Business Clinic
Shared dementia care – supporting couples together

Brendoncare is launching a new dementia extra care model called Shared Care. It intends to offer all the care people with dementia and their partners need to help support them together and prevent unnecessary hospital admissions, whilst offering assistance to people living with dementia in the local community too.

Brendoncare is a Winchester-based charity. It runs 10 care homes and four housing with care developments. It also operates more than 85 friendship and wellbeing clubs across Dorset and Hampshire for older people who may otherwise be lonely. Added to this, it provides a hardship fund for people who cannot afford to get to its clubs, meaning nobody is excluded, whatever their financial situation. It also offers a ‘Care for Life’ promise, which means that a resident will not have to leave if their financial situation changes.

Nobody is excluded

It is with this sentiment, that nobody is excluded, that Brendoncare has developed its new model, Shared Care, for couples where one person is living with dementia. Supporting couples where one person has care needs can be difficult. With a significant reduction in shared rooms, commonly, when one member of the couple enters care the other remains at home. This can be particularly distressing and difficult for people to come to terms with.

Otterbourne Hill

Brendoncare’s Shared Care model is committed to addressing this ‘terrible pain of separation’ that so many couples experience as the needs of those with dementia necessitates more specialist care. It also aims to address other difficulties being faced by people living with dementia such as social isolation, scarcity of respite and a reliance on hospital care.

The Shared Care model will be based at a new housing with care development, Otterbourne Hill in Hampshire. Construction started in October 2016, with residents aiming to move in around summer 2018.

Otterbourne Hill will be built to provide a range of services with the right level of support for each person. The 64-bed care home, built to the Stirling Gold Standard for care home design, will offer nursing and dementia care in small, family-feel households.

There will also be 20 one- and two-bedroom dementia-friendly apartments specifically for couples living with dementia, allowing partners to continue to care for one another with full access to care, support and respite services when needed. Brendoncare hopes to offer all apartments for rent.

Beyond the care home and independent living apartments will be the community hub. The hub will house the usual services and amenities, which are a familiar part of extra care schemes, such as a restaurant, library and hairdresser. However, it will also host specialist dementia support including dementia-friendly clubs. These activities, information and resources will be open to residents and the wider community.  There will be an indoor winter garden and sensory gardens in the landscaped grounds and a bowling green for gentle exercise and enjoyment.

Offering solutions

There are a number of solutions offered by Brendoncare’s Shared Care at Otterbourne.

Keeping couples together. The apartments will enable couples to live independently with the care they both need. If a person’s dementia symptoms progress to the point that they require a move to the care home, the partner can continue to live within the scheme and play an active role in the care of their loved one. The couple will both be familiar with the site and staff and, with the partner still living on site, it will make it easier to visit and be together.

A sense of community. People living with dementia at Otterbourne Hill or in the surrounding areas will have access to a wide variety of activities, social groups, support and advice within the dementia-friendly community hub. It is hoped that this will reduce isolation and loneliness and provide the opportunity to develop new friendships. This will open the setting to the wider community, and specifically those local people living with dementia and their partners. It will encourage community engagement and participation, offering local people dedicated dementia support regardless of where they reside.

Specialist nursing care. The nursing staff will be trained in specialist dementia nursing care. Couples living in the apartments will also benefit from the expert nursing skills of the staff. It is hoped that this high level of specialist training will minimise the need for emergency hospital admissions and, by association, ease the pressure on the NHS. With the NHS increasingly struggling due to cuts in social care, a specific focus on reducing unnecessary admissions should be of benefit to the individual and the NHS.

Giving carers a break. Good quality respite care is difficult to find. Brendoncare is looking to address this with the availability of planned and emergency respite care for those living at Otterbourne Hill as well as those living with dementia in the local community. It will provide relief for carers from the demands of caring for a loved one who is living with dementia, and enabling them to pursue their own interests. Brendoncare says that residents in the apartments whose partner may become regularly distressed or agitated at night will also benefit from this service.

Leading the way

The charity says that the model will ‘lead the way in dementia care by providing a life-changing alternative for couples facing dementia, enabling them to stay together with the benefit of care when needed.’

Over to the experts…

Extra care or independent living is not a new model, however, Brendoncare is confident that its Shared Care dementia model is the answer to the needs of couples where one person has dementia. Is this the solution to end couples being separated at such a delicate time? Is the model unique in offering the three services on the one site? Does it offer something different for families and the wider community? Are there other innovative solutions to supporting couples where one person is living with dementia? What does the panel think? 

Clarity and expectation management needed

In my view, Otterbourne Hill has the potential to be a pioneering scheme. Most existing dementia schemes (in both care homes and extra care) have tended to focus more on the support for individuals with dementia, and not their loved ones caring for them.

I think clarity and expectation management will be very important for the scheme to succeed.

Should the care-giving partner outlive their spouse/partner, a slightly delicate issue may arise concerning their right to remain as a tenant at the scheme. Brendoncare may need to include a provision in the tenancy agreement that means that the surviving partner may need to move on in order to prevent the apartments being occupied by older people who do not require specialist dementia services.

Clearly, a sensible balance needs to be struck to give residents time to look for alternatives in a time of grief. To avoid conflict and false expectations, it will be important to be very clear that the tenancy might need to be tied to a specific set of circumstances (ie couples where at least one partner has dementia). Older people typically seek assured tenancies if renting, so the benefits of the dementia offer would need to be emphasised to compensate for the fact that for the surviving partner, moving to Otterbourne Hill may only be an interim solution when it comes to making a new home in old age.

These are not insurmountable problems. With the right approach to clarity and expectation management, Otterbourne Hill may well lead the way in establishing a new and innovative form of living for couples with dementia. I wish them all the best.

Michael Voges, Executive Director, Associated Retirement Community Operators (ARCO) 

Humane and compassionate philosophy

Having worked with Brendoncare for many years, it was clear that the vision of partners staying together was part of a humane and compassionate philosophy for its housing. Investment in ongoing quality, practice and work-based learning and development was affirmed by its drive towards adopting the Resident-Centred Care Home Standard (360 Standard Framework).

With the development of clubs and its community focus, the natural progression is towards providing dementia-friendly communities, where connectivity and life balance is restored.

Giving relief happens where quality of relationships is at the heart of a service, and the wellbeing of the person living with dementia and their loved one is recognised. Actively addressing loneliness, striving for positive engagement and a proactive approach to person-centred carer support, within a listening leadership, is fundamental. It is also about prioritising improvement, driven from listening to the needs of the resident and understanding the complex role of the ‘primary carer’, and addressing and enabling what staff need to deliver this. Quality of life for the carer prevents their decline and restores their ‘relationship’. Supporting the progression of dementia for their loved one gives hope and energises everyone.

Strong intergenerational connections with the community, using the power of music and new innovations, such as Magic Tables and failure free activities, can further bring young and old together. Culture is king; caring environments, on a journey of continuous improvement, with relationships at the heart, top down, bottom up is the best way to future-proof sustainable quality.

Rosemary Hurtley MSc, Dip COT, FRSA, Occupational Therapist, Quality Improvement Consultant. Co-developer of the 360 Standard Framework 

Should be evaluated to build a solid evidence base

How best to support people living with dementia is a key question for housing with care, and one for which there is little research evidence. Recently, there has been a move away from ‘specialist’ schemes or units for three main reasons.

Firstly, they do little to address the stigma that is still widely-associated with dementia and to support the integration of people living with the condition with wider communities.

Secondly, there is growing awareness of the benefits of the community hub model of extra care housing, particularly in terms of increasing opportunities for social interaction. Thirdly, the specialist model poses challenges in terms of how best to support a partner of the person with dementia, who can feel socially-isolated within a dementia-specific scheme and can face a disruptive change in accommodation when their loved one moves to a different setting or passes away.

The inclusive model proposed by Brendoncare is to be welcomed. Crucially, it will enable couples to continue living together when one partner has dementia. At the same time, it can provide the specialist care and support that the person with dementia is likely to require. In addition, the operation of a community hub should provide access to activities, services and social opportunities for both partners. The success of this approach will depend to a large extent on the scheme being designed, managed and operated in a way that maximises these opportunities. There may be learning that can be incorporated from similar approaches, such as Stanton Lodge in Swindon.

I do hope this initiative will be fully evaluated so that we can start building a solid evidence base.

Dr Simon Evans, Principal Research Fellow, Association for Dementia Studies, University of Worcester 

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