Follow UP

When all the tests are completed, the patient returns for the results and an interpretation is given as to any abnormalities that have been detected. It’s important here to emphasise that not all people will receive the news of a neurodegenerative process such as an early onset dementia. In cases where all results have returned normal and no abnormality detected, then the person will be asked to come back in a further six months purely for observational purposes.

Those who unfortunately have received a diagnosis of a tentative neurodegenerative disorder, will be offered the following if it is deemed appropriate. It is important to emphasise that these tests are only done when there is some doubt as to the diagnosis and a more definitive cause needs to be found. They are also done to highlight the specific type of dementia that the person is suffering from. It may also be necessary to refer on to a consultant neurologist with a special interest in this type of dementia. This is a complex disease and a valued opinion may be needed by this specialist.

The tests are:

1 A PET scan. This type of imaging can give more information than an MRI scan.

2 CSF studies. In rare circumstances an arrangement can be made for a patient to be referred for a lumbar puncture. A specimen of cerebral spinous fluid is taken for analysis for the purpose of obtaining suspicious biomarkers that can be linked to various subtypes of early onset dementia.

3 Genetic testing. In rare circumstances where there is a suspicion of a familial inheritance this form of testing can be arranged.

Advantages of a timely diagnosis. 

There is little to be gained by an approach of diagnostic silence. Openess regarding the disease entity helps patients come to terms with the condition in a timely manner. Unfortunately far too many people with early-onset dementia receive a diagnosis when the disease is quite advanced. This can be through no fault of the healthcare professional involved but purely that it is extremely difficult to diagnose given the symptom complex that the person presents with in the early stages.

However studies have shown that people with dementia of this type can be better equipped to cope with the disease as it progresses.

This also gives people an opportunity to make decisions about their legal and financial affairs. Examples of this are to do with Will making and Enduring Power of Attorney.

It also provides for people with this condition, an opportunity to benefit from available medications and non drug therapies that may improve their cognition and quality of life.