A realist evaluation of a regional Dementia Health Literacy Project

Abstract

Background A Dementia Health Literacy Project was undertaken in the north coast region of NSW, Australia, after it was identified as having a high prevalence of dementia. A Dementia Support Kit was produced with service user engagement to provide useful information to people with dementia and their families. Objective To evaluate the Dementia Health Literacy Project using a realist evaluation framework. Setting and participants The setting was the region of the north coast of New South Wales. Eight people diagnosed with dementia and their carers, 13 members of social groups of older people in the local area, and 22 local GPs and other health‐care and service providers participated in this study. Results Two context‐mechanism‐outcome configurations were identified: (a) co‐design workshops where the stakeholders’ opinions were equally valued (context) led service users to feel listened to and prompted them to provide feedback (mechanism) to develop a practical resource that they would use (outcome); and (b) use of health professionals to distribute the resources (context) that they consider useful and valuable (mechanism) resulted in the target audience receiving the resources (outcome). Discussion and conclusions The Dementia Health Literacy Project produced a Dementia Support Kit that is likely to provide locally relevant and useful information for people with dementia and their carers. The results highlight the value of the co‐design approach in producing and disseminating dementia health literacy resources. Further evaluation is required to confirm the impact of the Kit over time on service users’ behaviour and consequently on their health outcomes.

Planning and enabling meaningful patient and public involvement in dementia research

“…130 papers were identified of which 16 studies were retrieved for inclusion. The studies documented PPI involvement from the researcher's perspective (7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18), through analysis of workshop and advisory committee minutes (19,20) or by directly asking PPI representatives for their experiences (21*, 22**).…”

“…Only four studies involved a broader range of stakeholders including caregivers, the public, PLWD and carer support workers recruited via existing links with the research team, a national dementia organisation and a University volunteering service (22**). One study involved members of the public, PLWD and caregivers, however it was unclear how they were approached (14*), while another involved PLWD, their caregivers, older adults without dementia and healthcare professionals from local groups and services (10). One study ran groups with people affected by early onset dementia and their caregivers recruited through national dementia support groups, and also interviewed health professionals and voluntary sector workers (7).…”

“…Engaging PLWD and hard to reach groups was identified as a challenge including a lack of engagement with people with severe dementia (9, 16), difficulties recruiting any PLWD to an advisory committee, and challenges in obtaining feedback from PLWD due to difficulties understanding and remembering survey questions (10). Two studies acknowledged that PPI representatives were recruited from existing dementia research groups, committed to research and possibly not representative of the wider community (7, 15*).…”

“…Six studies described the impact of PPI involvement on the research process. This included the use of personal experiences to tailor research materials (21*), interview questions and techniques (16) and intervention manuals for enhanced implementation and future testing (10,11). The most tangible impact was on increasing recruitment rates.…”

Preparing care home staff to manage challenging behaviours among residents living with dementia: A mixed-methods evaluation

“…Confirming other research, MEDREV found that carers require training in the use of medication and the management of behaviours that challenge (Grace and Horstmanshof, 2019;Maidment et al, 2017). Person-centred care is frequently Table 3.…”