Print This PostCarers are on the front line of dementia care every day, amassing a wealth of experience and knowledge from their day-to-day caring responsibilities. Developing a deep understanding of the challenges, daily impacts, and subtle behavioural and cognitive changes associated with dementia, carers have a practical perspective not always apparent to researchers. Carers understand what is important to the person they support and what they need to live well, feel safe and continue to participate in meaningful activities. Carers also know what they themselves need to effectively support someone with dementia and how these needs may change as the condition progresses, during crises, or with significant life changes like hospital admissions or transitions to different care settings. All of this lived experience generates knowledge which is extremely valuable to research and to shaping the future of dementia care, treatment and services. By sharing their experience and knowledge, carers help ensure that research translates in to real-world benefits for people impacted by dementia.
In other words, carers bring a reality check to research, making their voices in research not just useful, but essential.
There are several ways that a carer can help research and you will often find opportunities that suit varying time commitment levels. Carers can support participation by assisting the person they care for to take part in research, helping to complete questionnaires, interviews, join focus groups, take part in clinical trials or review support tools. In similar ways carers can also share their experiences, which can help to increase understanding and shape support services and tools. Traditionally, these methods are when research happens to or for people. However, increasingly, researchers are doing research in partnership with people. This collaborative approach to research is called Patient and Public Involvement and Engagement (PPIE) – yes, it is a tad wordy! Through PPIE, carers are using their experience to help shape research priorities, influence how research is conducted and improve how we communicate and share research. Carers can serve as links between the scientific community and the dementia community, helping to increase awareness about research opportunities, make complex information more accessible and bridge understanding between researchers and the public. They can also help to make research easier to participate in by addressing barriers to involvement and helping to design studies that fit around needs and capabilities.
That is to say that PPIE builds in the reality check. No amount of clinical or research expertise can tap into real life-experiences. Carers are experts in their own right and that expertise and knowledge cannot be under-estimated. It ensures studies focus on question that matter to people, are easier to take part in, and create findings grounded in reality. Facilitating involvement in this way, I continually see the real and substantial impact carers and people living with dementia have on shaping research and improving how we understand and communicate findings. By sharing their unique insights and experiences, carers are not only participants in providing care, but also co-creators in the path to understanding dementia and improving care.
There are various PPIE activities to get involved in, often flexibly to fit around commitments. Whether through communication and outreach events, sharing experiences, providing feedback on research proposals, or being a co-researcher, the level and type of involvement is in the hands of research partners. In Scotland, the NRS Neuroprogressive and Dementia Network collaborate with the PPIE group, ‘Partners in Research’. There are currently two group types, a dementia group and a Parkinson’s group and they regularly meet with researchers to advise on and co-produce research. They have contributed in many research activities, but some highlights include a co-authored book with Dr Rosalie Ashworth, Challenging Assumptions Around Dementia (available for free download). Another very recent – and soon to be published – example is a Parkinson’s Clinical Trials Guide, co-designed with people with lived experience of Parkinson’s Disease to provide information for people joining a Clinical Trial. Care home research is supported by ENRICH (ENabling Research In Care Homes) Scotland’s PPIE group, Rich Voices, and they have helped create informative videos, co-designed a podcast as well as regularly providing feedback on research proposals.
PPIE is much more varied – and often fun – than the traditional images of research one might expect. Carers often report enjoying being involved in this way, some report gaining purpose and community, or being motivated to create a positive impact out of a difficult experience. Researchers also report positively on working with people with lived experience and find collaborations enrich their research – often wishing they had engaged earlier. As a facilitator and observer of this approach, it’s a thoroughly enjoyable and motivating way to do research. In my view, excluding people with lived experience is as misguided as the days when women were excluded from health and safety research. We now know that ignoring women’s perspectives negatively impacts results, skewing them in ways that aren’t always immediately apparent, leading to medicines treatments and even seatbelts that didn’t fit half the population. Similarly, leaving out the perspectives of carers and people with dementia risks research that may not work in real life, nor meet needs.
Collaboration between carers and researchers is key; working together we can create effective, compassionate and informed dementia treatment, care and support services.
If you’re a carer in Scotland… thinking about participating in research, either as a participant or co-researcher, you can find out more on the Neuroprogressive and Dementia Network website and register to be informed about research opportunities. If you or a loved one is in a care home, visit ENRICH Scotland for information on how to get involved.
Researchers can link up with people with first-hand experience of dementia and care homes via the Networks PPIE group, Partners in Research and ENRICH Scotland’s RICH Voices. It is a great opportunity to engage with stakeholders at the earliest stage of your research planning.
Denise Grassick-Munro
Author
Denise Grassick-Munro is Patient and Public Engagement Officer for the NRS Neuroprogressive & Dementia Network in Scotland. She works to ensure people with lived experience shape dementia and neuroprogressive research. With a background in psychology and science communication, Denise is passionate about collaboration and inclusive research. Outside work, she enjoys music, reading, and spending time with family and friends.
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