In spite of increased calls for people with dementia to be directly involved in research, why is this still such a challenge in 2020? And what can we do about it?

Andrea Capstick and Mary Njoki share some examples from their own research.

In recent years, there has been a lot of emphasis on the need for direct involvement of people with dementia in social research.  People with dementia themselves have been stressing this for some time now, as well as research funding bodies. Calls to hear the voices of people living with dementia grow ever louder; for example Alzheimer Europe (2019) recently published a report which calls on the research community to increase the inclusivity of dementia research and the diversity among those who are approached to participate. Yet the obstacles to doing this in the field seem to become greater over time rather than reducing.  There are a number of reasons why – ranging from problems with ethics clearance, to protective ‘gatekeepers’, and the continuing social isolation of some groups of people with dementia.

In this blog we look at a few examples from our own recent experience:

Andrea: I’ve had problems getting participatory research with people living in long-term care past a Research Ethics Committee (REC). RECs are there to protect the interests of people considered vulnerable, but they often do so by depriving those whose voices are already silenced of the opportunity to participate in research. Richard Ward and Sarah Campbell describe this increasingly regulatory role played by ethics committees as ‘ethics creep’. We were told, for example, that we could only record film footage of people with dementia if it wasn’t shown to anyone outside the research team, even if the people living with dementia had capacity to consent to their images being used. The problems don’t end when you get ethics approval, either.The lengthy information sheets the REC insisted on were confusing and led to some participants being unable to consent for themselves, although they could easily do so when simpler explanations were used.

Mary:  It’s harder to recruit from groups that are already marginalised. BAME groups are a small population here in Scotland and especially those with dementia.  Many BAME people don’t access dementia services, so my research aims to explore some of the challenges, barriers and benefits for BME people with dementia in Scotland accessing Direct Payments. It became apparent that there were various challenges recruiting the participants I was seeking, both carers and people with dementia.  I negotiated informal access with an organisation that works with BME people with dementia and especially those using Direct Payments.  However, the organisation went through major organisational changes and they were unable to honour my request. Some organisations suggested it was due to stigma linked to dementia and some communities linking dementia to mental health which can then be linked to shame.

Andrea:  There are often problems with gaining access to people living with dementia, because it’s necessary to go by way of one or more ‘gatekeepers’ first. Sometimes this is someone who provides or manages a service, and sometimes it’s a family member.  The research community itself has to accept some responsibility for this. There is still a tendency for research on dementia to talk about ‘people with dementia and their carers’ as though they are a single unit; as though people with dementia don’t have any independent identity and can’t be recruited without their family’s approval.  What about all the people with dementia who are single, live alone, or who don’t want their family members to be reinvented as ‘carers’ just because they have this diagnosis?  As Mary says, BAME groups, are one under-represented group, but there are many others, including people living in poverty, prisoners, refugees, those who live in care homes, and people with learning disabilities, to name but a few.  These voices are almost entirely missing from research at present, and yet they make up large numbers of the population with dementia.

Mary:   I’ve been told that there is sometimes a distrust of researchers for failing to report back or carry out suggested changes. The lack of action, feedback, or benefits from participation discourages some people taking part. Some community leaders and BAME organisations’ directors advised that I needed at least a year to gain trust because many people have previously been let down by researchers or services. Many felt that they get asked to contribute to research and then no action is taken and they do not see any benefits in their participation.

This last point again emphasises the need for greater reflexivity among dementia researchers.  The way we approach people with dementia should address ethical issues (both methodological ones and those related to social inequalities) wherever we can.  We should not be causing ethical problems through the research we carry out. This means having ongoing reflection and debate within the research community about the ways current discursive regimes on ethics can actually work to objectify and marginalise people with dementia still further. The ethics of research recruitment therefore needs to be part of our critical dementia studies agenda.

So what can we do about it?

It’s clear that this situation shouldn’t be allowed to continue.  So what can we do as researchers (or as potential research participants) to ensure that the voices of people with dementia are heard in research? There are some practical steps:

Explore other recruitment methods:

Go to the places where your target group usually spend their time. Mary designed a leaflet that could be circulated and put up on notice boards. She called and emailed many organisations and visited some in person. She contacted community centres and places of worship, and attended several events that targeted BME people.

Be flexible:

Inclusion criteria can often be made more flexible to increase the potential for recruitment. Mary changed her research to include the whole of Scotland rather than just one city. She also decided to recruit people who met any two out of her three inclusion criteria; for example, someone of BME background with dementia but not using Direct Payments was included, as were non BME people with dementia who used Direct Payments.

Think again about how many participants you actually need:

It’s better to have in-depth information on a few people than superficial information on a lot. Mary decided to collect in-depth case studies of two BME people with dementia, instead of the 10 originally planned. These case studies will fit well with her narrative research. The stories of the two people will complement the findings from stakeholders and practitioners.  Andrea made ‘pen portraits’ of all people with dementia who met her inclusion criteria in the care facility where her research took place, including the reasons why they did or did not eventually take part.

Allow plenty of time to gain trust:

Mary says: ‘I have learned that when recruiting BME people with dementia you need time because the recruitment takes longer. Attending BME events was helpful in meeting the managers in person and discussing my research. They seemed more willing to engage after meeting me especially if I was introduced by someone they already trust.’

Develop critical methodologies

When people with dementia are recruited to research it is very common for a narrow range of data collection methods to be used, typically interviews, questionnaires, observation and surveys.  These methods are rarely suitable or pleasant for people with dementia to participate in. Often they exacerbate the difficulties a person may already experience with memory, comprehension or language.  Yet there is a wide range of more creative methods that can be adopted (and adapted) in order for people with dementia to participate in research in ways that are meaningful, enjoyable and enable their voices and experiences to be heard.  Researchers need to develop their own skills and knowledge around participatory methods such as: storytelling, photo-elicitation, walking interviews (or ‘go-alongs’), body mapping, sensory approaches and collaging, to name but a few.

Keep looking for ways to hear these vitally important voices – people with dementia want to take part and our research is not the same without them!

A person living with dementia who Mary interviewed several times told her the only people he sees are his family and carer, and it was good to have someone to tell his story.  He looked forward to their meetings and wanted to have lunch together.

Although we can always find practical ways of improving recruitment and making involvement more authentic, the under-representation of people living with dementia in research is a political issue which calls for a wholesale re-imagining of what such research is intended to be about.  If you have experienced similar problems with ethics approval or recruitment, let us know.

Andrea Capstick is a Senior Lecturer in the Centre for Applied Dementia Studies, University of Bradford, UK and Mary Njoki is a PhD student at the University of Stirling.