Large numbers of people with dementia live in care homes. Decisions about permanent care are usually made by family members and professionals with little involvement from people with dementia. This qualitative paper explores the personal experience of this move among people with dementia. Eighteen people with dementia were interviewed before and after a move into permanent care. Before moving into permanent care, a realization of one’s own difficulties, clearly expressed hopes and fears, and a wish for a role in preparation for the move were identified. After the move, both positive and negative experiences of the process were recalled, with participants clearly identifying what had helped them most in the process. Moving to a care home need not be a depressing process for people with dementia, who may be meaningfully involved in the process. Further research will profit from direct interviewing of the core people in the move, the people with dementia themselves.

This article describes findings from a project that explored what happens to people with dementia (PWDs) following discharge from a general hospital to a residential care home. In 15 out of 109 cases referred to a hospital psychiatric liaison team, admission to a residential care home was indicated during the hospital stay. This ‘last resort’ for families, following repeated hospital admissions and a deteriorating condition, was accepted when all involved agreed that it was in the best interests of the PWDs. Four months after the move, carers reflected on their criteria for choosing the home, their expectations and whether these were met. Carers’ own wellbeing improved and their mental distress reduced as the PWDs appeared settled and safer. However, the findings suggest a continuing key role for family carers of PWDs in care homes and emphasises the need for advocacy for PWDs without such support.

Background and purpose The objectives were to assess the feasibility and validity of using markers of dementia‐related health as indicators of dementia progression in primary care, by assessing the frequency with which they are recorded and by testing the hypothesis that they are associated with recognised outcomes of dementia. The markers, in 13 domains, were derived previously through literature review, expert consensus, and analysis of regional primary care records. Methods The study population consisted of patients with a recorded dementia diagnosis in the Clinical Practice Research Datalink, a UK primary care database linked to secondary care records. Incidence of recorded domains in the 36 months after diagnosis was determined. Associations of recording of domains with future hospital admission, palliative care, and mortality were derived. Results There were 30,463 people with diagnosed dementia. Incidence of domains ranged from 469/1000 person‐years (Increased Multimorbidity) to 11/1000 (Home Pressures). An increasing number of domains in which a new marker was recorded in the first year after diagnosis was associated with hospital admission (hazard ratio for ≥4 domains vs. no domains = 1.24; 95% confidence interval = 1.15–1.33), palliative care (1.87; 1.62–2.15), and mortality (1.57; 1.47–1.67). Individual domains were associated with outcomes with varying strengths of association. Conclusions Feasibility and validity of potential indicators of progression of dementia derived from primary care records are supported by their frequency of recording and associations with recognised outcomes. Further research should assess whether these markers can help identify patients with poorer prognosis to improve outcomes through stratified care and targeted support.

Identifying routinely recorded markers of poor health in patients with dementia may help treatment decisions and evaluation of earlier outcomes in research. Our objective was to determine whether a set of credible markers of dementia-related health could be identified from primary care electronic health records (EHR). MethodsThe study consisted of (i) rapid review of potential measures of dementia-related health used in EHR studies; (ii) consensus exercise to assess feasibility of identifying these markers in UK primary care EHR; (iii) development of UK EHR code lists for markers; (iv) analysis of a regional primary care EHR database to determine further potential markers; (v) consensus ConclusionsEHR captures important markers of dementia-related health. Further research should assess if they indicate dementia progression. These markers could provide the basis for identifying individuals at risk of faster progression and outcome measures for use in research.