Contacts
Contact:
Hannah Jacobs
Project Lead
Organisation:
Jewish Care
London United Kingdom
Contact:
Gill Livingston
Professor of Mental Health of Older People
Organisation:
Mental Health Sciences Unit
University College London United Kingdom
Contact:
Eleanor Lewis-Holmes
Mental Health Sciences Unit
Organisation:
UCL
London United Kingdom
Contact:
Jackie Morris
Honorary Research Associate
Organisation:
Faculty of Biomedical Sciences
University College London United Kingdom
Email:
Case study:
22 February 2012
The End of Life Care in Advanced Dementia project
Key points
- A project offering extra training and support for care home staff looking after residents with advanced dementia has boosted confidence and skills and led to improved care
- The End of Life Care in Advanced Dementia (ELCAD) project lasted three years and was based in a 120-bedded Jewish Care nursing home
- Following the intervention more residents died in the home than previously and their quality of life was higher. More people also had advance wishes in place
- Staff said they felt more confident about providing end of life care and better able to identify and treat distress.
In 2008 the King’s Fund agreed to fund a special project to support and train Jewish Care nursing home staff caring for residents with end stage dementia and their families. The project was done in collaboration with University College London Department of Old Age Psychiatry.
Dementia is associated with a variable, shortened life expectancy. Many people with dementia and their relatives would prefer them to die at home rather than in hospital. However, many with advanced dementia die without these wishes being made explicit. The project aimed to increase the number of residents with dementia receiving their end of life care in the home and to improve their quality of life.
The End of Life Care in Advanced Dementia (ELCAD) project lasted three years and was based in a 120-bedded Jewish Care nursing home where residents were cared for by a multi-cultural staff.
Before the intervention took place all consenting staff completed questionnaires about job satisfaction and stress and participated in a qualitative interview focused on end of life care, decision-making, staff support and personal feelings around residents’ deaths. Meetings were also held with members of staff, local GPs, hospitals and the local hospice.
The intervention itself involved all staff receiving 10 interactive and supportive training sessions from a consultant physician, other senior staff and the home manager. The sessions were designed to complement the Gold Standard Framework sessions given to all the home’s managers.
The trainers encouraged participants to start expressing their concerns and feelings as well as discussing taboo subjects using case studies and scenarios from real end of life situations. This helped them to develop language to support difficult conversations, advising and helping the resident and relative as well as to start feeling confident about delivering end of life care. Each session was evaluated with feedback providing prompts for developing the following sessions.
The training emphasised the importance of preferred place of care and of having difficult conversations with a proxy or lasting power of attorney for residents who lacked capacity. Participants were also encouraged to practise structured listening, observation, kindness, empathy and compassion.
Sessions on the physical as well as behavioural aspects of advanced dementia were included and staff were taught how to use pain assessment scales with people with dementia. The importance of teamwork and effective communication was also highlighted.
In addition a short 2-3 hour session was held to train nurses and some managers on advance wishes and decisions or conversations about cardiopulmonary resuscitation. Once the course had finished staff met with families to discuss and plan medical treatment and preferences, resuscitation status and preferred place of care and death.
All staff who participated were then asked to complete the same quantitative measures and a similar qualitative interview as before the intervention to see how the training had affected perceptions of end of life care and practice within the home.
The preliminary results have been encouraging. Following the intervention staff psychological job demand scores significantly decreased. A higher percentage of residents died in the home and fewer in hospital and their quality of life was higher before death compared to before intervention. More people also had advance wishes in place than before the training.
As a result of the training staff felt more confident holding difficult conversations, which included advance wishes and decisions around whether to attempt resuscitation. They were less worried about blame, feeling confident that they were following advance wishes. They also became better at identifying and treating distress and able to reflect on care at handovers. They were more aware of the GSF and coding of residents’ condition. Staff also thought that the training had led to improvements in the care in the home.
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