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Childhood Dementia Disability Snapshot

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Childhood Dementia Disability

Snapshot

SGP KP Publishing Exported on 2026-06-17

Table of Contents

Overview and Scope … page number (not provided)

Peak Body Consulted … page number (not provided)

Section Heading … page number (not provided)

What Is Childhood Dementia?

… page numbers not provided in original text, but likely follows logically from previous sections.

Presenting Impairments And Potential Functional Impacts

… page numbers follow similarly for this section as above…

How is Childhood Dementia Diagnosed?

… continues following similar structure:

Enabling Social and Economic Participation

… continuing same format,

Families and Carers

… etc.,

How can I tailor a meeting to suit participant with childhood dementia?

… followed up next logical section,

What people With Childhood Dementia want you To Remember

… last section before helpful links,

Overview and Scope

The Disability Snapshots provide basic details on childhood dementia (CD) aimed at helping you communicate clearly during meetings where participants set personal objectives.

Every case differs as do individuals themselves; everyone’s needs vary significantly which impacts how plans are made together in these sessions. The content here serves solely to inform NDIA employees or associated parties but should not be shared externally.

#What\s Is \Childhood\Dementia?

Childhood dementia (CD) is a group of more than 100 genetic neurodegenerative conditions each characterised global cognitive decline loss previously acquired skills physical behavioural psychological symptoms that invariably deteriorate with time.

  • The age onset symptoms trajectory expectancy vary significantly between >100 CD conditions even within same condition depending subtype specific gene mutations. For example first symptoms may appear during early infancy progress rapidly death few years contrast other CD conditions typically present adolescence slowly occurring third fourth decade. Diagnosis CDs often difficult delayed given non-specificity initial presenting symptoms developmental delay behavioral changes seizures clumsiness First symptoms CD usually follow period otherwise healthy childhood development may initially slow or plateaued progression milestones Over this continues progressive decline ultimately leading to lost previous skills increased cognition impairment concomitant continual increase support needs activities daily life. The impairments associated degenerative, progressive and permanent in nature CDs medically complex high increasing frequently involving multiple organs systems Functional capacity substantially reduced across all areas including mobility motor skills communication social interactions self-management care learning This creates scenarios requiring multidisciplinary specialist individually-tailored intensive therapies optimise participant quality clinical outcomes Currently fewer <5% CD have approved disease-modifying treatment as such management approaches remain focused symptom maintenance existing function maximising quality supporting participation activity living possible.

Presenting Impairments and Potential Functional Impacts

The table below describes many of the presenting impairments seen across the spectrum of childhood dementia conditions. It is important to note that CD (childhood dementia) disorders can be highly variable - ot all impairments will be present in all conditions, an may appear at different disease stages and vary severity each CD condition.

Childhood Dementia Disability Snapshot

SGP KP Publishing - FOI 25/26-3216

| Physical | • Typical early motor development such as crawling and walking before motor skills start to decline
• Increased trips and falls due to loss gross motor skill balance difficulties Loss core strength trunk control This can progress difficulty transfers gait independent sitting
walking Difficulties self feeding grasp other fine motor activities Difficulty speech breathing or swallowing Changes in urinary bowel continence Movement disorders muscle spasms spasticity dyskinesia dystonia weakness abnormal tone | | Psychosocial | • Emotional regulation that present irritability verbal physical aggression withdrawal hyperactivity Uncooperative disruptive behaviours Loss communication (speech language Distress fearful anxious behaviour distress Hallucinations psychosis |

#How(s) Is Childhood (Dementia) Diagnosed?

  • The conditions that cause CD are typically diagnosed via genetic and biochemical testing \((on blood, saliva or urine samples). Depending on the first presenting\nsymptoms, the diagnosing physician may either: paediatrician, neuropathologist, epiloptologist, ophthalmologist or medical genetist. Lengthy delays between symptom onset and diagnosis are common in many cases with CD conditions; some may take several years to diagnose.
  • Children who have entered NDIS based changes observed prior their functional skills or other symptoms observed before being misdiagnosis commonly Autism Attention-Deficit Hyperactivity Disorder (ADHD) or Global Developmental Delay A review child’s support needs should be considered once a formal childhood dementia has been provided.

FOI 25/26-3216

SGP KP Publishing - Childhood Dementia Disability Snapshot

Section: Enabling Social And Economic Participation

  • Supports that build or maintain capacity may assist participants who have CD-related disabilities (physical/cognitive/sensory) so they actively take part fully within society as these conditions are complex.
  • Therapy support is needed at each stage for individuals with progressive diseases; it helps them stay mobile, use physical skills well, interact socially effectively while managing self-care tasks independently throughout all phases until community access becomes possible again after recovery periods if any occur later on down this path over time;
  • Health supports related to disability can help manage various aspects across different stages in life which enables people living therewith meaningfully engage everyday activities.

#6 Families and Carers

  • Due to possible delay between symptom onset formal diagnosis families enter NDIS after having provided significantly more care than would typically require similar aged child it important give opportunity explain both type extent they provide.

It keep mind support needs individual CD will continue change these changes may even rapid unpredictable likely extra help do everyday things compared children same age consider this assess need core supports including overnight supports example where associated sleep disturbance nightbehaviours concerned ensure family member has time step out carer role enjoy activity participants appropriately ask participant family prioritize goal.

How can I tailor a meeting to suit a participant with

Childhood Dementia?

  • Language and terminology - ‘Person first’ language should be used to describe childhood dementia. For example: saying “a person living with childhood dementia [or specific condition]” or using terms like child disability instead progressive say has changing care needs. It’s important keep mind due progress nature conditions causing childhood dementias, person will experience changes impairments resulting altered functional abilities over course plan result need therapeutic supports core assistive technology differ planning consider current future support needs during life this plan Holistic anticipatory approach best practice when planning participants having childhood dementia essential that enables pre-emptively timely access sufficient supports for duration reduce re-assessment avoid interruptions in fluency ensures participants families flexible without delay as their support needs invariably change over time Families individuals living childhood dementia may find confronting asked considering childrens future support needs personal home modifications mobility communication aids carefully consider how best sensitive planning conversations regarding predicted future support including participant family preference occur It is also important whether benefit from behaviour support related health such seizure continence consumables Support Coordination beneficial too as care needs change often navigating multiple providers services Due disabilities the participant not able participate at age-appropriate level Some key suggestions include:— Before taking place meeting ask what specific supports needed by both participant Family order take part meeting Be mindful of unaware diagnosis full extent condition prognosis therefore inappropriate entire meet limit capacity involved Provide information questions things discussed ahead Always communicate engage directly participant speak respectfully appropriate unless family carers indicate more suitable way to communicate In addition cognitive challenges loss vision hearing impact ability Communicate Allow additional response where needed
  • Consider arranging a second planning meeting to ensure all elements are covered, noting that while dementia primarily affects the brain, this may impact the control and function of other parts of the body and the participant may have care needs relating to a range of impairments.

#What people with Childhood Dementia want you to remember

  • Due to the variable way Childhood Dementia conditions can affect individuals, the can be ‘expert’ experts’ in understanding their child and their needs.
  • Living with a amiliy member who has Childhood Dementia has profound far-reaching impact entire family unit Given significant intensive nature individual’s needs holistic approach planning should take account wellbeing supports whole family unit . -Families hold hope timely appropriate support participants maintain abilities quality life possible giving them preciouos moments beyond mere survial for some this support may also place participants strong positon benifit advance medicin technolgy neare futur.

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