Family members or friends who care for people with dementia are being invited to take part in 2 new studies into their health and wellbeing through Join Dementia Research.

Exploring the experiences and diets of family carers of persons with dementia

The first study is exploring the diet of carers and how caring for a family member can adversely affect their eating habits.

Previous studies have mostly focused on the nutritional intake of those living with dementia. However, few have focused on the dietary and nutritional needs of their carers.

This area is so important as the food we consume can impact both physical and mental health, which may in turn impact the quality of care provided.

The study involves 30 family or friend carers across the UK completing a 30-minute online survey. They will be asked to provide information on their age, gender and body mass index. They will also be asked about their dietary patterns and what they have eaten over the past 24 hours. 

Participants can also opt to do an hour-long interview about their caring role and discuss any factors that influence their diet. The aim is to understand whether becoming a carer has impacted their dietary behaviours, such as the types of foods they eat and when they have their meals. Interviews can be completed over Microsoft Teams or in person at the University of the West of Scotland’s Lanarkshire Campus.

It is hoped that this study will give researchers a better understanding of the dietary patterns of family carers and whether the caring role impacts this. The overall aim is to improve the health and wellbeing of both family/friend carers and people living with dementia.

The study’s chief investigator, Dr Rachel Kimble, a lecturer at the University of the West of Scotland, said: “We know lifestyle factors such as diet and exercise are so important to health and wellbeing. Yet research often overlooks how these impact carers.

“Studies indicate that caring responsibilities can leave little room for people to focus on their own needs. However, there’s a lack of clarity on whether this leads to poorer dietary habits. This is concerning as poor nutrition could adversely affect their health and caring capabilities. This makes it an important area for investigation.

“We hope this research can help us identify dietary recommendations tailored to the unique challenges that carers may face.”  

The study is open until 31 July 2024. It is being funded by the Internal Seedcorn Funding, in association with the Alzheimer Scotland and RS Macdonald Charitable Trust. 

Facing cancer whilst also caring for someone with dementia or memory problems

The second study is looking into the experiences of those who care for people with memory problems or dementia and have themselves received a cancer diagnosis in the last 5 years. 

There has been no research published on dementia carers with cancer. The Leeds Beckett University research team leading the study spoke to a dementia charity in Yorkshire about this topic. 

From initial talks with the charity, they were alarmed to hear that many carers were unable to attend or had to postpone cancer tests or treatment appointments due to their caring responsibilities. The lack of information on how to get immediate support should they need to be in hospital for longer than expected was also raised as a concern. 

Researchers therefore designed this study to speak to carers firsthand about these difficulties and discuss what support they feel is needed.

Taking part in the study involves an online or telephone interview. Questions will cover the issues and difficulties faced balancing their cancer care with their caring role. Participants can choose to be interviewed at the most convenient time for them. These will last up to one hour.  

Carers are also asked about any information and support they have received to help them deal with these difficulties.

The information from this study aims to improve our understanding of the needs of carers with cancer. This could lead to healthcare organisations offering additional support tailored to their needs. 

The study aims to recruit 15 UK participants via Join Dementia Research by April 2025. 

To find out if you are eligible to take part in a dementia study, sign in to your Join Dementia Research account or, if you are not already registered, sign up today.