1]  GENetic FTD Initiative

 Are you part of a family with a genetic form of frontotemporal dementia or primary progressive aphasia?

 We are just starting a new study of genetic FTD and PPA. Anyone who is a first-degree relative of someone with a genetic form of FTD or PPA would be eligible to be in the study (a brother, sister, son or daughter). The genes we are specifically looking at are progranulin and tau and also people with motor neurone disease in the family. We are also studying people who are affected with genetic FTD or PPA. The study involves some psychology tests, a brain scan and a blood test over the period of a day.

2] Duties to care project

http://www.dementiaproject.net/content/researc-project

3] Dissertation project:

drwkk1231@yahoo.com

4]The Past Caring Project

http://www.youtube.com/user/folkusuk

If you would like any further information please contact:

Dr Jonathan Rohrer (University College London) - j.rohrer@ucl.ac.uk, Dementia Research Centre, UCL Institute of Neurology, Box 16, National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG

or Dr James Rowe (University of Cambridge) - james.rowe@mrc-cbu.cam.ac.uk, MRC Cognition and Brain Sciences Unit, 15 Chaucer Road, Cambridge, CB2 7EF.

 The duties to care project is interested in the experiences of carers of people with dementia

Donna Ginn is a doctoral student at ATSU anda nursing home administrator in Oklahoma, USA;

'I am trying to narrow down my topic for my dissertation and I have a resident in our nursing home with Pick's disease. I want to find a way to improve care for Pick's disease; very few nursing homes here will admit that diagnosis because the behaviors are too difficult to manage. Families have little to no option other than home care here and the burden is tremendous for them. Please email me with any contacts, researchers, families that may want to give me their stories or any contacts at all. I want to hear from people about what needs to be studied, changed, improved on for all those suffering from this particular dementia disease. Thank you.' Donna Ginn

The Past Caring Project :The Past Caring Project aims to give bereaved carers a chance to tell their stories. Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. Bereaved carers are people who have spent time caring for a person who has now died. This project collects their stories about what comes next, how carers feel and what they experience. The project is run by a group of bereaved carers who want to research the needs and experiences of bereaved carers. Most research projects about carers end when the cared for person dies, but we feel there is a need to know more about what happens to the carers.

We aim to share the stories with other carers and use them to help influence or change health and social care policies and services for carers.

What are the stories for?  From the stories we have collected so far, we have found that some stories speak about the loss of the caring role, worries about how you cared and the lifting of responsibility for another’s life. Some celebrate the life of the person cared for and reflect on life changes that followed their death. James Earl Jones once said ‘One of the hardest things in life is having words in your heart that you can’t utter’. These are difficult stories to tell but we have found that the delicacy and creativity of the story telling process somehow allows the carers to explore and express hidden levels of personal meaning. Some people have suggested the stories help the tellers to create their own future stories.

 The stories themselves also subtly and powerfully provide clues to what health and social care services do really well and where they stumble. We hope to use the stories to make differences there by lobbying service providers and commissioners and reaching out to bereaved carers nationally.

Who is running the project? This is a participatory project run by Rosemary, Victoria and Brian, who themselves are bereaved carers. They are funded and supported by Wendy and Rachel at Folk.us, a team at the Peninsula Medical School /University of Exeter that supports service user involvement in health and social research (www.folkus.org.uk). Barrie is a Digital Story telling expert and he supports the digital workshops. Barrie has18 years of experience working at the BBC as radio producer and managing editor of two BBC local radio stations. The project is endorsed by the Princess Royal Trust for Carers.