CarerCare: Improving Carer Resilience

Unpaid Carers carry over 90% of the social care burden. 
​Maintaining their resilience reduces the demand on the social care system

CarerCare Background

Situation

Improving resilience of carers is often about giving them respite from the need to care 24 hours a day.  This is currently  achieved by giving carers mini breaks e.g. a paid for person attending the person in their care for an hour whilst the carer undertakes activities like education or employment.  Such respite care is costly (£28 per hour).  Carers report that in the majority of cases the worry of caring can be reduced by simply knowing that the person they care for has not fallen into a an acutely unwell condition.  Less than 8% of carers take up breaks as awareness of them is low.  Awareness of other alternatives to improving personal wellbeing e.g. wellbeing apps and internet based peer and guided support is also low amongst the carer community.

Implications

Given that internet and phone access was not a problem for carers they were asked about what type of wellbeing apps and internet based peer and guided support would be most appropriate for them.  This was achieved via user group sessions at carers hubs, online workshops and postal and internet based surveys.  This work highlighted the value of apps that would nudge a carer to log their wellbeing,  look after them selves by moving outdoors or engaging other carers.  The preparedness of carers to share their wellbeing status in a manner that protected their privacy was discussed and agreed with carers and those who would use such data to plan e.g. councils, primary and secondary care practitioners and public health officials.  GP practices and wellbeing practitioners in hospitals saw the greatest value in this data.  GPs agreed to have an app which nudged good wellbeing behaviour & reported progress in a privacy protecting manner: deployed by dedicated GP waiting teams funded by Accelerate Wales.

Problem

Meetings with carers and GPs highlights that 6 months after a person becomes a carer they show persistent signs of anxiety.  Within two years they then enter the social care system because of the effects of social isolation.  If they are unable to cope, this places a major financial burden on public resources.  All stakeholders agree it is worthwhile attempting to help the carer community.  Alas, carers do not self identify themselves, and the social care sector engages less that 10% of the carer community.  However, GPs become aware of 100% of carers.  Staff placed in GP waiting rooms tasked with engaging new and existing carers have been shown to engage 41% of new carers.  Such staff and research report that 82% of all carers are active users of phone apps and the Internet.

Action

Because of COVID people are more aware of the effects of social isolation, and more people are becoming part time carers. 

​The adverse effects of social isolation on mental and Physical health is increasingly documented. 

Carers shoulder 90% of the social care burden and 33% become serial carers if you can keep them well. 

Using the data protecting approach in the CarerCare app (Local Differential Privacy) one can gather the data needed to make effective predictions with AI around wellbeing - without putting individual privacy at risk.