Previous Research

Principal 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.

Background
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. 

Principal 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 supported by an online intervention
3.    Develop a prototype intervention with user testing 

Background
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)