Abstract

Aim. The aim of this paper was to explore a range of strategies that were used to enable older people with dementia to become actively engaged in research ‘with’ rather than ‘on’ them. Background. It is well recognized that the prevalence of dementia in older adults is increasing. This increase is reflected by a huge rise in the amount of research in this area. The biomedical model continues to dominate dementia research; however, the last two decades have seen an increased interest in studies that seek the views of people with dementia. A review of literature that has actively engaged people with dementia suggests that research can be conducted in such ways that are both ethical and meaningful. These studies demonstrate that this group has a valuable contribution to research studies. Discussion. This literature establishes that it is possible to engage people with dementia in research, the majority of studies have tended to focus on those in the earlier stages of the disease. This paper demonstrates, through the use of a set of criteria which were specifically developed to evaluate this type of work, how people even with advanced dementia were engaged in research about their experience of acute hospital care in ways that were both meaningful and ethical. Conclusion. This paper demonstrates that it is possible to actively engage older people with dementia, even those in the more advanced stages of the disease, in research. It is essential that researchers understand ethical principles and are able to apply these sensitively and flexibly.