At present, little is known about how best to support people with dementia in their own homes at the end of their life, as well as the people who look after them. A new Liverpool-based study is looking to improve the understanding around this. We caught up with Caroline Mogan, Chief Investigator of the ‘Barriers and Facilitators of Living and Dying at Home with Dementia’ Study, to find out more:

What are the main aims of the study?

The purpose of this study is to find out more about this by talking to people who have cared for someone with dementia at home during the final phase of their life and to find what happened to them during this time.

What does it involve for a participant?

The researcher will make an appointment to see the participant at a time and place that is convenient so that they can share their experience of looking after someone with dementia at home at the end of their life. The interview will be audio recorded so that the researcher can concentrate fully on what is being said without having to take notes.

Is it a one-off visit?

It is a one off visit that usually lasts around an hour. If the interview seems to be taking a long time, this can be discussed and another appointment can be made to continue the interview.

What does the team hope the outcomes of the study will be?

Through listening to personal experiences, the research team hopes to gain a better understanding of what this group may need to improve the quality of life at this difficult time and find out what services were available. The knowledge gained will add to the lack of evidence we currently have on this topic. It will also be used to inform services at a local and national level so they can be tailored better to meet individual needs.

Where is the study based?

The study is based at the University of Liverpool but we are keen to talk to people from all over the country

Who can take part?

• People who have been an unpaid carer (including relatives and friends) of someone with dementia in their last year of life and at time of death
• Male or female
• Aged 18 years or over
• Reside in the UK
• English speaking
• Death must have occurred within the last three years
• Person with dementia must have resided in their own home (or that of a family member) up until the last few months of life

To protect those who may be vulnerable, those experiencing the death of the person with dementia within a three-month period may not be eligible.

You can see if you are eligible for this study or others around the nation by logging into your Join Dementia Research account.

Not registered with Join Dementia Research? Why not sign up today?