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.

Dementia: September 2015

The latest Table of Contents for the journal Dementia is now available online.

This issue features an Irish study investigating  the impact of dementia on length of stay and the associated cost of care in acute hospitals.

Research claims the number of people with dementia could be stabilising

Research published today (Friday 21 August) in The Lancet Neurology journal indicates that the number of people with dementia in some Western European countries is stabilising.

The reason(s) why rates of dementia may be levelling-off, or even falling, is not certain; but improvements in general wellbeing and ongoing work towards the reduction of risk factors for dementia (which include diabetes, cardiovascular disease, stroke, hypertension, depression, low educational attainment, smoking, obesity and physical inactivity) have been suggested.

According to the researchers, although the decrease in dementia occurrence is a positive sign, dementia care will remain a crucial challenge for many years because of population ageing.

Reference: Wu, Y-T. Fratiglioni, L.  Matthews, FE. [et al] (2015). Dementia in western Europe: epidemiological evidence and implications for policy making. Lancet Neurology. Published online August 20^th 2015.

Related: Dementia levels ‘are stabilising’.  BBC Health News, August 21^st 2015.

Dementia: Statistics on prevalence and improving diagnosis, care and research

This parliamentary briefing outlines Government, NHS and other statutory bodies’ work to improve dementia diagnosis, care and support and research. It also includes statistics, tables and maps on age-adjusted dementia prevalence across the UK.

Qualitative evaluation of a self-management intervention for people in the early stage of dementia

Dementia July 2015 vol. 14 no. 4 418-435

Abstract:

Self-management programs are effective for people living with chronic illnesses. However, there has been little research addressing self-management for people with dementia in the early stages. This study presents a qualitative evaluation of the experiences of attending a novel self-management program and initial process evaluation.

The program was designed with and for people with dementia. It addresses: (a) relationship with family, (b) maintenance of an active lifestyle, (c) psychological well-being, (d) techniques to cope with memory changes and (e) information about dementia.

Six participants with early stage dementia completed the intervention that was co-delivered by lay and clinical professional tutors. Participants and tutors attended focus group and interviews at the end of the program to explore their perceptions of the intervention. These were audio-recorded, transcribed verbatim and analysed thematically. Participants reported enjoyment and benefits from the intervention. This was despite some reporting concerns relating to their memory difficulties.

The program’s flexible nature, focus on strengths and the opportunity to spend time with other people living with dementia were particularly well received. Participants and tutors outlined areas for further improvement. The program was feasible and its flexible delivery appeared to facilitate participant benefit. Emphasis should be placed on maintaining activity and relationships, improving positive well-being and social interaction during the program. Memory of the pleasant experience and strengths focus was evidenced, which may impact positively on quality of life.

The results highlight the usefulness and acceptability of self-management for people with early stage dementia and provide initial support for the program’s structure and content.

via Qualitative evaluation of a self-management intervention for people in the early stage of dementia.

Massive rise in health lost to dementia, finds global study – Alzheimer’s Society

Massive rise in health lost to dementia, finds global study

The number of people losing a healthy life due to dementia has almost doubled across the globe in one generation, reveals a report in The Lancet (Monday, 8 June). The latest Global Burden of Disease Study found a 92 per cent increase in dementia-related early death and years lived with disability between 1990 and 2013.

Link to full article:  http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60692-4/abstract

Trial begins to investigate diabetes drug’s potential for Alzheimer’s disease | Alzheimer’s Research UK

Trial begins to investigate diabetes drug’s potential for Alzheimer’s disease

It has been reported today that a drug commonly used to treat type 2 diabetes is to be tested in a clinical trial for Alzheimer’s disease. The drug, liraglutide, is to be evaluated in a phase 2 trial of people in the early stages of Alzheimer’s at centres across the UK.

via Trial begins to investigate diabetes drug’s potential for Alzheimer’s disease | Alzheimer’s Research UK.

New potential cause for Alzheimer’s: Arginine deprivation caused by overconsumption by immune cells — ScienceDaily

New potential cause for Alzheimer’s: Arginine deprivation caused by overconsumption by immune cells

A new study suggests that in Alzheimer’s disease, certain immune cells in the brain abnormally consume an important nutrient: arginine. Blocking this process with a small-molecule drug prevented the characteristic brain plaques and memory loss in a mouse model of the disease. Published in the Journal of Neuroscience, the research not only points to a new potential cause of Alzheimer’s but also may eventually lead to a new treatment strategy.

via New potential cause for Alzheimer’s: Arginine deprivation caused by overconsumption by immune cells — ScienceDaily.

Latest news – Alzheimer’s Society

People who report sleep apnea develop cognitive decline a decade earlier, study finds.

via Latest news – Alzheimer’s Society.

People with breathing problems during sleep – called sleep apnea – develop mild cognitive impairment (MCI) a decade earlier finds a new study published today (15 April 2015) in the journal Neurology.

The medical histories of 2,470 people aged 55 to 90 taking part in the Alzheimer’s Disease Neuroimaging Initiative (ADNI) study were reviewed for the development of MCI or Alzheimer’s disease. Participants were also asked to report whether they suffered from sleep apnea and whether or not they received treatment with a continuous positive airway pressure (CPAP) machine during the night.

On average, people with sleep apnea were diagnosed with MCI in their 70s, a decade earlier than people without sleep breathing problems. The relationship between having sleep apnea and the age of diagnosis of Alzheimer’s disease in the study was much less clear.

Association of fish oil supplement use with preservation of brain volume and cognitive function

Objective: The aim of this study was to investigate whether the use of fish oil supplements (FOSs) is associated with concomitant reduction in cognitive decline and brain atrophy in older adults.

Methods: We conducted a retrospective cohort study to examine the relationship between FOS use during the Alzheimer’s Disease Neuroimaging Initiative and indicators of cognitive decline. Older adults (229 cognitively normal individuals, 397 patients with mild cognitive impairment, and 193 patients with Alzheimer’s disease) were assessed with neuropsychological tests and brain magnetic resonance imaging every 6 months. Primary outcomes included (1) global cognitive status and (2) cerebral cortex gray matter and hippocampus and ventricular volumes.

Results: FOS use during follow-up was associated with significantly lower mean cognitive subscale of the Alzheimer’s Disease Assessment Scale and higher Mini-Mental State Examination scores among those with normal cognition. Associations between FOS use and the outcomes were observed only in APOE ε4–negative participants. FOS use during the study was also associated with less atrophy in one or more brain regions of interest.

Alzheimers and Dementia February 2015 Volume 11, Issue 2, Pages 226–235