No / This chapter presents key findings from a year long study where two `friends of care home¿ groups were established, monitored and evaluated. The authors are both qualified social workers and one has worked as an inspector of care homes whilst the other has worked as a nurse in both residential and nursing homes. Working as researchers we wanted to draw upon our experiences and understanding of care homes to develop and provide a practical contribution that could be used to raise standards in care homes. Although the notion of setting up `friends of care home¿ groups is not new, the lessons learnt from setting up such groups have not been shared through research.

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People with advanced dementia often struggle to maintain relationships and can ultimately experience social death before their physical death. Social death occurs when a person is no longer treated as an active agent in their relationships. Relationship-centred care acknowledges the relational nature of care-giving and care-receiving, validating the support needs of both care-givers, and the person receiving care. In the context of care-giving and care-receiving, a person with advanced dementia can become viewed as a passive recipient of care. In the context of caring for people with advanced dementia, more needs to be understood about how caring relationships can be sustained until the end of life in a way which challenges the social death of people with advanced dementia, and supports carers. Understandings of, and assumptions about, the effect of dementia on personhood directly affect the way people with dementia are perceived by others, the quality of their relationships, the quality of their care and the quality of their life. Dementia is often associated with the loss of the person. Kitwood (1997) has been highly influential within dementia care in challenging the loss of personhood, and reconsidering the grounds of personhood, emphasising relationships over cognition. Kitwood’s often cited definition of personhood is: ‘a standing or status bestowed on one human being, by another, in the context of relationship’ (Kitwood 1997 p8). Kontos (2004) however, critiques this social interactionist view of personhood, suggesting it potentially relegates the ‘body’ to a symbolic position rather than guaranteeing personhood. Her work examines the way that personhood is embodied, and how this persists when a person has advanced dementia. She suggests that attention to the embodied aspects of personhood could act as an important counter to the social death of people with advanced dementia, increasing the scope and opportunities for interpersonal relationships, and improved quality of care and quality of life. Zeiler (2013) and Jenkins (2013) develop this theory further, describing intercorporeal personhood springing forth through, and in, interaction, enabling individuals who cannot express themselves without support to do so in interactions. The principle aim of this doctoral research is to examine the care-giving/care-receiving relationship, in palliative dementia care, through the theoretical lenses described above. The research took place in a care home called ‘Primrose Hill’ (a pseudonym): a specialist dementia care home (without nursing), with an increasingly frail population with multiple co-morbidities. Fifteen residents died during the 10 months of the study. The research employed an ethnographic approach, using participant observation alongside interviews and group discussions with staff. Attention was given to how people with dementia responded to care and how they were positioned within the caring relationship; were they seen as passive recipients of care or as active agents, objects or subjects? The approach was appreciative in intent, based on the assumption that care home staff, and people with dementia who live in care homes, through their experience of the human encounter, have important things to teach families, and others working in dementia care, including policy makers and care regulators. When articulated and shared, their experiences can challenge the stereotype of dementia as a ‘death that leaves the body behind’. The empirical analysis revealed three keys facets which shape the caring relationship: body work (direct hands-on bodily care); recognising and supporting selfhood; witnessing and responding to suffering. These three facets of palliative dementia care are examined and reveal the way that people with dementia, even in the advanced stages, continue to experience and respond to the world, and those around them, until they die. This is used to develop the conceptual underpinning of relationship-centred palliative dementia care. The Senses Framework (Nolan et al 2006), which sets out the conditions required for relationship-centred care to occur, is expanded to incorporate embodied selfhood and intercorporeal personhood. The research concludes by arguing, using Ethic of Care theory as an interpretive framework, that an expanded understanding of personhood that includes the ‘body’ is vital, not only at the frontline, but also at a political and societal level, if care is to have integrity.

Yes / In 2004, the author carried out a small scale study to find out the views of those living and working in private care homes in England about a range of issues connected to inspection, regulation and ways to better protect older people. This study reports on views from nineteen managers and nineteen residents about their understanding of abuse, their perceptions of the different forms of abuse and the possible action to deal with offending care staff. Although there was some consensus about the seriousness of certain types of abuse and how managers would investigate the allegation, the findings indicate that mandatory training for registered care home owners and managers is necessary to clarify their responsibilities in relation to their actions and reporting of certain offences to relevant agencies.

No / This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods bespoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.

Yes / This report looks at the experiences of people with dementia living in care homes in England, with a particular focus on whether their care offers dignity and respect. Most similar studies have relied on the views of carers, care staff and people in the early stages of dementia. This study examines directly the experiences of people including those with advanced dementia.

Care homes play a major role in supporting people with dementia at the end of their lives. Seeking to understand the views of staff on the care they provide, Nicola Wheeler and Jan R Oyebode held focus groups with a range of staff in nine care homes in the West Midlands. Here they discuss their findings and implications for practice.

No / This first in a three part series on dementia care explores communication. The Gold Standards Framework includes a workstream on improving end of life care in care homes; communication is one of seven key tasks within the GSF. Aim and method: This study aimed to gather care home staff views on communication issues. Focus groups were conducted with 36 members of direct care staff from nine nursing and residential care homes. Results: Three types of communication were identified: staff to staff; staff to resident; and staff to family. Discussion and conclusion: The implications of different approaches to communication are discussed, and recommendations made for practice.

This research explored older Slovenians’ occupations, including the ways in which the transition into a care home influenced their occupational engagement. The research encompassed three stages. Stage 1 investigated Slovenian older people’s individual experiences of occupational engagement, with a particular emphasis on their personally meaningful occupations. Stage 2 aimed to enhance understanding of the impact of transition into a care home on older Slovenians’ meaningful occupations. Finally, Stage 3 sought to provide an insight into older people’s occupational engagement in one Slovenian care home. The first two stages of this research took a phenomenological approach; focusing on the participants’ individual experiences of occupational engagement; using Interpretative Phenomenological Analysis (IPA) to approach and analyse the data. Ten older adults were interviewed in Stage 1 and six older adults were interviewed in Stage 2 at three time points: before the relocation into a care home, one month after and six months after the relocation. The final stage was ethnographic in nature; exploring occupational engagement among Slovenian care home residents as a culture-sharing group; using observations for collecting the data and analysing the resulting field notes using Thematic Analysis. The findings consistently highlighted the significance of occupations and routines in participants’ everyday lives as important parts of their identities. The first two stages highlighted the importance of a continuous experience of meaning in occupation, across participants’ lives and throughout their transition into a care home. Some of these meanings were specific to Slovenian socio-cultural, historic and geographical context. The participants especially valued productive occupations such as gardening, family-related occupations such as looking after and passing knowledge to younger generations and occupations related to particular places, such as spending time at their weekend cottages and home surroundings, walking familiar pathways or hiking Slovenian mountains. These Slovenian older adults purposefully engaged in health-promoting occupations in order to maintain their health, in turn influencing their occupational engagement. Since their everyday routines were related to particular places, Stages 2 and 3 highlighted that some of these occupations were disrupted by their new living environment. The care home residents managed this situation by trying to maintain their engagement in occupations that they perceived personally meaningful and enjoyable. This research is foundational in the Slovenian context, with the findings also being transferrable to individuals and contexts outside Slovenia. From exploring the impact of older people’s living environments on their meaningful occupational engagement, the findings contribute original knowledge to occupational science regarding the link between occupation, place, identity and the transactional perspective of occupation. This indicates the need to develop further therapeutic programmes and services for older people making the transition to care home living.