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Two years on from the G8 dementia summit – what progress has been made?

Kirsty MaraisClare van LyndenSusan MitchellEmily CookEmma HardwickHelen DaviesMelody Paton Borchardt

In December 2013 the UK government hosted the G8 dementia summit as part of its G8 presidency. So what has happened since then, and what progress has been made towards meeting the key aim to develop a cure or disease modifying therapy by 2025?

It has been a busy time. Two years on from the landmark event that promoted dementia onto an international stage and gave it much needed attention, relationships have been fostered, strategies developed, and initiatives have been set up. The diagram below summarises what has been happening internationally, in the UK, and by ARUK since the G8 summit. ARUK has launched several innovative research initiatives to address gaps in the pathway to finding a treatment or cure for dementia, including a Global Clinical Trials Fund and an alliance of three Drug Discovery Institutes.

G20-graph

Global Progress

A key agreement of the G8 summit was the recognition that dementia research was chronically underfunded. Learning from the approach taken for HIV/AIDS, where global financing and cooperation of research led to relatively rapid progress in the understanding and treatment of the condition, a similar approach is being sought for dementia. The World Dementia Council was created 18 months ago to create a joined up global approach to the challenges of dementia. It has met 5 times and agreed priorities around financing, regulation and the global integrated development of new treatments. The next step is to convert these plans into outcomes.

The launch of the Dementia Discovery Fund in October 2015 is an innovative starting point for global financing. Collective investment of $100million from the UK Department of Health, Alzheimer’s Research UK and several pharmaceutical companies will be used to fund new approaches to develop the early stages of potential new treatments. The fund is now aiming to raise further money to increase the number of investments it can make in potential future treatments.

There is also international joint working between the organisations that regulate medicines to help ensure that any treatments developed can get to people living with dementia as quickly as possible.

UK Progress

The Prime Minister’s challenge on dementia 2020 was published in 2015 and outlines the government’s key aspirations to improve dementia care, support and research by 2020. There is a commitment to doubling research funding by 2025, and to establish an international dementia institute.

Within England there is currently a review in progress to consider how to speed up access to innovative drugs, devices and diagnostics for NHS patients. This Accelerated Access Review is considering the whole pathway of innovation and ARUK have contributed to the process by highlighting the particular issues for dementia. The importance of dementia as a condition has been recognised, and is being used as a test case for the review.

It has been recognised that there are not enough people taking part in dementia research studies and it has been difficult to recruit to clinical trials – a key reason for a number of recent failures. To address this Join Dementia Research has been developed. It is a database of people with dementia (and those without a diagnosis who can act as controls), with the aim of increasing the number of people with dementia who are prepared to take part in research and providing a facility to match these people to active research projects. This provides a vital process to deliver the highest quality research.

In conclusion

The G8 summit and wider work by Alzheimer’s Research UK has had other, more indirect impacts. In the past two years the level of media attention around dementia has increased significantly. The simple act of more coverage helps to start address the stigma, fear and misconceptions around dementia. With better public understanding comes recognition and support for the challenge ahead.

So do we have a disease modifying treatment or cure for dementia? Well no. But tangible progress has been made in the past two years; there is a definite sense of momentum and collective commitment to defeating dementia. Many of the foundations for success have been put in place, we now need to build on them.

One Response to Two years on from the G8 dementia summit – what progress has been made?

  1. K Obi 23 February 2016 at 2:37 am #

    TOPIC:
    An investigation into the impact of dementia on couples

    ABSTRACT
    The research work concerning the lived experience of dementia, which tends to pay more attention on individuals with dementia and their spouses differently has recognised that the spousal relationships is very vital with regards to the role in experience. Moreover, there is a lack in academic understanding as in how dyadic communications in spousal can impact on the experience attained by dementia for couples.
    This dissertation is aimed at addressing the gap through examining how couples in which a partner had slight dementia as stated on the impact of dementia and how it intends to cope with it. Face to face semi structured interviews were carried out using 12 couples as the research participants and having the various partners interviewed separately. The results indicated that couples stated their experiences as a sequential process and took a decision to get on with their lives by maintaining a sense of normality.

    INTRODUCTION: DEMENTIA
    The Department of Health (2005) stated that a chronic disease is a disease that in spite of any medical efforts can only be controlled and not cured. The life of any individual with a chronic condition tends to be altered – there is no return to “normal”. This definition apparently does not actually admit that individuals with chronic illness do manage to stay effectively with their lives by re-organising the challenges related with their disorder (Clare 2003, Stanton, Revenson and Tennen 2007, Sabat and Gladstone 2010).
    As the population gradually ages and the number of individuals with chronic illness increases (Alzheimer’s Society statistics 2007, UK National Dementia Strategy, 2009), it tends to become impossible to increase the understanding of the real live situation on the effect of these diseases and how individuals actually cope and adjust their lives to these challenges.

    2.0 LITERATURE REVIEW
    This chapter of the dissertation concentrates on research which has previously tried to understand the impact of dementia. This this would be carried out by taking into consideration the impact on individuals with dementia, then the impact on their relationships.

    2.1 Impact on individuals with dementia
    In the research on dementia, several studies have apparently focused on the impact on spouses and families as against those having dementia. According to Daniels et al (2007), the problems which individuals with dementia encounter are quite much especially when they narrate their experiences as against when compared to that been faced by spouse and families.
    When these people are diagnosed to having chronic illness, they tend to have that feelings of being vulnerable and find themselves in shock (Kralik, Brown and Koch, 2000). This was also supported in the research work carried out by Pinner (2003), who discovered that just about 28% of the research participants had knowledge of the illness. Though this was attributed to the fact that they were attending a memory clinic within the same period when the researched was conducted.
    The experience of emotions which individuals having other chronic illnesses within that period of diagnosis tend to reduce in seriousness and are being replaced by other forms of emotions (Scott and Smythe, 2000). Therefore, the negative emotional stress linked to diagnosis are not essentially continual for a long time. However, in spite of the experience of potential shock and distress, Kralik et al (2000) submitted in their study that some participants used in the survey commented on a sense of validation due to the diagnosis offered a narration as to what was occurring in their lives.

    3.0 METHODOLOGY
    The purpose of this dissertation is to examine how people with mild dementia and their spouses attain their experiences of dementia and how they are able to manage their circumstances.
    3.1 Research Question

    • How does the impact of dementia affect their lives and relationship?
    • What strategies are employed by these couples in managing their circumstances?

    3.2 Primary Research
    Primary research comprises of collection of data on issues around real world situation. This includes information that enables the researcher to get closer to the current situation that is being researched. The primary research reflects bon the individual that is being seen as an observer or participant and their view point is used as the data. Primary research is seen as a first-hand information from an individual who witness or experiences a thing. There are procedures which are applied in carrying out a primary research;
    • Interviews
    • Questionnaires
    • Observations

    3.3 Secondary Research
    The is the use of information which is already made available by other authors and researchers. A secondary research source is used by a researcher to address issues or an area of research, making use of previous work carried out within the same topic and as such apply them in making analysis and interpretation of data assessed. These sources are attained through the following ways;
    • Internet
    • Books/ Magazines
    • Newspapers
    • Office statistics
    • Online resource materials
    • Web of knowledge
    • Centre for applied social surveys
    3.4 Difference between Primary Research and Secondary Research

    3.5 Qualitative Research
    This is mainly an exploratory research. It is applied to obtain an understanding of underlying reasons, view point and intentions. It offers insights to a specific problem or assist to identify ideas or create hypothesis for potential quantitative research. A qualitative research is applied to discover trends in other people point of view and getting into a deeper aspect of the problem. The qualitative data methods tend to vary with the use of semi-structured techniques. Some known method apparently comprises of focus groups (group discussions), individual interviews, and participation/observations.
    3.6 Quantitative Research
    This method is used in quantifying problem being investigated by generating numerical data which can be changed into useable statistics. It is applied to quantify, conducts, opinions, behaviours as well as other identified variables. By doing this the researcher is able to generalise results from a larger sample population. Quantitative data collection methods comprise of different forms of surveys – online surveys, paper surveys, mobile surveys and kiosk surveys, face-to-face interviews, telephone interviews, longitudinal studies, website interceptors, online polls, and systematic observations.
    3.7 Advantage and Disadvantages
    Advantages Disadvantages
    Qualitative It is very useful especially at the early stages when a researcher is not aware of what to study. It gives the research no strict structure The method is time consuming and has deep process involvement.
    Quantitative It helps the researcher to measure and analyse data, and research studied The context of the study is ignored and also the research does not occur in a natural sense.

    References
    Clare, L. (2003) Managing threats to self: awareness in early stage Alzheimer’s disease. Social Science and Medicine, 57, 1017-1029.
    Department of Health (2005) Everybody’s Business. London: Department of Health.
    Sabat, S.R. and Gladstone, C.M. (2010) What intact social cognition and social behaviour reveal about cognition in the moderate stage of Alzheimer’s disease: A case study. Dementia, 9 (1), 61-78.
    Stanton, A.L., Revenson, T.A., Tennen, H. (2007) Health Psychology: Psychological adjustment to chronic disease. Annual Review of

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