Evidence suggests that there is usually a long delay between noticing first signs of dementia and seeking medical help. We conducted a systematic review of what people experience and how they make decisions during this time, and used a meta-ethnographic approach to synthesise the findings. Screening and quality assessment resulted in nine studies eligible for inclusion. People with dementia mainly report experiencing memory lapses, while carers focus on more subtle changes in personality. People respond to these changes in one of three ways: 1) they discount them as normal; 2) they reserve judgement as to their cause and significance, or 3) they misattribute them. Pivotal events can finally trigger help seeking. Active reflection and seeking of further evidence may lead to earlier recognition of the possibility of dementia and the need to seek help; it also reduces the risk of a pivotal event. Public education should aim to improve recognition of more subtle signs and to encourage repeated evaluation and reflection.

The perspective of domiciliary workers is needed to recruit a high-quality workforce and meet growing demand. An English ethnographic study yielded extensive insights. To structure analysis of the study data, we apply a method developed by political theorists Boltanski and Thévenot (2006) that identifies key variables in different values systems. This "orders of worth" framework is used to map out the distinctive features of the subjective world of home carers. The results can be drawn on to formulate recruitment and retention policies, to design reward strategies or to ensure that training and education opportunities engage effectively with the workforce.

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

(2018)'Going the extra mile' for older people with dementia: Exploring the voluntary labour of homecare workers. Dementia.

This article reports on the use of an innovative reflective diary method with paid home care workers caring for people with dementia. It examines the key features of the diary design, recruitment and training of participants, diarists’ approaches and responses to diary-keeping, and evaluates the use of diaries in this context. Following training, 11 volunteers (all female) employed by a U.K.-based home care organization kept diaries of their experiences of caring for those with dementia. Using specially designed diaries, they wrote about their visits to clients for a period of approximately 4 months and were remunerated for up to 16 extra hours at their usual hourly rate of pay. Overall, home care workers engaged well with the process, keeping regular, lengthy, timely, and reflective diary entries. Diary-keeping provided a means for these workers to express their emotions about their work, while enhancing their self-insight and care practices. We demonstrate the feasibility of diaries for research with this occupational group and conclude that the written reflexivity employed in diaries can document, enrich, and improve the work of these caregivers.