What is the project about?
St Christopher's Hospice, London, appointed an experienced clinical nurse specialist (CNS) to work with people with advanced dementia and their carers, with the support of a palliative medicine consultant.
The CNS played a clinical role, assessing patients and advising on symptom control and palliative care issues. She also mentored carers at care homes and in primary care, alongside providing a more formal teaching programme.
The aim of this was to develop the skills of professionals to recognise and manage the late stages of dementia, including dying, in the belief that this would:
- provide better support to family and carers
- provide care for patients which was tailored to their needs
- enable dementia sufferers to die in their own surroundings, either at home or in their care home.
The formal training programme covered:
- identification of dementia patients needing palliative care
- pain and symptom control
- managing challenging behaviours
- ethical issues
- emotional coping strategies for families/carers
- end-of-life care.
The CNS provided a bridging function for professional carers who might have a background in psychiatric care, but are not trained to recognise and treat physical symptoms, and vice versa.
She co-ordinated community services for families and provided emotional and bereavement support to carers.
The evaluation explored the following questions about the service:
- Is it possible to support carers in the community to enable dementia sufferers to die in their own surroundings?
- What were the palliative care needs of dementia sufferers and their carers?
- Do tools exist to help professionals identify dementia patients who need palliative care?
- What role does specialist palliative care have with this client group?
Key learning points
- 87.5 per cent of patients who died during the project were able to die at home or in their nursing homes, with seven patients dying in hospital.
- The longer prognosis and relatively low complexity of the problems faced by people with end stage dementia requires a different model of care from, say, palliative care cancer patients. Most patients can be successfully managed in a generalist setting with support from a dedicated specialist palliative care CNS. There were no hospice in patient admissions.
- The symptoms that scored the most highly in terms of severity and prevalence were: weight loss, fatigue, weakness, anorexia and drowsiness.
- Pain was also common but rarely complex or difficult to control. However many patients’ pain had remained unidentified and untreated.
- Most pain arose from arthritis, contractures and pressure sores.
- More complex symptoms were present in a small number of patients. The CNS was able to filter these for referral to palliative medicine, old age psychiatry or other specialists.
- Initial findings suggest that The Gold Standard Prognostic Indicators and 'Surprise Question' can enable health professionals to identify effectively dementia patients who need palliative care.
- Many professionals who are managing these patients are not aware of the range of services available and how to refer onwards.
- An integrated approach between mental health for older adults teams, voluntary agencies and specialist palliative care is essential if end-of-life care for this client group is going to improve.
- This model of care provided by a CNS with consultant medical support appears to be an efficient and cost effective way of improving palliative care for dementia patients coupled with ongoing education and mentoring of professionals and support to carers. A more formal economic evaluation is planned in the next phase.
- It is our impression that, in general, dying seems to be better managed in dual registration nursing homes rather than EMI (elderly mentally infirm) homes. This may be due to the nursing staff being trained in the management of both physical and psychological symptoms.
How is the service being evaluated?
Various quantitative surveys have been used, including:
- The Gold Standard Prognostic Indicators and a modified ‘Surprise Question’ were used to evaluate the clinical utility of these triggers to identifying dementia patients who need palliative care
- The Palliative Care Outcome Score for prevalence and severity of symptoms
- The Neuropsychiatric Inventory Questionnaire to explore severity and distress of behavioural/psychological symptoms of advanced dementia for both patient and family carer
- Zarit Carer Burden Questionnaire to explore specific areas of carer burden and overall carer stress
- Satisfaction with Care at the End of Life in Dementia (SWC-EOLD).