Participating in research

This section provides information about:

  • reasons to participate in research and possible benefits
  • possible drawbacks and risks
  • questions to consider asking researchers
  • some of the tests that are typically used by researchers
  • ethical issues.


What is research?

Research is a general term that covers all kinds of studies designed to find responses to worthwhile questions by means of a systematic and scientific approach. Clinical trials into the safety and effectiveness of new drugs are just one type of research. Other studies, in the domain of dementia, might be aimed at finding out how a procedure could be improved, whether a certain form of social support delays entry into residential care, how people with dementia react to the use of assistive technology, which factors reduce the risk of developing dementia, the impact of dementia on relationships or the ethical implications linked to the use of certain new technologies by or for people with dementia etc.

There are many different ways to carry out research but roughly speaking there are two main approaches, namely qualitative and quantitative. Qualitative studies concentrate mainly on words and meanings and aim to capture the richness and complexity of human experience, whereas quantitative studies involve recording information obtained from participants in numerical form so as to enable statistical analysis of the findings and the generalisation of those findings to the wider population. Behind these two main approaches, there are important theoretical differences and philosophical assumptions about the nature of knowledge, truth and reality, how this should be recorded, what kinds of methods should be used and the role of the researcher in this process. In the past, there was considerable debate about which approach was “right” and some people argued that the two approaches were incompatible. Nowadays, it is generally accepted that both approaches are valid and have their advantages and disadvantages. For this reason, many researchers adopt a pragmatic approach, simply using whichever method is best suited to answering their research questions and nowadays this often involves a combination of both approaches within the same study.


Why do we need research?

A lot of what we do in our daily lives is based on common sense, what we have learnt from other people or what we have learnt through personal experience or observation. But sometimes common sense is not the best approach and sometimes there are conflicting theories about what is best or what works in a particular situation. Moreover, what works in one situation or for one condition might be ineffective or even dangerous in another, or when combined with other measures. Common sense approaches may overlook the impact of external factors which may contribute to what is observed. Even in the domain of healthcare, there are gaps in knowledge, theories about how something might work better and ideas for improvement.

As healthcare professionals cannot afford to take risks, research is needed. For clinical drug trials, this is even a legal requirement in that pharmaceutical companies cannot obtain marketing authorisation (i.e. permission to sell their new drugs) until they have proved to the relevant authorities that the drug is safe and effective. They do this by performing a series of clinical drug trials.

Carefully organised and controlled research enables researchers to test and compare different theories and approaches, explore different methods and learn from other people’s experience. It also enables them to rule out or at least consider external factors which might influence their results. For example, before concluding that drinking green tea is good for X, Y or Z, it is important to ensure that the tea drinkers studied do not have something else (i.e. other than drinking green tea) in common such as being more physically active than non-tea drinkers or being vegetarians, which might equally explain the findings.

Another advantage to carrying out research is that for a lot of studies, the findings can be recorded numerically and then statistically analysed in order to determine whether the findings are significant (i.e. the extent to which it can be claimed with a specified degree of certainty that they are not just due to chance). With quantitative studies, the results can usually be generalised to the wider population (e.g. to people affected by dementia, GPs or lay people in general, depending on the group studied). This is because measures would have been taken to ensure that the group of people who took part in the study were, as far as possible, representative of other people in that category (e.g. not all White, highly educated men or women from a relatively small geographical area but rather people who have a range of characteristics that are typically found in the broad group of people that the research is about).

The advantage to many qualitative studies is that they permit an in-depth investigation into a particular aspect of human experience. They give people the opportunity to explain in their own words how they feel, what they think and how they make sense of the world they live in. Whilst it is not possible to make generalisations about a wider group based on a small qualitative study, in some cases the results may be transferrable to other similar situations or groups. However, the advantage to qualitative studies is that they provide rich, meaningful data and insight into the complexity of human experience with all its contradictions, differences and idiosyncrasies. Some address topics which have not previously been researched and may even deal with controversial, sensitive or taboo issues. Some studies also serve to give a voice to vulnerable or minority groups (which is a key feature of advocacy/participatory research).


Who can take part in research?

All kinds of people are needed to take part in dementia research including, for example, people with dementia, members of the general public, providers of social support and health care professionals.

There may be conditions for taking part in a particular study (e.g. based on age, state of health or living arrangements) which are determined by the objectives of the research. Usually, these conditions are justifiable and necessary for the researchers to find answers to their research questions (e.g. in the case of a study into the impact of hormone replacement on the risk of women developing dementia being limited to female participants). However, some conditions are not justifiable and would constitute discrimination. Ethics committees, which are responsible for ensuring that research is fair and right, try to ensure that any conditions or restrictions are justifiable from a research and ethics perspective.

The involvement of people with dementia in research should not be limited to their participation in clinical trials nor to the involvement of people who only have mild cognitive impairment. Whilst there are ethical and legal issues to consider (please see section on consent) and researchers will need to pay particular attention to the possible communication and memory difficulties of the participants, these are not valid reasons to exclude people with dementia from other forms of research. In addition to sharing their personal experience of what it is like to have dementia, people with dementia can be involved in all kinds of research such as studies which evaluate service provision, the development of guidelines, consultations regarding policies and working groups on a wide range of issues such as legislation, ethics, care, stigma and diagnostic procedures, to name but a few. They can also be involved in the planning and organisation of studies, as well as in the analysis and interpretation of the findings of some studies. It is up to researchers to find innovative and creative ways to enable people with dementia to express their views and share their experience.


Benefits of taking part in research

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 a 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 different reasons for wanting to be involved in research and different expectations about what it might bring. Examples include:

  • To contribute towards the advancement of science
  • To take an active role in their own healthcare
  • To help combat feelings of helplessness
  • To do something interesting
  • To exercise their autonomy and take an active role in society
  • To have the possibility to test an experimental drug or access treatment that is not yet widely available
  • To receive high quality, free healthcare from leading experts during the trial
  • To improve one’s own condition, wellbeing or quality of life

Researchers as well as ethics committees are keen to ensure that participants are treated well and that their safety and wellbeing are respected. There are, of course, pros and cons to participating in research which people should consider before agreeing to take part in a study. Some are general and some are linked to specific types of study. However, generally speaking, participating in research should be a positive experience and participants should always be given the name of a contact person whom they can contact should they have any concerns or complaints about how they are being treated or about the study.


Potential risks and burden linked to taking part in research

It is important when volunteering for clinical trials to be realistic about the possibility of the experimental drug proving effective and becoming rapidly available. Researchers are likely to be enthusiastic about their topic of research and expect it to prove beneficial to people with dementia in the long run but research by definition involves a degree of uncertainty (otherwise there would be no need to carry out tests). Most importantly though, the aim of research is not to benefit the participants even though participants often feel that they get something positive out of participating.

In clinical drug trials, for example, whilst the experimental drug may have a positive effect on some research participants, the whole process of drug development from the initial discovery of a potentially effective substance or molecule to marketing of the drug can take several years. Many participants involved in the trial will not even receive the experimental drug (as they will be in the control group which receives a placebo). Some of those who do receive it, may experience unforeseen side effects which may be unpleasant, serious or even life-threatening. In “double-blind placebo-controlled clinical trials” participants do not know whether they are receiving the experimental drug or the placebo. Neither do the researchers until the end of the trial so they cannot inform participants during the trial. This is a careful and strictly controlled procedure and often considered one of the highest quality methods of research but it can be frustrating for some participants.

On the other hand, anti-dementia drugs that are currently available were dependent on people taking part in clinical trials. The continued participation of people with dementia in such trials is essential for the continued development and improvement of drugs to treat and perhaps even one day to prevent or cure dementia.

Some studies may involve a certain degree of inconvenience or burden. Examples include:

  • Having to fill out lengthy forms and questionnaires
  • Having to stay in hospital for a while
  • Having to be available for several visits, perhaps at inconvenient times
  • Having to travel to where the research is being carried out
  • Being observed or monitored
  • Loss of privacy e.g. having interviewers in your home
  • Being asked about or reminded of very personal issues
  • Following strict instructions e.g. with regard to behaviour, exercise or diet
  • Being subjected to various tests e.g. blood tests, scans, computerised tests involving reaction times or memory etc.

The above examples would probably not be disturbing to most people or particularly unpleasant. It is more a question of inconvenience and knowing in advance what is involved so as to be able to choose a study that suits your character and can fit into your daily routine.

Many studies nowadays require participants to have a study partner. This person is asked to accompany participants to meetings with researchers, help ensure that they comply with the researchers’ request (e.g. to do certain tests or report back information) and/or provide information about the participant (e.g. filling out questionnaires about their daily behavior or mood). Often, the study partner is a partner or close friend of the participant and it might be something interesting that they do together. However, that person also has to commit to being involved and is usually considered as a research participant themselves. Being a study partner requires time and effort. The study partner might not have the same level of interest in participating and some may find their involvement a bit of a burden. The need to have a study partner can be an obstacle to people who live on their own or who do not have someone who is willing to do that. Those people may find themselves excluded from research which is an issue that needs to be addressed by researchers .


Is research always worthwhile and how can people find out about the results?

An experimental drug would not have reached the clinical testing phase unless there was already strong evidence to suggest that it would prove at least as good as existing treatments, if not better. Research should always be based on a prior in-depth understanding of the issue to be researched, building on previous research, backed up by sound theories and approved by ethics committees. Research should always be based on questions that are worth asking even if, as in the case of students, part of the aim of conducting the research is to acquire research skills.

Participating in research is always constructive in some way as it adds something to existing knowledge. Even if an experimental drug proves ineffective or results in undesirable side effects, this newly acquired knowledge will contribute towards developing a new, more effective and safer drug. Similarly, finding out that a new or commonly accepted approach to care does not improve quality of life may result in it no longer being used or an alternative approach being investigated and thus benefit the lives of many people.

For this reason, it is important for researchers to document the results of all studies and to make details of the findings publicly available. Researchers are increasingly being encouraged, in some cases obliged, to make the findings of their research available, not only in peer-reviewed scientific journals but also in places that are accessible to a broader audience. Many research funders now require researchers to publish in open access journals which do not require access to university libraries or require expensive subscriptions. Researchers are also increasingly encouraged to keep research participants and those involved in Public Involvement informed about how the research is progressing and the overall results at the end of the study.