For the past 15 months we’ve been working to bring together the evidence on the experience of care for people with dementia in hospital and how we can improve that experience. We’ve been looking at the perspectives of people giving (hospital staff) and receiving care (people with dementia and their friends and families).
This project, which is funded by the NIHR, aims to address a question that originated from discussions with former carers of people with dementia. These conversations provide powerful inspiration for us to ensure that our report makes a difference and doesn’t just end up on a dusty shelf.
As we enter the final few months of the project we’ve been spending time talking to people involved in all aspects of providing care for people with dementia in hospitals. We’ve discussed the early findings, whether they resonate with the dementia care community and explored their implications within the context of the real-world experiences of receiving and providing care.
We’ve talked to hospital-based nurses, Admiral nurses, memory service nurses and managers, community hospital nurses, joint commissioners of dementia services, general practitioners, people from Public Health England South West, the NHS England national dementia policy team, the regional NHS England dementia improvement team and Health Education England, the NHS England End of Life lead for the South West, voluntary services including the British Red Cross, third sector organisations such as the National Dementia Action Alliance and the Alzheimer’s Society and former carers.
People have been extremely generous with their time, welcomed us into their meetings and provided us with great platforms for discussion. One of the recurring themes throughout has been that care matters and people are working in many different ways to improve the experience of care for people with dementia in hospital. But it isn’t easy. Sadly, much of what we see in the literature about the challenges of providing person centred care within the hospital environment have not been a surprise and are part of the everyday experience of individuals working in this area.
We’ve been asking people ‘What needs to change to improve the experience of care for people with dementia in hospital?’ Some of the ideas that have been discussed include:
- The need for consistent senior leadership within the hospital
- A recognition that it is the small things that can really make a difference and often these don’t take any additional time
- Introducing a person centred approach throughout the hospital – not only for staff-patient relationships but for all relationships (e.g. staff-staff, staff-carer) starting with the most senior of staff
- Providing education may not be enough, especially when training is restricted to online learning
- The importance of supporting the person with dementia’s family and friends – people from varied backgrounds and with varied levels of understanding of dementia – and hence with a variety of needs
- A change in culture is necessary – with senior staff leading by example
- How can the voluntary sector be more involved?
- A recognition that improving the staff experience of providing care for people with dementia may in turn improve the patient’s experience of care and hence lead to better outcomes for all
Many of these ideas are supported by our findings which is reassuring. It is also heartening to see that our findings resonate with the National Dementia Action Alliance Dementia Friendly Hospital Charter which although widely adopted by acute hospitals across the UK is not, as yet, evidence-based.
But we’re not finished yet – we’ve set up a Caring About Care Discussion Forum to continue these conversations – please do join us. We need your help to develop useful and usable evidence based ‘Pointers for service change’ or ‘Top tips’ for the final report – because what matters to you, really does matter to us.