Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

Purpose of the study: To present a critical comparative review of published tools measuring the person-centeredness of care for older people and people with dementia. Design and Methods: Included tools were identified by searches of PubMed, Cinahl, the Bradford Dementia Group database, and authors’ files. The terms “Person-centered,” “Patient-centered” and “individualized” (US and UK spelling), were paired with “Alzheimer’s disease,” “older people,” and “dementia” in various combinations. The tools were compared in terms of conceptual influences, perspectives studied and intended use, applicability, psychometric properties, and credibility. Results: Twelve tools eligible for review were identified. Eight tools were developed for evaluating long-term aged care, three for hospital-based care, and one for home care. One tool, Dementia Care Mapping, was dementia specific. A common limitation of the tools reviewed is that they are yet to be used and validated beyond the development period; thus, their validity, reliability, and applicability needs further exploration. Also, the perspective of people with dementia remains absent. Implications: The review demonstrates the availability of a multitude of tools for measurement of person-centered care in different settings and from different perspectives, even if further testing of the tools is needed. The conceptual underpinnings of the tools are rarely explicit, which makes it difficult to ascertain the conceptual comparability of the tools.

Leisure has emerged as a prominent research theme within the growing body of knowledge on dementia, with a focus on physical activity. Yet participation in any form of leisure presupposes an ability to freely choose to partake in activities and to negotiate one’s way around key barriers. In the case of dementia, the ability to undertake leisure activities is subject to a greater range of barriers, structured in a hierarchical manner that contributes to social exclusion if not addressed. This study based on focus groups with people with dementia and their family members conducted in Dorset, UK illustrates a range of barriers to leisure participation. How to create or maintain leisure opportunities for those living with dementia where households affected by dementia do not adopt avoidance behaviour, compounding a sense of isolation and exclusion is a challenge. Leisure can be an important strategy framed as a form of resistance to the social disabilities experienced by those living with dementia and it is potentially isolating impact.

Background: This paper provides an overview of the findings from the dementia module of the 2010 Northern Ireland Life and Times (NILT) Survey: an annual survey recording public attitudes to major social policy issues. Northern Ireland, in line with many other developed countries, recently released a Dementia Strategy. The opportunity to explore the knowledge and attitudes of the general public to dementia at a national level in Northern Ireland is timely and valuable. This paper reports on an initial exploration of these attitudes, based on bivariate analysis across demographic groups. Methods: Data were analyzed using SPSS (Version 19). Descriptive and summary statistics were produced. A series of categorical bivariate relationships were tested (chi-square) and tests of association (Cramer's V) were reported. We discuss both knowledge-related findings and attitudinal findings. Results: We found that the general public in Northern Ireland have a reasonably good level of knowledge about dementia. However, attitudinal measures indicate the stereotyping and infantilization of people with dementia. Conclusions: This NILT module provides a unique source of data on attitudes to, and knowledge of, dementia. A key strength is that it provides statistically representative data with national level coverage. This information can be used to target public health education policies more effectively and to inform delivery of health and social services. The success of the module leads us to believe that it stands as a blue-print for collecting information on dementia in other social surveys.

This paper explores the reported difficulties and satisfactions with diagnostic processes and post-diagnostic support offered to people with dementia and their families living in the largest remote and rural region in Scotland. A consultation with 18 participants, six people with dementia and 12 family members, was held using semi-structured interviews between September and November 2010. Three points in the diagnostic process were explored: events and experiences pre-diagnosis; the experience of the diagnostic process; and post-diagnostic support. Experiences of people with dementia and their carers varied at all three points in the diagnostic process. Participant experiences in this study suggest greater efforts are required to meet Government diagnosis targets and that post-diagnostic support needs to be developed and monitored to ensure that once a diagnosis is given people are well-supported. Without post-diagnostic provision Government targets for diagnosis are just that, quota targets, rather than a means to improve service experiences.