Background: Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia.Methods: This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included.Results: Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns.Conclusions: There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term “Alzheimer's disease” appears to have more negative connotations than the word “dementia”.

Summary: The National Dementia Strategy in England has performed an essential role in transforming health and social care services and improving the commissioning architecture. However, to date, little attention has been paid to understanding the ways in which the outdoor and built environment impacts and intersects with the lives of people with dementia and their carers. One way of better understanding the outdoor and built environment is through a focus on the ‘neighbourhood’ as this is an area of public policy where attempts are being made across disciplines to unpack its meanings, significance and identity. This paper adopts a realist review method to detail the key findings and messages from the body of work that links the experience of living with dementia to the neighbourhood. Our findings from this review are assimilated and defined/presented under three headings, namely: outdoor spaces, built environment, and everyday technologies. These headings and our definitions are not discrete properties and there is some overlap in content. We found no research that sets out to enquire about how people with dementia might define their neighbourhood or that explores everyday neighbourhood practices for those living with the condition. Emerging concepts such as citizenship and, in the UK, the Coalition Government advancement of the ‘Big Society’, promote a vision of civic responsibilities and networked, dementia-capable communities, but evaluation of such initiatives are virtually absent from the literature. The review did uncover some interesting and innovative research methods that extend neighbourhood working, such as the ‘walking interview’. In order to develop a neighbourhood model for dementia, future research should examine the relationship and interaction between the neighbourhood as a social space and as a physical space alongside the active role of people with dementia as ‘place-makers’.

Across the world, an early and timely diagnosis of dementia is seen to be a policy and practice imperative and a necessary step in order to live well with the condition. However, limited understanding exists regarding the personal and relational meanings attributed to the diagnostic experience. Drawn from the findings of a larger multi-site study conducted in four areas of England, this article presents a subset of the data where five participants and their carers and two people living alone initially presented themselves at a memory clinic for diagnostic testing, with this presentation eventually resulting in a confirmed, and shared, diagnosis of dementia. All 12 participants were interviewed at two time points in the study: at the time of first presentation to the memory clinic and shortly after the diagnosis had been shared with them. Informed by the grounded theory method, constant comparative analysis was applied to the data and this process resulted in a four-phase sequential model of diagnostic transition: (1) becoming self-aware→seeking outside help; (2) being referred→receiving a clinic appointment; (3) undergoing tests→being told what's wrong; and (4) adjusting to the diagnosis→negotiating everyday expectations. Running through each phase was the core category of 'living with uncertainty' which summarised the entire diagnostic journey for all study participants. Findings suggest a need for better awareness and information for people living with dementia at all phases and time points in the condition, which may be fostered by embedding these in early clinical encounters.

Background The National Dementia Strategy in England stressed the importance of earlier diagnosis of dementia. In-depth knowledge of the experiences of patients using such services remains an evidence gap. Aim To increase understanding of the experiences of people developing dementia and of their carers, to inform practice and decision making. Design and setting A retrospective and prospective qualitative interview study of participants recruited from four memory clinics in London, the north-west and the north-east of England. Method Purposive sampling was used to recruit 27 individuals with memory problems and 26 supporters and carers. Interviews explored referral pathways, assessment processes, disclosure of the diagnosis, experiences of being prescribed medication to help with symptoms, and issues of risk and decision making. Results Few participants experienced the process of memory assessment as patient centred. Where assessment processes were lengthy and drawn out, participants experienced considerable uncertainty. Many experienced tests and assessments as distressing, sometimes in settings that were perceived as alarming or potentially stigmatising by association. Information provision and communication were variable and practitioners were not always thought to help people to make sense of their experiences. Conclusion The transition from the early stages of cognitive impairment is not straightforward. There is potentially much uncertainty and waiting. Primary care practitioners may be better able to provide tailored support to individuals and their carers during this time if they are aware of what patients are anticipating and are informed about the diagnostic ‘journey’ by the insights of those who have experienced it.

Using illustrative case examples, in this paper we explore the friendships of people with dementia in the early stages of the condition and the benefits of looking beyond the family as the ‘go to’ support network that practitioners tend to focus on in their work with people with dementia. The importance of participatory approaches in both research and practice for understanding the friendship experiences of people with dementia is highlighted. The case studies include a personal narrative on friendships from one of the authors, a person living with dementia. This is followed by an account of a peer support group for people with dementia where the interactions in the group are explored alongside consideration of the significance and outcomes of creating such social spaces for people with dementia. We pay particular attention to the emerging phenomenon of ‘facilitated friendships’ as practitioners work to support collective agency on the part of people with dementia.