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Assessing fidelity of a community based psychosocial intervention for people with mild dementia within a large randomised controlled trialBackground: Understanding intervention delivery as intended, particularly in complex interventions, should be underpinned by good quality fidelity assessment. We present the findings from a fidelity assessment embedded as part of a trial of a complex community-based psychosocial intervention, Journeying through Dementia (JtD). The intervention was designed to equip individuals with the knowledge and skills to successfully self-manage, maintain independence, and live well with dementia and involves both group and individual sessions. The methodological challenges of developing a conceptual framework for fidelity assessment and creating and applying purposely designed measures derived from this framework are discussed to inform future studies.Methods: A conceptual fidelity framework was created out of core components of the intervention (including the intervention manual and training for delivery), associated trial protocols and pre-defined fidelity standards and criteria against which intervention delivery and receipt could be measured. Fidelity data collection tools were designed and piloted for reliability and usability. Data collection in four selected sites (fidelity sites) was via non-participatory observations of the group aspect of the intervention, attendance registers and interventionist (facilitator and supervisor) self-report.Results: Interventionists from all four fidelity sites attended intervention training. The majority of group participants at the four sites (71%) received the therapeutic dose of 10 out of 16 sessions. Weekly group meeting attendance (including at 'out of venue' sessions) was excellent at 80%. Additionally, all but one individual session was attended by the participants who completed the intervention. It proved feasible to create tools derived from the fidelity framework to assess in-venue group aspects of this complex intervention. Results of fidelity assessment of the observed groups were good with substantial inter-rater reliability between researchers KAPPA 0.68 95% CI (0.58-0.78). Self-report by interventionists concurred with researcher assessments.Conclusions: There was good fidelity to training and delivery of the group aspect of the intervention at four sites. However, the methodological challenges of assessing all aspects of this complex intervention could not be overcome due to practicalities, assessment methods and ethical considerations. Questions remain regarding how we can assess fidelity in community-based complex interventions without impacting upon intervention or trial delivery.Trial Registration: ISRCTN17993825 .
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The struggle of apathy in dementiaMost people will recognise a sense of apathy within them, at some point during their lives, and this may present to a greater or lesser extent depending on the individual and the context. When people are asked about what apathy is, what it means, or how it might feel, generally they can provide an insight, suggesting it is something broadly universal to the human experience. We might consider apathy to be a lack of motivation, a feeling of not being bothered, or a desire to do something coupled completely with a desire not to do that same thing. For most people though, apathy can be overcome, and it represents a fleeting problem that does not impact on day-to-day life. For people with dementia, apathy is an important problem because it is recognised anecdotally, clinically and in research to be common (Selbaek et al., 2013; Zhao et al., 2016), persistent (van der Linde et al., 2017), and difficult to live with for both the person with dementia and those close to them (Feast et al., 2016). Follow-up studies suggest that apathy is associated with worse health and social outcomes (Breitve et al., 2018).
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Antihypertensives in dementia: Good or bad for the brain?Hypertension is associated with both ageing and dementia. Despite this, optimal blood pressure targets in dementia remain unclear. Both high and low blood pressure are associated with poorer cognition. Changes in vascular physiology in dementia may increase the vulnerability of the brain to hypoperfusion associated with antihypertensives. We discuss the potential risks of antihypertensives in the context of altered cerebral haemodynamics, and evidence from antihypertensive trials in dementia. We suggest that individualised blood pressure targets should be the focus for antihypertensive therapy in dementia, rather than strict control to uniform targets extrapolated from trials in cognitively healthy individuals.