Dementia diagnosis - advice on the appointment.

Being told that your loved one has dementia can be devastating, people’s worst nightmares being realised. Both you and the person afflicted will be in a fragile emotional state, so it goes without saying that it should be done (hopefully!) in a professional and respectful manner.

If all goes well, the doctor should be the person to tell the patient, and this should be done at an appointment that has already been pre-arranged. It’s imperative that you are there with your loved one, for emotional support, but just as importantly, to ask any questions that your loved one can not, or doesn’t feel capable of asking. It’s essential that you take notes and glean as much information as possible from the doctor. Hopefully, the medical staff will have some written information that you can be given to take away to read and understand.

Know your right to ask questions

As we all know, doctors can often like to use ‘medical terminology’, using words that you don’t understand and all too soon you can be lost in translation. Make sure you ask the doctor to speak clearly, using words that you and your loved one understand. Keep asking questions. If you don’t understand something, ask them to explain it. Don’t be afraid to question anything.

It’s not easy, people often feel unnerved by doctors and feel the need to be overly polite when in front of people in assumed authority, but it’s essential that you focus on getting all the information you need. Ideally, be forceful, yet polite. In the vast majority of cases, the doctor will understand!

Second opinions are your right

Also, please remember that you can request a second opinion. Ask that another doctor at the medical practice give their view and opinion or consult a doctor from another GP practice.

Another factor to bear in mind is the issue around ‘consent’ and ‘confidentiality’. As the person attending with the patient, the consent is implied, but it may be worth making this clear to the doctor from the outset to make sure you are supplied with all the information that you and your loved one need. In Scotland, the consent right on the part of the Carer is set down in law, but in the rest of the UK, it is not. Make sure you cover this off from the start with the medical staff.

The diagnosis

It is worth noting at this point, that giving diagnoses like dementia can be a difficult thing for a doctor to do. There have been cases where the patient has cancer, and the doctor has not given the patient the news, instead focusing on the treatment, and skirting around the stark reality of the medical diagnosis. This can be true for dementia, with doctors sometimes showing the same reluctance to grasp the nettle and convey the bad news. Things have improved, and it is now clear in the guidelines that doctors must respect the rights of the patient to be given all the available information, using professional judgement with regards to how and when this information is given.

Summary as to what your appointment should include

Here are some of the key areas that the doctor should cover at the appointment;

• Type of dementia that the patient has, or if the type of dementia has not quite been formally diagnosed, what the plan is going forward to obtain that diagnosis.

• Details about how the illness develops

• Treatments that are or will be available to the patient

• Care & Support services

• Care plan and Care coordinator (see article here)

• Support groups and voluntary organisations that can help both patient and carer

• Advice about driving and working (see article here)

• Financial & legal advice and where to find it. (see articles on financial matters and dementia here)