Empowering Better End‐of‐Life Dementia Care (EMBED‐Care): A mixed methods protocol to achieve integrated person‐centred care across settings

Sampson, E. L. |2020|Empowering Better End-of-Life Dementia Care (EMBED-Care):
A mixed methods protocol to achieve integrated personcentred care across settings | International Journal of Geriatric Psychiatry |P. 1-13|DOI: 10.1002/gps.5251

Researchers will use a mixed methods approach to examine the Empowering Better End-ofLife Dementia Care (EMBED-Care) Programme, which aims to deliver a step change in care through a large sequential study, spanning multiple work streams.

According to the research team looking at better end of life care can help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.

The entire research protocol which outlines this research project  is available from International Journal of Geriatric Psychiatry 

Abstract
Objectives: Globally, the number of people with dementia who have palliative care
needs will increase fourfold over the next 40 years. The Empowering Better End-ofLife Dementia Care (EMBED-Care) Programme aims to deliver a step change in care
through a large sequential study, spanning multiple work streams.
Methods: We will use mixed methods across settings where people with dementia live
and die: their own homes, care homes, and hospitals. Beginning with policy syntheses
and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-toAction Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and interprofessional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.
Conclusions: EMBED-Care will help us understand current and future need, develop
novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with
dementia.

A good CHAT boosts quality and saves money in dementia care

A nurse-led service aimed at providing more care for care home residents with dementia outside hospital has produced big savings and improved patient care – winning national endorsement from NHS England | Primary Care Commissioning

As well as providing expert care to the residents, the Enfield Care Home Assessment Team (CHAT)  supports and trains care home staff – giving them the confidence to respond to the residents’ needs and easier access to healthcare services when needed.

Having started as a pilot in four care homes in 2011, CHAT now supports 41 homes across Enfield and the neighbouring London borough of Haringey.  Its membership  draws together mental and physical health expertise – including community matrons, geriatricians, a consultant psychiatrist, mental health nurses, occupational therapists, a phlebotomist and pharmacists. The sense of integrated care is underlined by close partnerships with primary care, frailty networks and a tissue viability service.

Full story at Primary Care Commissioning

Integrated Care Pathways and Care Bundles for Dementia in Acute Care

Caring for people with dementia in acute settings is challenging and confounded by multiple comorbidities and difficulties transitioning between community and acute care | American Journal of Alzheimer’s Disease & Other Dementias

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Recently, there has been an increase in the development and use of integrated care pathways (ICPs) and care bundles for defined illnesses and medical procedures, and these are now being promoted for use in dementia care in acute settings. We present a review of the literature on ICPs and/or care bundles for dementia care in the acute sector. This includes a literature overview including “gray literature” such as relevant websites, reports, and government publications.

Taken together, there is clearly a growing interest in and clinical use of ICPs and care bundles for dementia. However, there is currently insufficient evidence to support the effectiveness of ICPs for dementia care in acute settings and limited evidence for care bundles for dementia in this setting.

Full reference:  Sullivan, D.O. et al. (2017) Integrated Care Pathways and Care Bundles for Dementia in Acute Care: Concept Versus Evidence. American Journal of Alzheimer’s Disease & Other Dementias. 32(4) pp. 189 – 193

What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK?

Kupeli, N. et al. Dementia. Published online: March 1st 2016,

B0003937 Illustration depicting memory
Image source: Matthew Herring – Wellcome Images

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff.

The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews were conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK.

Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.

Read the abstract here

Full document available here

Policy Paper – Dementia: post-diagnostic care and support

dementia pd
Image source: gov.uk

Joint declaration across government, health, social care and the third sector to deliver better quality services to people with dementia.

This declaration sets out:

  • our shared commitment to joint action across government, health, social care, the third sector and all other relevant partners
  • our ambition to deliver better quality post-diagnostic care
  • the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carer

Read the full paper here

Beyond Integrated Care: Population Health Systems?

Persons concerned about integrated care and public health are invited to consider population health as a broader, all-encompassing, construct for addressing local public health and a broad range of socio-economic determinants of health inequalities.

Reference: Alderwick, H. Ham, C. and Buck, D. (2015). Population health systems: going beyond integrated care. London: The King’s Fund, January 22nd 2015.