengthen confidence.

Caring for the Whole Family

Maintaining normalcy also involves supporting siblings, parents, and caregivers. Shared family rituals, meals, and quality time help ensure everyone feels included and valued.

Ultimately, normalcy is about focusing on connection, love, and everyday joys. Even as NBIA or Childhood Dementia changes life, families can continue to build meaningful moments together.