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

Most people with dementia in the UK are cared for at home. Those receiving social care largely receive this from the private sector, predominantly in care homes (Ballard et al., 2001), with the majority of deaths in 2010 in people with dementia occurring in care homes (63%) or hospitals (30%) (Kane, 2012).

2.9.1 Preferred place of care

Within England through the End of Life Care Strategy, it is policy to ensure that an individual’s wishes as to where they would like to die are adhered to as much as possible (Department of Health, 2008a). According to Gomes and colleagues, the majority of people would prefer to die within their own home, although for some a care home is regarded as a home (Gomes et al., 2012). However, this has not been explored with people with dementia (Badrakalimuthu and Barclay, 2014). They may have different preferences arising from the nature of the disease and potential burden on family members. A possible desire among those with dementia to die at home is further complicated by increased risk of infections, difficulties swallowing and emergency admissions to hospital as previously discussed (Kane, 2012, van der Steen, 2010, Mitchell et al., 2009).

2.9.2 Care at home

A retrospective survey with families of people with dementia showed that those who remained at home had fewer symptoms at the end of life, compared to those who spent all or some of the time in other settings including nursing homes and hospitals (Volicer et al., 2003). Families also reported fewer physical signs of distress in people who died at home compared to in hospital. Moves to nursing homes were often caused by confusion and lead to behavioural problems. Like much of the literature on end of life care and dementia, this study was conducted in the US, therefore caution needs to be taken when applying these findings to a UK setting, because home care in the US may differ to that in the UK. For example, hospice care in the US is usually at home and there are fewer building based hospices, whereas in the UK hospices exist more as bed-based facilities and are less

home-based. However, in the UK there are growing numbers of community-based hospice or palliative care teams, with 337 home palliative care teams in 2012 (Bolognesi et al., 2014).

2.9.3 Care homes

Mitchell and colleagues studied care received by people with advanced dementia in nursing homes in the US (Mitchell et al., 2004a). They found that it was common for invasive treatments to be offered to residents with dementia, including feeding tubes, laboratory tests and intravenous therapy. Restraints were more commonly applied to people with advanced dementia compared to residents with cancer. Finally, they found pressure ulcers and the use of anti-psychotics were more prevalent in residents with advanced dementia compared to people with cancer. The authors concluded that more needs to be done in nursing homes to understand the terminal nature of dementia and the palliative approach that should be taken in end of life care.

Many residents of care homes in the UK have dementia, either with or without a formal diagnosis. This is suggested by the fact that half of all deaths in 2012 in care homes in England and Wales were from dementia (Office for National Statistics, 2013)^.Barclay and colleagues noted that care homes are increasingly becoming acknowledged as ‘important providers’ of palliative care for older people (Barclay et al., 2014) and hence providers of palliative care for people with dementia.

A case study report of two nursing homes and a survey of 180 managers of nursing homes from Seymour and colleagues demonstrated how end of life care for older people in England requires improvement (Seymour et al., 2011). They identified several key factors

which influenced their conclusion of ‘poor’ care, including: 1) the relationship with the GP, in particular the support from the GP and willingness to prescribe; 2) lack of support from out-of-hours services; 3) lack of support from other agencies including district nursing teams; 3) the cost of syringe drivers; and 4) lack of access to training for staff. Access to syringe drivers is particularly important at the end of life, with potential implications for pain management. Others have shown poor pain management in care homes is an international problem (Torvik et al., 2008, Miller et al., 2004).

Seymour et al. highlighted the importance of the multidisciplinary approach and how the limited availability of it can have a negative influence on the care received. However, caution to the interpretation of these results should be advised due to the limited cases involved in the study (two) and results from the survey data.

Handley and colleagues, however, have similarly identified issues of working relationships between primary healthcare staff and care home staff which did not have onsite nursing facilities (Handley et al., 2014). They reported that although GPs and district nurses visited the care home residents, rarely was there documentation to discuss end of life care or signs of deterioration, with ambiguity about roles. This is despite primary healthcare staff acknowledging it was their responsibility to have discussions about end of life care and future care planning. Handley et al. call for better working relationships between health care and care home staff from entry to a care home up to and including end of life.

2.9.4 Hospital

Efforts that have been made to reduce deaths in hospital across all conditions (Andrew, 2012), may be viewed as positive, given that hospitals are not the best place for people with dementia. It is argued that most treatment which is undertaken in a hospital among people with dementia could be undertaken at home or in care homes (Givens et al., 2010, Loeb et al., 2006), with the exception of some treatments such as treatment of fractures. Morrison and colleagues found that following an acute illness there was an increased risk of mortality at 6 months after hospitalisation from a hip fracture or pneumonia amongst people with dementia compared to people who were cognitively intact (Morrison and Siu, 2000b). They recommended that treatment following such incidents or illnesses should be focussed on increasing comfort as opposed to aggressive or invasive life prolonging efforts. However, this study was only completed in one hospital in the US, limiting its generalizability. It is also not clear if relatives of the patients opted for a palliative approach to their care, as opposed to life-prolonging treatment.

Gozalo and colleagues in the US demonstrated that transition to hospital at the end of life in nursing home residents with cognitive impairment (as defined by a cognitive performance score of 5 or 6 on the MDS cognitive performance scale) was associated with ‘poor’ quality care. They found those having more transitions to hospital were more likely to have feeding tubes and stage IV decubitus ulcers (Gozalo et al., 2011). Harrison-Dening and colleagues interviewed carers of people with dementia in London and found people with dementia were often discharged from hospital in a worse state than when admitted to hospital (Harrison-Dening et al., 2012a). They were discharged with infections, bed sores and worse behavioural problems than they were experiencing on admission. It is now asserted that a

hospital is not the best setting for people with dementia to receive care and everything should be done to prevent transfer between settings when people with dementia are at the end of life.

2.9.5 Hospice care

Many in the palliative care world for example, van der Steen have recommended a palliative care approach at the end of life for people with dementia (van der Steen et al., 2014); and have observed that care provided by a hospice is rarely available to people with dementia (Hughes et al., 2005). Similarly, poor access to specialist palliative care has been documented in the literature (Davies et al., 2013, Sampson et al., 2006). More needs to be done to ensure that there are equitable end of life care services for people with dementia that enable people to die in their preferred place of care, and receive ‘good’ quality end of life care in the UK.