Acta del pleno del Consejo Social de la Universidad de Castilla-La Mancha

People with dementia at the end of life generally experience a gradual decline in mobility.

In general terms, most become increasingly frail, and will experience a further decline in the final few months of life (Lunney et al., 2003b). However, the trajectory of dementia can be very uncertain and this limits the ability of professionals to provide an accurate prognosis for a person with dementia (Hanrahan and Luchins, 1995, Sachs et al., 2004, Volicer et al., 1993, Luchins et al., 1997, Mitchell et al., 2004b, Schonwetter et al., 2003).

The course of dementia is unlike that of cancer, for example, where it can be easier to predict the course and trajectory of the disease. This can be seen in the disease trajectory of chronic conditions (Figure 2.3) which also reflects the trajectory of dementia, compared to cancer (Figure 2.4) (Sachs et al., 2004). In cancer the patient will reach an advanced stage then follow a general decline over the coming weeks or months. The dementia trajectory is punctuated by declines induced by acute illness, with many incidents such as infection or falls which can become the final incident and result in death. Other chronic diseases such as congestive heart failure (CHF) or chronic obstructive pulmonary disease (COPD) have a similar trajectory to that of dementia; however, the slope is slightly steeper for dementia. A person with ‘only’ COPD and no cognitive impairment may regain baseline activities of daily living after an acute illness, but a person with dementia is less likely to return to baseline (Murray et al., 2005).

Figure 2.3 Death trajectory in chronic conditions (including dementia)

Figure 2.4 Death trajectory in cancer

No two people with dementia have the exact same symptoms, progression or trajectory, complicating prognosis and the development of treatment further (Alzheimer's Society, 2014). Moreover, not all patients will live long enough to develop advanced dementia, as people can die throughout the course of dementia (van der Steen et al., 2012a). According to van der Steen the majority of research into end of life care for dementia has focussed on advanced dementia (van der Steen, 2010), and more work needs to focus on other points in the trajectory and end of life care.

Prognostication can be particularly problematic for people in the US healthcare system, with a six month or less prognosis required to be eligible for hospice care (Brickner et al., 2004). Although the dementia trajectory makes prognostication difficult, increasing numbers of people with dementia are receiving hospice care in the US (Miller et al., 2010).

Many studies have attempted to estimate survival within dementia (Rait et al., 2010, Larson et al., 2004, Koopmans et al., 2003, Walsh et al., 1990, Williams et al., 2006). Rait and colleagues found median survival after a diagnosis of dementia in primary care was 6.7 years for those aged 60-69, falling to just 1.9 years for those diagnosed at age 90 or over (Rait et al., 2010). This does not provide an estimate of survival from onset of symptoms or consider time taken to establish a diagnosis. What is more interesting, however, is the high mortality rate in the first year after diagnosis of dementia, with a rate three times greater than people without a diagnosis of dementia. This rate dropped in subsequent years, but suggests diagnoses are made at times of crises or late in the course of dementia. Xie and colleagues conducted an analysis on data with a 14 year follow up of people with dementia,

to determine estimates of survival after onset (Xie et al., 2008). Similar to Rait and colleagues’ findings, they found age was a significant factor in predicting mortality. They reported a median survival time from symptom onset for men of 4.1 years and 4.6 years for women. When broken down into age groups these survival times after onset were 10.7 years for the age group 65-69; 5.4 for 70-79; 4.3 for 80-89 and 3.8 years for people aged 90 years and over.

Often close family members will notice the first signs of dementia, but they are often unsure as to whether these are signs of dementia or simply signs of the normal ageing process (Social Care Institute for Excellence (SCIE), 2013). Those who lack close family may not have someone to notice early signs, and may therefore live with dementia for quite some time before they receive a diagnosis. The timing of diagnosis of dementia within the UK has been a concern for some time. The National Dementia Strategy published in 2009 identified diagnosis as one of its key priorities within the UK (Department of Health, 2009) although early diagnosis was later replaced by an aim of ‘timely’ diagnosis (Burns et al., 2014).

Some tools have been developed to help professionals with prognosis, generally known as prognostic indicator guides. These include guides produced by the Gold Standards Framework (GSF) (Thomas, 2005) and Supportive and Palliative Care Indicators Tool (SPICT) (Boyd and Murray, 2010), both of which were recommended in the National End of Life Care Strategy (Department of Health, 2008a). Neither of these guides are dementia specific, however, an alternative is; the Functional Assessment Staging Test (FAST)

(Reisberg, 1987). A study of the predictions of nursing home staff and medical professionals in the US found that they estimated 1.1% of their residents would have a life expectancy of less than 6 months, but 71% died within this period (Mitchell et al., 2004a).

More recently a review from Brown and colleagues found 6 month prognoses made using the FAST scale were unreliable, as they only identified studies from the US and Israel, the reliability of other guides (such as the GSF and SPICT) were not discussed (Brown et al., 2012). Until recently the GSF prognosticator guide had not been studied prospectively.

O’Callaghan and colleagues however have reported that the tool is highly specific (92%) and moderately sensitive (63%) at identifying people in their last year of life (O’Callaghan et al., 2014). This was limited however to an acute hospital setting and was not specific to people with dementia, only including 4 people with dementia out of 99 participants.