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New Research Could Improve Care For Thousands Dying From Dementia In Nursing Homes

New research funded by Marie Curie provides evidence that stands to improve the care received by those dying from dementia in nursing homes across the UK.1

The research, conducted at University College London, has looked at the effectiveness of a new model of care (COMPASSION) that encourages an integrated, multidisciplinary approach to the care that nursing home residents receive in the later stage of dementia. Through the development of joint working practices, the new model of care aims to help nursing home staff better manage the complex needs of residents while avoiding the occurrence of unnecessary and costly hospital admissions.

Eighty per cent of the estimated 400,000 people in UK nursing homes are living with dementia or another form of cognitive impairment and the majority of people with dementia in the UK (53%) will die in a long-term care institution. A recent study2 has also warned that the number of people who die from dementia is set to almost quadruple in the coming years – all of these people will be in need of high-quality end of life care.

The COMPASSION model – which has been developed according to best practice and in consultation with people with dementia, their carers and a range of health and social care professionals – was tested in two different but typical UK nursing homes.  In both homes, a dedicated care lead worked with and supported nursing home staff, and health and social care professionals, to improve care practices

The model was found to bring about improvements, including the better management of residents’ pain symptoms, and allowing those in the final months of their lives and their families the opportunity to make plans and decisions in advance. It also encouraged staff to adopt a holistic, person-centred approach with an increased focus on shared decision-making with residents and their family members.

However, the research also highlighted that the quality of care that nursing homes staff are able to provide is largely influenced by the external support available to them from their local health and social care professionals, in-turn determined by local funding decisions by CCGs.

As part of the COMPASSION programme of research the team found that the needs of many UK nursing home residents with advanced dementia are not being met. It showed that those with dementia who are approaching end of life often receive fragmented and inadequate care. In interviews, nursing home staff reported poor morale, frustration that they were not provided with adequate training and support, and a lack of access to specialist resources such as palliative and end of life care services.

Dr Kirsten Moore, Lead author & Senior Research Fellow, Marie Curie Palliative Care Research Department, University College London, said:

“A key aspect of the COMPASSION model of care is that it encourages and coordinates local health and social care professionals, involving them in the care of patients in the nursing home. It makes them aware of what support is needed and enables them to meet with nursing home staff to discuss the needs of patients. With the number of people living with advanced dementia only set to increase, it is vital that commissioners are clear on the role that health and social services can play in caring for people in nursing homes and help make this possible by providing the appropriate resources.

“Even where nursing homes are well supported by local services, there still appears to be a widespread lack of coordination between professionals – this model offers a way for every day and specialist healthcare teams to work together in the nursing home setting as they would be in a hospital setting.”

Simon Jones, Director of Policy and Public Affairs for Marie Curie, said:

“We know that with the right support and resources in place it is possible to deliver high quality end of life care to the thousands of people living with advanced dementia in care homes.

“This research provides a model for providing the best possible care in this setting but also demonstrates that, as the number of people with dementia increases, nursing homes are increasingly reliant on, and must be supported by, their local health and social care services.

“If people can’t be cared for appropriately in the nursing home setting, we are likely to see an increase in unnecessary emergency admissions, followed by long costly stays in hospital, which is often the worst environment for someone suffering from the confusion associated with dementia.”

People at the advanced stages of dementia may become doubly incontinent, unable to communicate their needs and often have multiple co-morbidities such as diabetes and hypertension. They are at increased risk of hospitalisation, following chest and urinary tract infections and frequently experience pain, anxiety and swallowing problems.

Dr Khai Lee Cheah, a Consultant Geriatrician at the Royal Free Hospital, London who was involved with the study, said:

“With my experience in nursing homes, I have seen that dementia is better treated when there is consistency among the professionals that are visiting the home and seeing residents on a regular basis.  When professionals, such as GPs, geriatricians, palliative care, and social workers, are well coordinated and familiar with individual residents, we are able to provide more personalised care and are then better equipped to deal with the complex challenges that dementia presents. Working across different areas, it is clear that this unified approach is best for delivering better care for care home residents.”

Informed by the research, a free COMPASSION manual has been developed to enable other UK nursing homes to implement the new model of care themselves and improve their dementia care practices. The manual is available to download here.

The research, published in the journal BMJ Open, is part of the COMPASSION Programme: Care Of Memory Problems in Advanced Stages: Improving Our knowledge – a three year programme grant funded by Marie Curie which aims to inform the development of interventions to improve end of life care for people with dementia.


1.THE COMPASSION INTERVENTION MANUAL:  A MODEL OF ENHANCED INTEGRATED CARE FOR PEOPLE WITH ADVANCED DEMENTIA.  The Compassion Programme (Care Of Memory Problems in Advanced Stages: Improving Our kNowledge). The Marie Curie Palliative Care Research Department at UCL. July 2017.

2. Cicely Saunders Institute, King’s College London. Palliative Healthcare Priorities in England. Published in the journal BMC Medicine. May 2017.