Young-onset Alzheimer's disease: symptoms, diagnosis and support

Alzheimer's disease is a progressive condition in which nerve cells in the brain are gradually damaged. When symptoms begin before the age of 65 the dementia is described as young-onset, sometimes called early-onset. Alzheimer's Society explains that young-onset dementia is mostly caused by the same diseases that cause dementia in older people, such as Alzheimer's disease or vascular disease, but that a wider range of diseases is involved, so a younger person is much more likely to have a rarer form such as frontotemporal dementia.

Alzheimer's disease remains the single most common type among younger people, affecting around one in three of them. It is a different group of people from those with the more familiar later-life picture: many younger people with dementia have no other serious long-term health conditions, and they are often working, raising families or paying a mortgage at the time of diagnosis.

Alzheimer's Society says younger people are less likely than older people to have memory loss among their first symptoms. They may instead mainly have problems with language, vision or behaviour, and may also have problems with movement, balance and coordination. Younger people are also much more likely to have an unusual form of Alzheimer's disease in which the main early symptoms are difficulties with vision, language, thinking or behaviour rather than memory.

This matters in practice because the symptoms can be mistaken for something else. Alzheimer's Society warns that early symptoms might be put down to far more common causes such as stress, relationship or work difficulties, or the menopause, and that an initial diagnosis such as depression or chronic stress may need to be looked at again if symptoms evolve and steadily get worse.

Because the early picture can be unusual, it is sensible to see a GP if you or someone close to you has symptoms that are persistent, getting worse or interfering with daily tasks, even when memory seems fine.

• Trouble finding words or following conversations.

• Difficulty judging distances or recognising objects, despite normal eye tests.

• Changes in personality, judgement or behaviour noticed by family or colleagues.

• Problems with planning, organising or following a series of steps at work or home.

• Changes in balance, movement or coordination.

Alzheimer's Society says it is often difficult to explain why one person gets dementia earlier than another, and that genetics can play an important role in young-onset dementia. About one in ten younger people with dementia have an inherited form. Genetics are not always involved, though, and in many cases there is no obvious reason or identifiable risk factor.

Dementia in younger people can also result from severe brain damage after an early stroke, traumatic brain injury or heavy alcohol use. Alcohol-related brain damage tends to be diagnosed in people in their 40s and 50s and is more common in men, according to the same source. People with Down's syndrome are more likely to develop dementia when they are younger.

A family history can be worrying for relatives. Alzheimer's Society recognises that people diagnosed young are often concerned that children or siblings may have a higher risk; a GP or memory service can arrange a conversation about genetic counselling where the history suggests an inherited pattern.

Alzheimer's Society says assessment usually starts with a GP, who will do some quick tests and ask how long symptoms have lasted and whether they cause problems in everyday life. If dementia is a possible cause, the GP refers to the local memory service. Some areas have specialist services for younger people, and the GP should refer there when one is available.

The assessment often includes a full history of symptoms and their effects, tests of mental abilities, behaviour and ability to do daily tasks, a full physical examination, and at least one brain scan, often with more specialist scans. A lumbar puncture, which collects fluid around the spine for analysis, may sometimes be part of the process.

Accuracy can take time. Alzheimer's Society says even specialists do not always get it right first time with early symptoms, and that diagnoses tend to become more reliable as symptoms progress. A diagnosis can rule out other conditions and helps people plan ahead.

The NHS says there is currently no cure for Alzheimer's disease, but medicines can temporarily reduce symptoms. Donepezil, galantamine and rivastigmine (acetylcholinesterase inhibitors) can be prescribed for early- to mid-stage disease, normally started by specialists. Common side effects include nausea, vomiting and loss of appetite, which the NHS says usually improve after about 2 weeks. Memantine is used for moderate or severe disease or when the other medicines are not tolerated.

Medicines are only one part of care. The NHS describes cognitive stimulation therapy, cognitive rehabilitation with an occupational therapist, and reminiscence and life story work as treatments that can improve mood and wellbeing. Alzheimer's Society lists community nurses, dementia specialist nurses including Admiral Nurses, occupational therapists and speech and language therapists among the professionals who can help as needs change.

Practical matters usually need attention early: work and benefits, driving, finances, and planning for the future. Talking with the memory service, GP or a dementia support line about these soon after diagnosis can make later decisions easier.

Coming to terms with the diagnosis takes time and there is no right or wrong way to feel. Alzheimer's Society suggests talking to friends, family or a professional, and notes that writing thoughts down is an option if talking feels difficult. Basics such as regular healthy meals, enough fluids, limited alcohol, physical activity, staying in touch with people and things that matter, and enough sleep all help.

Younger people are likely to need different support to older people because of work, family and financial responsibilities. Dementia UK keeps a list of young-onset dementia services, and rare dementia support groups exist for unusual forms. If you regularly feel low, anxious or irritable, tell your GP, as depression and anxiety can be treated.

On the NHS the route runs from GP to memory service, with specialist young-onset services where they exist, and onward care from nurses, therapists and social workers. Because the pattern in younger people is less typical, it is reasonable to ask whether a specialist young-onset or neuropsychiatry service is available locally.

Some people also see a private consultant neurologist or old-age or neuropsychiatrist for a second opinion, brain imaging or cognitive testing. A private assessment can sit alongside NHS care, but ask what tests are planned, who will interpret them, whether results will be shared with your GP and what ongoing follow-up looks like before you start.