What should I ask the doctor during tests for dementia?

If you’re undergoing tests for dementia there might be lots of questions you want answers to. Find out what’s good to ask during a diagnosis...

Diagnosing dementia takes time and often involves several meetings with doctors or experts at a memory clinic or in a hospital. You’ll probably need to have some memory ‘tests’, too, and may also be offered a brain scan.

Whilst this is going on, it’s understandable that you might start feeling scared or stressed about what the future could hold if it turns out that you do have dementia. So make sure you are:

Honest with others – There’s nothing to be gained from pretending you aren’t worried if you are. Having at least one person to confide in, may also help to reduce your anxiety.

Tip: Try to take someone with you to all the appointments, it could really help and they could write down everything you’re told so you can look at it afterwards.

Honest with yourself – Are you the sort of person who copes best with a difficult situation when they know all the facts, however upsetting? Or can too much information send you into a tailspin and leave you feeling overwhelmed?

Tip: How you answer this question (and there is no ‘right’ or ‘wrong’) could make a big difference to what you ask during the diagnosis process, and how you deal with it.

During diagnosis: Five useful questions

1. What tests will I need to have?
This depends on how clear your symptoms are, but generally most people receive blood tests to rule out other causes of memory problems and at least one Mini Mental State Examination.

2. Will I be sent for a brain scan?
Brain scans aren’t always necessary and are often only used if there’s some uncertainty about the diagnosis or if the person who’s being diagnosed is particularly young. If you’d like to have a brain scan anyway, you can ask for one but you might have to pay privately if your GP doesn’t think it’s necessary.

3. Can I receive counselling before being diagnosed?
You should be entitled to counselling on the NHS. This could be very useful if you’re struggling to cope with the idea of dementia and aren’t sure if you want to know or who else you want to tell.

4. How long might it take before I get the results?
Again this depends on how straightforward – or not – the diagnosis process was but as a general rule it’s usually a few weeks.

5. Will I definitely be told if I have dementia?
If you want to know, you should definitely be told. However, some people prefer not to know – and that is your right too, so just make sure you tell your doctor or family your wishes in advance.

Diagnosis day: Three useful questions

1. Do I have dementia?
If the doctor isn’t explaining it clearly (some doctors prefer to talk about ‘memory difficulties’ rather than say ‘dementia’) it’s perfectly reasonable to ask a direct question – and to receive a direct answer.

2. Can you tell me what type of dementia I have?
Knowing if you have Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, frontotemporal dementia (often called Pick's disease) or mixed dementia can be useful in understanding your condition and planning ahead.

3. What will happen now?
The good news is that having a diagnosis means you should soon be able to access the right help and support. So whilst your doctor or specialist might not need to see you again for a few months, you will be put in touch with care services, support groups and voluntary organisations which could all help to make your life easier. You might also find you’re entitled to benefits, grants or free legal advice.

Tip: Ask the doctor to write down any words or medical jargon that you don’t understand, and to explain what they mean before you leave his office.