Do General Practice Nurses have a leading role to play in dementia care?
If so, what should it look like and will it work for patients, their families and General Practice in terms of being sustainable and transferable?
Personal issues, professional frustration and a spark of inspiration from seeing a carousel clinic in action led me to ask these questions and so Mission Dementia began. It has been an exciting journey and a source of great joy and laughter, coming from a place I least expected to find any.
What does the current dementia pathway look like?
From the diagram: Dementia Care Pathway Slides , we can see that from diagnosis to a trigger event, nothing much happens in General Practice other than the annual dementia review, which tends to be a rather vague event leading to a reactive rather than proactive service. The white space is filled by the voluntary agencies and these vary across the country and are subject to lengthy re-tendering processes, which leads to inconsistency and fragmentation.
Our starting point was to re-organise our dementia reviews. We set aside two afternoons and invited all our patients with dementia, who were not in long term care, along with their families and carers to attend the surgery for a review. The General Practice Nurses did the initial part of the review followed by refreshments in our health education room, providing an opportunity to introduce our patients and families to the voluntary agencies who supported us. There was a real buzz in the room, with lots of chatter and laughter and the voluntary agencies were inundated with requests for information and support. The patients and their families really valued the peer support and asked for an opportunity to continue meeting.
As a direct result of this, ‘Kim’s Café’ was established. Essentially it is a memory café supported not only by the voluntary agencies but with a direct link to the Practice. Meetings are held monthly with either an information or fun session and plenty of time for people to chat amongst themselves.
As a nurse working in General Practice I attend and it has been a useful way of keeping people on the radar. Seeing people over time in a relaxed setting makes it easier to spot subtle changes in patients and pick up on signs of carer stress. These issues can be dealt with promptly rather than being ignored until there is a crisis. If all the people who attend the café needed an appointment, it would be impossible to accommodate them, but seeing people in a group setting monthly makes it possible.
Following up people who stop attending has been a useful way of identifying those who are reaching a tipping point.
The café is now in its second year. During this time, we have supported carers through living grief and bereavement and many carers continue to attend the café to support others even though they are no longer in a caring role themselves.
We arranged a stakeholder meeting that included patients, carers, secondary care and the voluntary agencies to see how else we could improve the service and we were awarded a quality improvement grant from HEE Wessex to help with this.
Our Practice aim was to take ownership of dementia care from pre-diagnosis to end of life, leading and co-ordinating the complex care required to manage this life limiting illness. Our objectives were as follows:
- maximum return for minimum efforts
- increased prevalence rates
- enables effective care planning involving the patient and their family in decisions
- potential for standardized and improved care nationally
- builds links from general practice, with the community and secondary care, breaking down disconnects in the care pathway
- proactive care reduces emergency consultations and admissions
- it meets criteria set out within the NHS Long Term Plan and The Prime Minister’s Challenge
The success of Mission Dementia is dependent on creating a robust pathway:
- memory testing
- a ‘go to’ person in the surgery
- review patients with MCI annually
- review patients within 1 month of discharge for OPMH
- review patients discharged from hospital within 1 week
- annual Dementia review
Memory Testing in the surgery needs to be done in a consistent and sensitive way as it will be a time of great worry for the patient and their family
Having a ‘go to person’ in the surgery has been invaluable in co-ordinating care. Strong links have been built with Older People Mental health teams and the voluntary organisations, enabling care to be co-ordinated and avoiding duplication.
Reviewing people diagnosed with Mild Cognitive Disorder enables a prompt diagnosis of dementia as symptoms change, and provides the perfect opportunity to support families and initiate future planning conversations.
Reviewing people within a month of a diagnosis of dementia provided the opportunity to work with families to accept the diagnosis and learn how to move on with their lives.
Finally, following people up within one week of discharge from hospital enabled to check services were in place to prevent re-admission and an opportunity to explore trends and themes around unplanned admissions.
The annual dementia reviews continued with the practice nurses using their skills in managing long term conditions, their accessibility, their knowledge of the community and often the patient’s family to deliver care in a person centred, holistic, timely way close to people’s homes.
We all agreed it was important to keep people well but recognised that to live well people with dementia needed to continue to feel valued and engage with family, friends and the wider community.
In the community the memory café continues to thrive.
With support from two local care homes we established dementia film clubs. The care homes welcome people with dementia and their families into the care home to watch a film, enjoy lunch as well as peer support and professional support. These events are popular and have helped address the social isolation that can exacerbate dementia. The other benefit has been breaking down fear about moving into long term care.
Spending time in a care home for the afternoon and meeting staff and seeing the home in action has broken down many of the fears and obstacles that occur when respite or long-term care is required.
A joint collaboration with Hampshire Constabulary has enabled The Herbert Protocol, a missing person initiative, to be set up. During dementia reviews I have been amazed to hear how many times patients have gone missing, fortunately it has been resolved quickly and safely but families are pleased to fill in the Herbert Protocol and know that the Police service have information to hand should their relative go missing.
What does the pathway look like now and what do we still need to do?
What we found was that a memory café linked with the Practice was pivotal in delivering proactive care using a multidisciplinary team and a co-ordinated approach.
Training for General Practice Nurses in dementia is required.
Carer support groups are needed.
A social befriender service is required to support people with dementia who have no friends or family near by and also to support carers who need support to attend appointments to address their own health and social needs.
More research is required into how to prevent avoidable hospital admissions and enable speedy discharge if admission is unavoidable.
The training needs of health and social care staff need to be explored to enable them to support patients and their families, through future planning conversations, to live well as long as possible but ultimately to enable people to die peacefully in a place of their choosing which will help families come to terms with their loss and find closure.
Kim Badcock, Queen’s Nurse