Abstract
During the last decade, there has been increased recognition of the need and desirability of including people with dementia and their family carers and supporters as key stakeholders and active participants in all stages in the research process. Different models of involvement have developed, although it is widely accepted that progress has been uneven and that work still needs to be done (Bartlett, Hick, Houston, Gardiner, & Wallace, 2013; Charlesworth, 2018; Hayes, Costello, Nurock, Cornwall, & Francis, 2018).
This issue of Innovative Practice takes three different accounts of involvement to highlight different examples of the importance of involving people with dementia and family carers in the full range of decisions, from technology aimed at improving people’s everyday lives to developing research protocols and programme implementation.
The first article (Coetzer, 2019) is a case study of Mrs V (a pseudonym) who was referred for neuropsychiatric support after experiencing a stroke. She was particularly anxious about being unable to tell the time. Her family helped adapt a clock which indicated different time periods (morning, afternoon, evening, night) and meal times. The adapted clock was initially very effective but, as Mrs V’s cognitive abilities declined, its efficacy was reduced. Coetzer suggests that the clock example illustrates how tailored assistive technologies to which carers have contributed may result in better acceptance or ‘buy in’ and offer solutions where there are no existing technologies. At the same time, it needs to be recognised that carers will need support if the efficacy of any technologies to which they have contributed is reduced as the person’s condition progresses.
The remaining contributions in this section (Giebel, Roe, Hodgson, Britt, & Clarkson, 2019; Swarbrick, Open Doors, EDUCATE, Davis, & Keady, 2019) draw on experiences from much larger scale studies. The second article by Swarbrick and colleagues (2019) describes the ‘CO-researcher INvolvement and Engagement in Dementia’ Model, or the COINED Model for short, which was co-produced with and alongside people living with dementia. The model was developed during the application stage of the Neighbourhoods and Dementia Study (2014–2019), which was a large, multi-centre international study on neighbourhoods and dementia (UK Research and Innovation, Undated). The authors conclude that while discussions in the wider literature focus on whether people living with dementia as co-researchers are able to engage in ways that are ‘meaningful’ to the research process (Tanner, 2012), it is equally important to ensure that co-researcher involvement is, first and foremost, meaningful for the individuals themselves.
Finally, Giebel and colleagues (2019) report on the patient and public involvement element of the HoST-D (Home SupporT in Dementia) Programme which involved two patient and public involvement groups (one small reference group and one virtual lay advisory group). The programme’s approach to involvement was underpinned by six key values (respect, support, transparency, responsiveness, fairness of opportunity, and accountability). The face to face and virtual involvement of people with dementia and carers proved to be an invaluable source of knowledge.
Researchers have highlighted the need to avoid tokenism in user involvement (Charlesworth, 2018; Hayes et al., 2018). Taken together, these three articles make an important contribution to our understanding of how people with dementia and their carers can play a part in shaping evidence in ways that validate, and do not exploit, their expertise.