There is growing interest in eliciting the views of younger people with dementia (i.e. those under 65 years of age) within health and social care research. The often erroneous view that these individuals are not capable of expressing their views and experiences has now been seriously challenged. The present paper draws on the findings from 14 qualitative in-depth interviews with younger people with dementia conducted in the South-west of England, and considers some of the issues involved in interviewing people with dementia. Purposive and snowballing techniques were used to recruit participants. Data were transcribed and subjected to comparative textual analysis to index, code and analyse the data for emergent themes. Four major themes emerged: (1) the general experience of having dementia; (2) dementia diagnosis; (3) the importance of age; and (4) risk and danger issues. The results indicate that the majority of participants were articulate and insightful about their experiences and needs. The present paper concludes by arguing that the challenge for health and social care professionals is to engage with and consult such individuals about their experiences and what they want from dementia care services, and the authors consider some of the issues involved in interviewing people with dementia.

This paper reviews the literature on younger people (under 65 years of age) with dementia, in dementia care. Seventy-four relevant papers were identified by use of a search strategy derived from the methodology of systematic reviews, the majority of which originated in the UK (69, 93.2%). The need for specialist, flexible, age-appropriate, and dedicated services was a central theme in the literature. A person-centred approach was advocated within an individual or 'tailor made' model of care. However, the available evidence suggests that this model of good practice is not currently reflected in the majority of services provided in the United Kingdom. Overall, the literature argues that the needs of younger people with dementia are best served by inter-agency collaboration, early assessment, and an awareness of individual needs. Clearly, these proposals could usefully serve anybody with dementia, irrespective of age. However, aside from a few prevalence studies, and some exploratory work with small numbers of service users, little in the way of empirical work is available. The recommendations that have been made regarding dementia services for younger people are based largely on the practical experience of professionals and paid carers, rather than scientific evidence.

Sixty-seven English language articles were obtained for the review, the majority of which (44, 65.7%) had US origins. Broadly, the main issues covered in the literature were the under-utilization of services by minority ethnic groups; the prevalence of dementia in different ethnic groups; the experience of care giving in different racial groups and language as a factor in cognitive assessment. Although it has been argued that the instruments used to assess cognitive function are culturally biased, the available published evidence would seem to suggest that the fundamental issue is language ability, rather than minority group membership per se. Studies into the care giving experience amongst different ethnic or racial groups suffer from theoretical and methodological weaknesses. Studies of help-seeking among various ethnic groups in the US have found that many do not prioritize dementia as a health problem in the face of more pressing concerns. There was little consensus amongst the articles about whether services should be provided specifically for different ethnic groups, reflecting a lack of evidence concerning the efficacy of different models of service provision.

This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia – younger people (i.e. those under the age of 65) and those from minority ethnic groups.

Music in different forms is widely used in dementia care and several studies have shown that music-based activities support the well-being of people with dementia. The aim of this article is to describe the first results of an assessment study of a music-based multimedia program called ‘Picture Gramophone’ (PG). The assessment was carried out in dementia day care units ( n= 5) in Finland, Ireland, Norway and the UK. In this article we describe the results from the first three weeks. Altogether, 28 people participated in the first interview and five dropped out over the three weeks. Most participants used the PG and, according to staff, most of them benefited from its use. Our results suggest that multimedia products can be used in dementia care if support is available and the design of the product takes into account the user requirements of people with dementia.