Frequently Asked Questions

Dementia is a term for a group of symptoms that result in an impairment in cognition (‘brain skills’ like memory, thinking & behaviour) and function (the ability to perform everyday activities independently).

As we age, our risk of dementia increases. However, dementia is not a normal part of ageing. The symptoms of dementia can be caused by a range of brain diseases, most commonly neurodegenerative diseases, such as Alzheimer’s disease.

Neurodegenerative diseases are illnesses that cause the death of brain cells over time. They begin with a long, silent period in which the damage to the brain gradually gets worse, without causing noticeable symptoms. As the damage progresses, an individual will start to experience symptoms - problems with their memory, thinking and behaviour. Once these symptoms cause noticeable issues for the person in completing day to day tasks, the disease is considered to have reached the dementia stage of the illness.

In short, the onset of Alzheimer’s disease comes first, many years before the onset of Alzheimer’s dementia.

Find out more about explaining the difference between Alzheimer’s disease and dementia with this article from Dementia Science Explained.

For more information on the different types of brain disease which can cause dementia, see the Alzheimer Scotland information library.

There are some parts of our overall risk for Alzheimer’s disease that we can’t control, including the genes we inherit from our parents.

Although having a parent with Alzheimer’s disease may mean that an individual inherits some genes associated with higher risk, it’s not always the case. It’s extremely rare for Alzheimer’s to run in families (less than 1% of all cases). For the other 99% of cases, the risk of developing Alzheimer’s is a balance between our genes, our lifestyle and life circumstances. We do know that making positive changes can help tip the balance in our favour and support better brain health even for people who may be at a slightly increased genetic risk. So it’s never too early or too late to take steps to protect brain health.

Find out more about the genetics of Alzheimer’s disease with FutureLearn.

We don’t know exactly. On average women do live longer than men, but that doesn’t appear to explain the whole picture. We do know that oestrogen has protective effects on the brain so there may be hormonal changes throughout life that influence women’s risk.

Research is ongoing to investigate whether early use of HRT for some women at higher genetic risk may be one promising area for protecting brain health. Full trials are needed before any firm conclusions can be made. Some of the riskier versions of certain genes are known to be more commonly expressed in women. There may also be differences between the sexes in the diagnostic process, how men and women present to healthcare professionals and the way memory tests are used as part of an assessment. Women are also much more likely to experience domestic abuse, which can influence many areas of risk for brain health such as exposure to brain injury, emotional distress, mental health issues and sleep problems.

So it’s not a straightforward answer. And an area that, for many years, has not received the attention it deserves. One thing that is certain is that we need much more research into sex differences in order to deliver more personalised approaches to prevention, particularly for women.

Find out more about what we know, and what we don’t know, about why women may experience dementia differently to men in this blog from the Alzheimer’s Society.

Yes!

There are lots of different things that can impact the health of our brains and in turn influence our risk of developing the brain diseases that can lead to dementia. Not all of these things are within our control (for example our genetics). However, there are lots of ways we can look to make positive changes throughout our lives that can help protect the health of our brain and reduce our overall risk. It is estimated the number of cases of dementia around the world could be reduced by as much as 40% by targeting modifiable risk factors.

Find out more about the evidence base for modifiable risk factors for dementia in the Lancet Commission Report on Dementia Prevention, Intervention and Care.

Not yet, but they are getting closer. The medications that are currently prescribed in Scotland for Alzheimer’s disease are all symptomatic treatments. This means they can help to ease symptoms, but they don’t do anything to stop or slow down the disease process that causes these symptoms. Over recent decades there have been lots of clinical trials to try to find disease modifying therapies - drugs that act to slow the progression of disease.

Imagine the damage caused by Alzheimer’s disease in the brain is equivalent to a boat springing a leak. The drugs we currently have act to bail water out of the boat, but they don’t do anything to plug the hole. Plugging the hole is the aim for disease modifying therapies.

Following recent promising clinical trial results we are now starting to see the first drugs with the potential to modify the underlying disease begin to be approved around the world.

We’re not there yet. In order to establish a screening programme with universal coverage the UK Government’s National Screening Committee must evaluate the rationale according to a set list of criteria. They have reviewed the case for a screening programme for dementia in the past but it was not recommended to be implemented.

As part of the criteria used there are three key areas that must be met; the condition, the test, and the intervention.

Firstly, the condition must be a significantly important health problem – we can pretty confidently say that Alzheimer’s disease ticks this box.

Secondly, they require a simple and accurate test that can be applied to detect the disease or risk of the disease. While lots of research is ongoing we don’t yet have an accurate test on an individual level that can show with certainty who is in earliest stages of disease before dementia.

Finally, there should be an effective intervention for patients identified through screening, with evidence that intervention at a pre-symptomatic phase leads to better outcomes - we don’t as yet have any disease modifying therapies, drugs or otherwise, that have been proven to slow progression of Alzheimer’s disease.

So the current picture for Alzheimer’s disease means there are not grounds to implement a national screening programme like there is for other conditions, for example for breast cancer where we confidently can say that early detection leads to early intervention, which can lead to better outcomes.

Find out more about the UKNSC’s decision not to currently recommend screening for dementia here.

Yes and no. As the global population increases, and ages, the total number of people living with dementia will continue to rise. However it looks like the rate, or proportion, of people in the UK is not going up and in fact may well be falling slightly.

Much more research is needed to understand why this might be, and what we can do to reduce rates even further. It’s another promising example though of why we should be optimistic about prevention at a population level.

Find out more about the reduction in rates of dementia (in the UK) with this excellent short webinar from Richard Merrick.

There is no single test for Alzheimer’s disease. A diagnosis is made based on a clinical opinion, which means a doctor will weigh up all the evidence for an individual’s case and come to a decision on what they feel the most likely diagnosis is. In reaching this decision doctors might typically make use of assessments such as: a person’s medical history, how they perform on certain memory and thinking tests, a brain scan, and a clinical history; the opinions of the person themselves and people who know them well on any issues with memory, thinking or behaviour they have been experiencing and whether those issues have gotten worse over time.

At the moment it's very rare in Scotland to make use of ‘biomarker’ tests to support a diagnosis. Currently this would mean taking a sample of spinal fluid from the lower back in order to detect key markers of Alzheimer’s disease – certain proteins which can be measured and indicate the presence of disease processes in the brain. Similar to the way a cholesterol test can be used to indicate the level of risk for cardiovascular disease. The development of blood teststhat can pick up on the same Alzheimer’s associated markers, and so remove the need to collect a spinal fluid sample, have come on a long way in recent years and will start to become available for clinical practice soon.

As healthcare systems shift towards detecting Alzheimer’s disease earlier in the course of the illness, before issues with memory and thinking become so apparent, it will become even more important to make use of biomarker tests to understand an individual’s risk profile and as part of the diagnostic process.

Find out more about assessing cognition with FutureLearn.