Articulation, service use, managing and coping: understanding the needs of older people and carers living with dementia

Background: There is increasing recognition of the need to involve people living with dementia in research that can impact on service developments in the field. Despite this, people with dementia are still under-represented and proxy/carer views have dominated discourses of care. For nursing, understanding the views and experiences of people living with dementia is particularly important for the development of effective person-centred practices. Aim and objectives: The aims of the research were to identify: The conditions that enable people living with dementia to participate effectively in decision making about the use and uptake of services The factors that affect access, uptake and use of care services for people living with dementia and their supporters Methods: A participatory and constructivist methodology guided the study; consistent with this, a mixed qualitative method approach was used to gather data. Participatory observation was used to identify key issues and key participants (four people living with dementia and four carers), who were then interviewed. The interview data were analysed using the constructivist data analysis processes of unitising and categorising. Findings: Three main themes were identified from the interview data; barriers to articulation of experiences; finding help and support; and managing and coping. The impact of these issues on the choice and decision-making processes of people living with dementia and their carers emerged in a range of ways and are presented here. Conclusions and implications for practice: Researchers and practitioners need to develop skills in engaging with conversations that may seem disjointed or to drift on to different topics The role of carers in interviews raises challenges, but ultimately researchers and practitioners need to balance and blend the views of carers while prioritising the voices of people living with dementia To be effective, services for people living with dementia and their carers, need to provide emotional and practical support