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Dementia is a progressive, life-limiting disease (Jolley, 2010; National End of Life Care Intelligence Network, 2010; Hennings et al, 2013). Over time, people with the condition can decline, both cognitively and functionally (Schneider et al, 1999; DeKosky and Orgogozo, 2001; Torti et al, 2004; Hennings et al, 2013). The progression of symptoms is unique for each person, but generally people lose memories, are less able to use meaningful speech, become less mobile and increasingly dependent for all their care needs (Lynn and Adamson, 2003; Sampson et al, 2005; Schreder et al, 2005; Mitchell et al, 2009). In the more advanced phases of dementia, people can experience depression, social withdrawal and isolation, agitation, recurrent infections and unrecognised pain because of difficulties explaining to carers that they are in pain (Morrison and Siu, 2000; Scottish Intercollegiate Guidelines Network, 2006; Kverno et al, 2008; Department of Health, 2009; Sampson, 2012). The key prognostic indicators that a person with dementia is in the last year of life include problems with eating, swallowing difficulties, weight loss, increased frailty, falls and recurrent urinary and respiratory infections/pneumonia (Gold Standards Framework and Royal College of General Practitioners, 2011; Bosch et al, 2012).
Many people with dementia are looked after in their own home by informal carers, who are usually family members (Dunkin and Anderson-Hanley, 1998; Graneheim et al, 2014). Informal carers enable people with dementia to remain in their own homes rather than being admitted to institutional settings (Schneider et al, 1999; Graneheim et al, 2014). However the symptom burden associated with dementia can result in the informal carers of people with dementia experiencing many physical and psychological problems, such as exhaustion, chronic stress, depression and anxiety disorders (Walker and Pomeroy 1997 …
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