Challenges for carers of people with dementia and their support needs from health and social care providers: a qualitative study.

Introduction The day-to-day care of people with dementia is often undertaken by a family member or friend. Research has shown that often carers receive little support and information on dementia and report lack of preparedness to provide effective care. Our aim was to explore the experiences of informal carers of people with dementia around challenges they face relating to their care-recipients’ dementia and when interacting with the health and social care system. Methods We used a qualitative design and thematic analysis, with an a priori framework approach. The study involved focus groups with informal carers, people with dementia and healthcare professionals (HPs) working on dementia. Recruitment took place in Lincolnshire through support groups, the University of Lincoln, and the Healthier Ageing Public and Patient Involvement (HAPPI) group for carers; through general practices and the Lincolnshire Partnership Foundation NHS Trust for HPs. Results We interviewed 17 carers, three patients with dementia and 16 HPs. The main challenges for carers were: diagnosis of dementia in a timely manner and appropriate treatment for other health issues; not receiving timely information; only receiving written information in the form of leaflets; not receiving the support that they needed from health and social care services; feeling that HPs lack knowledge about and understanding of dementia; and a need for education of carers around dementia that is not being met. Both carers and HPs felt that having carers monitoring the progression of their care-recipients (in the format of a diary) would be helpful for identifying potential triggers for the patients’ behaviour and recording what was going well. However, some HPs were also worried that keeping such diaries might be an extra burden and cause of anxiety for the carers. Conclusion Carers of people with dementia report a higher need for information and holistic, more structured support from health and social care services that is not currently met. Offering carers the support they want and need should be the focus of future interventions, in order to alleviate some of their caring burden and improve their well-being, and that of their care-recipients.