Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study

Abstract

Background: 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.

Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia

“…The larger observational study [5], which forms the context for the embedded approach, and the embedded study itself, had discrete research aims and methods (Table 1).…”

“…The study drew upon ethnographic principles in relation to data collection approaches (the unobtrusive collection of data on usual life) to appreciate “the ways that people understand and account for their day-to-day situation” [4]. A larger observational quantitative study of the effects of different approaches to home care services for people with dementia and their carers provided the context for the embedded qualitative study [5].…”

“…This article has two aims: to demonstrate the value of the novel method of qualitative data collection and to illustrate how this can be employed to gain and analyse data from carers involved in structured interviews of people with dementia. More specifically, by gathering qualitative data during a single structured interview, that is, one which uses standardised quantitative measures, we aimed to explore whether comments embedded within them could facilitate a ‘sociological lens’ that could allow us to access the views of carers as expressed while they were engaged in completing standardised measures [5, 6]. In addition we consider whether the burden for families participating in research could be minimised by streamlining the research process through ‘doubling up’ on the data collection, avoiding the need for the separate collection of qualitative and quantitative data.…”

“…Dementia is sometimes conceptualised within research, policy and practice as a problem: a drain on resources [7, 8], a burden on families and the state [9, 10], and a personal disaster for those who live with it [5, 11]. Research in this area often aims to quantify such problems using standardised measures such as quality of life instruments, measures of burden and costs of caring [12].…”

“…This paper explores a novel embedded research method, capturing carers’ views when expressed as informal comments occurring naturalistically and unprompted while completing standardised measures in face-to-face interviews. The paper illustrates how these comments can offer more contextual access to a deeper understanding of the social world in which people in later stage dementia and their carers live, as they put into their own words their views of their world, including their experience of formal service provision at home [5]. A wealth of literature, both quantitative and qualitative, exists on carer burden.…”