Facilitating Early Diagnosis of Dementia (FED-D)

Plain English summary of protocol

Background and study aims
In the UK, about 820,000 people have dementia (brain disorder). Nearly two-thirds of people never find out and for many that do, diagnosis takes a long time with the patient and family overcoming numerous obstacles. Although it is UK national policy in the Dementia Strategy that people are diagnosed early, and this has been accompanied by a nationwide information campaign, there has been little progress. Diagnostic barriers include people with memory problems being reluctant to see their general practitioner (GP), GPs not seeing there is a problem or referring for help, and patient and family concerns about stigma. We have designed a leaflet based on the CHOICE project which asked family carers what the problems were in making decisions for people with dementia and how they overcame them. The most common problem that carers struggled with was getting a diagnosis and help. The CHOICE leaflet for our study was developed from family carers of people with dementia’s answers. The aim of this study is to increase timely diagnosis of dementia. We intend to send a personal letter from the GP with the CHOICE leaflet explaining what to do to overcome barriers to getting help for memory problems to all people aged over 70 in the practice. We will find out whether this enables people with dementia to receive an earlier diagnosis.

Who can participate?
We are recruiting GP practices to the study. Our study will include all patients in the GP practices over the age of 70 years (unless already known to have dementia or living in a care home).

What does the study involve?
The GP practices will be randomly allocated to one of two groups. One group (intervention GP practices) will send the leaflet along with a letter from the GP to the patients and the other group provides usual care (control practices). The GP letter will go to every participant in the intervention group with an explanation about how memory problems which interfere with life become more common as people age. It will ask for people to consider the leaflet for themselves or members of their family. This will be sent to people who live alone as well as those living with others. We will test if this increases the number of people with undiagnosed dementia presenting with memory-related problems to their GP, the number of patients GPs refer appropriately to memory services, and if this referral is at an earlier stage. We will compare the brain function scores of those patients referred from the intervention GP practices to those from the control practices. If our method is successful we want to know whether the cost is low. We will calculate the cost for every extra person diagnosed and whether there are many people who are referred to memory services with no dementia (which would increase the cost).

What are the possible benefits and risks of participating?
Our leaflet addresses how to overcome the common problems diagnosing people with dementia. Early diagnosis is useful because although there is no cure, many people with dementia and family carers feel relieved by knowing what the diagnosis is. The diagnosis leads to treatment and more support which reduces crises, can improve quality of life and delay care home admission. It also allows people to make choices about current and future care and other plans. It is also thought to save money for the state and for individual family carers.

Where is the study run from?
The study is run from University College London and the research will take place in UCL Partners partnership trusts where our team work clinically. This will include local GP surgeries and hospitals including mental health trusts within North London and surrounding counties.

When is study starting and how long is it expected to run for?
The study will start in mid-2013 and will run for 12 months. The GP practices will be enrolled in the study for a period of 12 months.

Who is funding the study?
The Alzheimer’s Society (UK)

Who is the main contact?
Prof. Gill Livingston
g.livingston@ucl.ac.uk

Contact information

Prof Gill Livingston
Scientific

Division of Psychiatry
University College London
6th Floor, Maple House
149 Tottenham Court Road
London
W1T 7NF
United Kingdom

ORCID ID	0000-0001-6741-5516
Email	g.livingston@ucl.ac.uk

Dr Juanita Hoe
Scientific

Division of Psychiatry
University College London
6th Floor, Maple House
149 Tottenham Court Road
London
W1T 7NF
United Kingdom

ORCID ID	0000-0003-4647-8950
Email	j.hoe@ucl.ac.uk

Study information

Eligibility

Locations

Countries of recruitment

• United Kingdom
• England

Study participating centres

Results and Publications

Study outputs

Editorial Notes

16/03/2017: Publication reference added.
05/01/2015: The overall trial end date was changed from 31/05/2015 to 31/10/2015.