From time to time we will provide information here about research involvement or participation that we think may be of interest to carers. We will look at the quality and focus of research opportunities before posting them on our site, but we cannot be responsible for the conduct of these study opportunities. Researchers are welcome to email Research@dementiacarers.org.uk with a summary of their request to post information. Carers can then contact researchers directly to express their interest.

 

 

Study Title: Eating, drinking and care for people with dementia: How can we best support family carers?

Organisation: University College London

Project Description:

We would like to invite you to take part in a research study led by University College London entitled ‘Eating, drinking and care for people with dementia: how can we best support family carers?’

People with memory problems or dementia may have problems with eating and drinking. This may get more difficult in the later stages of dementia. Families have told us that they can find it difficult to help their relative with eating, drinking and swallowing.

We want to understand from you as someone who has memory problems or dementia, or as someone who cares for someone with advanced dementia, how you think people should be best supported to continue to eat and drink. We want to develop an information resource about eating and drinking for people with dementia in the later stages and those close to them. We want to hear your thoughts. We would like your input on what we should include in the resource.

We are looking for people living with dementia or carers of people with advanced dementia to take part in interviews (lasting 1-1.5 hours) either at their own homes or at UCL premises. We are interested in interviewing people from a variety of different cultural and ethnic backgrounds to ensure that we elicit as wide a range of views and opinions as possible.

Participants who take part in interviews will be provided with a £20 one for all gift card. If willing to travel to UCL, we will be able to refund travel costs.

Inclusion Criteria:

To be able to participate, people living with dementia will have a clinical diagnosis of any type of dementia, mental capacity to provide informed consent and be able to read and speak English. We will not be able to include people living with dementia who are unable to provide informed written consent or where there are clinical or social concerns that preclude them being approached. For carers to participate, they must be able to read and speak English.

Other information:

Interviews will be recorded on a digital recorder. This will be professionally transcribed by an external professional transcription service. Once the interview has been transcribed, we will ensure that you will be identified only as a number, so you can’t be identified. After this, the recording of our interview will be destroyed. All information collected about you during the research will be kept strictly confidential. You will be assigned an ID number. This information will be collected, stored, handled and processed by the research team at University College London. Whilst we may use a few direct quotes from interviews, you will not be able to be identified in any reports, publications, or presentations.

Ethical Approval:

Yes (Research Ethics Committee Number: 18/0577)

Outcome of study:

Results from the study will be presented at conferences and published in journals. If you wish to have a copy of the study results sent to you, please let the research team know. The results will be used to develop an information resource.

For more information please get in touch:

Contact details: Dr Nathan Davies (senior research fellow), Dr Yolanda Barrado-Martin (research fellow), Dr Pushpa Nair (research fellow)

pushpa.nair@ucl.ac.uk; y.barrado@ucl.ac.uk; n.m.davies@ucl.ac.uk; OR telephone 02078302932

 

 

Call for Dementia Carer Volunteers

Theresa Stiles is the daughter of a lady with Alzheimers and lost her father to vascular dementia last year. She is completing a MSc Psychology for graduate status of the British Psychological Society and is now undertaking her dissertation study. Her study, “Gendered Psychological Determinants and age for Resilience and Burnout Amongst Informal Dementia Carers” is focussing on carer resilience. This study has been approved in accordance with the British Psychological Society Ethical Principles for conducting research with Human Participants, and the University of Derby Policy and Code of Practice on Research Ethics on the 14/05/2019. The study does not have a Participant Information Sheet, as all participant information is included in the beginning of the survey before the participant gives their consent, please follow this direct link to the survey.