Background to Research Audit I was part of the team that carried out this research audit in 2011 while I was working as an associate specialist with Dr Adrain Treloar at The Greenwish Advance Dementia Service, I did a presentation in the U.K at a National Conference of older adult psychiatry in the U.K.
Sample and Method Audit of last 48 consecutive deaths from Greenwich Advanced Dementia Service (GADS) upto 2010, a specialist service which sets out to provide care for people with dementia (PWD) at home until they die.
Results 48 PWD died between 2006 and 2010. Mean time in GADS = 379 days (range 6 – 2099). 47 lived at home with a key carer and one lived alone with family carers coming in on a rota to support. 15 (31%) were male. Mean age at death = 82.9 (range 59.6 – 96.8). All had advanced disability requiring 24-hour care. 39 (81%) were provided with hospital beds and a number also had hoists at home.
The Gold Standards Framework (GSF) “Surprise Question” failed to identify 31% (n=15) of those who required a more palliative approach because of substantial mental distress. The GSF “Prognostic Indicator Guidance” showed similar difficulties, it failed to identify 5% (n=17). A National Council for Palliative Care (NCPC) algorhythm that includes severe distress as an indicator for a more palliative approach worked much better, identifying 100% of those thought to need a more palliative approach.
Most patients had ongoing needs for psychotropic treatment to reduce distress psychosis and agitation in the last six months of life. Despite care to reduce and avoid unnecessary use, 69% (n= 33) received anti-psychotics and some were treated with other psychotropic agents such as antidepressants. Pain management was also important with 50% receiving opiates. 77% (n=37) died at home with a small number requiring brief hospital admissions towards the very end of life due to sudden changes and a lack of any 24-hour service to support them. The large majority died peacefully and well at home without the need for artificial nutrition or hydration. Feedbacks from bereaved relatives were extremely positive.
Conclusion Severe mental distress in advancing dementia is a key and common indicator for a more palliative approach. Tools designed to identify the need for palliative care should recognize this. Most people can die peacefully with dementia but psychiatric needs continue through to death in the majority. Advanced dementia care is very well received by carers.