Researchers from Keele University and Aston University conducted a study with 185 family carers and found that the majority are unsatisfied with their experience of accessing health and social care services for people with dementia.
Dr Rosie Harding, who led the research at Keele University, comments: “Research into dementia has been chronically underfunded so it’s reassuring to see the government recognising the need to invest in this area. However, our recent research reveals that there is still a lot of work to be done to improve the experience for family carers, who are often left bearing the brunt of dementia because of a lack of support and advice.
“It’s essential that we are not just investing in research into the condition, but actively supporting day-to-day life for people living with dementia and their families. It’s evident that a ‘one-size-fits-all’ approach does not work and in the absence of a miracle cure, the lives of people living with dementia and those who care for them could be dramatically improved by increasing the availability of care, providing clearer information for family carers and creating a single point of contact for each family when accessing dementia services and advice.”
Key findings from ‘Caring for People with Dementia’:
• Many carers have negative views about the system as a whole, expressing difficulties in knowing where to turn or who to contact when they needed help.
• They described the process of accessing health and social care services for the person they care for as a ‘battle’ or ‘fight’, which was more difficult to deal with than the disease itself.
• The majority of carers reported that adequate support is only available at crisis point, when they are no longer able to cope, rather than being put in place and planned appropriately.
• Many felt frustration when services were not ‘joined up’ and when the abilities of the person they care for were underestimated because of their diagnosis.
• Just 8% of those questioned reported that the person they cared for had NHS funded continuing care and self-funded carers reported limited access to social care professionals, services and advice.
• One in four carers have also reported concerns about the negative effects of anti-psychotics on their relatives.