UNIVERSITY researchers in Bradford are rolling out a survey UK wide to help them understand what kind of support would best ease the burden for dementia carers.

Dr Sahdia Parveen, who is leading, the research said: “Caring for people with dementia is mainly done by family members, yet how many feel obliged, rather than willing, to do so? This is the question we are posing.”

The research team wants to know how strong family ties and obligations actually are and how willing people feel to carry out the different aspects of caring, from offering comfort when a relative with dementia is upset to personal care such as cleaning up after incontinence.

The survey, at bit.ly/caregivinghope and being funded by The Alzheimer’s Society, has now moved into a second stage where the survey is targetting adults with no prior experiencing of caring. In its first stage it surveyed more than 600 people caring for a relative with dementia and found that even among those already carrying out the role, many did not feel prepared for all it entailed.

Findings will be used to develop support packages for family carers to help them feel ready for the different stages of dementia.

“With the UK set to have more than one million people with dementia by 2025, more of us will be asked to take on this responsibility – so the latest phase of the survey is targeting adults with no prior experience of caring,” said Dr Parveen.

Questions are also being asked how prepared people feel to take on a caring role, in terms of their skills, knowledge and confidence and whether a choice to become a carer is made freely.

“There’s a complex relationship between the different aspects we cover in the survey, which we need to fully understand to be able to give carers the support they need. For example, when people provide care for a parent or grandparent because of an expectation to do so, this can negatively impact on both their own health and wellbeing and that of the person they’re caring for. And even when people are willing, if they don’t feel prepared or supported, that also can have a very negative impact,” said Dr Parveen.

Dr Parveen said: “At the moment, support tends to only step in at times of crisis, but what we need is a more proactive service, that ensures a support net for carers, to reduce those crisis points. We also need to try and better prepare those first taking on caring responsibilities, to reduce the problems they face in the future.”

And Dr Doug Brown, Director of Research and Development at Alzheimer’s Society, said: “Too many people are forced to give up everything they own in order to care for their loved ones living with dementia. Our recent investigation reveals that the typical person’s bill for dementia social care would take 125 years to save for.”