RESUMEN
The cartoon Fidgety Philip, the banner of Western-ADHD diagnosis, depicts a 'restless' child exhibiting hyperactive-behaviors with hyper-arousability and/or hypermotor-restlessness (H-behaviors) during sitting. To overcome the gaps between differential diagnostic considerations and modern computing methodologies, we have developed a non-interpretative, neutral pictogram-guided phenotyping language (PG-PL) for describing body-segment movements during sitting (Journal of Psychiatric Research). To develop the PG-PL, seven research assistants annotated three original Fidgety Philip cartoons. Their annotations were analyzed with descriptive statistics. To review the PG-PL's performance, the same seven research assistants annotated 12 snapshots with free hand annotations, followed by using the PG-PL, each time in randomized sequence and on two separate occasions. After achieving satisfactory inter-observer agreements, the PG-PL annotation software was used for reviewing videos where the same seven research assistants annotated 12 one-minute long video clips. The video clip annotations were finally used to develop a machine learning algorithm for automated movement detection (Journal of Psychiatric Research). These data together demonstrate the value of the PG-PL for manually annotating human movement patterns. Researchers are able to reuse the data and the first version of the machine learning algorithm to further develop and refine the algorithm for differentiating movement patterns.
RESUMEN
BACKGROUND: One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes. METHODS: We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers' after-death interviews pre- and post-intervention. RESULTS: Post-intervention there were significant increases in documented advance care wishes arising from residents' and relatives' discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes. CONCLUSION: This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.