| Title: | The Future Care Study: Decision-making concerning eating and drinking for people with progressive neurological disease with and without decision-making capacity |
| Project Description: | The prevalence and incidence of progressive neurological disease is predicted to rise, as the age of the UK population increases. Those with Motor Neurone Disease, Parkinson’s Disease, Huntington’s Disease and Alzheimer’s Disease often experience dysphagia and feeding difficulties as their disease advances. Decisions concerning feeding interventions, e.g. Percutaneous Endoscopic Gastrostomy are complex, particularly when individuals lack decision-making capacity. The review and withdrawal of the Liverpool Care Pathway highlighted nutrition and hydration as an area of concern.
The Future Care Study is a research project that is seeking to find out how people feel about their future care, particularly issues concerning eating, drinking and mealtimes as the end of life approaches. We are investigating the views of the public, patients, professionals and family members to learn about issues surrounding nutrition and hydration, mealtimes and decision-making capacity. This information will be used to develop advice to assist those with progressive neurological diseases. Study One: Public opinion survey |
| Project organisation | |
| Start date: | 1st September 2015 |
| End date: | 30th August 2017 |
| Contact person: | Dr Gemma Clarke |
| Contact Details: | Primary Care Unit Institute of Public Health University Forvie Site, Robinson Way Cambridge Cambs CB2 0SR UK Telephone: 01223 330329 Fax: 01223 762515 E-mail: gcc29@medschl.cam.ac.uk |
| Collaborative: | PI Dr Stephen Barclay. Research Associate Dr Gemma Clarke 1. Professor Anthony Holland, 2. Professor John O’Brien, 3. Dr. Gemma Clarke, 4. Dr. Duncan Forsyth, 5. Prof. James Rowe, 6. Dr. Rachael Boulton, 7. Dr. Elizabeth Fistein, 8. Mrs. Sue Brenchley, 9. Mr. Alan Wilcher |
| Funding information | |
| Funding Organisation: | Dunhill Medical Trust |
| Funding Reference: | Project Grant |
| Funding Amount: | £221,705 |
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| Further Information, References and Publications | |