Dementia strategy

Introduction

Dementia is a term that describes a range of conditions affecting the brain, and is caused when the brain is damaged by diseases, such as Alzheimer’s disease. Symptoms of dementia may include difficulties with memory, reasoning, communication skills and the ability to carry out daily activities. Dementia is progressive and there is no known cure, although research continues to take place nationally and internationally.

Our strategy demonstrates the Trusts commitment to continuing to deliver changes that improve the way in which we care for patients with dementia, and ensure that our patients experience patient centred care while being treated in our services. In the Trusts Vision of Excellence (2017-2022) document an objective is to pioneer patient centred care with exceptional clinical outcomes and excellent patient experience.Our ambition is that patients are treated at the right time, in the right place, by the right professional, with the right skills. This will ensure that services are flexible and responsive to individual needs. Our strategy provides a clear direction for delivering high quality, safe, person centred care, ensuring that people with dementia and their carers have the most positive experience possible.

The main aims of this strategy are to:

  • Enable staff to develop a better understanding of people with a dementia and to provide them with the skills to meet our patients needs and ensure that they are treated with dignity and understanding.
  • Ensure that our services meet the needs of our patients, families and carers while under our care and sign post our patients to community services where appropriate.

Dementia and sight loss

More than 250,000 people are living with dementia and sight loss in the UK, and most of these people are over 65. Sight loss among people with dementia can be caused by:

  • An eye condition (such as cataract)
  • Another health condition (such as stroke)
  • Normal ageing of the eye
  • Tthe dementia itself.

If a person has dementia, they may have visual difficulties but still have healthy eyes, as the difficulties are caused by the effect of dementia on the brain. Dementia conditions which may have an impact on vision are: lewy body dementia, posterior cortical atrophy, Alzheimer’s disease and vascular dementia. Sight loss is typically under diagnosed in people with dementia as one condition can mask or be mistaken for another, and a recent study found nearly one-third of people with dementia also had significant sight loss. Eye tests are therefore especially important for people with dementia because the symptoms of dementia can mask the symptoms of sight loss (RNIB).

 

National context

Dementia is the biggest health and social care problem facing our country today, and the largest health care burden globally. Dementia affects an estimated 850,000 people in the UK and figures are said to be increasing with one in three people aged over 65 years going on to develop the condition. Someone develops dementia every 3 minutes, and 1 in 14 people over the age of 65 will have dementia, and over the age of 80, 1 in 6 will have dementia.

Dementia is not an inevitable part of ageing, and many older people do not develop dementia. However, dementia can affect people under 65 years of age.

Dementia has been identified by the Government as a major priority and challenge (Department ofHealth 2012, 2015). The Prime Minsters Challenge on Dementia 2020 set out more than 50 specific  commitments that aim to make England the world-leader in dementia care, research and awareness by 2020. This includes ambitions to:

  • Boost dementia research
  • Train more health and care staff
  • Follow up timely diagnosis with greater access to help
  • Advice and support for people with dementia and their carers
  • Increase public awareness
  • Create more dementia friendly public and private organisations and communities.

The National Dementia Strategy 2013 identified the need for Dementia awareness to be improved in all local areas with a vision that all people with Dementia and their carers should be supported to live well.

 

Fix Dementia Care: Hospitals

In January 2016 The Alzheimer’s Society published a report that demonstrated the inequalities in hospital care that people living with dementia experience, and highlighted that:

  • Almost 60 % of people surveyed felt the person with dementia they know wasn’t treated with dignity or understanding
  • 92% of people surveyed said hospital environments are frightening for the person they know living with dementia
  • 90% of people surveyed said the person with dementia they know became more confused while in hospital
  • There were 6,834 incidents of people with dementia falling in hospital last year
  • On average people with dementia stay in hospital twice as long as other patients over the age of 65.

 

The New Deal on Dementia 2017-2022

The Alzheimer’s Society strategy ‘The New Deal on Dementia 2017-2022’ details its mission to transform the landscape of dementia forever. The strategy calls on state and society to unite to establish a future for people with dementia that:

  •  Builds public understanding
  •  Offers quality and affordable care
  •  Supports people and their families to live the life they wish to lead and eradicates stigma and fear

 

Dementia Statements

In April 2017 the new Dementia Statements were welcomed and endorsed by the Dementia ProgrammeBoard. They reflect the things people with dementia say are essential to their quality of life and are a call to improve the lives of people with dementia and to recognise that they shouldn’t be treated differently because of their diagnosis. The statements are:

We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should be ashamed of it.

We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.

We have the right to an early and accurate diagnosis, and to receive evidence based appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

We have the right to know about and decide if we want to be involved in research that looks at case, cure and care for dementia and be supported to take part.

 

Local context: our current position

The Trusts Quality Strategy 2017 – 2022: Our Journey to Excellence, which follows ‘our vision of excellence 2017 – 2022’, sets out our ambitions to deliver outstanding patient-centred care and excellent patient experience. We will promote patient engagement and consultation, and ensure that patient experience and involvement is characterised by compassion, dignity and respect, and services are developed for and with patients.

During the past three years, we have made good progress in the care of patients with dementia, including:

  • Signed up to the Dementia Friendly Hospital Charter
  • Signed up to John’s campaign
  • Dementia awareness e-learning package is mandatory for all staff
  • Bespoke Tier 1 dementia training delivered to 489 staff by UCLPartners
  • Mental capacity act training is mandatory for all staff & includes face to face training for clinical staff
  • Flagging of all dementia patients
  • 'This is Me’ leaflets and helping hands stickers provided
  • Easy read letters and leaflets developed
  • Patient information slides and a poster for people with dementia and carers developed
  • Safeguarding champions established which includes a dementia focus. Carers, a person with dementia and Alzheimer’s Society has been involved.
  • Environment improved including contrasting pictorial signage, dimmed lighting and unpolished floors.

 

The Trust recognises that further improvements are needed to deliver excellent patient centred care and to keep up to date with the national and local developments to enable patients to live well with dementia.

In relation to people with dementia, their family and carers, the trust is committed to:

  • Ensuring patient satisfaction through person centred care that takes into account a person’s needs, concerns and preferences.
  • Ensuring our practice is evidence based and follows best practice guidance.
  • Ensuring that learning from incidents and complaints involving patients with dementia is shared.
  • Prevention that focuses on early intervention
  • Developing services that are responsive, high quality and innovative.

 

Governance and Review

The Executive lead for Dementia is the Director of Nursing. The Safeguarding Adults Lead is the dementia lead throughout the trust, and is also a dementia champion.

This strategy is a living document. Progress will be monitored and reviewed by the Dementia andLearning Disability Working Group which meets quarterly and consists of staff, service users and community partners. The group has recruited a dementia service user and carers to input into the strategy delivery. The terms of reference and membership of this group will be reviewed to ensure the team is able to support delivery of the strategy. The strategy will also be updated with any changes in national policy or local circumstances.

The working group reports to the Safeguarding Adults Committee and any areas for escalation will be reported to this committee and the Clinical Governance Committee, and finally Trust executive Board if required.

Outcome

  • We will support you to get the right health care you need to live a healthy life.

Aim

  • The person is involved as much as possible around decisions regarding their care and treatment.
  • Care and support that takes into account a person’s needs, concerns, wishes and preferences.
  • Clear identification of people with dementia in all healthcare record systems.

Key milestones

  • Clear and easily visible on health records that the person has dementia.
  • The changes people need to support them to access health services are clearly recorded in the health record and all referrals
  • Robust docs evidencing implementation of the Mental Capacity Act including supporting patients to make their own decisions.
  • Continued commitment to dementia friendly hospitals charter and increased environmental changes.
  • Updates are made in line with the refreshed charter.

Outcome

  • Working in partnership with families and carers.

Aim

  • Recognise and value the voice of carers.
  • Carers are actively involved and engaged in care planning and decision-making.
  • Supporting carers with information on services.
  • Supporting carers to have an assessment of their own needs so that they can stay healthy and well.

Key milestones

  • Carers leaflet which includes advice on advocacy, information and support.
  • The profile of Johns Campaign is raised across the trust.
  • Carers advised of their right to a carer’s assessment, and referrals to Adult Social Care are supported.
  • Representation from people with dementia and carers in Dementia and Learning Disability work group
  • People with dementia and carers represented in other Trust groups.
  • Carer and family details are robustly recorded in patient records and they're involved in care planning & discharge planning.

Outcome

  • Look at extra things we need to do, so people with dementia can get health services as good as other people.

Aim

  • Making sure that information on health services is accessible to people with dementia.
  • Health professionals have improved knowledge and skills to support people.
  • Raise awareness of dementia across the trust.
  • People are given more time with health care professionals.

Key milestones

  • Accessible information on Moorfields website.
  • Consistent implementation of dementia pathways across the Trust.
  • ‘This is Me’ leaflet , easy read literature and patient letters available
  • Include flagging, ‘This is Me’ leaflets and reasonable adjustments.
  • Increased training and education for staff on the needs of people with dementia across all sites.
  • Seek opportunities to train together with local providers & voluntary sector organisations.
  • People with dementia and carers are involved in training.
  • Safeguarding champions receive further dementia training to enable them to support and advise on dementia in their area.
  • Dementia Friends are established across the trust.
  • Dementia awareness events are held during Dementia awareness week, May.
  • Partnership working with Alzheimer’s Society is strengthened.

Outcome

  • To have better information

Aim

  • Provide clear and easy to read information about our services.
  • Information available for people on how to get help if they are not happy with the care they have received.

Key milestones

  • Staff can consistently identify communication support needs from patient health records.
  • Dementia and carers information on Moorfields website.
  • A range of accessible information resources on services and treatments are available at all hospital sites.
  • People with dementia and carers are involved in the development of information resources.

References

  • Alzheimer’s Society, The New Deal on Dementia Strategy 2017-2022
  • New Dementia Statements, April 2017
  • Alzheimer’s Society, Fix Dementia Care in Hospitals, Alzheimer’s Society (2016)
  • Department of Health Prime Minister’s Challenge on Dementia 2020 (2015)
  • NICE Quality Standards for Dementia
  • Royal College of Nursing Dementia National Strategies and Standards