Young Onset Dementia: A Guide for Care and Healthcare Staff

Young onset dementia means dementia that develops before the age of 65. It is much less common than dementia in later life, but it affects people at a very different stage of life, often while they are working, raising children or paying a mortgage. Services designed for older people do not always meet these needs. This guide explains what care and healthcare staff should know about young onset dementia and how to support people with it.

It is general information, not clinical advice. Diagnosis and treatment are for specialist services, and support should follow the person's individual care plan.

Why young onset dementia is different

People with young onset dementia are more likely to have a rarer cause, such as frontotemporal dementia, alcohol-related dementia, or a genetic cause. Early symptoms are often not memory loss. Changes in behaviour, personality, language, vision or planning and organising can come first, which means they are easily mistaken for stress, depression or other mental health conditions. Our guides to frontotemporal dementia guide and Lewy body dementia guide explain two of the conditions that can start earlier in life.

Why diagnosis can take so long

NICE guidance on dementia says that people with suspected young onset dementia should be referred to a specialist dementia diagnostic service with access to advanced investigations such as brain imaging, biomarker tests and genetic testing where appropriate. It also stresses that primary care staff should be alert to symptoms in younger people, because they often overlap with psychiatric conditions. Delays can mean that people go months or years without support, and can cause real harm to relationships and employment.

What NICE recommends for support

The NICE recommendations for young onset dementia include:

• age-appropriate services, with activities based on the interests of local younger people with dementia
• services that are accessible to people who also have work, childcare or caring responsibilities
• a comprehensive assessment by a multidisciplinary team, including neurology, psychiatry, psychology and occupational therapy
• specialist advice on matters such as employment, mortgages and other financial obligations, and help with planning ahead
• information and support for the person and their family on how to tell children, employers and friends about the diagnosis
• a single named practitioner to coordinate care
• education, skills training and emotional support for family carers, and access to carer groups and peer support

Everyday needs of younger people

A younger person may be a parent or may support one. They may still be employed, driving or managing a household. Staff should ask about these roles and not assume that the same approach as for an older person will work. Practical support can include help with benefits and employment rights, conversations about driving, and support for children who see their parent change.

Communication and routine

Younger people with dementia often want to be talked to as the adults they are. Use clear, unhurried language, give one instruction at a time and allow time for answers. Keep routines predictable, because changes in environment or staff can add to confusion, and involve the person in decisions about their day wherever possible.

Capacity, consent and planning ahead

People with young onset dementia often have the capacity to make many decisions for a long time, so the aim is to support them to do so. Encourage them to make lasting powers of attorney and record their wishes early on, when they are still able to do so. Our guide to Mental Capacity Act and DoLS training explains how capacity is assessed and how decisions are made when it is lost.

How care staff can help

• Treat people as individuals. Learn about their work, interests and family and include them in the care plan.
• Offer age-appropriate activity. Many people will not want a care home day programme designed for much older residents.
• Support relationships. Involve partners and children and make visits welcoming.
• Look for signs of distress. Behaviour change often reflects unmet need, pain or confusion.
• Challenge stigma. Help colleagues and other residents understand that dementia can affect younger people.
• Plan transitions carefully. A move to residential care can be especially hard for a person in their fifties or early sixties.

Supporting carers and families

Families are often supporting a partner while also parenting, working and managing money. NICE recommends education, skills training and emotional support for carers, and access to peer groups. Ask what the family needs, listen to their experience and make sure they know who is coordinating care.

Frequently asked questions

Is young onset dementia always Alzheimer's disease?

No. Alzheimer's disease is a common cause, but young onset dementia has many possible causes, some of which are rare, so specialist assessment is important.

Why is it often misdiagnosed?

Early symptoms such as personality or behaviour change can look like depression, stress or other mental health conditions.

Can people with young onset dementia keep working?

Some can for a time with adjustments. NICE recommends that people get specialist advice about employment and financial matters.

Where can teams find training?

See the CPD hub for professional development options for care and healthcare teams.

Learnsignal will update this guide as national guidance develops.