Young-onset dementia

What is young-onset dementia?

Young-onset dementia means dementia where symptoms start before the age of 65. It is sometimes called early-onset or working-age dementia.

It is not a separate disease. Any type of dementia can start before 65. But the mix of types is different in younger people.

Alzheimer’s Society says more than 70,800 people in the UK are living with young-onset dementia. Dementia UK says this is about 7.5% of all people with dementia.

Types in younger people

Dementia UK gives these approximate figures for young-onset dementia:

Alzheimer’s Society says younger people are much more likely to have a rarer type of dementia. It also says about one in ten younger people with dementia have an inherited form.

Different early symptoms

In younger people, memory loss is often not the first sign. Alzheimer’s Society says early symptoms may instead include:

• problems with language, such as finding words
• problems with vision, such as reading or judging distances, even with healthy eyes
• changes in behaviour or personality
• problems with movement or coordination

Many younger people with dementia have no other serious health conditions. This can make dementia seem unlikely, both to them and to professionals.

Why diagnosis can take longer

Getting a diagnosis can be slow and frustrating. Dementia UK reports that:

• the average time to diagnosis is 4.4 years for younger people, compared with 2.2 years for people over 65
• people often see between two and five different consultants before diagnosis
• symptoms are often put down to stress, anxiety, depression or the menopause

Dementia UK notes that symptoms of perimenopause and menopause can be similar to some dementia symptoms. Stress, low mood and poor sleep can also affect concentration and memory. These are real and common causes. But if symptoms keep getting worse despite treatment, or do not fit, it is reasonable to go back to the GP and ask for a referral to a specialist memory service or neurology.

Work

Dementia UK says younger people are more likely to still be working when diagnosed.

Your rights

Dementia UK explains that dementia counts as a disability under the Equality Act 2010 in England, Wales and Scotland, and under the Disability Discrimination Act 1995 in Northern Ireland. This gives protection against discrimination.

GOV.UK says employers must make reasonable adjustments so disabled workers are not at a substantial disadvantage. Dementia UK suggests adjustments might include:

• changing tasks or responsibilities
• a quieter workspace
• working from home
• extra rest breaks
• reminders, alerts and other technology
• a workplace buddy
• changing hours

Telling your employer

Dementia UK says most people do not have to tell their employer. But some jobs require it, such as roles involving driving, operating machinery, healthcare or the armed forces. Telling your employer can help you get support and legal protection.

Access to Work

GOV.UK says you can apply to Access to Work if you need extra help at work. It is a government scheme that can pay for practical support. Northern Ireland has its own Access to Work (NI) scheme.

Before leaving a job, get advice about pensions, ill-health retirement and any workplace insurance.

Children and family life

Younger people with dementia may have children or teenagers at home, or be caring for older parents too. Partners may be working, raising a family and becoming a carer all at once.

Things that may help:

• Explain the diagnosis to children honestly, in words that suit their age. Dementia UK has resources on supporting children and teenagers when a parent has young-onset dementia.
• Let the school or college know, so they can offer support.
• Children who help with caring may be young carers. Dementia UK notes they can have a young carer’s assessment, and some GP practices keep a young carers register.
• Worries about inheritance are common. If there is a strong family history, ask the specialist about genetic counselling.

Money and finances

A diagnosis before 65 can have a big impact on money. People may lose earnings while still having a mortgage, rent and dependent children.

Practical steps:

• Benefits: GOV.UK says Personal Independence Payment (PIP) is for people aged 16 or over with a long-term health condition who have difficulty with everyday tasks or getting around. It does not depend on income or savings. New claims are usually made before State Pension age. In Scotland, apply for Adult Disability Payment instead.
• Insurance: check mortgage protection, critical illness and income protection policies.
• Pensions: ask your pension provider about early or ill-health retirement.
• Legal planning: make a Lasting Power of Attorney while you are able to. See legal and money matters.
• Free advice: the Carers UK Helpline can help with benefits questions for carers. See support and helplines.

Driving

You must tell the DVLA if you have dementia (or the DVA in Northern Ireland). A diagnosis does not always mean you have to stop straight away. See living well.

Support for younger people

Many dementia services are designed for older people. It is worth asking specifically for young-onset support.

• Young Dementia Network: an online community run by Dementia UK for people with young-onset dementia, their families and professionals.
• Dementia UK Admiral Nurses: specialist dementia nurses on 0800 888 6678.
• Alzheimer’s Society Dementia Support Line: 0333 150 3456.
• Local groups: Dementia UK has a searchable list of young-onset groups and services across the UK.

Partners and family members often carry a heavy load. See carers’ wellbeing and support and helplines.