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 being posed by researchers from the University of Bradford, as part of a nationwide survey to understand what kind of support would best ease the burden for dementia carers.
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.
The research team want 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 online survey – at bit.ly/caregivinghope – also questions how prepared people feel to take on a caring role, in terms of their skills, knowledge and confidence. Whether a choice is made freely and how prepared they feel can impact on carers’ ability to cope, says lead researcher Dr Sahdia Parveen.
“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,” she said. “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.”
The team is also hoping to gather responses from different communities, to help identify cultural differences – or lack of them – between ethnic groups. For example, there can be an assumption by healthcare professionals that South Asian communities have closer family relationships, whereas recent research shows that these ties are increasingly loosening, as families become more geographically dispersed.
The survey is part of the Caregiving HOPE research project, funded by the Alzheimer’s Society, which is assessing family obligation, willingness to care and level of preparedness amongst current and future carers. The aim is to improve training for healthcare professionals and ensure the right support services are in place.
The first phase of the research – which surveyed over 600 people caring for a relative with dementia – found that even amongst those already carrying out the role, many didn’t feel prepared for all it entailed. The research will aid the development of support packages for family carers to help them feel ready for the different stages of dementia.
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.”
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 – well over a lifetime – to save for.
“It’s important that we understand how to help people prepare for what would happen if they had to care for a family member with dementia. This research is crucial in allowing us to identify the much-needed support required and improve wellbeing for those people who will find themselves needing to care for a loved one with dementia in the future.”
The survey is online at bit.ly/caregivinghope