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
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.
Lay Summary of Results
13 carers participated in the study. All participants were family members of a loved one living with dementia who also experienced thoughts and/or behaviours to hurt themselves or end their own life.
Semi-structured interviews took place between November 2024 and April 2025. Interviews were transcribed and analysed using Reflective Thematic Analysis.Three overarching themes were developed:
1. Finding out and making sense of suicidal thoughts and behaviours
2. A range of emotion reactions to similar experience
3. Am I doing the right thing?Finding out and making sense of suicidal thoughts and behaviours
Carers learned that their loved one experienced suicidal thoughts and behaviours through direct conversation. This was sometimes a “throwaway comment”, the seriousness of which was difficult to determine.
Carers wondered if negative stories and memories of people living with dementia from previous generations led the person with dementia to experience low mood and a wish to end their own life.
Some wondered if suicidal ideation, self-harm and/or suicidal behaviours were a way in which the person living with dementia could communicate distress and/or have control over their lives.
Carers continually weighed up the seriousness of their loved one’s expression to end their life. This was particularly difficult within the context of symptoms of dementia like memory and personality changes.A range of emotion reactions to similar experience
Carers experienced several different emotional reactions. Emotional experiences were connected to caring responsibilities.
Carers experienced fear and anxiety. Carers were fearful that the person living with dementia would hurt themselves when they were not present.
Carers reported feeling guilt and anger. Some blamed themselves and saw the person’s wish to end their own life as a reflection of the care they provided.
Carers felt sad for their loved one that they wished to die. Some delayed expressions of sadness for when they were alone, to avoid upsetting the person living with dementia. For some, this helped them to continue to carry out their caring duties in the short-term.Am I doing the right thing?
Carers sought information to better understand suicidal ideation, self-harm, and/or suicidal behaviours following dementia diagnosis. While information and learning left carers feeling validated and less alone in their experiences, they reflected that the process to gain specific information was not an easy one.
Participants and persons living with dementia were supported by a range of healthcare professionals. Unpaid carers’ experiences were mixed, with some reporting positive experiences and some reporting negative experiences.
Carers used a range of strategies to minimise risk of harm to self for the person living with dementia, e.g. removing sharp objects, close monitoring. While this provided some relief, carers questioned themselves and described being conflicted in their decisions. Carers weighed up other considerations such as the person living with dementia’s wishes and independence.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