Care home staff and residents need to become more involved in research if the quality of life of people with dementia is to improve, and a new toolkit shows them how they can, says Jill Manthorpe.
Two-thirds of residents in UK care home have some form of dementia. To improve the treatment and care of people with dementia, more research needs to be done on what works. Care home residents are particularly important to include in studies if the quality of life of people in the middle and later phases of dementia is to be improved.
Through the work of the Ministerial Advisory Group on Dementia Research, the Department of Health has been encouraging more research on dementia in England, including research on care practices as well as clinical treatments.
The National Institute for Health Research (NIHR) Dementia & Neurodegenerative Research Network (Dendron) has been working on a project to enlarge the volume, quality and impact of dementia research. A new toolkit, Enabling Research in Care Homes (Enrich), aims to increase the amount of dementia research undertaken in care homes. Other work is taking place to build up local research networks, clarify funding arrangements and to develop research ready care homes.
The focus on care homes has been welcomed by the sector.
“All too often residential care is left out of the research agenda and sometimes this is because residential care services are hostile to research,” says Martin Green, chief executive of the English Community Care Association. “It is for this reason that I’m pleased a very practical and clear toolkit has developed. I really applaud this initiative.”
The Enrich toolkit was launched in January 2012 in the format of a website for care home staff, residents and relatives seeking information about research into dementia, as well as for researchers unfamiliar with care homes or who want to update their knowledge.
As well as providing information, the toolkit outlines the many ways in which people can support research in care homes:
- Care home staff and managers can distribute information about research, or may want to be involved in data collection.
- Relatives can discuss what taking part in a research study might entail for them or their relative.
- Residents can take part in various ways, such as providing their views, agreeing to researchers having access to their personal data, consenting to trying out a new therapy or activity.
The toolkit provides a simple overview of the different types of research, the ways in which care homes can be involved, and what this might mean in practice. It also offers guidance on how to become involved with research, and how to prepare for it. For people who are new to social care, there are explanations of what to expect and how it differs from NHS establishments and cultures.
Across the UK, some care home managers are already engaged in research – despite the fact that they rarely receive the funding to cover their costs that they would if they were in the NHS. Some find that this benefits their staff and residents. The toolkit offers the experiences of one manager who has been volunteering her care home as a research site for some time.
“I wanted to get involved in research as I believe it is good for personal development, as well as service development,” she says. “It’s also good for care home staff to know that people are interested in what we were all about. The toolkit really is a great way of getting care homes involved in that bigger picture.”
The Enrich toolkit was produced in collaboration with the NIHR School for Social Care Research, which is also keen to increase research in social care settings for the reasons that they have often been overlooked and that care practice could be improved by better quality evidence of what works. The SSCR argues that is not simply a matter of increasing research in volume but that the findings have to be useful to the sector, its staff and residents.
Jill Manthorpe is associate director of the NIHR School for Social Care Research and director of the Social Care Workforce Research Unit at King’s College London