RecruitingObservational

Understanding distance dementia care in England

This study, called CONSIDER, is looking into how people with dementia are looked after when their family members, known as 'distance carers', live far away. Distance carers face special challenges like travel costs and difficulties communicating with care services. The research is split into two parts. One part talks to healthcare professionals and volunteers about how they currently support distance care. The other part talks directly to people with dementia, their distance family carers, and homecare workers to understand their experiences. The aim is to find out what works well, what needs improving, and to create better guidance and support for everyone involved in distance dementia care in England. This will help make life better for both carers and the people they look after.

At a glance

Status

Recruiting

Sponsor

University of Greenwich

Enrolment target

Start

13 Feb 2026

Estimated completion

31 Dec 2026

Distance care relationships and dementia care

What is this study about?

This important study, called CONSIDER (ReCOgNising and SupportIng Distance dEmentia caRe), aims to understand the challenges and solutions for people living with dementia when their family carers live a long distance away. We know that many people with dementia want to stay in their own homes, and often rely on support from both family and professional homecare workers. However, when family members live far away – usually an hour or more travel time – it creates unique situations.

These 'distance carers' often face extra difficulties, such as higher travel costs, needing more time off work, and sometimes struggling to communicate with homecare services. The study is also looking at what this experience is like for people with dementia themselves, and for the homecare staff who provide their day-to-day support. Researchers want to identify what is currently working well and what could be improved to make distance care better for everyone involved.

By gathering information from different people involved – including healthcare staff, volunteers, people with dementia, their distance family carers, and homecare workers – the study hopes to create new guidance and recommendations. These could help local authorities and healthcare organisations improve their policies and support services, ultimately making sure that distance carers feel supported and that people with dementia receive the best possible care.

Key takeaways

Exploring support for people with dementia when family carers live far away.
Gathering experiences from staff, volunteers, people with dementia, carers, and homecare workers.
Interviews are about 20-45 minutes, by phone or video call.
Aims to improve support and services for distance dementia care.
No medical treatments or tests involved.
Participation helps future care for others.

Who may be eligible?

This study is looking for people in England to share their experiences related to 'distance dementia care'. There are two main groups the study is interested in.

One group includes people who work or volunteer in health or social care, or for charities, who have experience with 'distance care relationships'. This means you might be a GP, nurse, social worker, care service staff, or someone who helps support people who care for others from a distance, even if it's not specifically about dementia.

The second group is for individuals who are directly involved in 'distance dementia care'. This includes people living with dementia who receive home care and have family who support them but live an hour or more away. It also includes family or friends who are providing that long-distance support to someone with dementia who receives home care. Finally, homecare staff and managers who support people with dementia whose family live far away are also invited to take part. To join, participants must be at least 18 years old and, if you have dementia, be able to agree to take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you live in England?
Do you work or volunteer in health/social care, OR have experience with long-distance dementia care (as a person with dementia, a family carer, or a homecare worker)?
If you have dementia, are you able to clearly say you want to take part?
If you are a family carer, does the person with dementia you support get home care and live an hour or more away from you?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you'll be asked to have a chat (an interview) with a researcher. This conversation will be like talking about your experiences and knowledge of distance care. The interviews will last between 20 to 45 minutes, depending on your role in the study. You can do the interview over a video call (Microsoft Teams) or on the phone, whichever is easiest for you. If you are a person with dementia or a family member, you might also have the option to combine your interview with a researcher going through up to 5 photos you have chosen or taken to represent your experience.

The conversation will be recorded so the researchers can listen back and write down what was said accurately. Your identity will be kept private. That's all there is to it! There are no hospital visits, medical tests, or new medications involved in this study. The total time you'd give to the study is just the length of your interview.

Potential risks and benefits

By taking part, you'll be helping researchers understand distance dementia care better, which could lead to improved support for carers and people with dementia in the future. Your insights could help shape new policies and procedures. As a thank you for your time, some participants (people with dementia and family carers) will receive a £25 shopping voucher. We don't expect any risks from taking part. However, talking about care experiences can sometimes bring up strong feelings. If you feel uncomfortable or upset during the interview, you can pause or stop at any time. The researchers can also point you towards support services if you need them.

Locations (1)

University of Greenwich
Approximate
London, England

Common questions

What is 'distance care'?

Distance care means giving or getting unpaid care from someone who lives far away, usually an hour or more travel time apart.

Who is running this study?

The study is led by the University of Greenwich, with help from King's College London, London School of Economics, University of Hull, and the charity Dementia UK.

Will my information be kept private?

Yes, all your answers will be kept confidential, and your identity will not be shared.

Do I need special equipment to take part?

No, you'll just need access to a phone or a computer with internet for the interview.

When is the study happening?

The study is expected to run from February 2026 to March 2027.

How to find out more

Tiffeny James

tiffeny.james@greenwich.ac.uk +44 (0)754 515 6689 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.