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Developing end of life care for people with dementia

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This report provides an overview of the work set out by North West NHS to address the end of life care needs for a person with dementia. The reader will gain an insight into the development of the national end of life care programme and an introduction to how palliative care can be delivered to the person with dementia, using the three recommended palliative care tools of the Gold Standards Framework, Liverpool Care Pathway and the Preferred Place of Care. North West NHS employs my colleague Kim Wrigley and I as enhanced care facilitators. Together with the project team we are developing a two-year project to address the care needs of people with dementia at end of life in a care home with nursing facility.

This report provides an overview of the work set out by North West NHS to address the end of life care needs for a person with dementia. The reader will gain an insight into the development of the national end of life care programme and an introduction to how palliative care can be delivered to the person with dementia, using the three recommended palliative care tools of the Gold Standards Framework, Liverpool Care Pathway and the Preferred Place of Care. North West NHS employs my colleague Kim Wrigley and I as enhanced care facilitators. Together with the project team we are developing a two-year project to address the care needs of people with dementia at end of life in a care home with nursing facility.

The government has begun to address the issue of equity in the provision of palliative care through the NHS Improvement Plan supported by the End of Life Care Programme and the recent white paper, Our Health, Our Care, Our Say (Department of Health 2006). Further to this, the Department of Health has produced a service development guide, Everybody?s Business for older people?s mental health services (Care Service Improvement Partnership, 2005). This specifically states that: 'Older people with mental health problems should have the same access to end of life care services as others and that a palliative model of care should be available for people with advanced dementia.?

A number of factors influence the need for this work. The ageing population in the UK and the reduction of long-stay beds in hospitals are contributing to nursing homes developing as establishments where quality palliative care is required to be delivered. The possibility of developing dementia increases with age. As life expectancy has increased so has the incidence of dementia. It is estimated that by 2010 there will be approximately 870,000 people with dementia (NCPC 2006). Within the palliative care literature in the UK it has generally been acknowledged in the past 10 years that dementia is a terminal illness. However, it may be many years before the diagnosis of dementia will conclude with a palliative care approach.

The Department of Health invested in the development of end of life care provision in December 2003 that was to be supported by the National End of Life Care Programme. The money was divided between Strategic Health Authorities based on per capita. Greater Manchester Strategic Health Authority, ambitiously, was the only Strategic Health Authority to specifically focus on improving end of life care for people with dementia in a care setting (nursing).

A steering group was developed for the two-year project, which included a diverse range of professionals. For Dementia, a charitable organisation striving to improve the lives of people affected by dementia, endorsed it.

During summer 2005 a launch event was held to introduce the project to care homes across Greater Manchester and give them the opportunity to formally express an interest in the project.

An aim of the project is to introduce and assess the implementation of the Gold Standards Framework, The Liverpool Care Pathway and the Preferred Place of Care to the pilot care setting for the person with dementia.

The Gold Standard Framework is a palliative care tool developed by GP Keri Thomas. It is a framework based on identifying palliative care patients using a team approach in the assessment and planning of care. The Liverpool Care Pathway hopes to transfer best practice from palliative care into a variety of settings. This pathway is now well established within cancer care and work continues to successfully adapt it for use with other disease groups. It is hoped that the supported implementation of the pathway will help address the terminal needs of the patient and offer support for their family. This is expected to reduce the number of patients transferred to hospital in the dying phase.

It is anticipated that the implementation of the Gold Standards Framework and the Liverpool Care Pathway will provide the opportunity for people to find themselves in their preferred place of care at the end of life. The Preferred Place of Care document is not without challenges for the person with dementia due to the capacity required to make and record such preferences and maintain a regular review. However, the inherent principles of the preferred place of care are helpful and are incorporated into the plan of the project.

The local Cancer Network had already carried out a considerable amount of work. It became clear that it was vital to work with care homes with nursing facilities that are based within primary care trusts where the Gold Standard Framework and Liverpool Care Plan were already established by facilitators and GPs were Gold Standard Framework registered.

Work began in three pilot sites where local working parties were developed to drive and develop the programme. The focus was on sustainability for when the programme ends. The working parties have varied across localities members including:

? Hospice educators;

? Facilitators;

? Home managers;

? Pharmacist;

? Consultant psychiatrists;

? Consultant in palliative medicine;

? Nurses;

? Speech and language therapists;

? Macmillan nurses.

? District nurses.

? Out of hours representative.

One of the outcomes of the project was to set up a Gold Standard Framework educational forum in partnership with professionals from Salford and Trafford Primary Care Trust. The focus of this group was to develop and deliver a programme of education to the care settings across all the pilot sites. The programme of education is based on the Gold Standards Framework national programme Phase Three for Care Homes.

The education forum developed the information delivered at the national Gold Standard Framework conferences, adapting this to meet local need. The education programme is delivered in four sessions, which is repeated three times in all settings to capture all the staff set out during one year. It is hoped that by delivering the education then having a three-month implementation and support period, the pilot care settings will develop confidence in implementing the tools. The education is delivered away from the care settings to give care staff maximum educational opportunity.

Staff currently within the pilot care settings have developed a palliative care register for their residents. This is the focus of a monthly multidisciplinary Gold Standard Framework meeting that discusses residents? needs. The indications are that as a result, quality of resident-focussed discussions take place with a more consistent and structured approach to care. This has resulted in anticipatory prescribing and planned involvement of other professionals.

Qualified and unqualified staff have commented they feel more involved and valued, as they are in receipt of a programme of education that they can see is making a difference to the care delivery.

The pilot care settings are now developing advanced care planning with families about the wishes of residents in relation to their preferred place of care and are able to recognise the need to enhance spiritual care of residents making links locally with various faith groups.

A pain tool specific to the needs of the person with advanced dementia who cannot verbalise has been introduced with positive results so far, indicating the prescription and administration of pain relief where appropriate when historically the prescribing of sedatives may have taken place for the management of distress and agitation.

The programme to develop a palliative care approach for the person with dementia in a care setting continues to present challenges. However, partnership working and the dedication of the staff in the pilot care settings who are actively addressing the challenges is resulting in them optimising the care they deliver for their residents.

The programme will be formally researched by JohnMoorsUniversity, Liverpool and will hopefully provide a model of care that can be used to deliver palliative care to the person with dementia in a care setting.

Elaine Horgan is a registered general nurse and Kim Wrigley is a registered mental nurse. North West NHS employs both as enhanced care facilitators


References

Care Service Improvement Partnership (2005) Everybody?s Business: Integrating Mental Health Services for Older Adults. Care Service Improvement Partnership: London.

Department of Health (2006) Our Health, Our Care, Our Say: A New Direction for Community Services. DoH: London.

The National Council for Palliative Care (2006) Exploring palliative care for people with dementia - a discussion document. NCPC and The Alzheimer?s Society: London.

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