Early signs of young-onset dementia: what to look for and who to see

Dementia UK describes dementia as young onset when symptoms develop before the age of 65. It notes that the condition is sometimes called early-onset dementia, but that this term can be confused with dementia that is in its early stages, so it prefers young-onset dementia, and that working-age dementia, another term, can also cause confusion because retirement age varies. The two phrases mean the same thing in everyday use, and this page covers both.

It is much less common than dementia in later life, but not rare. Dementia UK estimates that over 70,000 people in the UK live with young-onset dementia. The Alzheimer’s Society points out that because it is less common, health professionals may not have much experience of seeing the symptoms in a younger person, which is one reason diagnosis can be delayed.

Symptoms differ from person to person depending on the type of dementia and the part of the brain affected. Dementia UK’s list of the changes more commonly seen early on in younger people is organised under five headings.

People commonly associate dementia with forgetfulness, and memory problems do occur. Dementia UK says, however, that these typically develop later in younger people than in older people with dementia, and that changes may not be obvious early on. This matters because a person who is still performing well on a short memory test can nevertheless have dementia; Dementia UK specifically notes that some people with young-onset dementia may perform well in a brief cognitive test.

Other symptoms that may come first include difficulties with concentration, planning and organising, understanding time and place, and depression or anxiety. Because many of these also occur with stress, burnout, depression and the menopause, it is the pattern, persistence and gradual worsening that raise concern.

Dementia UK lists the most common forms in younger people as Alzheimer’s disease, which accounts for about a third of young-onset cases, vascular dementia, frontotemporal dementia, dementia with Lewy bodies and alcohol-related brain damage. Around 20% of younger people have a rarer form, such as posterior cortical atrophy or primary progressive aphasia, and other conditions such as Parkinson’s and Huntington’s disease can lead to dementia.

Younger people are more likely to have an inherited form. Dementia UK says familial frontotemporal dementia accounts for 30 to 40% of all frontotemporal dementia, and that if a parent has a genetic mutation linked to dementia, each child has a 50% chance of developing the condition; most cases of dementia are not inherited. Risk factors listed include smoking, obesity, diabetes, high blood pressure, high cholesterol, physical inactivity, untreated depression, social isolation, a previous severe head injury and having a learning disability.

Dementia UK advises seeing a GP as soon as possible, keeping a diary of symptoms and taking a family member or friend to the appointment. The GP should ask about symptoms and family history, carry out a physical examination, arrange blood tests and may arrange a brain scan. This is to identify other conditions that can look like dementia, which it lists as depression, anxiety or stress, relationship issues, underactive thyroid, vitamin B12 deficiency, perimenopause and menopause, delirium from a medical condition such as infection, and medication side effects.

If these have been ruled out or treated, the GP should refer for a detailed assessment with a memory service, and the Alzheimer’s Society says some areas have specialist services for younger people which the GP should use if available. Assessment often includes a full history, tests of mental abilities, physical examination and at least one brain scan, sometimes with more specialist scans or a lumbar puncture. Because health professionals often lack specialist knowledge, a person may see several specialists before a diagnosis is made.

The Alzheimer’s Society notes that an initial diagnosis of something else, such as depression or chronic stress, may need to be looked at again if symptoms evolve and steadily worsen. If diagnosis is severely delayed, the person may not get the support they need.

Dementia UK states that medicines such as donepezil, rivastigmine, galantamine and memantine are usually prescribed for Alzheimer’s disease and may sometimes be used in mixed dementia, dementia with Lewy bodies and Parkinson’s dementia. They do not cure dementia or stop it progressing but may help with symptoms. Cognitive Stimulation Therapy, counselling, speech and language therapy, occupational therapy and physiotherapy may also be offered.

Younger people often face different issues, such as employment, a mortgage, dependent children and caring responsibilities, as Dementia UK notes. Ask your GP or memory service about workplace adjustments, benefits and social care assessment. The Admiral Nurse Dementia Helpline run by Dementia UK offers specialist advice. Some people choose a private neurology or memory clinic for faster assessment, but ongoing care and support normally continue through NHS and local services.