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

Dementia affects over 57 million people worldwide (World Health Organization, 2025). In the UK, the number of people living with dementia is projected to reach 1.4 million by 2040 (Alzheimer’s Research, 2023). As a progressive neurological condition, people living with dementia often require increasing levels of daily care and support. Unpaid carers, often spouses or long-term partners, provide most care outside institutional settings (Livingston et al., 2017; Henderson et al., 2019). A Dementia Carers Count (2024)UK survey found that 47% of carers are spouses or partners.

While unpaid caregiving is widely associated with emotional and physical strain (Livingston et al., 2017), positive aspects are also reported, such as feelings of purpose and pride (Quinn et al., 2022). Most people over 65 in the UK live with a partner, a growing trend because of an ageing population, narrowing life expectancy gaps and increasing new later-life relationships [Office for National Statistics (ONS), 2023]. Given that dementia is predominantly diagnosed in older adults and chronic health conditions become more common with age (Maresova et al., 2019), it is not uncommon for both parties in a “couple” to have one or more chronic conditions. This adds complexity to both the relationship and the caregiving dynamic of mutual support.

Qualitative research reports that couples affected by dementia strive to maintain togetherness despite shifting roles (Wadham et al., 2016; Clark et al., 2019; Dunn et al., 2024). Intimate relationships can anchor both parties (with and without dementia), providing emotional continuity, mutual recognition and reinforcing identity (Moyle et al., 2011), as well as reciprocal practical support that might negate the need for services. As dementia progresses, the relationship is renegotiated, shifting towards caregiving and dependency. While some couples adapt, others can experience loss, communication challenges and emotional distance (Conway et al., 2020; Sinclair et al., 2018), redefining their shared identity. Dementia occurs in the context of relationships that shape a person’s sense of self and identity (Brooker, 2007; Tieu and Matthews, 2024). Thus, considering couples as a unit, as well as individuals, can enhance both parties’ well-being in the context of life with dementia.

Access to appropriate housing is essential for dementia care and a fundamental right for people living with dementia (Twyford and Porteus, 2021). Most people in the UK living with dementia reside in their own homes, but for some, specialist supported accommodation is crucial. Extra care housing (ECH) has evolved as a specialist option for older people in the UK and internationally and aligns with an established policy principle that promotes sustaining independent living (Older People’s Housing Taskforce, 2024). A range of terminology is used in across the globe for comparable models (e.g. assisted living and housing with care) and no unified definitions exist (Atkinson et al., 2014). The proportion of older people living in UK ECH has been reported to be lower than those in USA and Australia (Jones Lang LaSalle, 2015). Although there are no contemporary figures on residents, as of 2025, there are approximately 1,940 ECH schemes in the UK, including 1,729 schemes in England, which contribute to an estimated 520,000 retirement housing units across England (Elderly Accommodation Council, 2025; Twyford and Porteus, 2021). Provision is diverse in size, location and design, with specialist, separated and integrated models available for people with dementia (see Oatley and Atkinson, 2024).

The principles underpinning ECH promote safe and supported independent living (Smith et al., 2022), offering private, self-contained apartments within a larger scheme, with communal facilities (e.g. restaurant and hairdresser) and 24-h flexible care (Oatley and Atkinson, 2024). Unlike traditional residential care, ECH provides various tenures, including ownership, rental and lease agreements, while care services are funded separately to the housing provision. ECH supports “aging in place”, by adapting care to changing needs, making it theoretically well-suited to dementia’s progression. However, it is now widely accepted that it cannot guarantee a “home for life” and certain symptoms of dementia (e.g. aggression, walking with purpose, self-neglect and night-time care needs) can mean ECH is no longer suitable for a person with dementia (Barrett, 2020; Barrett et al., 2016; Evans et al., 2020; Atkinson et al., 2023). That said, approximately one-fifth of ECH residents are estimated to live with dementia, including those without or unwilling to seek diagnosis (Barrett, 2020). While providers offer flexible, needs-based support, rather than diagnosis-led care, research on good practice for dementia in ECH remains limited.

A key advantage of ECH over care homes is that couples can move in together with onsite care as needed (Oatley and Atkinson, 2024). No data exist on the number of couples living in ECH or how are affected by dementia (i.e. where one or both partners have dementia). Canadian research on assisted living (similar to ECH) found that couples affected by dementia move in out of marital responsibility rather than synchronicity of care needs, suggesting value in flexible housing with care options. However, UK research on prospective residents reported that couples valued staying together longer and reducing caregiver stress, but worried about losing community connections and uncertainty over when to relocate, suggesting choice to relocate for couples are complex (Poyner et al., 2017). Although evidence is limited, these issues appear relevant beyond Canada and the UK, with couples elsewhere facing similar challenges in balancing relationship needs, care and social connections.

This paper presents findings on couples from a broader study on dementia and ECH (DemECH; Atkinson and Oatley, 2022). DemECH identified benefits of ECH for people with dementia included homeownership, a safe, age-friendly location, flexible support, onsite social interaction and the opportunity to live as a couple while receiving individualised care (Oatley and Atkinson, 2024). This paper explores couples’ experiences of living in ECH, offering insights into how ECH can support couples and highlighting critical knowledge gaps.

This DemECH project addressed the following question:

This paper reports on project findings related specifically to the theme of living experiences of couples affected by dementia in ECH. Ethical approval was granted by the Health Research Authority (21/HRA/3769). A project advisory group consisting of professionals with expertise in housing, social care and dementia and ECH residents living with dementia supported research development, design and implementation.

Eight ECH schemes were purposively identified via the advisory group, NIHR ENRICH network and desktop research to represent different providers, locations, sizes and model of provision (Table 1). Face-to-face semi-structured interviews were conducted with 34 residents living with dementia, 6 resident spouses without dementia, 5 non-resident family members, 9 residents without dementia and 34 scheme staff. In all, 12 external adult social care professionals (e.g. social workers and commissioners) were also interviewed using Microsoft Teams. Interviews were recorded, transcribed and pseudonymised. Residents were given the choice about whether to participate alone or with another person. Seven residents with dementia chose dyadic interviews (either with a resident spouse or family carer). This approach was adopted for ethical reasons to ensure participants felt comfortable, retained control over their mode of participation and were well supported to communicate their experiences. Joint interviews carry potential limitations, such as one dominating the conversation or a reluctance to disclose sensitive information in front of the other. However, in practice, these dynamics were not readily apparent in the data.

Participants living with dementia were identified by staff based on their knowledge of diagnosis and observed symptoms. While this may have introduced selection bias, staff hold privileged knowledge of residents, making them well-placed to identify individuals able to provide rich insights. Despite efforts to recruit a diverse sample, all residents were White British and those in relationships were in heteronormative partnerships, reflecting limited diversity in the UK ECH population (Darton, 2022).

Under the Mental Capacity Act 2005, participants living with dementia were deemed able to consent to participate unless demonstrated otherwise. An information sheet was discussed to assess understanding, retention, weighing of information and communication of decisions. A process model of consent (Dewing, 2007) ensured researchers were alert to any indication a participant wanted to withdraw. All participants were able to provide written informed consent, although a consultee process had been approved if needed, likely reflecting staff selection bias excluding those with capacity concerns. Participation was confidential, except for disclosures posing serious harm, of which none occurred.

A template analysis approach (Brooks et al., 2015; King, 2012), reported on elsewhere (Oatley and Atkinson, 2024), guided the examination of data in response to the research question. The coding template was developed iteratively, combining deductive codes informed by existing literature (e.g. ageing in place; Atkinson et al., 2023) with inductive codes arising directly from the data (e.g. carer stress). Data generation, coding and analysis were conducted concurrently, allowing insights from early transcripts to shape ongoing coding. Both authors independently coded transcripts and met regularly to discuss and refine the template. Additionally, the advisory group reviewed the relevance and clarity of the developing template. Data were analysed across and within participant types at both semantic and latent levels. A template excerpt is included in Supplementary Material 1. Findings concerning the perspectives of people living with dementia (Oatley and Atkinson, 2024) and model variation (Oatley and Atkinson, 2024) have been reported elsewhere.

Data demonstrated that ECH could support couples where one or both partners have dementia, allowing them to live together as care needs evolved. While this project focussed on the broader experience of individuals with dementia in ECH, the sample included seven heteronormative couples (six where one partner had dementia, one with both) who directly experienced life in ECH. For transparency, interview mode (solo or dyad) is indicated in Table 2, enabling readers to consider how the data generation circumstances may have shaped accounts. Data from other residents, care staff or social care professionals are included where relevant to couple experiences.

Among these couples, care and support varied in type and allocation for the partner with or without dementia. Some had no care package, where others had daily care and support for either or both partners. Quantitative data on care hours were not collected.

Staying together was an important concern, irrespective of the health of each partner:

For some couples, moving to ECH fulfilled a shared ambition to continue living independently together, offering emotional and psychological benefits in planning their future:

For Betty, ECH’s safety and security supported her fluctuating health, providing a stable environment she believed slowed her husband’s symptoms, reflecting a shared well-being:

Staff also believed that staying together could have emotional and psychological significance for couples and saw it as a key benefit of ECH:

Couples frequently spoke in terms of “we”, reinforcing togetherness in past experiences, present life and future planning:

(Ava and William, both living with dementia, Scheme 4).

There was evidence that togetherness mattered beyond co-residence in ECH. Rachel lived in Scheme 3, but not with her husband (living with dementia), whose needs the scheme could not meet, yet couplehood had still structured her daily routine, including regular visits to her husband’s care home while he was alive:

In a second example, staff described a woman living with dementia in the scheme, while her husband remained in their previous home. The privacy of the ECH apartment offered the couple space to “do” daily life together:

This demonstrates that while ECH can help couples maintain shared life, some benefit from individual space, finding alternate ways to retain their couplehood, indicating the structure and motivation “togetherness” can provide in later life.

A key benefit of ECH for couples was providing a location in which they could provide mutual care and support, with back-up staff support if required. This often applied to couples where only one partner had dementia, though it was not always this person who required support:

Robin was living with dementia, but still provided care to his wife, reducing the need for staff input, providing flexibility to their daily routine and providing a sense of continuity and commitment in their relationship.

Some couples where both were living with dementia could also be enabled to continue mutual support, particularly where strengths were complementary:

Staff noted that couples’ mutual support was strengthened by the familiarity and trust they had in each other:

Having staff onsite to provide additional care and support when needed could provide immediate practical and emotional reassurance that supported people in their care roles:

Onsite staff could reduce the impact of acute incidents (e.g. falls) helping couples more readily manage fluctuating care needs. For Delia, staff and assistive technology (door alarm) were crucial in ensuring her husband’s safety and supporting her caregiving role:

Professionals recognised that their back-up support was key to sustaining the unpaid care partner as dementia advanced:

Data indicated that for a person living with more advanced dementia, informal care and support from an onsite partner could delay or prevent a relocation to residential or nursing care. Partners often provided essential supervision and support:

ECH staff also recognised the role of partner care in sustaining residence:

For couples where both partners were living with dementia, it was suggested separation accelerated symptom development, and thus, co-residence could sustain ageing in place:

(Staff 1 and 2, Scheme 8).

Despite co-residence benefits, one partner’s escalating care needs could force couples to separate:

Such transitions could be distressing for the partner remaining in ECH:

If the partner without dementia died first, then it could create a sudden, complex crisis for the surviving partner, especially if they had relied heavily on them for care:

While schemes may be supportive of a person with dementia when the care partner is still there, this does not necessarily last long when that person dies:

Data also highlighted that living together could mean that the partner providing more care was not always able to get the maximum benefit from living in ECH:

Rachel reflected upon how it might have been for her had her husband moved into ECH:

This suggests that Rachel saw her husband’s presence as a threat to her independence. Meanwhile, Delia, despite recognising it was becoming increasingly hard, remained committed to her caregiving role and saw opportunities for respite as important to this:

Scheme 3 hosted a regular support group for any unpaid resident carers. This was much valued, demonstrating the benefit of recognising and providing proactive support to unpaid carers regardless of where they live:

Within ECH’s shared living context, benefit arise from not only organised support but also readily-accessible informal peer support. However, living alongside peers also carried the risk that one’s caregiving might be judged:

These findings explore couples’ experiences in ECH where one or both have dementia, highlighting how they navigate relationships, maintain togetherness and adapt to changing care needs. Rather than providing a generalisable account, this study highlights an underreported aspect of dementia care in this setting. Further interrogation is warranted to inform policy, practice and the housing with care options.

A key benefit of ECH is its ability to offer couples a shared life within a safe and secure environment, with optional additional care (Oatley and Atkinson, 2024). ECH allows couples to “age in place” together, adapting to evolving care needs, while preserving intimacy. Support within couples is often reciprocal, with complementary strengths fostering stability and reinforcing shared identity. This stability is linked to enhanced well-being and a perceived slowing of dementia progression. However, ECH cannot always maximise well-being for both partners, reflecting wider findings on the limitations of ECH as a “home for life” for people with dementia (Barrett, 2020; Barrett et al., 2016; Evans et al., 2020; Atkinson et al., 2023), while also highlighting the challenges of caring for resident partners.

“Couplehood”, defined as shared identity and togetherness, is central to helping couples manage the challenges of dementia (Hellstrøm et al., 2005; Conway et al., 2020). Couples often approach dementia as a joint challenge, striving to sustain existing roles (Gallagher and Beard, 2020). This study suggests that contributing to each other’s care, supplemented by professionals, reinforces marital responsibility and purpose. Reciprocity strengthens resilience (Conway et al., 2020), underpinning the importance of preserving togetherness (Wadham et al., 2016; Clark et al., 2019; Dunn et al., 2024) even as roles evolve. For those unable to live together in ECH, maintaining a couplehood dynamic remains central to well-being. Structured visits and shared private spaces help sustain relationships, underscoring the importance of flexible support that acknowledges relational aspects of dementia care (Brooker, 2007; Tieu and Matthews, 2024). These insights have relevance beyond ECH, across care settings.

Ownership of a private living space and opportunities for personal homelife, such as family visits or flat customisation, are valued by people with dementia (Oatley and Atkinson, 2024; Barrett et al., 2016). Living alongside one’s partner reinforces this sense of home, providing emotional familiarity, intimacy and practical care and support. Familiarity and trust between partners can aid daily care routines, including medication management. ECH staff recognise that this dynamic provides reassurance and stability for the partner with dementia. Emergency support systems (e.g. staff and assistive technology) ensures that caregiving partners have immediate assistance if needed, thereby reducing caregiver stress and burnout risk.

Couples also use shared decision-making and future planning to manage anticipated transitions (Sinclair et al., 2018; Kemp, 2008). Moving to ECH is sometimes a joint decision to sustain the relationship while preparing for future care needs. The diversity of care needs within ECH (Oatley and Atkinson, 2024; Atkinson et al., 2023) makes it ideal for couples with evolving support needs, as there are always likely to be peers to provide empathetic support. Peer support can help carers feel they are coping (Smith et al., 2018), though the public nature of shared living can subject one to judgement and stigma. Shared spaces (e.g. restaurants) provide a stage on which one’s caregiving might be judged, presenting an additional complexity to the dynamics of inclusion. Indeed, stigma related to dementia in ECH is well established (Barrett et al., 2016; Evans et al., 2020; Atkinson et al., 2023), yet judgment of unpaid care provision remains underexplored.

Despite these benefits, advancing dementia can necessitate separation. Symptoms, such as aggression, walking with purpose, self-neglect and high night-time care needs, may prevent continued ECH residency with dementia (Barrett, 2020; Barrett et al., 2016; Evans et al., 2020; Atkinson et al., 2023). As symptoms progress, relationship imbalances can threaten the shared “we” identity couples strive to sustain (Hydén and Nilsson, 2015; Dunn et al., 2024), undermining “couplehood” and leading to feelings of lost independence and identity (Dunn et al., 2024). Some care partners in this study described increasing care responsibilities diminishing their autonomy. These findings highlight the need for dyadic interventions that proactively support couples through disease progression and transitions within ECH.

Separation because of death or relocation can be distressing, thus, requires careful support. Onsite peers may be beneficial in supporting the grieving process and reducing the risk of social isolation (Smith et al., 2018), but it is important to note that the surviving partner is not always the one without dementia. More research into good practice in this scenario is required as where partners are in place to provide care and supervision, staff seem more willing to support a resident with advancing dementia. Once that partner is gone, how staff and other residents respond and interpret the behaviour of the person living with dementia (who may be experiencing acute grief) must be explored.

This study highlights the experience of couples living together in ECH. A central implication is that ECH’s ability to support couples to remain together despite asynchronous care needs is a key appeal. This includes supporting couples where one or both parties are living with dementia to age in place, making it a valuable option in dementia care. Such findings highlight the need for policy to ensure housing is integrated into national dementia care strategies and to explicitly recognise couples as “units” of care. Staying together allows couples to maintain their caregiving roles, uphold marital responsibility and sense of couplehood. The reassurance provided by having staff onsite can help couples continue to provide mutual support, but commissioners must also ensure that funding, provision and eligibility criteria are designed to sustain this. As dementia progresses, changes to the relationship can undermine the benefits ECH offers, placing stress on the caregiving partner. ECH cannot guarantee couples will remain together if care needs exceed the support capacity, and nursing or residential care may still be required. For providers, this underlines the importance of equipping staff with the skills to assess and support relational aspects of dementia, in addition to individual care needs, as well as adopt flexible care planning that adapts to evolving needs and includes contingency plans and protocols for separation or bereavement and proactive support for care partners (e.g. peer support programmes, respite opportunities and specialist counselling).

While previous ECH research has focused on individuals, the relational nature of dementia underscores the need to explore couple dynamics. Given housing’s crucial role in care, further exploration of options for couples affected by dementia is needed, particularly considering an ageing population more likely to be living together (ONS, 2023) and rising UK dementia rates. The growing trend of late-life relationships brings further complexity to this issue (ONS, 2023). Developing adaptable care plans in partnership with couples, carer support initiatives, transition-planning and peer support opportunities may be important dimensions of ECH provision that enable couples to thrive together. Future research should examine different couple formations, diverse ethnicities and sexualities and track well-being across time.

This paper does not claim to have fully explored couple experiences but highlights an underexamined topic with implications for research and practice. The limited sample diversity reflects UK ECH populations (Darton, 2022) and gatekeeper selection bias may have favoured those with positive ECH experiences.

At the time of data collection, Dr Rebecca Oatley was employed as a research associate at the University of Worcester. At the time of article submission, Dr Rebecca Oatley was affiliated with the School of Social Sciences, Cardiff University, Cardiff, the UK. Grateful thanks to the residents, families, professionals and schemes involved for being part of the research. Thanks also to the NIHR School for Social Care Research for funding the project. The authors extend their gratitude to Dr Simon Evans, formerly with the Association for Dementia Studies, University of Worcester, for his contributions before his retirement.

Project ethical approval was granted by the Health Research Authority (21/HRA/3769).

The supplementary material for this article can be found online.