title: Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study.
abstract: Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers.
  
  
  
  This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers.
  
  
  
  This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Chester
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Clarkson
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Hughes
authors.affiliation: Swansea Trials Unit,School of Medicine,Swansea University,Swansea,UK.
authors.forename: Ian
authors.initials: I
authors.lastname: Russell
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Joan
authors.initials: J
authors.lastname: Beresford
authors.affiliation: Manchester Centre for Health Economics,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Linda
authors.initials: L
authors.lastname: Davies
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: David
authors.initials: D
authors.lastname: Jolley
authors.affiliation: Swansea Trials Unit,School of Medicine,Swansea University,Swansea,UK.
authors.forename: Julie
authors.initials: J
authors.lastname: Peconi
authors.affiliation: School of Health Sciences,Faculty of Medicine and Health Sciences,University of East Anglia,Norwich,UK.
authors.forename: Fiona
authors.initials: F
authors.lastname: Poland
authors.affiliation: Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Chris
authors.initials: C
authors.lastname: Roberts
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Sutcliffe
authors.affiliation: Personal Social Services Research Unit,Division of Population Health,Health Services Research and Primary Care,School of Health Sciences,Faculty of Biology,Medicine and Health,Manchester Academic Health Science Centre,University of Manchester,Manchester,UK.
authors.forename: David
authors.initials: D
authors.lastname: Challis
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003362:Cost-Benefit Analysis; D003704:Dementia / Q000191:economics / Q000451:nursing*; D004739:England; D005260:Female; D006699:Home Care Services / Q000191:economics*; D006801:Humans; D008875:Middle Aged; D011446:Prospective Studies; D011788:Quality of Life; D012107:Research Design
keywords: carers; cost-effectiveness; dementia; home support; observational study; outcomes; quality of life; service receipt