Exploring experiences of early post diagnostic dementia support
Research type
Research Study
Full title
Exploring the experiences of people with dementia and their carers' in feeling connected to and supported by post diagnostic services, following a diagnosis of dementia.
IRAS ID
320305
Contact name
JULIE PHILPS
Contact email
Sponsor organisation
Leeds Beckett University
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Dementia is the biggest global health and social care challenge of our time and has been declared a public health priority (WHO, 2012). Within the UK alone there are over 907,000 people currently living with dementia and, due to an aging population, this is set to increase by 75% to almost 1.6 million by 2050, (GBD 2022). Despite advances in the field of dementia research, there is currently no cure or disease modifying treatments (Livingston et al., 2020), emphasising the need for improved care.
Post diagnostic support is considered essential to the wellbeing of those with dementia and their carers (ADI, 2022). Defined as “holistic, integrated, continuing care in the context of declining function and increasing needs of family carers” (ADI, 2016), the span of post diagnostic care is broad, from the point of diagnosis continuing through to end-of-life care. Despite being central to Government policy and strongly advocated there is a lack of evidence examining the lived experience of post diagnostic support from those with dementia (Morbey et al., 2019; Gove et al., 2018).
This post-doctoral research project seeks to address this by conducting semi structured interviews with people with dementia and their carers, following diagnosis and up to three further timepoints within 12 months, to explore the experiences of people with dementia and their carers’ in feeling connected to, and being supported, by early post diagnostic services. Recruitment through NHS Memory Assessment services will include people with dementia who are often marginalised or less represented in research allowing the opportunity to hear the perspectives of these groups and explore any inequalities in accessing and receiving post-diagnostic support services.
The study will add to the current literature and the outcomes will provide recommendations for stakeholders providing post-diagnostic support for people with dementia in the UK.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
23/YH/0067
Date of REC Opinion
16 May 2023
REC opinion
Further Information Favourable Opinion