The Case for Evaluating Process and Worth: Evaluation of a Programme for Carers and People with Dementia

Abstract

A case study methodology was applied as a major component of a mixedmethods approach to the evaluation of a mobile dementia education and support service in the Bega Valley Shire, New South Wales, Australia. In-depth interviews with people with dementia (PWD), their carers, programme staff, family members and service providers and document analysis including analysis of client case notes and client database were used. The strengths of the case study approach included: (i) simultaneous evaluation of programme process and worth, (ii) eliciting the theory of change and addressing the problem of attribution, (iii) demonstrating the impact of the programme on earlier steps identified along the causal pathway (iv) understanding the complexity of confounding factors,

Reflections and Recommendations for Conducting In-Depth Interviews With People With Dementia

“…If environmental cues are not possible, photos of relevant people, objects, or places may help prompt discussion (Abbato, 2015;Dewing, 2002;Watchman & Kerr, 2014 (Cotrell & Schulz, 1993). Contacting the participant before the interview is recommended (Cotrell & Schulz, 1993).…”

“…Fundamentally, the cognitive impairments inherent to the condition can make some people with dementia difficult to engage in the research process (Abbato, 2015;Dewing, 2002). More specifically, cognitive impairments implicated with dementia often involve memory difficulties, perceptual abnormalities, and communication challenges (Lloyd et al, 2006).…”

“…Factors contributing to this increasing attention include acknowledgment that there is a need to address the power inequalities in the relationship people with dementia have with others (Wilkinson, 2002). This includes a recognition that exclusion from the research process can contribute to the objectification and negative stereotyping of people living with dementia (Cotrell & Schulz, 1993); people with dementia are capable of expressing their views, needs, and concerns (Hellström, Nolan, Nordenfelt, & Lundh, 2007; Smebye & Kirkevold, 2012); understanding the experiences of people with dementia is important for evidence-based service delivery; many people with dementia might desire to be involved in research (Abbato, 2015; Beard, 2004; de Boer et al, 2007; Dewing, 2002); and people with dementia might benefit from research involvement (Beard & Fox, 2008; Hellström et al, 2007). Many of the studies including people with dementia have used qualitative approaches.…”

WITHDRAWN: Social Research Methods to Support Involvement of Community Dwelling Older Adults With Complex Needs in Assessment of Their Care Related Quality of Life

“…There is however, a growing recognition that, with the right support, people with dementia are capable of expressing their views, needs and concerns (20,21). It is recognised that understanding the experiences of people with dementia is important for evidence-based program and service delivery (17,22,23). This is especially so in a CDC aged care market where the success of programs must be understood through the rubric of meeting peoples' preferences and needs.…”

“…Previous research has highlighted signi cant challenges with establishing reliable methods to collect care outcome data for people ageing with cognitive and communication impairments. For example, the cognitive impairments inherent with dementia present challenges for recruitment (15); managing consent (16); and with engagement in research processes (16,17). Impairments can also make results di cult to interpret due to vagueness in speech, decreased vocabulary, poor reasoning of verbal information, confabulations or 'pseudo-reminiscences', perseverations, and confused word associations (18,19).…”