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

Problem

The day-to-day care of people with dementia is often undertaken by an informal carer such as a family member or friend. Research has shown that often such carers receive little support or information on dementia and thus 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.

Approach

We employed a qualitative design and thematic analysis using a framework approach. The study involved focus groups with informal carers, people with dementia and healthcare professionals working with both. Recruitment took place in Lincolnshire through support groups, the University of Lincoln, and the Healthier Ageing Public and Patient Involvement (HAPPI) group for carers; and through general practices and the Lincolnshire Partnership Foundation NHS Trust for healthcare professionals.

Findings

We interviewed 17 carers, three patients with dementia and 16 healthcare professionals. 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 healthcare professionals lack knowledge about and understanding of dementia; and a need for education of carers around dementia that is not being met. Both carers and healthcare professionals 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 healthcare professionals were also worried that keeping such diaries might be an extra burden and cause of anxiety for the carers.

Consequences

Carers of people with dementia report a higher need for information and holistic, more structured support from health and social care services, which are not currently provided. Offering carers the support they want and need could alleviate their caring burden and improve their and their care-recipients’ well-being; this should be the focus of future intervention development and testing.