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Dementia care: the nurse-led service that gets to the heart of what matters to carers

Admiral Nurse Kerry Lyons’ dementia support service is reducing inpatient stays and empowering carers

Admiral Nurse Kerry Lyons’ dementia support service is reducing inpatient stays and empowering carers

  • Admiral Nurse Kerry Lyons is winner of the Commitment to Carers category in the 2020 RCNi Nurse Awards
  • She leads a service supporting people with dementia and their carers, and is reducing inpatient stays
  • She developed group education sessions in collaboration with carers, who were asked what training and practical advice they needed
Kerry Lyons (right) with Nicci Gerard, founder of dementia campaign group John’s Campaign

An Admiral Nurse service that supports hundreds of people with dementia and their carers is reducing inpatient stays and empowering families across Bolton.

The service takes an holistic approach to health and well-being – including advice on benefits and social prescribing – and focuses on crisis reduction and avoiding hospital admissions.

It offers one-to-one and group training as well as support for carers in hospital, the community and people’s homes, and is based at Bolton NHS Foundation Trust .

Bespoke service supporting people with dementia and their carers

The service, delivered by band 7 dementia specialist nurse Kerry Lyons, has seen over 2,500 patients and carers since starting in April 2019, and has averted hospital stays for nearly 200 patients.

In recognition of her work, Admiral Nurse Ms Lyons has been named winner of the NHS England-sponsored Commitment to Carers category of the 2020 RCNi Nurse Awards.

‘As a new service in an integrated organisation and facing escalating numbers of people with dementia, we decided rather than go with a traditional hospital-centric role and model we’d develop a bespoke service,’ says Ms Lyons.

‘This way of working is wholly transferable to any other locality and could benefit so many more families.’

A staff training session

Participation of carers and family is key to high-quality dementia care

The cost of UK dementia care is increasing, and is estimated at £37 billion per year, over £30,000 per person.

But escalating costs do not necessarily mean families are always receiving high-quality consistent care, says Ms Lyons.

‘Most people living with and supporting someone with dementia will inform you that “good” can only ever be achieved from access to tailored holistic support, with care, consideration, inclusion and choice.’

Enabling participation by those who matter most to the person living with dementia – their carers and family – is key.

Kerry Lyons

‘My Bolton families say “good” is seamless, high-quality, flexible care from knowledgeable staff who are aware of the daily challenges often faced by a person and family living with dementia.’

This includes staff who strive to understand the individual’s perspective and lived experience, as well as practical and emotional support to understand the condition and plan ahead for those supporting people they love.

Risk of longer periods of inpatient stays and poorer clinical outcomes

‘We wanted the service to assess and support highly complex people with dementia and their carers through to and after hospital discharge, to educate dementia champions, increase dementia awareness and establish a formal programme for carer support,’ says Ms Lyons.

‘One in four hospital beds is occupied by a person living with dementia, with higher chances of patient and carer stress and a risk of longer periods of inpatient stays and poorer clinical outcomes.

‘So we also aimed to support people to live in community settings, avert crisis admissions and support staff as carers.’

Holistic, compassionate and purposeful dementia support

Jen Kenward

NHS England experience of care lead in community, primary and integrated care, and one of the 2020 RCNi Nurse Awards judges, Jen Kenward praises Kerry Lyons’ approach to supporting the families of people with dementia as ‘holistic, compassionate and purposeful’.

Ms Kenward says Ms Lyons demonstrated a positive vision for changing the experience of carers and a positive, practical approach that got to the heart of what matters most to carers.

‘The COVID-19 pandemic has seen the burden on carers increase significantly.

‘As we move into the recovery phase and plan for the future, it is more important than ever that unpaid carers are given the support they need and empowered to care without detriment to their own health and well-being.’

Flexibility has been key to achieving responsiveness, says Ms Lyons, who works flexible hours and sees people in hospital, in their home or in the community.

‘This has proved to be invaluable for some families who would otherwise not have engaged, offering one less barrier to them,’ she says.

Ms Lyons says this is key to connecting diverse communities and improving the experience of care.

Service focuses on quality and experience

The service supports people through to and beyond hospital discharge, strengthening resilience, averting crisis admissions and offering ongoing support, as well as increasing awareness among healthcare staff.

The number of contacts between patients and carers and Ms Lyons since the service began in April 2019 is impressive.

In total 1,360 carers have been seen, as well as 1,163 patients – either one on one or in groups.

There have been a further 176 contacts with families and patients who have avoided hospital admissions.

But she emphasises that ‘quality and experience’ is the service focus, rather than numbers.

‘Having a vision, a mission, a purpose and the ability to bring people together is what has made the numbers happen.’

Ms Lyons also works closely with multidisciplinary teams, strengthening support offered to families living with dementia.

Inpatient environment improvements lead to a better care experience

If someone has to be admitted, the inpatient environment has been improved to improve the experience of care, Ms Lyons says.

‘We enable participation and inclusion in care for carers with access to an overnight stay and carer lanyards, and I am on hand to visit clinical areas if required to support either the person with dementia or their carer.’

In its first year the service saw 51 staff trained on the Care Certificate programme.

Additionally, 164 staff completed training called Roadmap to Better Dementia Care Delivery Tier 2, which has developed dementia champions to deliver best practice in different areas of the hospital.

Immersive, locally created ‘walk in my shoes’ training has proved a success, and so far has been completed by 42 staff.

Ms Lyons says: ‘This training has empowered staff to do the right thing more easily, and to step into the shoes of a person living with dementia with a greater understanding of what patients, their carers and families experience as the disease process worsens.’

Group education sessions include end of life, continence, resilience and falls prevention

A mixture of tailored informal sessions is part of the one on one support she offers, and group sessions can work well.

‘No one trains you to be a carer,’ says Ms Lyons. ‘I cover everything from pressure damage to sexuality, sundowning to end of life planning and everything in between.’

She also developed group education sessions in collaboration with carers, who were asked what training and practical advice they needed.

Sessions include end of life, continence, resilience and falls prevention, and offer peer support and practical solutions from other experienced carers.

Other groups, such as the Musical Moments choir, help meet needs holistically, making memories and improving well-being.

The choir, a collaboration between the trust and Bolton Music Service, is a weekly shared activity for those living with dementia and their carer, and is currently using a video sharing platform.

‘Many people who attend struggle in social settings and struggle with word finding,’ says Ms Lyons.

‘The group offers a moment of joy and well-being – a safe space in which everyone is fully included.’

‘She has improved our quality of life in countless ways’

Melanie, whose husband has dementia, describes how Kerry Lyons supports her family:

‘Kerry’s wonderfully warm and open attitude puts everyone at their ease.

‘She is a great and careful listener, using her in-depth knowledge of dementia and of us as individuals, offering possible explanations for difficulties we are having.

‘We discuss ways in which we might tackle the issue, together arriving at the best plan of action.

‘She maintains a positive attitude while allowing people to express their feelings, and enables people to find their way through their difficulties. She makes sure I look after my own well-being.

A carer's pack

‘Kerry has improved our quality of life in countless ways, including an urgent referral for a Careline alarm, installed during the pandemic after my husband had a fall.

‘She supports my husband, my son and myself at best interest meetings and with a surgeon involved in my husband’s care.

During lockdown she’s continued to be a mainstay of support

‘She invested a great deal of time into working with staff to provide a low-stimulus, reduced-stress environment crucial to my husband coping with admission to the endoscopy unit.

‘During lockdown, Kerry has continued to be a mainstay of support through phone and email contact.

‘Aware of my difficulties trying to divert and occupy my husband without our usual social activities, Kerry sent us a parcel of games, craft materials, a reminiscence book and activities.

‘My husband and I attend afternoon sessions with the carers’ group, sharing lunch and singing with the Musical Moments group that follows.

‘When shielding ended, Kerry helped us track down cafes with outdoor seating and safe places to try when we could eat indoors.

‘A successful and helpful video appointment with Kerry and our consultant helped us avoid having to go into the hospital. When our community mental health home review team was deferred for two months, she made an urgent referral so the visit took place the following week.

‘The needs of individuals and carers living with dementia will never be brushed aside while this champion for great, holistic dementia care is influencing and improving practice in Bolton.’


The 2020 RCNi Nurse AwardsCommitment to Carers award is sponsored by NHS England

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