Dementia patients battle to receive proper information

Sep 4 2006

People who suffer from dementia and those that care for them, say they are fighting a constant battle to receive proper information about their condition and its treatment according to new research launched today at the British Pharmaceutical Conference in Manchester.

The situation is so bad that many claim their concerns are often dismissed by health professionals as 'just old age'.

A new study carried out by pharmacists at the University of Bath aimed to explore the attitudes and concerns of people who suffer from dementia and those who care for them, about the medicines prescribed for it. One of the key objectives was to explore whether participants thought they were given sufficient information about medicines prescribed for dementia and its possible benefits or side effects.

The researchers started from the basis that, when diagnosed with any condition, people with the illness and those who care for them generally request further information on the disease, its prognosis and treatment options. If people receive suitable information, that includes an accurate account of the benefits of medicines versus their risks, they can then make an informed decision about whether or not to take a recommended medicine.

The researchers held a series of focus groups and semi-structured interviews as part of a qualitative study based at five local branches of the Alzheimer's Society in the South West of England. The results highlighted some key areas of concern, including:

• People with dementia believe that their symptoms, and concerns about their condition, are often dismissed as 'just old age'.
• People with dementia, and their carers feel that it is often a 'battle' to receive appropriate information.
• They also believe that they are often provided with the wrong information and
• They often feel guilty about continually having to ask for information.

Pharmacist Denise Taylor, who led the research, says that the results are a real cause for concern. "We found that people who take medicines for dementia, and those who care for them, describe an environment where access to information about medicines and carer support seems to be less than supportive," she says.

Denise Taylor goes on to say that perceived misinformation, or a complete lack of information from healthcare professionals, forces people to access other organisations for information, such as support groups or the internet. "This vulnerable population group are often unaware of where and who they can seek help from, but," she explains, "help is at hand."

"This study is part of a larger study that aims to develop a medicines management tool for the prescribing and monitoring of medicines for dementia by pharmacists and healthcare professionals. This would include advice about the type of information that patients with dementia and their carers would find helpful."

According to Denise Taylor it is hoped that the new tool will encourage pharmacists to be more proactively involved in the care of people with dementia and those that care for them. "Pharmacists have a key role to play in providing suitable information to people with dementia and their carers," she says.

http://www.rpsgb.org.uk/