Sources of Discomfort and Comfort in People with Dementia
Research type
Research Study
Full title
Exploring the Relationship between the Sources of Discomfort and Comfort in People with Dementia
IRAS ID
260822
Contact name
Elizabeth Sampson
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2019/03/52, UCL Data Protection Reference
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research has shown that 80% of care home residents experience pain and 50% of people with dementia experience regular pain and subsequent discomfort.
The gold standard for pain assessment is self-reporting pain. However people with advanced dementia lose their ability to understand and communicate and therefore cannot self-report pain and discomfort. Discomfort may be caused by pain, but it can also be caused by other factors such as the environment, thirst, hunger, posture and etc. Discomfort can exist without pain but pain cannot exist without discomfort. The identification and management of pain and discomfort in people with advanced dementia is challenging because the two phenomena tend to overlap. Consequently, it poses a complex challenge for care staff assessing pain and discomfort. Therefore discomfort may be undetected or misinterpreted as pain consequently leading to inappropriate treatment and a poor quality of life.
A mixed method cross-sectional study will be conducted in UK care homes. The aim of this study is to examine the relationship between the Sources of Discomfort and comfort in people with advanced dementia. The Sources of Discomfort Scale (SODS) was recently developed to identify common sources of discomfort in people with severe cognitive impairment. We will investigate the possible sources of discomfort, using the SODS, in residents with advanced dementia living in care homes. We will also measure the level of discomfort and pain experienced by these individuals using validated observational tools such as Discomfort Scale for Dementia of the Alzheimer's Type (DS-DAT) (discomfort) and Pain Assessment in Advanced Dementia (PAINAD) (pain).
The secondary part of this study will involve conducting semi-structured interviews with care staff from each of the participating care home. The aim of this interview is to explore the current challenges staff face when interpreting and managing discomfort in people with advanced dementia.
REC name
London - Queen Square Research Ethics Committee
REC reference
19/LO/1234
Date of REC Opinion
27 Aug 2019
REC opinion
Favourable Opinion