Stefanie Ettelt, Lorraine Williams, Jacqueline Damant, Raphael Wittenberg
People like to live where they best feel at home and in control of their lives. This should be no different for people who live in residential care, irrespective of their age, health or ability to be fully independent. Most people, understandably, will want to live in their own home for as long as possible. However for some of us there will come a time when it won’t be possible to live independently in our own homes, even if we have friends, family or others to support us.
Moving into a care home can be a daunting experience and a rupture in peoples’ lives, especially in a situation of crisis, such as after a hospital admission. In an ideal scenario the care home is the person’s ‘new home’ and efforts are made to help the new resident to feel at home as much as possible. There are studies showing that people who feel at home when living in a care home have better quality of life than those who do not (Cooney, 2012). Also, people are more likely to feel at home if they have made the decision to move into residential care themselves, rather than being placed there by social services or their relatives. It matters to people whether they can control where they live and with whom.
However, there is a lingering image of the care home as a place of ‘last resort’ that lives on in people’s minds. The image of institutionalised care resurrected itself forcefully during the first wave of the Covid-19 epidemic in spring 2020, when in many countries the pandemic claimed the lives of residents of care homes for older people in large numbers. In an effort to protect their residents, many care homes decided to shield themselves from contact with the outside world, mostly by banning visitors to the home. Whilst this might be seen as a sensible protective measure in a time of crisis, it reinforced the separation of the people ‘inside’ and the people ‘outside’ the care home, in perfect illustration of the ‘total institution’. To counter this, many care homes in England and elsewhere had gone out of their way to make their care homes more homely, and in the absence of relatives and friends became their residents’ sole means of social and emotional support.
Efforts to strengthen the emotional and social side of care have long preceded the Covid-19 crisis and typically run under the policy banner of personalisation and person-centred care. In our recent study on ‘Personalisation in Care Homes’, carried out by researchers of the Policy Innovation and Evaluation Research Unit (PIRU) in England, we aimed to better understand the different meanings of ‘home’ in care homes, including residential care and nursing homes. To do so, we had to unpack the different meanings of person-centred care and personalisation, using interviews with care home managers coupled with a comprehensive literature review (Ettelt et al., 2020). Both person-centred care and personalisation are concerned with the role of the person in receiving care. Both agree on the purpose of personalised care – improving the quality of care and quality of life for people in need of care – but they differ in their preference of the means to achieve them.
Person-centred care has developed out of concern for the well-being of people with dementia and about the appropriateness of the care delivered to them. It stipulates that dependency is part of the human condition and that every human being needs care at some point in his or her life. Thus, person-centred care emphasises the relational aspects of care that is given and received, to help people in need of care to live their lives as fully as possible, maintain their sense of identity, and remain actively involved in all decisions about themselves and their own care, with as much support as they need.
Personalisation also places the person at the centre of their care, but emphasises people’s wish to maintain their autonomy and be in control of decision-making. In domiciliary care, this has been promoted as self-directed support with direct payments (cash with which to purchase care) as the key instrument to support service users’ choice and control. It has therefore been associated with a more consumerist perspective on care organisation, and, in the context of care homes, an individualist aspect, more often associated with the more upmarket variety of care home.
In our study, we found three versions of ‘homes’ evoked by care home managers: the first version was the institution, with its emphasis on regimentation, ‘batch living’ (Goffman) and structured care delivery. Managers mostly referred to ‘the institution’ in contrast to the ethos of their care home, to distinguish their approach and emphasise the personalised nature of care giving in their home. Only in a few instances did managers concede that workloads, high levels of nursing care and safeguarding requirements can get in the way of the personalised approach they aspired to provide.
A second version of home was the family-like care home. This version models itself on the domestic home with family life at its centre. Many care home managers referred to ‘family’ to describe the relationship between their residents and their staff, noting the importance of maintaining good relationships with the person’s original family, and encouraging family celebrations and domestic activities. These were seen as helping people to connect with their lives before they moved into the care home and thus create a sense of continuity, which was especially important if the person had a degree of dementia.
A third version emerged as the hotel-style home. Managers referring to this model noted their ambition to ensure residents’ comfort and privacy, and they tended to refer to them as ‘clients’. This version of the home aligned itself with the consumerist model, which prioritises choice and control over emotional proximity and domesticity, for example by highlighting the choice of meals provided in a ‘restaurant’ rather than a ‘dining room’. While such differences may be cosmetic, there is a question whether, or to what extent, less relationship oriented care is suitable for people with reduced mental capacity and whether this type of care delivery is able to meet residents’ emotional needs more generally. Yet for some this may be an appropriate choice if this is the type of care they want.
In our paper we concluded that in an ideal scenario people would be able to choose their care home, and the version of personalised care, they feel is most appropriate to their needs and preferences. However, in England, with its constricted adult social care funding model, such choices are mostly dependent on the older person’s ability to pay. Choice of care home is de facto limited by affordability, and is much greater for those who can afford to fund their own care. For those who cannot fund their care, while local authorities are required to offer a choice of more than one care home to eligible service users, choice is still limited to care homes that accept the care home rate of their local council or to people whose families can afford to meet the difference between the care home fee and their local council’s rate. This shifts the responsibility for, and the problem of, delivering any version of personalised care to care homes and their managers, which have to make ends meet with the funding available.
The Covid-19 enforced lockdowns have applied to all types of residential and nursing care homes, irrespective of their ambition to personalise. Many countries have learnt some valuable lessons from the experience of the first wave of Covid-19. There needs to be more flexibility in arranging visits to people in care homes, who are physically dependent and emotionally vulnerable, as it is obvious that the social isolation resulting from a total ban on visits has had detrimental effects on many of them. This should not be repeated.
However, there is also a wider debate about the types of care arrangements and the development of the care home sector we would like to see in the future, when the epidemic has come to an end or is at least better controlled. In our paper, we suggest a fourth version of ‘personalised’ home: the cooperative. We stipulate that there should be a model that brings together the emphasis on caring relationships, similar to the family-like home, and the focus on individual choice, in a setting in which people live together of their own volition and with the care arrangement they determine for themselves, individually or as a group. Cooperatives like this exist, for example, in Germany, where they are called ‘Pflege-WG’ (flat share with care) and subsidised by statutory care insurance. There are reports from Asturias in Spain where a rethinking of care in care homes is underway, partly in response to the experience of Covid. The idea is to break down large units of care provision to enable smaller, more home-like entities, which are run by carers with more generalist roles than is currently practiced. Such models of care already exist, the Eden Alternative or the Green House model in the US being an example, but it needs funding, vision and determination to rethink and rebuild a better care system.
Developing new models of residential care will bring new challenges. But we should ask ourselves, how we want to live when we need care and which opportunities we need to create so that we can make the choices we need to make and feel motivated to make them earlier in our lives. For some people, moving into a care home in a crisis is too late to ever feel the benefit. Yet others live in social isolation in their own homes and would benefit from the community within a care home or other communal arrangement if they felt in the position to choose such an arrangement for themselves.
The next iteration of social care funding reform, whenever it happens, should consider how we as a society want to live in our later years and should base the funding system on consideration of how best to promote the type of care we desire.
Cooney, A. (2012): ‘Finding Home’: a grounded theory of how older people ‘find home’ in long-term care settings. International Journal of Older People Nursing 7: 188-199.
Ettelt, S., Williams, L., Damant, J., Perkins, M. and Wittenberg, R. (2020): What kind of home is your care home? A typology of personalised care provided in residential and nursing homes. Ageing and Society: 1-21. Doi:10.1017.S0144686X20001142