Researchers interviewed family members who care for loved ones with dementia to understand the problems they face. Preliminary themes identified included practical issues, the need for clear communication and that carers found the responsibility a heavy burden.
The findings will help shape future research on the challenges faced by family carers. The work, published in BMC Research Notes, is led by Dr Ian Maidment, Senior Lecturer in Clinical Pharmacy at Aston University; key collaborators included University of East Anglia, the NHS, Alzheimer’s Society, the University of Edinburgh and University College London.
The article describes Patient and Public Involvement in developing a research project to understand the views of family carers, including the difficulties and hazards, on their potential role in supporting the medication management of the person they care for with dementia. The Department of Health have stated that to develop appropriate research, the general public and patients must be involved in developing the grant application. This process, as reported in BMC Research Notes, is such an example of co-design with appropriate engagement of the general public in the key area of dementia.
Dr Chris Fox, Reader in Mental Health at UEA and dementia lead of the East of England Comprehensive Research Network, said: “We welcome this as a way to indicate the benefits of partnership in project development to reach real world scenarios so vital to delivering research studies to address care in dementia.”
Barbara Woodward-Carlton, a member of the Alzheimer’s Society Research Network and ex-carer representative for DeNDRoN (Dementia and Neurodegenerative Diseases) Research Network, said: “Many of us had no idea how much we would need to do, understand and how hard and often how bewildering it would be for those we cared for in getting it all together for the best possible results from medication."
Dr Ian Maidment added: "The support from DeNDRoN and the Alzheimer’s Society has been vital in developing this research programme”
Currently, Dr Ian Maidment and other members of the team, supported by DeNDRoN, are pursuing related themes in studies funded by various bodies including the NIHR (National Institute for Health Research), Pharmacy Research UK and Alzheimer’s Society.
Dr Ian Maidment stated: “Family carers have a key role in supporting medication management particularly as the dementia progresses. We need to understand the challenges that family carers face and how healthcare professionals can help.”
1. Perspectives of carers on medication management in dementia: lessons from collaboratively developing a research proposal has been published in BMC Research Notes and is available on http://www.biomedcentral.com/1756-0500/7/463
2. If you would like to interview Dr Maidment please contact Aston University Media Department, or Dr Ian Maidment directly on 07887 983117.