The MARQUE project: Managing Agitation and Raising QUality of Life. A project to improve quality of life in people with moderate or severe dementia

In the UK about 820,000 people live with dementia with numbers increasing rapidly as the population ages. The Government's "Challenge on Dementia" aims to drive improvements in health and care, create dementia friendly communities and improve research.
Responding to this challenge, our MARQUE programme "Managing Agitation and Raising Quality of Life", aims to increase knowledge about dementia, agitation and personhood. We will use the programme to:
-develop our theoretical knowledge of dementia, agitation, how people with dementia and their carers experience these and their relationship to citizenship and personhood.
-reduce agitation in people with moderate and severe dementia and thus increase quality of life, through the known link between agitation and quality of life.
-mentor existing and train new researchers, to build a legacy of trained dementia researchers.
Agitation is common, occurring in about 50% of people with moderate or severe dementia every month, is distressing for them and for those around them. The symptoms include restlessness, pacing, shouting or even verbal or physical aggression and signify unmet need. The person with dementia may be in pain, hungry, thirsty, needing comfort or bored but unable to know or explain this. Our group (including Shirley Nurock, an Alzheimer's Society carer) has completed a funded literature review on interventions to reduce agitation. Our vision is to build on this evidence, advancing knowledge, including how to effectively implement findings to improve quality of life for those with dementia.
It is a bold and ambitious proposal by a multi-professional team, our family carer partners and participating national and international groups. The team, who have previously worked together successfully, comprise social sciences, medicine, nursing and psychology. A DeNDRoN PPI focus group advised on and approved our proposal. We are partnered by Alzheimer's Society who are leading PPI, care home groups and voluntary and parliamentary groups.
The research will involve observing and interviewing a wide range of people with dementia and those who care for them at home, in care homes and in hospitals (including end of life) in order to better understand how agitation is currently managed, barriers to good practice and how care could be improved.
We will use this information (with our literature review findings) to develop, test and implement a manual to train staff about how best to reduce agitation and improve quality of life in care homes. It will be tested in a randomised controlled trial in 14 care homes. Our vision is to make this as central to care as good eating and hygiene.
Our programme at home will lead to a pilot home intervention, including massage, found to be effective in our review.
In addition, we will further develop another manual, to improve people with dementia's end of life for, including "terminal agitation" (comprising restlessness, anxiety, sleeplessness and shortness of breath around the time of dying). This manual will be piloted in four nursing homes (and a control home) and staff, family and residents asked whether it is helpful, practical and feasible.
Our programme lasts 5 years but we expect carers and people with dementia to start to benefit from 2 years as we begin testing. It will improve our understanding of current practice and the challenges for family and paid carers. We will have programmes to put into practice across the UK to help manage agitation, including at home, in care homes and at the end of life. We will know what works, is cost effective and how to implement.
This will improve quality of life for people with dementia and their carers wherever they live and will help guide research and practice. Our partners will then work with us to ensure national publicity and implementation. This will include incorporation into care home and hospital inductions and feedback to Care Quality Commission as a potential new care standard.

The MARQUE project will impact on: i) people with dementia and their family carers through better, more cost-effective services to enhance wellbeing. Caring for people with dementia costs £16 billion/year; expected to triple over 20 years ii) those implementing health policy and care, and iii) academic capacity, increasing dementia academics capacity.
1. Patient impact
People with dementia and their family carers are the primary intended beneficiaries, so we will develop relevant outputs (knowledge, interventions, implementation plans) which have their support. Our PPI input was integral to the project's development, and will continue throughout.
The project will have short-term impact, as participants in research tend to benefit whether in the intervention group or not. If the interventions succeed, those receiving them will benefit. Additionally, we will achieve medium and long term benefits, as we expect our results to improve agitation and quality of life of people with dementia. Agitation is one of the commonest neuropsychiatric symptoms of dementia and is very distressing for the person with agitation, and interferes with their functioning and relationships. Our submitted systematic and health economic review shows that people with dementia and significant agitation cost more than double in care costs than those with dementia without agitation. That is a mean of £30 000 more per year each (£60 000 versus £28000). The scale of possible economic impact is therefore measured in £billions, as the cost of dementia is projected to reach around £70 billion in the near future. It should help to reduce premature admission to care homes, more specialist placements, inappropriate admissions to NHS hospitals and hospital stay length.
2. Public health and policy impact
The project's outputs include new approaches to personhood in dementia, how to involve family carers in collecting data on people with dementia living at home, "quality of death", and influences on agitation and quality of life in care homes. We will engage voluntary, private, public and political stakeholders to increase and influence evidence based public policy making. The International Longevity Centre, an independent charitable think-tank, specialising in how society needs to respond to ageing, will lead on disseminating results to politicians, policy-makers, voluntary sector and industry. Existing relationships with key stakeholders (NHS, Admiral Nurses, Marie Curie and the AS) will be used to communicate findings and help deliver changes. Impact will also be achieved through publications, conference presentations and informing the Care Quality Commission of the results and their potential for appraising homes. We have talked to Professor Burns, dementia tsar, about the project and our manuals will be hosted on the DH website. The findings will also be useful in primary care- GL has worked with DH and AS to write primary care algorithms on managing agitation in dementia.
3) Academic capacity
We will build dementia research capacity by supervising PhDs in the programme and mentoring early and mid-career dementia researchers. Other benefits are: knowledge transfer about concepts of personhood in dementia, how to involve family carers in collecting data, "quality of death", and what influences agitation and quality of life in care homes. The research team brings together academics across disciplines, including social sciences (sociology, statistics, health economics, health care evaluation, social and health policy) mental health, older people's medicine, psychology, implementation science and palliative care to cascade findings. Findings will be applicable to academics in these fields and government bodies, charities national policy units, universities and other research centres. Our international partners from USA and Australia will shape and be conduits for international implementation. Their involvement will ensure worldwide academic advancement.