Busy, noisy, and unfamiliar

Jo Thompson Coon is Professor of Evidence Synthesis and Health Policy at the University of Exeter Medical School. As a methodologist she applies her skills and expertise in producing systematic reviews and evidence syntheses to a range of topic areas to inform policy and practice. She recently led a large evidence synthesis project to support improvements in the experiences of care for people with dementia in hospital, and their families and the hospital staff who care for them.  Her twitter handle is @JoG13. You can follow her team @EvidSynthTeam. She will be speaking at the upcoming BGS Autumn Virtual Meeting which is being held from 25 to 27 November 2020.

Busy, noisy, and unfamiliar. Hospitals can be frightening and disorientating for people living with dementia who describe not being sure where they are, why they are there or what is happening around them. Likewise, admission to hospital of someone living with dementia is often upsetting and stressful for family and friends, dealing not only with the worry and concern of the illness/injury but also witnessing their loved one struggling to cope with the heightened disorientation. Furthermore, people living with dementia often experience difficulties in communication which can result in the expression of fear and insecurity through behaviours such as refusing medication, challenges with washing and toileting, repeated vocalisation, wandering and/or aggression making it challenging for hospital staff to provide care.

What happens in hospital can have a profound and permanent effect on people living with dementia and their families, not only in terms of their inpatient experience, but also their ongoing health and the decisions that are made about their future.  Experiences of hospital staff can also be difficult and unrewarding and lead to stress and burnout.

Improving the experience of care for people living with dementia in the hospital setting is a key component of dementia research priorities and national policies. For example, NHS England/NHS Improvement is committed to supporting the Dementia 2020 Implementation Plan and the Dementia Friendly Hospitals charter of the National Dementia Action Alliance. The Welsh Government’s Dementia Action Plan 2018–22 emphasises the importance of providing high quality dignified care for people with dementia.  The 4th National Audit of Dementia Care in General Hospitals, published in 2019, reports improvements in some areas but the best ways to improve the experience of care for people living with dementia, their families and the staff that care for them are clearly not yet well understood.

In February 2018, we began an extensive synthesis of quantitative and qualitative evidence, funded by the National Institute of Health Research (NIHR) Health Services and Delivery Research (HS&DR) Programme.  Our aim was to bring together the existing high quality evidence in three reviews to better understand the issues that impact on the experience of care in hospital from the perspectives of people living with dementia, their families and hospital staff. What has been tried to improve the experience of care? Do these things work?  Are they value for money? And what do people feel about them?  Our reviews show that the experience of care in hospital for people living with dementia is a dynamic process, being impacted at any one time by a complex range of personal, institutional, and environmental factors.  Despite the intent to deliver person-centred care and armed with the knowledge of how important this is particularly for people living with dementia, this is still not happening consistently across hospital care. The effect of this is a poorer experience of care for people living with dementia and their carers, and a detrimental effect on staff emotional well-being as a result of not being able to give the care they strive to provide.  I look forward to discussing these findings further in my session at the BGS Autumn Virtual Meeting and sharing the 12 institutional and environment practices and processes (the DEMENTIA CARE Pointers for Service Change) that our project team believe warrant consideration for those aiming to improve the experience of care in hospital for people living with dementia, their carers and staff.

Register for the BGS Autumn Virtual Meeting 2020, 25-27 November 2020.