Step 1: Referrals/case finding
Referral criteria for the service are based on the presence of a diagnosis of moderately severe or severe dementia as classified on the Global Deterioration Scale stage 6 or stage 7 plus at least one of the following criteria:
- the patient needs a more palliative approach to their care and the clinician would not be surprised if the patient were to die in the next 6–12 months
OR there are
- recurrent infections, significant weight loss and poor nutrition level, recurrent fevers, pains, falls, severe pressure ulcers that are not easily amenable to treatment, severe physical frailty
OR the patient has
- severe, persistent distress (mental or physical) that is not easily amenable to treatment OR another condition (eg, co-morbid cancer) whose co-existence with dementia means that more intrusive treatments would be less appropriate.
Staff in the Oxleas service use a mixture of case finding and referrals to locate appropriate patients. Community matrons identify relevant patients from their caseload; the consultant psychiatrist and APN see patients through their work with the community mental health team and can bring these cases to the dementia service.
Referrals are made by email, telephone or face-to-face contact and are accepted from APNs, CPNs, psychiatrists, GPs, district nurses, continuing care nurses, hospices and mental health wards.
Steps 2–7: Care planning and care co-ordination
There is no standardised care package for patients with advanced dementia and other complex needs; care is tailored to each person based on their primary need and the range of services available locally. As the disease progresses, their needs are re-assessed and the care package is adjusted accordingly, for example, increasing the number of visits from a paid carer to help with washing or cooking.
Steps 2–6 can be divided into two elements: the care assessment function and the care co-ordination function.
On identification of an appropriate patient the psychiatrist and a specialist nurse jointly visit the patient’s home to conduct an initial care assessment led by the psychiatrist.
The care assessment identifies the mental, physical and social needs of the person. It covers a wide range of topics including a full medical and psychiatric history, personal and social background, current medications, existing care package, equipment needs and end-of-life/spiritual wishes. A quality of life assessment ascertains their mental state and ability to carry out daily activities such as washing and dressing. This is followed by a needs assessment drawing out medical, psychiatric, sleep, nutrition and hydration, swallowing, mobility, continence and pain requirements. The carer undergoes an assessment to determine their financial situation, health status, mental state and quality of life, with levels of stress measured.
The patient is discussed at a weekly multidisciplinary team meeting, and a named care co-ordinator is nominated based on the patient’s prevailing needs – physical, mental or social care.
Following the meeting, a personalised care plan is produced with detailed action points. This is sent to the patient’s GP and copied to the patient/carer.
The care co-ordinator oversees delivery of the care plan, conducting ongoing assessments and setting up a schedule of home visits with the family, liaising with relevant services and attending case conferences. Any changes to medication or the status of the patient prompts a follow-up letter to inform the GP.
Once the patient’s and carer’s immediate needs have been met, the care co-ordinator visits the patient regularly as arranged with the carer. If a crisis occurs, they will try to visit on the same day. Although the service is available Monday to Friday, 9am to 5pm, staff are flexible and can usually be contacted by phone outside those hours. If the care co-ordinator is not available, carers are advised to contact the district nurses or failing that to seek help from the emergency services. In the event of a hospital admission, the care co-ordinator liaises with hospital staff to input into discharge assessment and planning.
Patients on the service are rarely discharged, remaining on the caseload until they die or are admitted to residential care. In their last days and hours of life the district nursing service provide direct care. Following the patient’s death, the care co-ordinator can provide bereavement support to the family.
See more of our work on co-ordinated care
- Read the full case study on Oxleas Advanced Dementia Service
- Watch our video to find out more about Oxleas Advanced Dementia Service's approach to care co-ordination
- Read the Oxleas Advanced Dementia Service patient stories
- Find out more about the project: Co-ordinated care for people with complex chronic conditions