FAB Carers: Facilitators & Barriers – Caring for Dysphagia in Dementia
Research type
Research Study
Full title
FAB Carers: Facilitators and Barriers for Informal Caregivers when Following Speech and Language Therapy Dysphagia Recommendations for those with Dementia Living at Home
IRAS ID
244483
Contact name
Kristian Pollock
Contact email
Sponsor organisation
University of Nottingham
Clinicaltrials.gov Identifier
000, 000
Duration of Study in the UK
0 years, 3 months, 28 days
Research summary
There are 850,000 people living with dementia in the UK, with 670,000 family and friends acting as their informal caregivers. The NHS have committed to supporting the health and wellbeing of people living with dementia and their caregivers in the community.\n\nSwallowing difficulties, known as ‘dysphagia’ occur in dementia. 45% of people in the UK, with dementia, have dysphagia, associated with risks including dehydration, malnutrition, pneumonia, reduced quality of life and death. \n\nA speech and language therapist (SLT) can assess and manage dysphagia difficulties and risks, often recommending thickened drinks or softer / blended foods. If a person with dementia is unable to make a decision about the recommendations or prepare drinks and food, caregivers will follow them on their behalf. To do this, they need the right level of education and support or it can increase their sense of burden, inadvertently leading to hospital admissions, care home placements or death for those they are caring for. \n\nExisting studies have shown dysphagia has a negative impact, with low levels of compliance with recommendations by those who are able to make their own decisions. However, the needs and perspectives of caregivers, when they are following them on behalf of somebody else, is underreported. \n\nThis study will explore this, asking what are the facilitators and barriers for informal caregivers when following SLT dysphagia recommendations for those with dementia living at home?\n\nInformal caregivers will be recruited from carer and public involvement groups or through an NHS SLT community team. They will participate in one 60-90-minute semi-structured interview with a researcher, likely to be in their home. Themes from the interviews will be analysed. The study will last for 3 months. \n\nThere will be no direct benefit to participants, but the results will contribute to dementia and dysphagia and form a PhD proposal.\n
REC name
South West - Central Bristol Research Ethics Committee
REC reference
18/SW/0146
Date of REC Opinion
4 Jun 2018
REC opinion
Favourable Opinion