An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers’ experiences of engaging their relatives in daily activities in domestic settings. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative’s daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative’s identity; enhancing a sense of connection with their relative’s role and identity using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed.

Participation in activity is essential for the psychological well-being of people with dementia. The potential benefits of home-based activity programmes may depend on family carers, but little is known about their experience. This study aimed to elicit carers' experiences of involving the person with dementia in activity. Thirty in-depth interviews (i.e. initial and follow-up) were carried out with 15 co-resident carers of people with dementia who were recruited through local community mental health teams. Data were analysed using a grounded theory method. Overall, findings from initial interviews were taken back to the participants at the follow-up interviews. Five activity patterns were identified, which ranged from their usual activity patterns along a continuum through recognizable, illogical, irresponsible and finally reaching a dispossessed pattern. Carers used particular strategies and experienced particular emotional responses along this continuum. This work highlights the complex, temporal and dynamic nature of family carers' involvement in activity engagement. Clinician's interventions could be enhanced by: (1) recognizing the long-term experience of carers in decision making; (2) understanding the strategies used; (3) allowing carers to talk through and share their experiences in a non-judgmental way; (4) ensuring that carers are happy with any suggested interventions.

Introduction: The majority of people with dementia live at home. Homecare enablement services are considered an important short-term intervention, using a person-centred approach. Little is known about people with dementia's perspectives of the services. This study aimed to explore the users' experiences. Method: Following ethical approval, participants who had recently used homecare enablement services were invited to participate in two semi-structured interviews through homecare enablement services' teams within a local authority. Interviews focused on people with dementia's narratives of the impact of homecare enablement services on their daily functioning. Overall findings were taken back to the participants at the follow-up interviews for member checking. Interviews were digitally recorded, transcribed and analysed using grounded theory. Findings: Sixteen participants with dementia and eight carers took part. Three key themes were revealed: the meaning of enablement in later life; homecare enablement services as instrumental to support transitions in daily life; and enablement through activity engagement in everyday life. Conclusion: The scope of homecare enablement services is evolving to meet the requirements of the Care Act of 2014 and National Institute for Health and Care Excellence guidelines. Services' improvements and redesign must consider the viewpoints of people with dementia.

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PurposeThis paper aims to discuss professionals working in partnership with family carers and the importance of learning from their experiences in designing and delivering support to themselves and people with dementia.Design/methodology/approachWorking in partnership with carers is a key goal of policy and practice. This paper demonstrates how this can work in practice.FindingsKey issues are synthesized, drawing on the stories of three carers who shared their stories as part of the original conference workshop on which the paper is based.Originality/valueLessons for professionals about the nature of the dementia caring journey and dimensions of good practice are highlighted.