Blogging with dementia: Writing about lived experience of dementia in the public domain.

Public narratives around dementia have historically been negative, and have not been shaped by people with dementia themselves, but stories of living with dementia are becoming more common in the public domain. This qualitative study explored the motivations and experiences of bloggers by conducting interviews with six bloggers with dementia in the UK. Thematic analysis suggested that the asynchronous nature of blogging offered a valuable, personalised space for people with dementia to tell their own stories in their own way. Blogging as a format posed some practical challenges, but bloggers developed strategies to overcome these. Motivations for blogging were on three levels: the personal (as a journal, and as a 'room of one's own'); community (as solidarity for other people with dementia, and as comfort for families and friends) and society (as an educational and campaigning tool). Whilst the study is small, and there are many voices of people with dementia missing from the blogging community, this research demonstrates the potential for blogging by people with dementia to change public narratives and perceptions of dementia.

Improving the experience of dementia and enhancing active life--living well with dementia: study protocol for the IDEAL study.

BACKGROUND: Enabling people with dementia and carers to 'live well' with the condition is a key United Kingdom policy objective. The aim of this project is to identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia, and to understand what 'living well' means from the perspective of people with dementia and carers. METHODS/DESIGN: Over a two-year period, 1500 people with early-stage dementia throughout Great Britain will be recruited to the study, together with a carer wherever possible. All the participants will be visited at home initially and again 12 months and 24 months later. This will provide information about the way in which well-being, life satisfaction and quality of life are affected by social capitals, assets and resources, the challenges posed by dementia, and the ways in which people adjust to and cope with these challenges. A smaller group will be interviewed in more depth. DISCUSSION: The findings will lead to recommendations about what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia.

Improving website accessibility for people with early-stage dementia: a preliminary investigation.

This study, conducted collaboratively with five men who have a diagnosis of early-stage Alzheimer's disease (AD), is the first stage of a formative research project aimed at developing a new website for people with dementia. Recommendations derived from a literature review of the implications of dementia-related cognitive changes for website design were combined with general web accessibility guidelines to provide a basis for the initial design of a new website. This website was compared with an equivalent site, containing the same information but based on an existing design, in terms of accessibility, ease of use, and user satisfaction. Participants were very satisfied with both sites, but responses did indicate some specific areas where one site was preferred over another. Observational data highlighted significant strengths of the new site as well as some limitations, and resulted in clear recommendations for enhancing the design. In particular, the study suggested that limiting the size of web pages to the amount of information that can be displayed on a computer screen at any one time could reduce the level of difficulty encountered by the participants. The results also suggested the importance of reducing cognitive load through limiting the number of choices required at any one time, the very opposite of the ethos of much website design.