Young-onset dementia

3. Diagnosis

Getting an accurate diagnosis is important but can take longer for a younger person. This delay is due in part to a lack of awareness that dementia can affect younger people. Medical professionals such as GPs often misdiagnose younger people as being depressed or anxious, experiencing relationship difficulties or suffering from the effects of stress. For women, symptoms may also be put down to the start of the menopause.

The delay in diagnosis is also partly because the symptoms of young-onset dementia are so varied. Young-onset dementia less often appears as memory loss, which is the most common symptom of dementia in older people. Instead, it more often appears as changes in behaviour (eg apathy, irritability) or personality (eg loss of empathy).

The contribution of family members and carers is often very important in helping to reach a correct diagnosis. Many friends and relatives say that - when they look back - the first sign was that the person did not seem quite themselves. For many, the person started to make mistakes and struggle at work even if their job had not changed. For others, problems with close relationships were the first signs. Keeping a symptom diary may be useful if you suspect something is not right.

The process of assessment and diagnosis for suspected young-onset dementia is broadly similar to that in an older person and usually starts with the GP. However, there is a wider range of possible causes of symptoms in a younger person and so a particularly thorough assessment is needed. If young-onset dementia is suspected, the GP will generally refer the person to a specialist.

Seeing a specialist

The type of consultant the person will be referred to may vary; there are no standard pathways for assessment and the route to diagnosis can be complicated. Older people with suspected dementia are often referred to a memory assessment service and seen by an old age psychiatrist. Assessment and diagnosis in a younger person may follow this route but they are more likely than an older person to see a consultant neurologist or general adult psychiatrist. It is not unusual for a younger person to see several different specialists before getting a diagnosis.

In a few areas there are specialist diagnostic services for younger people with suspected dementia. These tend to be led by professionals - old age psychiatrists, neurologists, sometimes clinical psychologists - who have a special interest in cognitive problems (to do with memory or thinking) and dementia. A specialist diagnostic service should help younger people get faster and easier access to care. However, there is recent evidence that such services are becoming less common because of changes to the way NHS services are being delivered.

Assessment will often include extensive tests of mental abilities, behaviour and daily functioning, a full physical exam and at least one brain scan - often including more specialist scans. A lumbar puncture, a procedure to collect and analyse fluid around the spine, may be useful. It will also be better tolerated by a physically fit younger person than by a potentially frail older person.

Genetic testing

A person who is suspected of having frontotemporal dementia or early-onset Alzheimer's disease and who has a strong family history of that form of dementia may be offered genetic testing. This is to see whether they have a mutation that has caused the dementia. In some cases such 'diagnostic genetic testing' will confirm the dementia type and show that the dementia is genetic.

Genetic testing needs careful consideration because if a mutation is found this has implications for the person's birth relatives. Each child or sibling (brother or sister) will have a 50 per cent chance of carrying any mutation that is found. The strong inheritance of genetic frontotemporal dementia and the much rarer familial Alzheimer's disease means that anyone who has a mutation will almost certainly develop the dementia.

Particular issues faced by younger people

One major issue facing a person with young-onset dementia is that their symptoms may be very different from the memory loss usually associated with dementia in older people. They could have, for example, problems with behaviour, vision or language.

The other main issue is often the stage of life at which the person develops the condition. Many younger people with dementia report that the diagnosis was harder to accept because it was completely unexpected and had come 'at the wrong time' in their lives. As well as fear about the future, the diagnosis can cause feelings of loss, guilt or anger. The whole family finds it has to adjust to a wide range of changes. In general, younger people with dementia are more likely to:

  • be in work at the time of diagnosis
  • have a partner who still works
  • have dependent children
  • have older parents to care for
  • have heavy financial commitments, such as a mortgage
  • be more physically fit and active
  • have a rarer and genetic form of dementia

Some people with dementia may want to continue working for some time after their diagnosis, or feel they have to because they need the money. It is natural to feel anxious about telling your employer about your diagnosis, but doing so will help give protection under the law if you want to keep working. Some people decide to take early retirement and maybe start voluntary work as a way to maintain a sense of purpose. Carers may want or need to continue working - possibly with changed working patterns to fit round a supporting role. They may also be concerned about giving up work to care full time.

Alzheimer's Society can advise on some issues relating to work and finances, but people with dementia and carers might require specialist advice. This may be available from a disability employment adviser at the local Jobcentre Plus, or from the local Citizens Advice Bureau (see 'Other useful organisations'). People should ask for a benefits check to make sure that they are receiving the benefits to which they are entitled. Seeking advice about pension rights is also important, particularly as the rules on pensions are changing.

For people with children, it is important that they understand - in an age-appropriate way - what dementia is, how it affects their parent and what changes to expect. Every child is different and will react in their own way.

Driving may also be more problematic for younger people with dementia. Some people with dementia are able to drive safely for some time after diagnosis, but there will be a point at which the person will have to stop. For many people with dementia, the decision to stop driving can be a difficult one .

Some people with an inherited dementia (eg familial Alzheimer's disease, genetic frontotemporal dementia) will be found by diagnostic genetic testing to have a mutation which has caused the dementia. This raises the possibility of genetic testing of adult birth relatives who do not have any symptoms to see if they too have the mutation. Regional clinical genetics services will offer counselling to see whether such testing - called predictive genetic testing - is the right decision for that person. For more on this sensitive topic (including genetic testing for couples planning to have a baby).