Together in later life: how extra care housing can support couples affected by dementia

PurposeThe purpose of this paper is to present the views of people living with dementia in extra care housing (ECH). This is a model of housing with care and support aiming to support older people, including those with dementia, to live independently. Previous research identifies benefits but is predominantly derived from third-party accounts, with the voices of those living with dementia in ECH significantly absent.Design/methodology/approachThis study adopted a qualitative approach conducting 100 interviews across 8 ECH schemes in England. Over half of the interviews were conducted with people living with dementia and their families with the remainder involving staff and commissioners.FindingsFindings suggest there are a range of benefits including owning your own home, having a safe, age friendly location with flexible support, social interaction and continuing to live as a couple. Challenges included availability of staff, flexible resourcing, loneliness and the advancing symptoms of dementia.Research limitations/implicationsDespite efforts to create an inclusive, diverse sample, the participants were all White British. Participants involved were identified by gatekeepers, which may present some bias in the selection.Practical implicationsWhilst ECH offers benefits to people living with dementia, addressing the challenges is essential for effective dementia care. Improving staff training, promoting person-centred care and fostering an inclusive community are critical for enhancing residents’ well-being and quality of life.Originality/valueThis paper explored the lived experiences of residents and family members, providing new insight into the advantages and disadvantages of ECH for people living with dementia.

The relationship between building design and residents’ quality of life in extra care housing schemes

PurposeThe purpose of this paper is to explore and compare the motivations and expectations that older people have when choosing to move into either a private or housing association (HA) extra care housing (ECH) scheme, and any effects this had on its residents.Design/methodology/approachThis qualitative study is based on findings from four HA schemes in Tower Hamlets, London, and one private scheme in Warwickshire. Eight semi-structured interviews were conducted with five women and three men of varying backgrounds, from schemes managed by different associations and companies. Interview transcripts were coded and analysed thematically.FindingsAll residents moved into ECH in response to deteriorating health. However, almost all residents had felt obliged to move by others, generally their children. Few residents had any expectations of ECH on arrival, but many developed high expectations of an increased sense of independence and security and of an improved social life. ECH appeared to be beneficial for residents’ health and well-being.Research limitations/implicationsThe inability to recruit an equal number of people from HA and private scheme, alongside the small sample size, may compromise the external validity of any conclusions drawn from any comparisons.Practical implicationsThis research identifies a lack of knowledge about ECH among the general population and offers insight into areas of poor management within ECH schemes which could be improved.Social implicationsInadequacies in the ECH model could be attributed to failures in the current health and social care system. Differences between expectations and perceptions of HA vs private schemes should be acknowledged and responded to.Originality/valueThis is a rare example of research exploring the relationships between ECH residents’ motivations and expectations (Hillcoat-Nallétamby and Sardani, 2019), and between those in HA vs private schemes.

Extra care housing (ECH) is a type of housing with care and support designed to enable older people to age in place. Approximately one fifth of residents living in ECH are living with dementia and yet, there remains gaps as to how best to support people to live well with dementia in the context. ECH stock across the United Kingdom (UK) includes a diverse range of options that can be grouped into integrated, specialist and separated accommodation. Integrated models involve residents with dementia living alongside residents without dementia. Specialist ECH offer accommodation exclusively for people living with dementia. Separated models offer a separate area for residents with dementia within a larger, integrated site. How these different models work for residents living with dementia is little known and has remained a significant gap in knowledge that impairs both professionals and people living with dementia when choosing housing and care. This paper reports on findings from a large study of residents living with dementia in ECH. The focus is on the potential benefits and challenges of different models of provision. Data were generated from interviews with 100 participants (residents, family members, staff, and adult social care professionals) at eight case study sites across England. Findings demonstrated that there are potential benefits and challenges within each model, but the limited diversity of stock limits choice. Multiple variables beyond the model of provision affect the lived experience, meaning that there is no universal model of optimal support. Rather, the approach and resources of each site is more important than the model of provision. Suggestions for future research directions are considered.

PurposeThe purpose of this paper is to report on a scoping review of the advantages and challenges of extra care housing (ECH) provision in the UK for people living with dementia. Access to suitable housing is a fundamental right for people living with dementia and can enable people to live as well as possible (Twyford and Porteus, 2021). Understanding the advantages and disadvantages of different models of housing with care has been identified as a research priority by people living with dementia (Barrett et al., 2016) but “there is no current consensus on the best model of specialist housing for people with dementia” (Twyford and Porteus, 2021, p. 29).Design/methodology/approachThis scoping review identifies the advantages and disadvantages of living in ECH for people with dementia. It is the preliminary stage of a study that seeks to develop knowledge about different models of ECH for people living with dementia (Atkinson et al., 2021).FindingsAdvantages include the promotion of independence, flexible staffing, safety and security, social inclusion, physical design and integrated service provision. Disadvantages include barriers to entry, tensions between independence and support, managing advanced dementia, resourcing flexible care, managing social exclusion, loneliness and stigma and a disabling environment.Research limitations/implicationsThe scoping review reinforces the need for further research into different models of ECH provision in the UK for people living with dementia. The review provides insight that is of benefit to all stakeholders involved in ECH and contributes to the development of evidence-based provision called for in the recent All Party Parliamentary Group inquiry (Twyford and Porteus, 2021).Originality/valueThis scoping review summarises the current position for people living with dementia in ECH.

With over two-thirds of people with dementia living in the community and one-third of those living alone, it is important to consider the future housing needs of this population, particularly as symptoms of cognitive impairment increase. Policy in England has focused on enabling people living with dementia to remain in their own homes for as long as possible, often with the support of a family carer. However, many people struggle to maintain an acceptable quality of life in their own homes as their dementia advances, often due to the design limitations of mainstream housing and the challenge of finding specialist domiciliary care that is affordable and of sufficient quality. Extra care housing offers a model that aims to support older people living in their own apartments, whilst also offering specialist person-centred care as and when it is needed. This paper reports on a longitudinal project that explored how extra care housing can respond to the changing social care needs of residents, including those living with dementia. Participants included residents and staff from four extra care housing schemes, one of which was a specialist dementia scheme, in two regions of England. Interviews were carried with 51 residents across 4 rounds at 5 month intervals between October 2015 and June 2017. Interviews were also carried out with 7 managers, 20 care staff and 2 local authority commissioners of housing for older people. Key factors included person-centred care and support, flexible commissioning and staffing, appropriate design of the environment and suitable location of the scheme within the wider community. The challenge of delivering services that addresses these issues during a period of reduced public spending is acknowledged. Further research is suggested to compare different approaches to supporting people with dementia, including integrated and separated accommodation, and different stages of dementia.

Background Extra care housing is a model of housing for older people where residents live in self‐contained accommodation with flexible care and support available 24/7. Ageing populations, seen globally and in the UK, mean increasing demand for this type of housing which may help people live independently for longer. However, schemes vary widely (e.g. in size and facilities). Objectives To explore whether and how extra care housing was defined by studies conducted in the UK. Methods We conducted a scoping review. ASSIA, CINHAL, Medline and four further databases, along with relevant websites, were searched in June 2024 and citation‐chasing completed on included studies. Systematic reviews and primary research and evaluations published since 2010, on extra care housing for older people and investigating any outcome, were included. We assessed whether studies met our working definition of extra care housing, which was based on published literature and stakeholder consultation. Results Of 70 included studies, most ( n = 55) defined extra care housing in some way. These definitions tended to be descriptive (i.e., part of the background), rather than applied (i.e., used to decide whether schemes should be included in the study). Studies were most likely to refer to the need for extra care housing to have self‐contained accommodation and communal facilities. Few studies indicated in their definition that residents should rent/own their accommodation, or that housing and care should be contracted separately. Conclusions Whilst there is a growing body of evidence regarding the provision of extra care housing as a model of housing for older people, there is variation in how it is defined. Consensus on the definition of extra care housing is needed for older people seeking to understand their housing options, for providers and policymakers, in ensuring that ECH meets the needs of residents, and for researchers studying extra care housing.

Purpose The benefits of “green dementia care”, whereby people living with dementia are supported to connect with nature, are increasingly being recognised. Evidence suggests that these benefits span physical, emotional and social spheres and can make a significant contribution towards quality of life. However, care settings often present specific challenges to promoting such connections due to a range of factors including risk-averse cultures and environmental limitations. The purpose of this paper is to report on a project that aims to explore the opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in residential care and extra care housing schemes in the UK. Design/methodology/approach Data were gathered from 144 responses to an online survey by managers/staff of extra care housing schemes and care homes in the UK. In depth-case studies were carried out at three care homes and three extra care housing schemes, involving interviews with residents, staff and family carers. Findings A wide variety of nature-based activities were reported, both outdoor and indoor. Positive benefits reported included improved mood, higher levels of social interaction and increased motivation for residents, and greater job satisfaction for staff. The design and layout of indoor and outdoor spaces is key, in addition to staff who feel enabled to promote connections with nature. Research limitations/implications This paper is based on a relatively small research project in which the participants were self-selecting and therefore not necessarily representative. Practical implications The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes. Social implications Outdoor activities can promote social interaction for people living with dementia in care settings. The authors’ findings are relevant to the recent policy focus on social prescribing. Originality/value The paper makes some key recommendations for good practice in green dementia care in extra care housing and care homes.

PurposeThis paper explores residents' perceptions and experiences of extra care housing as an integrated model of housing with care.Design/methodology/approachData were collected in a longitudinal qualitative study based on four extra care housing schemes. Data from interviews with residents, care workers, managers and local commissioners were analysed thematically.FindingsThe integration of housing with care enabled many older people to manage their care proactively. However, the increasing number of residents with complex health and care needs, including chronic illness, led some residents to question the ability of the model to support residents to live independently.Research limitations/implicationsThe study struggled to recruit sufficient residents from the specialist dementia setting who were able to communicate their consent to take part in the research. In addition, the quality of qualitative data collected in interviews with participants at this setting reduced over successive rounds of interviews.Practical implicationsThe study suggests the need to ensure that residents are fully informed about levels of care and support is available when considering a move into extra care housing.Originality/valueThis paper provides a timely opportunity to consider extra care housing as an example of an integrated housing service, particularly in light of the current challenges facing the sector.

PurposeThe purpose of this paper is to provide an overview of the process of commissioning adult social care services in England. It reflects the literature on commissioning at the strategic level followed by a section on operational or micro-commissioning. The rest of the paper focusses on the emergence of ideas about outcomes-based commissioning (OBC) in the field of adult social care and ends with critical consideration of the effectiveness of OBC in adult social care as applied to support and care provided in extra care housing.Design/methodology/approachThe review of strategic and operational commissioning in adult social care in England (and Scotland in brief) is based on both policy documents and a review of the literature, as are the sources addressing OBC in adult social care particularly in extra care housing settings.FindingsThe core of this paper focusses on the challenges to the implementation of OBC in adult social care in the context of provision for residents in extra care housing. Of central importance are the impact of the squeeze on funding, increasing costs as a result of demographic change and the introduction of a national living wage plus the focus on the needs of service users through the idea of person-centred care and resistance to change on the part of adult social care staff and workers in other relevant settings.Originality/valueAddressing the implementation of OBC in adult social care in England in the context of extra care housing.

Purpose – Extra care housing (ECH) is housing for older people that aims to provide flexible care while fostering independence. The purpose of this paper is to examine the impact that some of the successes and failures in improving accessibility during remodelling had on care provision, in order to offer advice to social housing providers planning to remodel existing properties into ECH. Design/methodology/approach – The data consisted of an inventory of accessibility features and assistive technology (AT) items in flats and common areas. The data were drawn from ten ECH schemes in different regions of England. Findings – Most of the AT found was low-technology supporting independence, such as grabbers; some was specific to care provision, such as hoists. Even after remodelling, the design and layout of most buildings did not fully comply with accessibility standards, leading to increased provision of care for some tenants: a care-negative situation. Research limitations/implications – This multidisciplinary, original research on remodelling into ECH presents successful examples of accessibility, AT and care integration that required active tenant involvement and creative design input from care staff, architects and builders who were AT and accessibility aware. It is argued that for new and remodelled ECH buildings to be care-neutral, designers need to work towards the most inclusive model of ECH. Originality/value – This is original research that has produced guidance for builders, developers, policy makers and other stake holders.

This article explores the means by which the end-of-life care (EoLC) provided for people living in extra-care housing may be improved. Extra-care housing is a form of specialist housing that enhances people’s ability to remain self-caring by providing access to services that promote independent living. With the expansion of the extra-care housing sector, the NHS National End of Life Care Programme and Housing 21 felt it was important to investigate EoLC in extra-care housing schemes. Staff and tenants from three Housing 21 extra-care schemes were consulted regarding current practice in the planning and delivery of EoLC and their experiences of local NHS services. The resulting report, Is it That Time Already? Extra Care Housing at the End of Life: A Policy-into-Practice Evaluation, summarised in this article, calls on health and social care workers to cooperate with housing schemes to improve understanding and support of each other’s work, in order to enable tenants to die at home if that is what they desire. Conflicts of interest: The employing organisations of both authors were involved in this project and the resulting report

BackgroundBritish government policy for older people focuses on a vision of active ageing and independent living. In the face of diminishing personal capacities, the use of appropriate home-based technology (HBT) devices could potentially meet a wide range of needs and consequently improve many aspects of older people's quality of life such as physical health, psychosocial well-being, social relationships, and their physical or living environment. This study aimed to examine the use of HBT devices and the correlation between use of such devices and quality of life among older people living in extra-care housing (ECH).MethodsA structured questionnaire was administered for this study. Using purposive sampling 160 older people living in extra-care housing schemes were selected from 23 schemes in England. A face-to-face interview was conducted in each participant's living unit. In order to measure quality of life, the SEIQoL-Adapted and CASP-19 were used.ResultsAlthough most basic appliances and emergency call systems were used in the living units, communally provided facilities such as personal computers, washing machines, and assisted bathing equipment in the schemes were not well utilised. Multiple regression analysis adjusted for confounders including age, sex, marital status, living arrangement and mobility use indicated a coefficient of 1.17 with 95% CI (0.05, 2.29) and p = 0.04 [SEIQoL-Adapted] and 2.83 with 95% CI (1.17, 4.50) and p = 0.001 [CASP-19].ConclusionsThe findings of the present study will be value to those who are developing new form of specialised housing for older people with functional limitations and, in particular, guiding investments in technological aids. The results of the present study also indicate that the home is an essential site for developing residential technologies.

Extra care housing facilities in the UK are intended to offer a community-based alternative to care home placement. However, little is known about staff’s views of the appropriateness of extra care housing for people with dementia. This paper describes a mixed-methods study which explored this issue using statistical modelling of frontline staff’s recommendations of the best care setting for care home entrants; thematic analysis of transcripts from a simulated Resource Allocation Management Panel meeting; and content analysis of care coordinators’ reasons for not considering extra care housing in actual care home applications. Frontline practitioners saw extra care housing as a valuable alternative for a significant minority of care home entrants. However, extra care housing was not recommended if people needed care at night. Social care managers expressed general support for the idea of extra care housing, but appeared overwhelmingly focused on maintaining people at home and unsure where in the care pathway extra care housing sat. More evidence is needed on whether extra care housing can be an alternative to care homes and how services should be arranged to meet the needs of people living in extra care housing.

This paper reports findings from a two-year EPSRC-funded study that examined how sheltered housing and residential care homes in England had been remodelled to Extra Care Housing (ECH). ECH is a relatively new type of housing for older people, which aims to provide flexible care while fostering independence, though no agreed definition of ECH exists. Ten case studies of social housing schemes that had been remodelled into ECH were chosen from different regions of England. Access and assistive technology in flats and communal areas were audited by a multidisciplinary team. The aim of this paper is to examine the impact that some of the successes and failures in improving accessibility during remodelling had on care provision. Even after remodelling, the design and layout of most buildings did not fully satisfy current accessibility standards, leading to an increased need for care for some tenants once the building was reoccupied. Successful examples of accessibility, assistive technology and care integration required both active tenant involvement and creative design input from care staff, architects and builders who were assistive technology and accessibility aware. It will be argued that for new and remodelled ECH buildings to be care-neutral, designers need to work towards the most inclusive model of ECH.