Can the progression of dementia be monitored?

Doctors have developed several ways to check and monitor dementia once it’s been diagnosed. These are the key facts you need to know.

In a nutshell

Dementia is a ‘progressive’ condition which means it usually does get worse over time. This often happens slowly however – over years, not months – but it does vary widely from person to person and can also depend on the type of dementia.

Four ways to check how you’re doing

1. Follow up appointmentsIf your GP has prescribed any drug treatments for dementia, you should receive your first follow-up appointment within about three weeks (before the second prescription is due) to make sure you can tolerate the drugs and to monitor any possible side effects.2. Memory tests Around three to six months after diagnosis you should be offered another appointment with your GP, practise nurse, at your local memory clinic or by the consultant who diagnosed you which might include another memory test. Memory tests can be a useful way to find out whether your dementia symptoms have progressed or stayed the same.For example, if your memory is getting worse it should show up fairly easily in the test and could mean that you’re given more help and support to continue living well. Further follow-up appointments are usually carried out every every six to 12 months and can involve a memory test, but not if the person finds them upsetting or intimidating.3. CT scans If you were referred to hospital for a CT scan during your dementia diagnosis, you are usually offered follow-up scans every two or three years which should be able to reveal any further physical changes inside your brain. For example, if you have been diagnosed with Alzheimer’s, the CT scan might show further loss of brain cells in the area of the brain known as the temporal lobe. If you have been diagnosed with dementia with Lewy bodies or vascular dementia, any further brain cell loss will be more general and widespread.By comparing your most recent CT scan with the previous one, your doctor should be able to see quite clearly how far – if at all – your dementia has progressed. He might then be able to suggest more effective treatments and ways to manage it.4. MRI scansThese show a clearer, more detailed picture of the brain than a CT scan and are powerful enough to reveal even the smallest changes to ‘grey matter’ inside the brain (where information is processed) and ‘white matter’ inside the brain (where information is moved along). If your most recent MRI scan shows further damage to these areas, it’s a fairly strong indication that your dementia has progressed. For example, if you have vascular dementia, the doctor will be looking very carefully for any further change in the brain’s white matter, since this is where the most noticeable signs of the disease occur.Don’t panicIf further tests reveal that your dementia has got worse, try not to worry. Our understanding of dementia is growing all the time and research is happening now. It’s quite possible your doctor, nurse or other professionals involved in your care will be able to offer you treatments, advice, and ways to cope which will keep you independent for as long as possible.

Two tests to measure dementia

Whilst every dementia journey is unique, doctors have developed ways to check and measure dementia. Here’s what you need to know about the Brief Cognitive Rating Scale and the Global Deterioration Scale

In a nutshell

Whilst it’s impossible to predict how long the dementia journey will last, it is possible to measure how far the disease has progressed. The Brief Cognitive Rating Scale (BCRS) and the Global Deterioration Scale are two very detailed tests carried out by doctors which can reveal which stage of the dementia journey someone has reached.

Brief Cognitive Rating Scale

This assessment covers five areas; recent memory, concentration, past memory, orientation, and the ability to function practically on a daily basis. The person is given a score for each area ranging from 1- 7.What the score means1.Normal – no cognitive decline2. Very mild impairment in comparison with five or ten years before3. Mild minimal impairment which is only noticeable with detailed questioning4. The test reveals evidence of marked impairment5. Moderate Severe – severe impairment is revealed6. Severe7. Very severe

Global Deterioration Scale

This test, also called the Reisberg Scale (because it was developed by Dr Barry Reisberg) rates the severity of dementia by dividing the dementia journey into seven stages of ability.What the score meansStage 1: No cognitive declineStage 2: Very mild cognitive decline (may forget namesStage 3: Mild cognitive decline (may have difficulty at work or travelling to new places)Stage 4: Moderate cognitive decline (difficulties with shopping, money or cooking)Stage 5: Moderate severe cognitive decline: Needs help dressing or bathingStage 6: Severe cognitive decline – incontinence and loss or awareness or recent eventsStage 7: Very severe cognitive decline (limited vocabulary, loses ability to walk, requires help with eating).

Good to know

These tests are sometimes carried out at the same time and can help you understand why the person you’re caring for is behaving in a certain way. Knowing which stage they’re at could also give you time to prepare for what might happen next.