Post-diagnostic support for dementia: What can be learned from service providers’ experiences, model variation and information recording?

Abstract

Purpose

The purpose of this paper is to examine three interpretations of post-diagnostic support (PDS) for dementia, to understand how best to support people recently diagnosed with dementia.

Design/methodology/approach

A sequential mixed-method approach was used which included analysis of the data collected by each sector, a focus group and interviews with PDS linkworkers and other staff.

Findings

All three sectors used a mix of supported self-management workshops and one-to-one PDS, however sectors varied by linkworker’s affiliation, caseload management and client group. Caseload varied greatly between sectors. Stage of disease and socioeconomic make-up of the local population were raised as factors determining the form of PDS offered. Some pillars appeared to be more easily achieved than others. There was a general agreement among all staff that “caseload” was misleading and that a measurement of workload would be preferable. Agile/mobile working was preferred by linkworkers. Even within teams there was variation in perceptions of PDS; some felt the linkworker role to be one of signposting, while others felt more involved with their client group, and for longer than 12 months.

Practical implications

Guidance at the outset of the PDS programme was sparse. The findings of this study should inform future development of the PDS model and a supporting guidance framework.

Originality/value

There is a growing interest in PDS for dementia. However, little is known about what a model of PDS should look like. This study attempts to capture the most important aspects of PDS delivery.

Citation

Levin, K.A., Lithgow, S., Miller, M. and Carson, J. (2018), "Post-diagnostic support for dementia: What can be learned from service providers’ experiences, model variation and information recording?", Health Education, Vol. 118 No. 4, pp. 320-338. https://doi.org/10.1108/HE-08-2017-0042