What is dementia?
Dementia is a term that is used to describe a collection of symptoms, including memory loss, problems with reasoning, perception and communication skills. Dementia is a progressive condition, which means the symptoms are likely to get worse over time. It therefore has particular implications for family members who are providing care and are directly affected.
The number of people with dementia is increasing and presents a significant and urgent challenge to health and social care, which is why dementia research is so important and potentially useful.
There is no cure for dementia, the best that we have at the moment is good care, and understanding what good care looks like is a major theme within the new centre.
Research issue
There is public concern about the increasing numbers of very old people in the UK, indeed across the world, and therefore the increasing numbers of people with dementia.
There is also concern that many cases of dementia go undetected and therefore people do not have access to the right help at the appropriate times.
This has led to calls for screening the older population for early signs of dementia.
Examining the evidence for screening
While concern is understandable, screening a population means testing people who do not yet have any symptoms.
Effective screening would be able to diagnose the condition very accurately and there should be an intervention available for cases who are identified that will lower their risk of serious harm later on (e.g. cervical or breast screening).
However, this is not the case for dementia, since diagnosis in the very early stages is extremely difficult and there is no intervention that is proven to reduce harm if offered at this stage. There is instead a risk of false positive cases, that is, people diagnosed with dementia who do not actually have the condition.
We have been working as part of collaboration funded by the Alzheimer’s Society looking systematically at evidence around screening for dementia, including public attitudes and the economics of screening in this way.
The issue has also been an area of public debate as there are conflicting interests involved. It is therefore all the more important to examine the evidence and look for where more research is needed.
What we are doing about ...
Making a centre for dementia research in Nottingham
Our biggest plan at present is to bring together all the different strands of research around dementia and older people in Nottingham, so that our group and other researchers can work effectively with other partners (health and social care providers, voluntary organisations) and the public, so that people know about our work and are able to help us set the agenda too
Helping people to make decisions
Our DECIDE project (with the School of Health Sciences) is looking at how relatives and paid carers approach issues of mental capacity and decision making in relation to everyday decisions made by frail older people.
- Do people in real life adhere to the principles of the Mental Capacity Act?
- How do they decide if a frail older person is capable of making a competent choice?
We aim to use our findings for a larger study aimed at improving practice in this area.
There are two streams to our interest in employment.
First, the recent abolition of the default retirement age in the UK and the gradual raising of the State Pension age will result in an increasing proportion of workers over the age of 50 and a new generation of workers aged over 65. This will inevitably mean that more people will develop dementia while they are still in employment. We plan a systematic enquiry into this challenge.
Second, as a result of the ageing population, greater numbers of older people will need healthcare. For example, in the UK, two-thirds of patients in general hospitals are older than 70, of whom half have dementia or delirium or both. Some of our work involves exploring the preparation of the workforce that cares for older people with dementia.
Promoting creative arts to enhance well being and to connect art with people
We are engaged in Arts and Humanities Research Council (AHRC) funded research to explore the utility of visual arts interventions in enhancing the health and wellbeing of those with dementia.
Interventions are being developed for delivery in Newcastle, Derbyshire/Nottinghamshire and North Wales in inpatient, community and residential care environments.
The work aims to benefit individuals with dementia as well as developing dementia friendly communities using the arts.
- Population based studies
- Care homes – health service support to homes; effects of caregiver communication styles
- Clinical trials in dementia
- Dementia and employment
- Technology in dementia
- Home or domiciliary care
What we've achieved so far
Dementia Day-to-Day is a new joint initiative led by the Institute of Mental Health and the University of Nottingham School of English. It takes the form of a unique series of blogs – mainly online diaries and reflective pieces – that is integrated into the existing IDEA website.
The Nottingham-led Improving Dementia Education and Awareness (IDEA) website, makes a range of quality courses and resources widely available — both nationally and internationally — with the aim of improving care and quality of life for people with dementia.
The play Inside Out of Mind ran at the Lakeside for 2 weeks in June 2013. The play was written using the transcripts of research interviews from a dementia ward. Performances were given for the public but also for several hundred local health care assistants together with workshops about the play and about dementia. [Watch video]
NHS England has agreed that population screening for dementia is not appropriate and the emphasis should remain on timely diagnosis.
The Fidelity Index project has been successful in bringing together a wide range of providers, health and social care managers and academics, to identify the ingredients of good home care services for people with dementia.
We have close links with the NHS, especially through Nottinghamshire Healthcare NHS Trust, and with numerous other partners including voluntary organisations and independent care providers. For example, the Chair in Dementia Research is jointly funded by Notts Health NHS Trust and Barchester Healthcare, and is just one example of collaborative working between these organisations.