Volunteers are transforming the care of people with dementia

The Dementia Carers’ Support Service helps carers draw on the experience of volunteers

The Dementia Carers’ Support Service helps carers draw on the experience of volunteers and also won the Commitment to Carers category of the RCNi Nurse Awards 2019

  • Dementia Carers' Support Service (DCSS) at Cambridgeshire and Peterborough NHS Foundation Trust is nurse-led
  • DCSS uses volunteer befrienders with past carer experience to help current carers
  • Volunteers do not replace nurses, but have more time to give carers emotional support
Members of the Dementia Carers Support Service
The Dementia Carers' Support Service including coordinators Estelle Wrathall (left), Kath Everitt (third left)
and Sally Kitchin (fourth right), and retired coordinator Fe Franklin (seated, centre right). Picture: Tim George

A team of volunteers offering one-to-one peer support is transforming the experience and well-being of carers of people living with dementia.

The volunteer befrienders, who have all themselves cared for people with dementia, are using their experience and expertise to support carers under the supervision of a band 6 nurse.  

The Dementia Carers’ Support Service at Cambridgeshire and Peterborough NHS Foundation Trust was set up by nurse Fe Franklin, who had retired from her role working on a dementia ward.

She returned to work for two days a week when managers realised there was a lack of support for carers of people with dementia. Nurse Sally Kitchin, who had worked on an older person’s mental health ward, joined her to coordinate the service.

Ms Kitchin says: ‘Carers were not engaging with services and seemed unable to access resources. We thought we could use the skills and experience of past carers to help them engage earlier.

‘We are not using volunteers to replace nurses. The volunteers have more time to listen and reiterate what nurses have advised them. They have more time to give carers emotional support and find out what makes them tick. And the carers listen to the volunteers because they know they have experience of the challenges that they are facing.'

Person-centred care for people with dementia

Ms Kitchin continues: ‘The support is person centred, tailored to the carers and their own well-being. Sometimes, carers of people with dementia or long-term conditions find it difficult to access the wider community, not just dementia services, but doing so can increase their quality of life.

 Sally Kitchin (centre) with befriender Daisy Meakin (left) and carer Loretta Peck.
Sally Kitchin (centre) with befriender Daisy Meakin (left) and carer Loretta Peck. Picture: Tim George

‘If they had to shelve a hobby or interest they used to love, the volunteer can encourage them to enjoy it again. Those few hours where the carer can be themselves can make such a difference, which in turn helps the person being cared for.’

Importantly, the volunteer encourages the carers to attend support groups. ‘The carer and the person they care for are in different rooms because we find this more therapeutic,’ says Ms Kitchin. ‘Sometimes the person with dementia finds it distressing to be separated from their carer.

‘We had one devoted couple who were never apart, but the volunteer supported them to come and we gradually increased their time apart by allowing the wife, who had dementia, to wave through the window. And we could bring her husband in to see her at any time.’

Carers' survey reveals the benefits of emotional support

There are also benefits for the volunteers. ‘It can help prevent carer breakdown,’ says Ms Kitchin.

‘It’s an opportunity for healing and mutual partnership. Our volunteers tell us they enjoy making sure the carer does not feel alone and that they would have been less stressed if they had been supported by a befriender when they cared for someone with dementia.’

Most carers care for the person with dementia in their own home, but 22% are in a care home. About 15% of carers have seen their cared-for person die, and the volunteers continue to provide bereavement support to carers for months after the death.

The rewards, according to a carers’ survey carried out this year, are huge. The survey showed that 82% said they had benefited from the emotional support offered by their volunteers, 86% had benefited from the practical advice and tips they received, and 61% had benefited from being directed to services.

Almost 90% rated the one-to-one aspect of the service ‘very’ or ‘extremely helpful’, and 81% reported having benefited from talking to or supporting other carers.

There are also social events: 67% said events helped them to build friendships and socialise as a couple. After accessing support, 68% of carers said they felt better informed, connected to others or able to cope.

One carer said: ‘You cannot imagine how much life-affirming strength has been given by this service.’

Supervision sessions for volunteers encourage teamwork and sharing of experiences

Important to the service’s success are the monthly supervision sessions for the volunteers. The sessions give the volunteers an opportunity to work as a team, explore issues and experiences and share ideas of how to help the carers they support.

‘They bond as a group,’ says Ms Kitchin. ‘The meetings can spot transference. The volunteer may overidentify with the carer, for example, and we help them make sense of that.

‘We can spot any mental and physical health needs the carer may have through these sessions, and we make sure they are quickly referred.’

The service won the Commitment to Carers category of the RCNi Nurse Awards 2019. However, setting it up was not easy, with funding being a constant concern for five years.

‘But the model is fantastic value,’ says Ms Kitchin. ‘We only have 1.6 posts running the service, with 17 volunteers supporting 110 carers and 110 cared-for people in the community. And we are working on rolling it out throughout the county.’

The relationships the service has built with carers are benefiting colleagues throughout the trust who engage them to review documents and policies.

‘We are tapping into carers’ knowledge,’ says Ms Kitchin. ‘One of our carers presented at a recent training session on dying well and they teach us, as nurses, new things every day.

‘When finances were under threat, carers wrote to decision-makers explaining why the service is so necessary and they give talks to local groups to raise our profile. They have lived experience of the challenges of caring for someone with dementia and a wealth of expertise, and we all need to listen to that.’

What the judges said

Nurse Awards logo

The Dementia Carers’ Support Service (DCSS) won the NHS England-sponsored Commitment to Carers category of the RCNi Nurse Awards 2019.

One of the 2019 RCNi Nurse Awards judges, NHS England experience of care lead – community, primary and integrated care – Jen Kenward, said of the DCSS: ‘This service has developed an approach to the support of carers of people with dementia that is practical, personal and sustainable.

‘The team have taken on board what matters most to carers. They have provided a service that develops carer resilience, and encourages carers to be proactive about their own health and well-being. 

‘This approach fosters positive family relationships and the involvement of former carers in the delivery of support has enhanced the experience of carers accessing the service.

NHS England logo

‘It is fantastic to see how the team have engaged with wider local services from statutory and voluntary sectors, and have placed the well-being of carers at the heart of what they do.’

Register your interest in the RCNi Nurse Awards 2020


Read why Loretta Peck was inspired to become a mental health nurse after her time as a carer and volunteer for the Dementia Carers’ Support Service

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