The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study.

BACKGROUND: Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists' subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia. METHODS: This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA). RESULTS: Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) "The levels of well-being" (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) "Living well is a process" (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care). CONCLUSIONS: Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.

Living positively with dementia: a systematic review and synthesis of the qualitative literature.

OBJECTIVE: Little is known about how and to what extent people with dementia live positively with their condition. This study aimed to review and carry out a synthesis of qualitative studies where accounts of the subjective experiences of people with dementia contained evidence of positive states, experiences or attributes. METHODS: A meta-synthesis was undertaken to generate an integrated and interpretive account of the ability of people with dementia to have positive experiences. A methodological quality assessment was undertaken to maximize the reliability and validity of this synthesis and to contextualize the findings with regard to methodological constraints and epistemological concepts. FINDINGS: Twenty-seven papers were included. Three super-ordinate themes relating to positive experiences and attributes were identified, each with varying and complementing sub-themes. The first super-ordinate theme related to the experience of engaging with life in ageing rather than explicitly to living with dementia. The second theme related to engaging with dementia itself and comprised the strengths that people can utilize in facing and fighting the condition. The third theme captured how people with dementia might transcend the condition and seek ways to maintain identity and even achieve personal growth. CONCLUSIONS: This review provides a first step towards understanding what conceptual domains might be important in defining positive outcomes for people who live with dementia. Highlighting the potential for people to have positive experiences in spite of or even because of their dementia has important implications for de-stigmatizing dementia and will enhance person-centred approaches to care.