In this article, we look at the tough issues relating to diagnosis. It may take time, and some tests may be involved. But for most people, getting a clear diagnosis is a vital first step towards getting good support for the years ahead.
Facing a dementia diagnosis
It is hard to face going through any diagnosis process or to try to coax a loved one to do so. And when it comes to dementia, it is especially hard. There is still a lot of stigmas associated with dementia. Embarrassment and fear make people avoid talking about the topic, let alone taking any action on it.
Many people will have lived with a strange sense of something being wrong for some time – months or even years. They know they are having difficulties, but the reason for them is unclear. Family members and friends may suspect there is something wrong too, but feel unsure whether it is worth pushing for further investigations.
Over recent years, there is a growing consensus that it is a basic right for people living with dementia to be given clear information about the illness they are living with. This is accepted for any other illness – so why not dementia? So yes, it is important to diagnose dementia.
In some situations, the person with suspected dementia may have a clearly stated wish not to know the diagnosis – this is also their right and needs to be respected.
Have the tests and scans
At first, a GP will usually want to get a clear idea about the person’s medical history and to hear about the sorts of practical problems they’ve been experiencing. It is a good idea for the person with suspected dementia to be supported by a family member or friend at this appointment – of course, it can be hard to report a medical history accurately if you are having problems with your memory.
The GP should then do some tests to rule out any other causes for the symptoms. Sometimes a person’s memory loss may be caused by other problems that can be treated successfully. Depression, thyroid problems, an infection – there are a number of problems which may make a person seem confused or disoriented but can be treated successfully.
The GP is likely to use a cognitive test to test a person’s thinking, language and memory skills. A common test used is called the ‘Mini-Mental Status Examination’ or MMSE. This involves asking a series of questions and establishing if the person can answer these correctly.
They then may choose to refer the person for a brain scan – most likely an MRI scan or a CT scan – to establish what is going on in the person’s brain. If the scan shows evidence of some brain cell loss, combined with the history that the patient has reported, the doctor may then confirm a diagnosis of dementia.
The GP may feel they should refer the patient to a specialist doctor (such as a geriatrician, neurologist or psychiatrist) who is more knowledgeable about dementia in order to investigate.
Ideally, a doctor should be attempting to establish which type of dementia a person is living with – whether it is Alzheimer’s disease or vascular dementia, and so on. Knowing which type of dementia a person has can be important – it may have implications for the sort of medication prescribed, and it may help everyone to have a better understanding of what sorts of symptoms to expect.
Consider the treatment options
Depending on which type of dementia a person has, doctors may think that it is worth trying one of the few ‘anti-dementia drugs’, also known as cholinesterase inhibitors. The most common of these is called Aricept, but there are a few others too.
Ideally, a doctor should support a person newly diagnosed with dementia to access post-diagnostic support: this could be something like counseling, or occupational therapy, or peer support. The availability of post-diagnostic support varies a lot around Australia. Doctors should also be aware of the help that is available from Dementia Australia and care providers and signpost this sort of help to families.
If a person with dementia goes on to seek support from a care provider, it is important to be clear with the care provider about the fact of the diagnosis and the person’s needs arising as a result of dementia.
While coming to terms with a diagnosis of dementia is often a huge challenge, many people say they feel a sense of relief to finally know what has been going on for them.
It can help with thinking ahead about the future. Now is the time to make clear what you do and do not want in terms of your future health, care and financial needs.