Young Onset Dementia:Partners experiences of the pre-diagnostic phase
Research type
Research Study
Full title
Young onset dementia: Partners experiences of the pre-diagnostic phase.
IRAS ID
260766
Contact name
Naomi White
Contact email
Sponsor organisation
NHS Greater Glasgow and Clyde
Duration of Study in the UK
0 years, 8 months, 26 days
Research summary
It is estimated that in 2019 there will be 640 people diagnosed with a young onset dementia (YOD) in Scotland (NSS ISD, 2016). YOD is dementia which occurs before the age of 65. Getting a diagnosis can be complicated, with no clear route through the health system (Williams, Dearden & Cameron, 2001). Partners of those with YOD are often involved in this process; however, little is known about their experience from when they start to notice symptoms to when they seek support for their loved one.
Aims
To explore how partners of those with YOD make sense of the period from observing initial symptoms to seeking healthcare support, as well as what it is like for them to seek help from health services.
Methods
Participants
Participants will be partners of those diagnosed with YOD in the last 3 years, living within Greater Glasgow and Clyde. Individuals will be excluded if they do not speak English fluently.
Recruitment
Staff members from the YOD Service in NHS Glasgow will identify participants for the study. They will give those interested an information sheet and will gain verbal consent for the researcher to be given their contact details. Participants will be contacted by the researcher to answer any further questions and to confirm their interest in participating.
Design of Study
Semi-structured interviews will be carried out individually with participants.
Consent
Written informed consent will be gained before beginning the interview.
Data Collection
Participant interviews will last for 60-90 minutes. Interviews will be recorded and then typed out word for word with any patient identifiable information removed. Audio recordings will be kept until the study is complete and then deleted. Information will be stored according to the Glasgow University Data Retention Policy, as well as the General Data Protection Regulation (2018).REC name
West of Scotland REC 1
REC reference
19/WS/0094
Date of REC Opinion
3 Jul 2019
REC opinion
Favourable Opinion