Dementia

Tim Dartington has drawn on contemporaneous documents, diary notes and more recently a blog, in putting together this account of two days out of six years. Anna was a psychotherapist and writer on adolescence until she took early retirement in 2000 and underwent tests for Alzheimer's disease. She died at home in May 2007. In his description of his own thought processes and associations to the progression of the disease, Tim has included detail from his observation of ways that Anna managed herself in relation to the illness, and also her verbatim comment. Anna has written her own account of the illness, `My Unfaithful Brain' (Davenhill, 2007).

This paper outlines the use of a new qualitative research approach, Co-Constructed Inquiry, to develop a personal theory of the experience of living and adjusting to an early diagnosis of Alzheimer's disease. The personal theory was developed over a 21-month period (March 2004—December 2005) between Sarah, a person with Alzheimer's disease, and a clinical nurse specialist at a memory clinic in North Wales, John Hughes-Roberts. The resulting work suggested that Sarah co-constructed her experience of living with the onset of Alzheimer's disease as a process of `making mistakes' and that her life story was a powerful influence in mediating and enhancing her coping behaviour. Moreover, a sequence of `balancing' acts, i.e. losing balance — finding balance — keeping balance, which Sarah visualised as the `up and down' motion of a see-saw, both conceptualised and diagrammed her early adjustment experience. Sarah's personal theory has implications for practice and research development.

This article describes an ongoing interdisciplinary research study1 with community-dwelling people living with dementia. The article focuses on one person living with dementia, her family and support group. Seven people were interviewed and their stories woven into one narrative. Our interest is in her self-identity, which we explore through a participatory story-telling approach. In gathering stories with all people who are significant in her life we have observed that what is driving the stories is an ethical imperative that is shared across her social network. We have described this as an imperative to `curate' her self-identity. `Curation' combines telling `about', `for' and potentially `with' the person living with dementia in interactions which reproduce and reconfirm her self-identity. We propose that the notion of curation offers a way in which people, research participants, significant others and health care professionals, can think differently about living with dementia. In particular, we argue that curation enables the person to be acknowledged in interaction as an individual with a coherent, evolving identity which spans past, present and future.

This article explores the strategies that spouses use in order to live positively when one partner has dementia. Data were collected from 152 interviews with 20 couples conducted over a period of five years. Using a constructivist grounded theory methodology, data were analysed to capture the main processes involved and charted how these changed over time. Three main phases were identified termed: `sustaining couplehood'; `maintaining involvement'; and `moving on', that operated in an iterative rather than linear fashion. The data highlight the very active role played by both partners, especially in the early stages of the disease, as they strive to maintain the quality and closeness of their relationship by creating what we term a `nurturative relational context'. The diverse strategies that the couples adopt are presented, and the gradual way in which the person with dementia `hands over' or `let's go' of responsibility to their partner is described. The article provides several new insights into the nature of spousal relationships in dementia and the ways in which they seek to maximize their quality of life, and, wherever possible, sustain couplehood.

This article describes how researchers, practitioners and technicians in West Sweden worked together with older people with early stage dementia and their family members to develop a user-friendly technology-based information, education and support service, based on the generic ACTION participatory design model. Ways of working in partnership with older people with early stage dementia and their family members are explored, and key lessons learned are highlighted. The overriding message is that elders with early stage dementia can be actively involved throughout the entire research and development process. Essential prerequisites are time and ongoing support by skilled practitioners and family members. Preliminary findings reveal that older people with early stage dementia can learn and benefit from user-friendly technology, especially when used together with others in a similar situation.

This article describes the development of a newsletter written for people living with Alzheimer's disease or a related disorder and outlines some of its benefits for people living with dementia, family carers and professionals. The publication is one of a growing number of resources that attempts to address the direct needs and experiences of persons living with dementia.

This article examines the impact of Simulated Presence Therapy (SPT) on the behaviour of six people with moderate or severe levels of dementia. Twenty-one sessions involving both SPT and a control condition (usual care) were carried out. SPT interventions were associated with lowered levels of both distressed behaviour and efforts to return home.

This article describes a consultation event held as part of the process of reviewing the qualitative evidence for the National Institute for Clinical Excellence (NICE) and Social Care Institute for Excellence Guidelines (SCIE) on dementia (2006). It shows how events such as these can provide valuable information to be included in systematic reviews but also help identify research priorities for the future.