Here is a list of frequently asked questions for memory conditions and trials

What is the difference between dementia and Alzheimer’s disease?

Dementia is an umbrella term used to describe the following symptoms:

  • Memory loss
  • Increasing difficulty in carrying out daily tasks
  • Difficulty finding the right words and/or numbers
  • Changes in personality and/or behaviour

Dementia is caused by damage to the brain. There are many causes of dementia; the most common is Alzheimer’s disease. People with Alzheimer’s disease have a build-up of proteins in the brain which lead to damage of the brain tissue. Alzheimer’s disease is progressive; this means the condition gets worse over time.

Alzheimer’s disease is normally diagnosed by a neurologist, psychiatrist or a GP following memory tests and other investigations such as brain scans. There are currently four symptomatic treatments which can be prescribed to someone who has been diagnosed. Symptomatic treatments help improve symptoms but will not affect the underlying disease process.

We often hear about efforts to diagnose dementia more quickly but it is just as important to identify the cause of dementia (such as Alzheimer’s disease). Different causes have different treatments. In our memory clinics we are not just trying to diagnose dementia or treat dementia, we are also trying to diagnose and treat the disease that is causing the dementia.

What are the early signs and symptoms of dementia and are they easily recognisable?

One of the key symptoms of dementia is memory loss. Experts commonly look for:

  • A person’s memory changing in a six to 12 month period, especially if noticed by someone else
  • A person becoming repetitive, for example repeatedly asking the same question time and time again

The majority of people with dementia (about 80%) have very typical symptoms that experts can easily recognise. However some people can present uncharacteristic symptoms inthe early stages and dementia can also be hard to diagnose if a person has other health issue.

Do people with dementia find it hard to retain information and get words out when speaking?

It is all about context. If somebody has these symptoms and they are age 55 then it is unlikely that they are a sign of developing dementia. For an 85 year old the risks are very different and any changes in memory or thinking functions need to be looked at carefully.

What screening techniques are used to diagnose Dementia? Is there any way to diagnose early dementia?

Diagnosing dementia is usually quite straight forward. Clinicians use information provided by the patient and relatives and may use investigations such as memory tests or brain scans. The difficult area is diagnosing the cause of the dementia and early and accurately. People who develop Alzheimer’s disease may have subtle symptoms that change gradually over several years. The earlier the disease is detected the harder it is to differentiate normal aging form early Alzheimer’s disease.

Can patients who’ve been diagnosed and are receiving medication for Parkinson’s disease also get dementia? Do dementia and Parkinson’s disease relate to the same cells in the brain?

People with Parkinson’s disease can get dementia. The movement disorder of Parkinson’s disease and dementia are related to imbalances in different brain chemicals.

What are the side effects of dementia medication? Is there a case for not starting treatment?

Current dementia medication is symptomatic. This means patients take medication to help with their symptoms, such as cognitive and memory problems, so that they feel better. Symptomatic medication does not affect the underlying disease process. Relatively few people have side effects when taking dementia medication. If a person does experience intolerable side effects it is probably better they try a different medication. People who are at an advanced stage of dementia may not improve with medication and may need different types of care.

Is violence and aggression a symptom of dementia?

People who have been diagnosed with dementia may experience agitation, become confused and fearful which sometimes results in aggression. People who were very gentle before they became unwell can also experience these symptoms. It is upsetting to see changes in personality and behaviour in loved ones, we have to remember that they do not do this wilfully and it is a result of the illness.

Is Alzheimer’s disease hereditary?

The majority of people who develop Alzheimer’s disease (95-98%) have late onset or sporadic (no specific family link) form, which is most common in people age 70 or over. People cannot inherit late onset Alzheimer’s disease. The rarer early onset or familial (hereditary) form tends be diagnosed when a person is in their 40’s or 50’s. This form can be associated with genetic mutations and can be passed down through families.

Can intelligent people suffer from dementia?

A person’s intelligence will not have an impact on their risk of getting dementia. The main risk factor for developing dementia is getting older. However people who are highly educated may be able to tolerate a greater burden of the disease before they experience symptoms.

Is there a link between diet and dementia? Can healthy dietary choices in midlife prevent dementia in later years?

Some dietary influences can affect our risk of dementia, however there is no diet that will guarantee that we will not develop the condition.

Can regular exercise prevent dementia?

Exercise, along with other healthy life style measures, can decrease our chances of developing dementia. However, no amount of exercise can guarantee we will not develop the condition.

Is there evidence that certain activities can reduce the risk of dementia, such as doing crosswords or playing a musical instrument?

Evidence suggests that brain training exercises just make us better at those particular activities and do not make us better at other things or protect us from developing dementia. However remaining active, whether that is mentally, socially, emotionally or physically does seem to be important. Activity keeps us engaged and promotes well-being.

Is dementia a 'first world' problem? Do we know how it affects people in other parts of the world?

Dementia seems to affect people from all countries. The main risk factor for developing dementia is getting older. Dementia rates for people over 80 are more than 30%, therefore if a population has more elderly people we tend to see more people with dementia. That’s why it seems to be more of a problem in developed countries.

Do I need to be referred by my GP to take part in a clinical trial?

You do not need to be referred by your GP to take part in a trial. A GP or other health professional can refer you, or alternatively you can contact a research department yourself or on behalf of a family member or friend.

Will a medical trial affect my regular hospital appointments at the memory clinic?

No, patients can still visit the memory clinic while they are taking part in a trial. The research team will keep the memory clinic informed about the trial.

What is a study partner?

A study partner is a person who knows a patient well and is willing to attend the clinical trial sessions. Study partners are also normally required to answer questionnaires as part of the trial. It could be a family member or friend. Usually each trial identifies a minimum amount of time that a person should spend with the patient in order to qualify as a study partner.

What are early stage and later stage clinical trials?

Clinical trials are conducted in stages called ‘phases’. A good definition of each phase (one through four) can be found here.

Can I expect medication side effects while on a trial?

All medication, including the ones we may take more regularly e.g. paracetamol, carry a risk of side effects. Early stage clinical trials (phase one) investigate the possible side effects for a particular medication and how often these occur. After phase one, medication can only be tested further (phases two and three) if it is generally well tolerated.
Our unit most commonly undertakes later stage testing (phase three studies). This means participants will have a good understanding of the risk of any common side effects before taking part.

How often will I have to come to the hospital during the trial? Will I know when I need to visit in advance so that I can book holiday?

Each clinical trial will have a slightly different appointment schedule. However, generally patients visit the hospital once a month or once every few months for a trial appointment. At the beginning of a study (the ‘screening’ process), appointments will be a little more frequent. Participants will know well in advance when appointments are due to help with holiday and other planning.

Do research participants get paid? Can I be reimbursed for travel expenses?

Participants are sometimes paid for early trials (also known as phase one trials). Participants are not usually paid to be involved in later stage research trials (phase three), however, they typically get their travel expenses and refreshments paid for on the days they attend a research appointment.

Will I get I get my test results back?

When participants take part in a study, their physical health is closely monitored and any test results are reviewed by the study doctor. Participants will always be informed if any test results are of concern or require further action, for example, if a repeat blood test is needed.

Can I take other medication at the same time?

Usually it is fine to continue to take current medications as long as they are at a stable dose with no side effects and are being taken as prescribed. Sometimes prescribed treatments cannot be taken with certain trial medications, and these would be specific to each trial. The current medications that are prescribed for Alzheimer’s disease and dementia are allowed to be taken.

What happens if I change my mind?

Patients are able to change their mind at any time during the course of a clinical trial. They do not have to give a reason and it will not affect their clinical care outside of the trial.

The participants and their study partner’s best interests are a top priority for the unit at all times.

What is a randomised trial?

In a randomised trial the participants will be allocated to a treatment group by chance. Each treatment group differs; this could be different doses of the same medication, different medications or an active medication versus a placebo (dummy) treatment. This is done randomly and usually by a computer to prevent bias within the research trial.

What does ‘double-blinded’ mean?

This means that the research team and the research participant will not know which treatment group the participant has been assigned to.

What is a placebo group and why do clinical trials have one?

A placebo is a dummy or inactive medication. Many trials use a placebo medication as a comparison for an active treatment medication. This is to test whether the active treatment is more effective in treating a particular disease, and to control for the ‘placebo effect’ where patients may feel they are getting better simply because they have been given a new medication.

What happens if something goes wrong?

It is rare for something to go wrong as clinical trials are carefully designed to make sure the patients’ safety is the top priority. The research team will complete physical health checks, such as a blood test, regularly during the study to monitor for any problems. Participants will also be given an emergency contact card in case they have any worries or concerns at any time including overnight or at weekends.

How long does the study last for and what happens at the end of the clinical trial?

Studies usually last between six months to two years. At the end of the trial participants sometimes have the option to take part in an extension of that trial. During the extension all participants usually receive the active treatment and would continue until the medication is licensed for use in the UK. Not all trials have this option. If a trial does not have this option a patient may have to stop taking the trial medication/placebo at the end of the study period. This would not affect any other treatment or care they are receiving outside of the trial.