Frequently Asked Questions

Is there public transport to the clinic?

Yes there is public transport within a short distance from the clinic.

Is there parking directly outside the clinic?

Yes there is abundant free parking.

Do you reimburse travel expenses?

Travel expenses can be reimbursed for those participating in a research study and details of this will be provided. We cannot reimburse travel expenses for those attending the clinic who are not participating in a study.

How long will I spend at the clinic?

Your time/number of visits to the clinic will depend entirely on your eligibility or results. We offer tea, coffee and lunch facilities to everyone who visits the clinic as we want to make your experience comfortable and worthwhile.

Why do I need a study partner?

Virtually all of the research studies that run at the clinic require a study partner to attend most visits with you.

This person may or may not live with you, but must have a sufficient level of contact to know how you are in yourself and managing on a day-to-day basis. Study partners are a very important part of a process and are asked to read the study information with you and consent to be a part of the process. They help support the research study by answering questions for example about how they think your memory is working and your ability to do daily tasks. They are actively engaged in the program and our experience is that they find this beneficial and interesting.

Does my study partner need to attend every visit?

Your study partner is required to attend the initial study visits, the Screening visit, and then if suitable for the study, the Randomisation visit.

Beyond this point in a study, the requirement for a study partner to attend will be explained by our research team and varies from study to study.

Do studies involve taking medication?

Typically, yes. Most of our studies evaluate a potential new medication compared to a placebo. This could be a tablet, a patch, a spray, injection, or infusion. Some participants will receive the active study medication and some the dummy medication (placebo). The research team do not know whether a study subject is receiving the active medication or the placebo. They are blinded to this as indeed is the participant.

Our research team will fully explain how the medication is administered and how often it is taken. Occasionally, there may be an “Observational” study running that does not require the administration of medication.

Are there side effects of study medication?

It is fair to say that most prescribed medications have some recorded side effects and a good example of this is aspirin. Study medications can have side effects and the study information provided will explain this in detail.

Our experienced research team are happy to discuss any questions you may have in relation to this.

How many visits will I need to make to the clinic during the course of a study?

This will depend on the study you are taking part in. There is an initial screening visit and if the initial assessments suggest you may be suitable for the study, there will likely be further screening tests such as brain scans.

Once all of the screening information has been gathered, our research team will inform you if you are eligible to enter the study. If you are eligible, you will attend a “Randomisation” visit when the study medication will be administered. The term “Randomisation” is used to describe the process that randomly allocates the active medication or placebo to a study participant. Subsequent visits might occur every 2-4 weeks, monthly or 3 monthly, and our research team will explain this and book your appointments.

How long do research studies typically run for?

Some studies are short, for example, 3-6 months. Other programs can run for 1-4 years. Because there is now great interest in identifying Alzheimer’s at the earliest opportunity, the research studies are designed to run for longer periods to help measure the gradual changes in memory that occur early in the disease process.

This means that a participant is carefully evaluated over quite a long period of time and most study participants find this helpful and reassuring.

What kinds of tests are involved in a research study?

Our research team will conduct memory tests and tests to evaluate daily activities. Blood tests, heart tracings (ECG), MRI brain scans also form part of the screening assessments.

Highly specialised PET scans are also used and can detect the abnormal Amyloid and Tau proteins that build up in Alzheimer’s disease and they may be offered as part of the study.

Measuring Amyloid and Tau proteins in the spinal fluid (CSF) is also now widely used in Alzheimer’s research and is obtained by lumbar puncture which is part of some research studies.

Will I get paid for taking part?

Our studies are on a voluntary basis and there is no payment to take part in our research. However, we will reimburse any out-of-pocket expenses you may have e.g. travel costs, and provide you with tea, coffee, and lunch during your visits.

Some studies will provide a small stipend in recognition of the time and inconvenience to attend study visits and our research team can advise you on this.

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

Alzheimer’s disease is currently the most common cause of Dementia. The word Dementia comes from the latin ‘demes’ which literally means loss of the mind. Therefore there are many conditions that can cause Dementia. The second most common cause of dementia is Cerebrovasular disease (hardening of the arteries).

What this means is a person can have Dementia due to a cause other than Alzheimer’s disease. If a person has been told they have Dementia the question to ask  is what is the cause?. Is the Dementia due to Alzheimer’s disease or another cause.

A family member has Alzheimer’s disease and is currently on treatment with Aricept. Could he take part in a study at the clinic?

Yes. Many studies are specifically designed to allow individuals to participate who have Alzheimer’s disease and who are currently receiving Alzheimer’s therapy e.g. Aricept (Donepezil), Exelon (Rivastigmine), Reminyl (Galantamine), Ebixa (Memantine). Participation in a study allows access to potential new treatments in addition to standard Alzheimer’s therapy.

My Husband has Alzheimer’s disease but is not receiving any treatment now. He was tried on Reminyl initially but this was changed to Aricept. He was not able to tolerate these tablets. Could he take part in the Alzheimer’s vaccine trial?

You raise an important issue. Yes, he could potentially take part in an Alzheimer’s trial but we would have to see your husband and evaluate him carefully.  Treatments work in different ways. Given that your husband has known Alzheimer’s disease but is on no current treatment an Alzheimer’s trial of a potential new medications would be well worth considering.

I have a 79 year old dad with Alzheimer’s he has been on Aricept for 3 years but does not seem to be working anymore, could you please advise me of any new treatment that may help, he also has had 2 strokes in the last 2 years.

Thank you for this question. The scenario you describe is not uncommon. Aricept is a symptomatic treatment for Alzheimer’s disease. That is it can improve some of the symptoms for varying degrees of time.

The recent strokes of course may have had an impact on the memory function. It is important that any risk factors for stroke are identified and appropriately treated. Depression must be watched for and can be treated effectively. In terms of other specific treatments for Alzheimer’s disease Aricept and the class of drug it belongs to (the acetylcholinesterase inhibitors) remain the mainstay of Alzheimer’s therapy.

There are several avenues of research ongoing but the recent strokes may preclude entry into a research programme but having said that this is an avenue certainly worth exploring.

My brother (age 55) was diagnosed four years ago with early onset Alzheimer’s and vascular dementia. He’s been on Aricept for some years. I’ve read various reports that stem cell treatment might be able to reverse the effects. Might you be able to offer me any advice on this?

Alzheimer’s disease is the commonest form of dementia and you say your brother has been diagnosed with Early Onset Alzheimer’s disease and Vascular dementia which of course is quite possible. Many patients with Alzheimer’s disease have findings on brain scanning that indicate some underlying vascular pathology. This does not necessarily mean they actually have vascular dementia as well.

There are actual criteria that can be applied to an MRI scan of the brain that describe the changes and allow a conclusion to be reached as to whether or not the changes are significant enough to meet the diagnostic criteria for vascular dementia. Your brother is receiving treatment with Aricept which is licensed for the treatment of Alzheimer’s disease and this is a positive outcome.

Some patients with vascular changes on a brain scan may simply be labelled as vascular dementia when in fact the changes may be minor and they in fact have underlying Alzheimer’s disease. The importance of this is that they may then receive no treatment. Vascular risk factors are of course important to identify and treat. In terms of potential stem cell treatment for Alzheimer’s disease this is an area that we have no experience of.  Of more relevance possibly is the potential to participate in a vaccine programme.

Such programmes are currently designed for those with Alzheimer’s disease who may or may not currently be receiving treatment for the condition. The degree of vascular change would have to be assessed because if it were too great then an individual is likely to be ineligible to participate.

My wife suffers from Alzheimer’s, she cannot communicate. Her words are all jumbled and gets frustrated when I can’t work out what she wants. Is there any further treatment in progress that may one day give me back the wife I lost 4 years ago?

I understand the great difficulties and problems this can cause. Alzheimer’s disease affects the cortex, the outer layer of the human brain and it is well documented that Alzheimer’s disease causes a major disturbance of language. In some patients the word finding problems remain mild for lenghty periods. In others the loss of language is rapid and this is very upsetting.

An important thing to remember is that comprehension is often much better than you might imagine. We see this often in research. A person who is still functioning well yet who has a very low memory score because they cannot say the words to answer the questions. Sadly this means that many people are excluded from research studies because their memory scores are too low.

You do not say if your wife is currently receiving any treatment or what recent memory scores have been. There are new treatments such as vaccines being studied but to know if your wife would be eligible to participate she would have to be properly evaluated.

My mother-in-law is on Donepezil but it does not seem to be doing anything. She has been diagnosed as having the first stages of Alzheimer’s in early 2008 but is in full denial. She keeps saying that her memory is not as good as it used to be and we both know it is abysmal. She has carers coming to see her twice a day but refuses to admit this. She gets very aggressive as a result. Her short term memory is getting worse. Does this mean that she will be reaching the second stage soon and if so, how would we know and how long would this take. Many thanks for your help and any advice will be very welcome.

The scenario you describe is sadly not uncommon. We know that about 50%-60% of patients prescribed an acetylcholinesterase inhibitor, and donepezil (Aricept) is a drug within this class, will show evidence of response to treatment. The remainder for reasons not fully understood do not respond. For some doctors response is taken as evidence of stability or no deterioration.

Some individuals do positively respond to treatment and this response can be maintained for varying periods of time. It appears from what you say in your mother-in-law’s case that she is not responding to treatment. You do not say what her age is, the current dose of donepezil or mention the result of the memory test that is often done. I am referring to the Mini-Mental State Examination test (MMSE). This is scored out of 30 points. The mild dementia range or early stage you refer to would normally include those individuals with score in the 20-26 range.

Once the MMSE score starts to fall below 20 out of 30 then this is more in keeping with moderate dementia.  I think from a practical point of view a discussion with those involved with her medical care might be helpful. It would be helpful to know what the current memory score is and how it has changed. Is there any room to increase the dose of donepezil? She may already be at the maximum daily dose of 10mg. You also highlight episodes of aggression and this should be discussed and monitored as we know behavioural disturbance occurs not infrequently in this condition and may be amenable to additional treatment.

My wife is 80 and has quite advanced Alzheimer’s. She cannot take medication due to an irregular heartbeat. Could there be any advantage to her condition by registering. She is at present under care of the local consultants.

There are many causes of an irregular heartbeat. Often this can be diagnosed from a simple ECG tracing, sometimes more prolonged recording of the heart beat is required. You mention that your wife has quite advanced Alzheimer’s disease. If you feel that she would be able to visit the clinic for assessment then we could potentially arrange to see you both.

The method of contact would be for you to telephone the clinic during working hours and explain the reason for your call. A member of the research team will ask you some questions to try and ensure your wife might be potentially suitable. There will be questions about her medical history and current medications. It is possible that a research study might be available that your wife could participate in even though she has been deemed not suitable for prescription medication for her Alzheimer’s disease.

What are the current clinical trials at Glasgow Memory Clinic?

You can view our current studies here.

What are the opening hours of Glasgow Memory Clinic?

The opening hours are 8.30am to 5.00pm (Mon to Thu) and 8.30am to 3pm on a Friday.

What should I do if I want to cancel or change my appointment?

Contact us on 0141 948 0206 or email info@glasgowmemoryclinic.com as soon as you can.

Once I have submitted an enquiry or completed a pre-screening questionnaire, what are the next steps?

A member of our patient liaison team will get in touch with you – this is usually within two to three business days. On occasions if there has been an increase in response to our advertising the team may take longer to respond however please be assured we will contact you as soon as we can. If you don’t hear from us within this time, please contact us on 0141 948 0206 or email info@glasgowmemoryclinic.com

What are the main benefits of taking part in a clinical trial at Glasgow Memory Clinic?

• Access to promising new treatments often not available outside the clinical-trial setting.
• Treatment that may be more effective than the standard approach.
• Close monitoring, advice, care, and support by a research team of doctors and other health care professionals who understand your disease or condition.
• The opportunity to be the first to benefit from a new method under study.
• The chance to play an active role in your own health care and gain a greater understanding of your disease or condition.
• The chance to help society by contributing to medical research. Even if you don’t directly benefit from the results of the clinical trial you take part in, the information gathered can help others and adds to scientific knowledge. People who take part in clinical trials are vital to the process of improving medical care.

For many, the hope of personal health benefit is their main or only reason for taking part. This might include getting a new drug or treatment they thought might help them; learning more about their condition; being screened (hoping either to be reassured or to get an early diagnosis); the chance of getting access to care they felt would be better or more specialised; or faster access to care. Some people added that they took part for their own interest or curiosity.

Most of us have in some way benefited from research without necessarily realising it (e.g. by taking medical drugs, benefiting from the use of certain equipment, being treated in a certain way or being in certain environment). People who take part in dementia research are contributing towards the care, treatment and wellbeing of countless numbers of people who have dementia, as well as others who may develop it at some time in the future. They may have varied reasons for wanting to be involved in research and different expectations about what it might bring.