title: The development of service user-led recommendations for health and social care services on leaving hospital with memory loss or dementia - the SHARED study.
abstract: Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services.
  
  
  
  To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community.
  
  
  
  Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations.
  
  
  
  Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study.
  
  
  
  Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services.
  
  
  
  Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK.
authors.forename: Carole
authors.initials: C
authors.lastname: Mockford
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK.
authors.forename: Kate
authors.initials: K
authors.lastname: Seers
authors.affiliation: Alzheimer's Society, London, UK.
authors.forename: Matt
authors.initials: M
authors.lastname: Murray
authors.affiliation: School of Dementia Studies, University of Bradford, Bradford, UK.
authors.forename: Jan
authors.initials: J
authors.lastname: Oyebode
authors.affiliation: University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK.
authors.forename: Rosemary
authors.initials: R
authors.lastname: Clarke
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK.
authors.forename: Sophie
authors.initials: S
authors.lastname: Staniszewska
authors.affiliation: University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK.
authors.forename: Rashida
authors.initials: R
authors.lastname: Suleman
authors.affiliation: Alzheimer's Society Research Network, London, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Boex
authors.affiliation: Alzheimer's Society Research Network, London, UK.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Diment
authors.affiliation: University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK.|National Institute for Health Research, Collaboration for Leadership in Applied Heath Research and Care, West Midlands (NIHR CLAHRC WM), Coventry, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Grant
authors.affiliation: Patient and Public Action Group, Clinical Research Network, Coventry, UK.
authors.forename: Jim
authors.initials: J
authors.lastname: Leach
authors.affiliation: University/Users Teaching and Research Action Partnership (UNTRAP), University of Warwick, Coventry, UK.
authors.forename: Uma
authors.initials: U
authors.lastname: Sharma
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003704:Dementia / Q000451:nursing*; D004739:England; D005260:Female; D017144:Focus Groups; D006761:Hospitals; D006801:Humans; D008297:Male; D008569:Memory Disorders / Q000523:psychology*; D010351:Patient Discharge; D012947:Social Work; D013315:Stress, Psychological / Q000523:psychology
keywords: dementia; hospital discharge; lay co-researchers; memory loss; service provision; service user-led recommendations