Young-onset dementia

What young-onset dementia is

Young-onset dementia (sometimes early-onset) is the umbrella term for any dementia beginning before age 65. It accounts for around 5 to 6 per cent of dementia in the UK, equating to approximately 70,000 people. Onset can be as early as the thirties; the average age of diagnosis is in the late fifties.

The common causes

• Early-Onset Alzheimer's Disease: around 30 per cent of young-onset cases. Often with atypical presentations (visuospatial, language, executive).
• Frontotemporal Dementia: around 16 per cent. Presenting with behavioural change or language difficulty.
• Vascular Dementia: around 15 per cent. Following stroke or chronic Small Vessel Disease.
• Dementia with Lewy Bodies: around 5 per cent.
• Other causes: alcohol-related, post-traumatic, HIV, Huntington's, prion disease, multiple sclerosis, and other neurological diseases.

Why diagnosis is often delayed

Young-onset dementia is frequently missed initially because:

• Clinicians may not think of dementia in someone under 60;
• The presentation is often atypical (behavioural, language, visuospatial) rather than classic memory loss;
• Symptoms may be attributed to stress, depression or work pressure;
• Specialist young-onset services are not available in every region.

Average time from symptom onset to diagnosis is 4 years in young-onset dementia, compared with 2 years in late-onset. The implications are significant: delayed diagnosis means delayed access to treatment and support, and family relationships can suffer in the meantime.

The diagnostic process

Standard memory clinic work-up applies, with a lower threshold for advanced investigations:

• Formal neuropsychometric assessment to characterise atypical patterns;
• Magnetic Resonance Imaging with attention to focal, asymmetric or lobar patterns;
• FDG-PET for atypical presentations;
• Lumbar Puncture for Cerebrospinal Fluid biomarkers;
• Genetic testing where there is a family history.

The practical differences

Work and income

Young-onset dementia typically affects people still in employment, often with dependent children and significant financial commitments. Considerations include:

• Equality Act 2010 protection and reasonable adjustments;
• Critical illness cover and income protection insurance (check existing policies);
• Pension early-release options on ill-health grounds;
• Mortgage protection where relevant.

Family

Telling adolescent or young adult children, managing the family role, supporting a partner whose life trajectory is also affected. See children and grandchildren and telling family and friends.

Services

Conventional dementia services are often configured around older adults. Many areas have specific young-onset services through the NHS or through the Alzheimer's Society; Young Dementia Network (now part of Dementia UK) is a national resource specifically for younger people. The Rare Dementia Support service is helpful for atypical or rarer subtypes.

Driving and DVLA

Same rules apply; see driving and the DVLA.

Treatment

Treatment follows the subtype. Cholinesterase Inhibitors for Alzheimer's Disease, vascular risk reduction for Vascular Dementia, SSRIs for Frontotemporal Dementia behavioural symptoms. Younger adults are more likely to be eligible for clinical trials.

Course

Trajectories vary by subtype. Frontotemporal Dementia and Frontotemporal Dementia with Motor Neuron Disease often progress more rapidly than late-onset Alzheimer's. Vascular Dementia can be stabilised by aggressive risk reduction.

Where to find specialist support

• Dementia UK Young Dementia Network: national support service for younger people and their families;
• Alzheimer's Society Young-Onset Service: regional services and support;
• Rare Dementia Support: for atypical or rarer subtypes;
• NHS young-onset clinics: in some regions including the Cognitive Disorders Clinic at the Royal Free, Salford and others;
• The Dementia Service: virtual private memory clinic with rapid access to assessment and onward investigation.