The Advocare survey of carers' experiences: some of our findings
By listening to carers we were able to ascertain the factors that helped them most and what were their greatest unmet needs. Twenty-four carers were interviewed in the Dorset area, nine were male and fifteen were female, and of these, twelve were currently looking after loved-ones and twelve were former carers. Fourteen of the people being looked after were suffering from dementia. The majority of carers were looking after their spouses. Four carers were looking after their parents and three were caring for their sisters. The following are some of our findings.
- The majority of carers looking after those with dementia said they depended on reliable, good quality respite which gave them a true break. One carer described respite as "her salvation".
- Some carers felt they needed advocacy when dealing with unwelcome decisions made by social workers and doctors, especially consultants.
- District nurses were generally seen as helpful but some carers felt they were not listened to by other health professionals.
- Some carers felt that diagnoses and care pathways were not made clear to them.
- With a few exceptions GPs were seen to be lacking in understanding of both the carer's and the patient's situation and to be working in isolation from the care networks that could be helpful to them.
- Communication between GPs and hospitals seemed poor.
- Some carers were upset at not being informed or consulted about discharge arrangements for their loved-one.
- Some carers felt their loved-ones were not safe in hospital.
- There were dissatisfactions expressed about some home care services in the private sector.
These findings appear to back up published research and along with insights from my own and other carers' experiences they formed the framework for the Advocare Caring for Carers service.