Join Dementia Research: an Occupational Therapist’s viewpoint
Carol Duff has worked as an occupational therapist at the NHS for over 25 years. During that time she has supported many people experiencing the process of receiving a diagnosis of dementia.
Occupational therapists like Carol work with individuals living with dementia and their caregivers to explore how memory changes affect function. They then present ways to improve or maintain independence and safety. These range from continuing to prepare meals in one’s own kitchen, to supporting and maintaining a job, to continuing hobbies.
Many people living with dementia find receiving a diagnosis very difficult. Yet, starting a conversation about the possibility of participating in dementia research, which may aid them or others with the same experience in the future, allows people living with dementia to have purpose. It offers hope that things can be different.
Of course, not everyone living with dementia will want to take part in research. However, the diagnosis of dementia also affects the family of the individual, who can feel powerless. Offering the family opportunities to participate in research also helps them feel like they can make a difference.
Starting the conversation
Carol offers the following advice to healthcare professionals who might feel apprehensive about discussing research options with people living with dementia:
“Don’t be afraid of having the conversation, but consider the timing on how that person may be feeling. It may surprise you who would like to be involved; we often make assumptions that people wouldn’t want to be involved. It sometimes helps to leave some information for people to consider and then we follow up later. We also have to be respectful that people may choose not to be involved, yet we can still explore the involvement of families and carers.”
Join Dementia Research is a service that connects participants interested in research with the researchers. Carol has also used Join Dementia Research as a Principal investigator to successfully recruit participants for several studies. Historically, studies that have been smaller due to difficulty in recruiting participants has led to less significant outputs. This is a very important consideration, because organisations like the National Institute for Health and Care Excellence, who drive the provision of quality services, need substantial evidence in many areas of practice, which is currently lacking.
Carol advocates the use of the Join Dementia Research NHS toolkit, which has a great range of examples and resources, as a guide for services wanting to promote Join Dementia Research as part of clinical work. She hopes implementing Join Dementia Research into NHS care pathways will lead to people being routinely asked about their willingness to be involved in dementia research.
To learn more about how occupational therapy can help someone living with dementia, please visit the Royal College of Occupational Therapists website. To learn more about supporting the implementation of Join Dementia Research into NHS care pathways, please see the Join Dementia Research NHS toolkit.