Carers of people with dementia often have to organise and manage support and services for the person with dementia. By improving understanding of such factors, future interventions and policies can be developed to address these needs. The Carer Experiences study, on Join Dementia Research, will therefore explore the experience of people who care for someone with dementia.

We caught up with Kathryn Sanderson, Clinical Academic Fellow at the University of Glasgow, to find out more about her study.


Kathryn Sanderson, Chief Investigator for this study

What are the main aims of the Carer Experiences study?

We know that carers of people with dementia can feel that finding, understanding and arranging health and other care and services for someone with dementia is challenging. Services can be disorganised, and carers are not always aware of all the services that are available to them. This study will investigate the experiences of carers of people with dementia when they try to organise and arrange health and other care and services. In particular, we want to find out about the ‘work’ that carers do in organising and managing care and services for someone with dementia. We want to discuss these issues and different factors that affect carers’ ability to manage as a care-giver for someone with dementia.

What does it involve for a participant?

Once a participant signs up to the carer experiences study they only need to attend one focus group (of about 6-10 people) to discuss their experiences of being a carer for someone with dementia. Participants would be asked to provide a small amount of personal information such as age, gender, relationship to the person they care for, and how many hours a week of care is provided for the person with dementia.

A researcher will then lead the group in discussing experiences of finding and arranging care and services, such as health services, social care services and other services (for example from charities). We will only discuss experiences in organising care and services and how people manage this. Participants will not be asked to discuss their own health.

Participants will be offered a £10 gift voucher for taking part, and local travel and some care expenses can be reimbursed.

How long is the study for?CarerExperiencesStudy

The study would involve just a one-off visit for the focus group. The focus groups will be held in either Edinburgh or Glasgow and participants would be able to pick which city suited them best. The focus groups would last a maximum of 2 hours.

What do you hope the outcomes of the study will be?

We hope to work out the amount and types of ‘work’ that carers do when arranging care and services for someone with dementia. We hope to find out what makes it easier or more difficult to arrange care and support and what services carers find useful.

Where is the study based?

The study is being run from the University of Glasgow but the Focus Groups are being held in both Edinburgh and Glasgow.

Who can take part in this study?

Volunteers must identify themselves as a carer of someone with dementia, and live in the Greater Glasgow & Clyde or Lothian areas.

two-people-discussing-V02You can see if you are eligible for this study, as well as others around the nation, by logging into your Join Dementia Research account.
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