Caring about Care – Improving the Experience of Care for People with Dementia in Hospital

Background

Hospital services are inherently geared towards fast and effective responses: assessment, diagnosis, intervention and discharge. Services run on the assumption that patients will be able to express their wishes, acknowledge the needs of other patients, and move through the system as required.

However, for people with dementia, particularly when they are ill or have had an accident, hospital settings can be confusing, challenging and overwhelming. This can further impact their well-being and the ability to optimise their care. Furthermore, what happens in hospitals can have a profound and permanent effect on individuals 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.

Read the Plain Language Protocol Summary (PLPS) here.

Aims

The aim of this research project was to support improvements in the experiences of care for people living with dementia in hospital, their families and the hospital staff providing care, through the use of evidence synthesis.

The project consisted of three systematic reviews which explored:

• The experience of care in hospital
• The experience of interventions to improve care in hospital and
• The effectiveness and cost-effectiveness of interventions to improve the experience of care in hospital for people living with dementia, their carers and staff.

Review methods

We conducted two systematic reviews of qualitative research evidence about the experiences of people living with dementia, their carers and the staff that provide care in hospital- the first focussed on the experiences of care in hospital and the second on the experiences of interventions aiming to improve the experience of care. We also conducted a systematic review of the effectiveness and cost-effectiveness of relevant interventions. We then brought together the findings from the three reviews in an overarching synthesis.

We wanted to ensure that our findings make sense to those who could use them to bring about change for people living with dementia. We, therefore, discussed the findings with prior and current carers, health care practitioners, commissioners and researchers via a mixture of face to face discussions with individuals and groups to achieve a widespread distribution of different views and experiences. Together we developed 12 DEMENTIA CARE pointers for service change: key institutional and environmental practices and processes that could help improve experience of care for people living with dementia in hospital.

Dissemination

It is important that the findings are readily available to the people for whom they are relevant. This includes: people living with dementia, their family and carers, hospital staff, health and social care commissioners and the third sector. We are using different methods of dissemination to target different audiences.

• We  worked with an artist to create a visual representation of the 12 DEMENTIA CARE pointers for service change as an A5 booklet which we presented at the Alzheimer’s Association International Conference, the Society for Social Medicine and Population Health Annual Scientific Meeting and the British Geriatric Society Autumn meeting.

• We produced a Main report, available in the NIHR Journals Library and a Briefing Paper summarising the main findings.

• The findings from our work were used to support the British Geriatric Society Position Statement on Person Centred Acute Hospital Care for People with Dementia.

• Sue and Julia spoke about their involvement in Caring about Care, alongside Dr David Lywellen, on BBC Spotlight.

• We have also published papers in peer reviewed journals (see below).

Conference Presentations

• Improving the Experience of Care for People with Dementia in Hospital: Synthesis of Qualitative & Quantitative Evidence

(British Geriatric Spring Meeting, April 2019)

• Improving the experience of care for people with dementia in hospital: Synthesis of qualitative and quantitative evidence, development of a logic model and co-production of plans for practice change

(Alzheimer’s Society Conference, May 2019)

• Improving the Experience of Care for People Living with Dementia in Hospital: Synthesis of Qualitative & Quantitative Evidence

(Alzheimer’s Association International Conference, July 2019)

• Improving the experience of care for people with dementia in hospital: Synthesis of qualitative and quantitative evidence, development of a concept model and co-production of plans for practice change

(Health Services Research UK Conferences, July 2019)

Blogs

• Our reflections on the British Geriatric Society Spring Meeting 2019 where we presented early findings from the project – Tri yn mynd ar antur yn y gwanwyn
• Our reflections on the Alzheimer’s Society Meeting where we presented early findings from the project in May 2019 – Cricket bats and conversations
• Sharing thoughts on our early findings and asking for feedback – What matters to you matters to us