Carer perspectives of suicide and self-harm after dementia diagnosis
Research type
Research Study
Full title
Exploring suicide and self-harm following a dementia diagnosis from the perspective of unpaid carers.
IRAS ID
333611
Contact name
Sarah Butchard
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 8 months, 29 days
Research summary
Dementia reaches nearly every family in the United Kingdom (UK), and it is projected that one million people will have dementia by 2030. Receiving a diagnosis of dementia is different for everyone. Research has found that some people experience thoughts of harm to self and suicide after diagnosis of dementia, particularly in the period immediately following diagnosis (Muñoz, et al., 2020; Günak, Barnes, Yaffe, & Byers, 2021). However, little is known about these experiences.
This study hopes to understand the experiences of unpaid carers of people living with dementia. Specifically, people with a diagnosis of dementia who have also experienced thoughts and (non-fatal) behaviours to hurt themselves or end their own life.
The study is hoping to recruit 10-15 participants. Participants will be unpaid carers (over the age of 18 years) of people with dementia. Specifically, those with a diagnosis of dementia who have also experienced thoughts or (non-fatal) behaviours to hurt themselves or end their own life. There will be no limits regarding the types of dementia the person they care for has been diagnosed with or when the thoughts and (non-fatal) behaviours to hurt themselves or end their own life began.
Participation in this study will be voluntary. Advertisements to unpaid carers to participate in this research will be circulated at NHS Trusts, social media, and local support groups and networks. Interested persons will be asked to contact the Study Coordinator via email, who will then provide them with more information about the study. Should interested persons want to participate having understood this information, the Study Coordinator will arrange to speak with them over the telephone to confirm that they are eligible for the study.
A qualitative research design will be used in this study. Qualitative research involves collecting and studying non-numerical information (for example, interviews). Qualitative research designs are useful when the aim of research is to understand concepts, opinions, or experiences. Such designs used to gather in-depth information.
Participants will be asked to complete an interview with the Study Coordinator, lasting approximately one hour. This interview will be carried out over the telephone, video call, or face-to-face, depending on the participant’s preference. Each participant will be asked the same set of questions. These questions have been created using existing literature and the research team’s clinical experience. Participants will be asked questions about their emotional experiences while caring for a person with dementia who also has thoughts and/or behaviours to harm themselves. Participants will also be asked questions about practical responses, what helped and what did not help, as well as questions regarding their opinions and beliefs. Interviews will be recorded and later transcribed.The content of these interviews will be studied by the research team. Thematic analysis will be used to study the interview transcripts. Thematic analysis is a common form of analysis used in qualitative research. Using this method, transcripts of interviews will be studied for patterns which will then form themes. A theme describes something important about the data and represents patterned responses across the 10-15 interviews. These themes will inform a research report. The results of this research will be published in academic journals and presented at conferences.
While there may be no personal benefits in taking part in this study, the information provided will contribute to our knowledge about self-harm, suicidal thoughts, and suicidal behaviour after dementia diagnosis, an area in which research is limited.
The end goal of the study is to form a better understanding of suicide and self-harm following dementia diagnosis from the perspective of unpaid carers. It is hoped that this understanding will influence future research and dementia services, and therefore increase the quality of life for both those living with dementia and unpaid carers.
REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
24/EM/0038
Date of REC Opinion
23 Feb 2024
REC opinion
Favourable Opinion