Institute of Epidemiology & Health Care


Supporting self management of long term conditions

Personalised care for people with Parkinson's Disease PD-CARE


Chief investigator: Professor Anette Schrag and Professor Kate Walters


Start date: 5-year sudy programme  Main aim or mission of the project:

PD-Care is a five-year study programme, and is funded by the National Institute for Health Research (NIHR).  The study aims to develop and evaluate a new and practical way of personalising and improving care for people with Parkinson’s Disease (PD) living at home.


This study aims to improve the care of people with Parkinson's who are living at home. It will do this by developing an effective new resource (My PD-Care Toolkit), which will have online and paper versions. The aim is that the toolkit will help people with Parkinson's to become more involved in the management of their care, so that care is more tailored to their individual needs. The toolkit will include information about how to keep healthy and independent, guidance on what to do when problems arise and where to access resources, and how to manage Parkinson’s with the help of health care professionals.

The study will also develop training for health care professionals in the use of the new toolkit so that they can better support people with Parkinson’s, and their partners/carers.

To achieve this, the research team will work closely with a group of people affected by Parkinson’s to:

•           Review the existing research and management guidelines for Parkinson’s, and the self-management tools used in Parkinson’s and similar conditions

•           Talk to people with Parkinson’s, their partners/carers and health care professionals about their experiences and goals for Parkinson’s care and self-care

•           Bring together the expertise of health care profesionals, people with Parkinson’s and their partner/carers to jointly design a self-management toolkit and a training programme for professionals

•           Test whether this toolkit is practical and acceptable, and make any necessary adjustments

•           Conduct a large study (randomised controlled trial) to test whether it makes a positive difference to the health and  lives of people with Parkinson’s. Also to test how cost-effective the approach would be if adopted by the NHS and its partners

•           Promote the uptake and implementation of the toolkit.

It is hoped that the My PD-Care Toolkit will reduce disability and hospital admissions and will improve quality of life, and help health care professionals in the delivery of the best care.


Homerton University Hospital NHS Foundation Trust
  • Catherine Atkinson
King's College London:King's College Hospital NHS Foundation  Trust                  NHS North and East London CSU Royal Free London NHS Foundation Trust
  • Mrs Rachel Leuw
  • Mrs Beverley Maydon
University College London



Funded by:

This study/project is funded by/supported by the National Institute for Health Research (NIHR) [Programme Grants for Applied Research (Grant Reference Number: RP-PG-1016-20001)]


Contact details:

Joy Read – Study Co-ordinator

Email: pd-care@ucl.ac.uk

Phone no: 0208016 8182

Supporting family carers of people with dementia: Developing a decision aid (SALSA)

Principle Investigator: Dr Nathan Davies 

Start date: October 2017
Finish date: (if applicable) June 2021

Main aim or mission of the project: 
The aim of this Fellowship is to understand which decisions family carers need to make at the end of life for someone with dementia and develop and test the feasibility of a decision aid for family carers of people with dementia at the end of life at home and in care homes.

Despite efforts to increase discussions about and prepare people for the later stages of dementia including severe dementia and end of life care, through a process of advance care planning, this does not always happen. As dementia progresses, people with dementia are less likely and able to be involved in making decisions, leaving decisions to family carers. Family carers find decisions about severe dementia and end of life difficult.

Study Methods:
This Fellowship consists of four work streams (WS): WS1) Systematic review to identify and review existing decision aids in end of life care; WS2) Secondary analysis of interviews conducted from previous studies and further interviews with family carers and people with mild dementia; WS 3) Co-design a decision aid with practitioners, family carers and carer organisations; and finally WS 4) Feasibility study with family carers.

Study results:
The decision aid has been developed and is currently being tested in a feasibility study.

Project co-applicants and collaborators:
Prof Greta Rait
Prof Liz Sampson
Prof Jill Manthorpe

Funded by:
Alzheimer’s Society

Contact details:
Dr Nathan Davies n.m.davies@ucl.ac.uk

Project links and documents:

1)    Davies N, Schiowitz B, Rait G, Vickerstaff V, Sampson E L. Decision aids to support decision making in dementia care: A systematic review. (2019). International Psychogeriatrics. 

CADRE: Exploring the use of the internet as a support tool for older family carers of people with dementia

Principle Investigator: Dr Nathan Davies 

Start date: October 2015
Finish date: (if applicable) August 2018

Main aim or mission of the project: 
This project aimed to understand what support could be provided online and how, for family carers of people with dementia at the end of life
1.    Review existing interventions
2.    Understand the challenges which could be support by an online intervention
3.    Develop a prototype intervention with user testing 
Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. Use of digital resources including websites to meet the needs of patients and family caregivers is a growing area of research and policy development, and provides an opportunity to close this ‘support gap’, particularly for caregivers finding it difficult to leave their home due to caring responsibilities.

Study Methods:
The project consisted of three phases: phase 1) evidence synthesis; phase 2) qualitative study using semi-structured interviews analysed using thematic analysis methods; phase 3) co-design intervention development and user testing. 

Study results:
Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication.

Project co-applicants and collaborators:
Prof Greta Rait
Prof Steve Iliffe
Prof Kate Walters 
Dr Jenny Hopwood 

Funded by:
NIHR School for Primary Care Research

Contact details:
Dr Nathan Davies n.m.davies@ucl.ac.uk

Project links and documents:

1)    Davies N, Hopwood J, Walker N, Ross J, Iliffe S, Walters K, Rait G. Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life. (2019). BMC Palliative Care. 
2)    Davies N, Iliffe S, Hopwood J, Walker N, Ross J, Rait G, Walters K. The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study. (2019). Ageing and Mental Health. 
3)    Davies N, Walker N, Hopwood J, Iliffe S, Rait G, Walters K. (2018) A “separation of worlds”: The support and social networks of family carers of people with dementia at the end of life, and the possible role of the internet. Health and Social Care in the Community.
4)    Hopwood J., Walker N., McDonagh L., Rait G., Walters K., Iliffe S., Ross J., & Davies N. (2018). A systematic review of internet-based interventions aimed at supporting family caregivers of people with dementia. Journal of Medical Internet Research. 20(6).