Advance Care Planning in Dementia
Award Number
PB-PG-0807-11073Programme
Research for Patient BenefitStatus / Stage
CompletedDates
3 January 2009 -31 March 2012
Duration (calculated)
03 years 02 monthsFunder(s)
NIHRFunding Amount
£232,654.00Funder/Grant study page
NIHRContracted Centre
Northumbria Healthcare NHS Foundation TrustPrincipal Investigator
Professor Dame Louise RobinsonPI Contact
a.l.robinson@ncl.ac.ukWHO Catergories
Development of novel therapiesTools and methodologies for interventions
Disease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 52 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | PB-PG-0807-11073 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20090103 |
| End Date | 20120331 |
| Duration (calculated) | 03 years 02 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | Northumbria Healthcare NHS Foundation Trust |
| Funding Amount | £232,654.00 |
Abstract
Advance Care Planning (ACP) allows people to discuss and document their wishes about their care preferences and any treatments they wish to refuse. It is integral to NHS policy (NHS End of Life Care Programme), but is not yet integrated into clinical practice. ACP may be challenging, especially if there is loss of mental capacity, for example in some people with dementia, where family carers may articulate their views more clearly than patients themsleves. There is a lack of UK research on ACP. Future research has been recommended specifically to identify: Lessons learnt from other countries; Users’ views and experiences of ACP; The competencies and training required by professionals; and How ACP can best be implemented in the context of loss of mental capacity. This study will explore how ACP can best be implemented where there is, as can occur in dementia, loss of mental capacity. The study objectives are: 1. To synthesise existing evidence from a range of countries on ACP in dementia care; 2. To identify the factors which facilitate/inhibit the process of ACP within the NHS; 3. To identify the professional competencies and training required to implement ACP; 4. To explore how ACP can be implemented in the context of loss of mental capacity, specifically focussing on people with dementia; 5. To develop guidance for healthcare professionals, patients and carers regarding the process of ACP in dementia care. This project comprises a series of Work Packages (WPs) to address the stated objectives. Research methods include a systematic review (WP1) and qualitative data collection, using focus groups and individual interviews with relevant stakeholders (WPs 2,3). WP1 will synthesise existing evidence from other countries on ACP in dementia; WP2 will explore healthcare professionals’ views on the implementation of ACP in the NHS End of Life Care Programme; whilst WP3 will determine how best to implement ACP in dementia care from the perspectives of people with dementia, their carers and health care professionals. Data from the above will be synthesised by the project team (WP4) to develop guidance for patients, carers and professionals on how best to implement ACP in dementia. NHS policy advocates involving older people and their representatives in care planning. We will provide much needed guidance on how to integrate ACP into practice, especially in the difficult area of loss of mental capacity. The number of people with dementia is predicted to double by 2050; this will have significant implications for health and social care provision. Information is needed on the preferences of people with dementia on their future care once mental capacity is lost, and the feasibility of ACP to inform patient choice. Research continues to demonstrate suboptimal care for people with advanced dementia; ACP may have a significant impact on the services required to support people with dementia at the end of life.
Aims
This study will explore how ACP can best be implemented where there is, as can occur in dementia, loss of mental capacity. The study objectives are: 1. To synthesise existing evidence from a range of countries on ACP in dementia care; 2. To identify the factors which facilitate/inhibit the process of ACP within the NHS; 3. To identify the professional competencies and training required to implement ACP; 4. To explore how ACP can be implemented in the context of loss of mental capacity, specifically focussing on people with dementia; 5. To develop guidance for healthcare professionals, patients and carers regarding the process of ACP in dementia care.