‘Understanding the palliative care needs of people with FTLD'
Research type
Research Study
Full title
‘Understanding the palliative care needs of people with Frontotemporal Lobar Degeneration’
IRAS ID
293597
Contact name
Elizabeth Sampson
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2021/01/10 health research, UCL Data Protection
Duration of Study in the UK
1 years, 4 months, 1 days
Research summary
People living with Frontotemporal Lobar Degeneration (FTLD) experience a myriad of symptoms and problems. The rapid progression of this rare condition means people with FTLD may not receive appropriate care at the end of life. Currently, there is no research in the area of palliative care needs for people living with FTLD. This means that we do not know how best way to care for those with FTLD from a palliative care perspective or as they approach end of life. This study will address this identified gap by using a palliative care model to assess the physical, psychological, social and spiritual needs of this population. This study focuses on those who are more likely to have a Younger onset Dementia and is part of a larger study named the Empowering Better End of Life Dementia Care Programme (EMBED-Care) which explores the palliative care needs of people living with dementia.
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
21/LO/0496
Date of REC Opinion
27 Jul 2021
REC opinion
Further Information Favourable Opinion