Family carers of people with dementia need more help with medication management according to a new report involving the University of East Anglia, which was led by the University of Aston.
Researchers interviewed family members who care for loved ones with dementia to find out more about the problems they face.
Themes which emerged included medication use and the practicalities of administering drugs, as well as communication problems and a heavy burden of responsibility.
It is hoped that findings will help shape future research on the challenges faced by family carers, and lead to better help from healthcare professionals.
Dr Chris Fox, from UEA's Norwich Medical School, said: "It is really important to listen to family members who are caring for people with dementia. They're on the front line in an incredibly difficult role and healthcare professionals can learn a lot from their experiences.
"Many medications have adverse side effects and other problems but little is known about the specific issues related to medication management. We held a focus group with nine family carers to find out about their concerns about medication management.
"For example we heard about how one laxative, which needs to be mixed with water, sets too quickly in a glass to be ingested by someone with dementia. This led to constipation in the patient – which may seem like a minor problem, but actually it entailed emotional and physical distress for both the person with dementia and their carer.
"We heard how male carers can find it difficult to discuss personal care issues, how medication management brings a heavy burden of responsibility, and that carers often silently struggle to cope.
"We also heard about the frustration caused by healthcare workers, pharmacists and clinicians who have little or no understanding about the real-life practicalities of caring for a loved one with dementia.
"What we want to do is design future research projects which focus on the real-world experiences and needs of people with dementia and their carers. This is the first step towards that.
"The prevalence of dementia is growing rapidly. 700,000 people currently live with dementia and it is predicted that this figure will double over the next 30 years. As the condition progresses, people with dementia are increasingly less able to care for themselves making the role of family carers especially important," he added.
The research was led by Aston University with collaborators including the NHS, and the Alzheimer's Society, the University of Edinburgh and University College London.
Dr Ian Maidment from Aston University said: "Family carers have a key role in supporting medication management particularly as dementia progresses. We need to understand the challenges that family carers face and how healthcare professionals can help."
More information: "Perspectives of carers on medication management in dementia: lessons from collaboratively developing a research proposal." Fiona Poland, Sarah Mapes, Hilary Pinnock, Cornelius Katona, Susanne Sorensen, Chris Fox and Ian D Maidment. BMC Research Notes 2014, 7:463 DOI: 10.1186/1756-0500-7-463