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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s