Respond to Deterioration
Typical Illness Trajectories
People will experience different illness trajectories depending on the primary diagnosis and presence of other diseases (co-morbidities). Three typical illness trajectories for people with progressive chronic illness are described and illustrated in the figure below: 19, 20
For these individuals there is a steady progression with a slight decline in physical health over months to years. Evident decline occurs in the end of life phase, which includes increasing symptoms and rapid decline in weight and functional status in the last weeks or months of life.19, 20
These individuals are those with non-malignant, life-limiting illness with organ failure. There is decline in function over years with long-term limitations, often life-threatening episodes requiring hospital treatment, followed by further deterioration. During this trajectory there may be episodes of improvement only for function to decline again. Death can seem sudden and may occur at any time along the gradual decline in function.19, 20
People with dementia have a long variable disease progression for up to 6-8 years, which includes early impairment of memory, reduced decision making and communication capacity. Frailty is a syndrome of general physiological decline that often lacks a specific diagnosis. In this trajectory, the last year of life is characterised by a steady slow decline in overall function. If dementia and frailty occur together decline is more rapid. 19, 20
Typical illness trajectories and palliative care phases towards the end of life
Reproduced with permission from: The Royal Australian College of General Practitioners. RACGP aged care clinical guide (Silver Book). 5th edition. East Melbourne, Vic: RACGP, 2019, 2020. Available at www.racgp.org.au/silverbook
Continuity of Care
For people with dementia it is important to identify and respond appropriately to deterioration of the person which may be from their primary diagnosis or as a result of other disease or events. However, it is important to distinguish between deterioration that is due to untreatable causes, such as disease progression, or an acute or medical emergency that may warrant review and treatment.
Good clinical assessment and consultation with the person’s medical team (General Practitioner/ Neurologist/Psychogeriatrician) and if needed, external experts such as specialist palliative care or dementia advisory services is critical.
Use of the free Supportive and Palliative Care Indicators Tool (SPICTTM) (188kb pdf) during routine care evaluations and following an unplanned hospitalisation may indicate a change in the person’s condition that warrants a review of care needs. The SPICTTM includes specific clinical indicators for dementia/frailty. Visit the SPICTTM website for user guidelines and further information.
ELDAC Toolkit Educational Videos
Watch the videos on Manage Dying for Residential Aged Care and Home Care, which also discusses how to respond to a resident that is declining in health.