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 (such as apathy, irritability) or personality (such as 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 (see factsheet 426, Assessment and diagnosis). 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.
A person who is suspected of having frontotemporal dementia or young-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% 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. For more about genetic testing see factsheet 405, Genetics of dementia.