Aging & Mental Health
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20
Homicidal ideation in family carers of people with dementia Siobhan T. O'Dwyer, Wendy Moyle, Tara Taylor, Jennifer Creese & Melanie J. Zimmer-Gembeck To cite this article: Siobhan T. O'Dwyer, Wendy Moyle, Tara Taylor, Jennifer Creese & Melanie J. Zimmer-Gembeck (2015): Homicidal ideation in family carers of people with dementia, Aging & Mental Health, DOI: 10.1080/13607863.2015.1065793 To link to this article: http://dx.doi.org/10.1080/13607863.2015.1065793
Published online: 20 Jul 2015.
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Date: 05 November 2015, At: 16:56
Aging & Mental Health, 2015 http://dx.doi.org/10.1080/13607863.2015.1065793
Homicidal ideation in family carers of people with dementia Siobhan T. O’Dwyera*, Wendy Moylea, Tara Taylora, Jennifer Creesea and Melanie J. Zimmer-Gembeckb a
Centre for Health Practice Innovation, Menzies Health Institute Queensland, Griffith University, Australia; bSchool of Applied Psychology, Griffith University, Gold Coast, Australia
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(Received 13 April 2015; accepted 17 June 2015) Objective: Family carers of people with dementia have higher than average rates of suicidal ideation, but there has been no research on homicidal ideation in this population. The aim of this study was to explore thoughts of homicide in family carers of people with dementia. Method: A descriptive qualitative approach was taken. Twenty-one Australian carers (7 men, 14 women) participated in individual, in-depth interviews and the transcripts were analysed thematically. Results: Seven themes were identified in the data active thoughts of homicide; understanding homicidal thoughts in others; passive thoughts of death; euthanasia; homicidal thoughts in other caregiving situations; abuse; and disclosing thoughts of harm. Two of the 21 participants had actively contemplated the homicide of their care recipient, four expressed a passive desire for the care recipient’s death, and four reported physically or verbally abusing the care recipient. Only one carer had previously disclosed these experiences. Conclusion: Homicidal ideation is a real and significant phenomenon among family carers of people with dementia. Service providers and health professionals are encouraged to identify and support carers contemplating homicide, but to do so in a way that recognises the broader social context of carer burden. Keywords: caregivers; dementia; homicide; euthanasia; abuse
This … is to be neither an accusation nor a confession, and least of all an adventure, for death is not an adventure of those who stand face to face with it. It will simply try to tell of a generation … who, even though they may have escaped the shells, were destroyed by the war. Erich Maria Remarque, All Quiet On The Western Front
Introduction Our previous research (O’Dwyer, Moyle, Zimmer-Gembeck & De Leo, 2015) revealed that one in six family carers of people with dementia have seriously contemplated suicide and one-fifth of those are likely to attempt suicide in the future. While conducting that research we received a note from an anonymous participant that said, ‘You’ve asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I was caring for.’ Naturally this raised some questions: Who was this carer? Had he or she contemplated killing the person with dementia? Had he or she attempted to kill the person with dementia? And, was this an isolated case? To our knowledge, there is no research on homicidal ideation among family carers of people with dementia or family carers more generally.1 Research on spousal homicide-suicides among older adults, however, has shown that up to 40% of perpetrators were providing care for a spouse with a long-term illness or disability (Malphurs & Cohen, 2005) and close to 10% of victims had dementia (Salari, 2007). *Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis
While homicide-suicides may be qualitatively different from homicides alone (Eliason, 2009), the majority of family carers are older adults (Australian Bureau of Statistics, 2009; Carers UK, 2012; National Alliance for Caregiving, 2009) and evidence suggests that (1) domestic homicides perpetrated by people over 65 are more likely to end in suicide than not (Bell & McBride, 2010; Bourget, Gagne, & Whitehurst, 2010; Eliason, 2009) and (2) more than 70% of older homicide-suicides have suicide as their primary motive (Salari, 2007). Taken together with the growing body of research on suicidal ideation in carers (O’Dwyer, Moyle, & Van Wyk, 2013; O’Dwyer, Moyle, Pachana, Sung, & Barrett, 2014; O’Dwyer, Moyle, Zimmer-Gembeck, & De Leo, 2013), and the note from our participant, this provides a clear imperative for research on homicidal ideation among carers. Although homicidal thoughts do not necessarily lead to homicidal acts, the absence of data on homicidal ideation during the caregiving journey is a considerable gap in the extant literature and may be hindering efforts to prevent deaths by homicide. The aim of this study was to explore carers’ thoughts of homicide, specifically their thoughts of ending the care recipient’s life. As the research was exploratory, a descriptive qualitative approach was taken. Methods Participants Sixty-one Australian carers from a large, cross-sectional survey of caregiver health and well-being (O’Dwyer,
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Moyle, Zimmer-Gembeck & De Leo, 2015) gave consent to be contacted for (and subsequently agreed to participate in) a follow-up interview. Participants in the original study were a convenience sample, recruited via newspaper advertising; promotion at community events and conferences; direct invitations via advocacy organisations and community and long-term care providers; social media; radio interviews; and word of mouth. Participants were eligible for the original study if they could read English and identified themselves as the primary provider of care for a family member, friend, or spouse with dementia who was either living in the community (home care, HC), was in longterm care (in care, IC), or had died within the past 2 years (bereaved, BD). Although carers were informed that the interview would contain questions about homicide, the current study was framed as a broad exploration of the caregiving experience and prospective participants were not made aware that homicidal ideation was a primary focus. To ensure a diverse, information-rich sample was included, maximum variation sampling (Patton, 2002) was used to select carers for interview. Gender, care type (HC, IC, BD), caring relationship (spouse, parent, sibling), location (urban, rural/remote), and cultural diversity (migrant; lesbian, gay, bisexual, or transgender (LGBT); indigenous) were the dimensions of variation used to select participants. On the basis of these factors, 21 participants were selected for interview. Procedure An interview protocol, including a semi-structured interview guide, was developed by SOD and WM, in consultation with a registered psychologist. To establish rapport, participants were asked to provide a brief overview of their caring experience at the beginning of the interview. The questions then focused on suicide, homicide, resilience, and support. The interview protocol also included risk assessment questions and a risk response plan for responding to a carer or person with dementia who was in imminent danger. The risk response plan was guided by the mandatory reporting requirements for psychologists in Queensland, Australia (Australian Psychological Society, 2004, 2005, 2012). The interviews were conducted one-on-one, by telephone, and by a registered psychologist. All interviews were digitally recorded and transcribed verbatim. The interviews ranged in length from 38 to 106 minutes. The University Human Research Ethics Committee approved the study and all participants provided signed, informed consent. This included consent to call emergency services if the interviewer considered the life of the carer or the person with dementia to be at imminent risk. All participants provided contact details for their general practitioner and next of kin, who could be notified and/or arrange emergency care for the person with dementia if required. As the interviews were conducted by telephone, all participants provided an address that could be given to emergency services if necessary. Before the interview, and again afterwards, all participants were provided with a list of telephone support
services for carers, including a 24-hour crisis line. The interviewer (TT) also debriefed with the lead author (SOD) immediately after each interview. SOD listened to each interview within 24 hours of it being conducted and made follow-up calls to monitor carer well-being or seek clarification as required. Analysis The thematic analysis followed the steps identified by Braun and Clarke (2006): data familiarisation through reading and re-reading the transcripts; generating initial codes in a systematic fashion across the whole data set; identifying themes within identified codes; reviewing themes for internal and external validity; and defining and naming themes. One member of the research team (JC), who had not been involved in developing the interview questions or conducting the interviews, conducted the initial analysis. After the initial analysis was complete, the codes and themes were reviewed and revised by a second researcher (SOD). The revised analysis was then discussed with a third researcher (WM), with discussion continuing between the researchers until consensus was reached. A note on nomenclature The term homicide and its variants (homicidal thoughts, homicidal ideation) have been used throughout this paper. This term is consistent with the language used in the contemporary literature; avoids the assumptions associated with terms such as murder and mercy killing; and distinguishes the thoughts/behaviours of lay people from those of medical professionals (e.g. assisted suicide, euthanasia). In the interview questions the term killing was used (i.e. Have you ever thought about killing [name]?). In three pilot interviews that were not included in the analysis, the term harming and the phrase ending the person’s life were used, but these terms confused participants and elicited responses related to medical euthanasia. For clarity, the term killing was used in all subsequent interviews. Results Participants The 21 participants ranged in age from 37 to 89 years (M D 67; SD D 14). Ten were caring at home, four had placed the person with dementia into long-term care, and seven were bereaved. The majority (n D 16) were spousal carers and five lived in rural/remote areas. Table 1 provides a description of each participant. Themes Seven themes were identified in the data: active thoughts of homicide; understanding homicidal thoughts in others; passive thoughts of death; euthanasia; homicidal thoughts in other caregiving situations; abuse; and disclosing thoughts of harm. The themes are discussed below, with representative data extracts provided to illustrate the themes.
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Table 1. Participant demographics.
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Participant Participant 1 Participant 2 Participant 3 Participant 4 Participant 5 Participant 6 Participant 7 Participant 8 Participant 9 Participant 10 Participant 11 Participant 12 Participant 13 Participant 14 Participant 15 Participant 16 Participant 17 Participant 18 Participant 19 Participant 20 Participant 21
Age
Gender
Care type
Person with dementia
62 83 83 73 85 72 56 60 69 74 76 59 75 89 37 72 48 60 52 64 50
F M M F M F F F F M M F M M F F F F F F F
IC IC BD BD BD HC BD HC BD HC HC IC HC BD BD HC HC IC HC HC HC
Husband Wife Wife Husband Wife Husband Mother Husband Husband Wife Wife Mother Brother Wife Mother Husband Husband Husband Mother-in-law Father Husband
Other
Migrant Migrant Migrant and Rural/remote Rural/remote Migrant and Rural/remote Rural/remote Rural/remote
LGBT
Notes: HC: caring at home; IC: person with dementia in long-term care; BD: bereaved; LGBT: lesbian, gay, bisexual, or transgender.
Active thoughts of homicide Two female, spousal carers (Participants 1 and 18) reported active homicidal thoughts while caring at home. For Participant 1, the thoughts were relatively frequent and resulted from physical and psychological fatigue and an unwillingness to place the person with dementia into residential care. I wasn’t thinking about doing myself in or him in every day … I might have thought about it once every six months or something, what’s a way out of this … You get to a point I suppose, you’re so drained, you’re so tired, you don’t want to let go of him, you don’t want to put him into a nursing home and you’re thinking now the best thing I could do for him is to bump him off and I’ll go with him and then we’ll go together. (Participant 1)
For Participant 1 these were clearly thoughts of homicide-suicide, rather than homicide alone, but her statements on which came first thoughts of homicide or thoughts of suicide were conflicting. Although Participant 1 denied any intention of acting on the thoughts, she had considered the merits of different methods and her choice was informed by the homicidesuicide deaths of people she had known. I never thought of overdosing [him] and overdosing myself. I think the best one I thought about was probably a gas pipe out of the car and gas the two of us, because friends of mine have actually done that. She was a very ill person. They were only in their fifties and they damn well … yeah, he put her in the car and they had a bottle of tablets and gassed themselves and bang. So I thought, well, that’s a pretty good way to go, actually. It went through my head, but well, I mean, lots of things go through your head, but I never got to the point where I was so depressed that I would have gone out and actually done it. (Participant 1)
Participant 1’s reasons for not acting on the thoughts included personal determination, the absence of additional stressors such as physical health problems, and a commitment to, and involvement in, activities outside of caring. Although the threat of jail was cited as a deterrent to homicide alone, it appears to have facilitated thoughts of homicide-suicide. Well, I wouldn’t have done it to him because I didn’t want to do time on his behalf … If I was to do it, I’d have had to top myself as well because I certainly wasn’t going to put myself behind bars for doing it to him. (Participant 1)
For Participant 18, thoughts of homicide were a ‘once off,’ did not include suicidal ideation, and were the logical end-point of a self-defence scenario in which she was threatened by the care recipient. I think if I hadn’t moved really quickly, that knife would have got me … it might not have been intentional, but it could have been in self-defence … So I mean, when [he] swiped that knife at me, I feel as though if he had come after me, I think I would have found a way to protect myself. I would have used, say, force if I had to … to protect myself. (Participant 18)
These thoughts were also the catalyst for placing the person with dementia into long-term care. That was … why I had to put him into permanent care. Even though it was for his safety, it was also for mine, because he started to get quite violent towards me … . That was the turning point … I’m afraid that if I go past my limit I might … it might not be nice. It might … I might … I don’t know, I think I might have done
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Understanding homicidal thoughts in others The majority of carers (13) who had not contemplated homicide understood how other carers could, and acknowledged a range of factors that could contribute to thoughts of homicide or homicide-suicide. These factors included compassion, frustration, a lack of support, and a sense that the caregiving role was never ending. Some exemplars are provided below.
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I can understand where people would think just put them out of their misery. Put them out of their misery and get me out of mine. (Participant 8) For some of them I think it could be they may believe that their loved one would be better off. For some of them it may be that they are at the end of their capacity to look after somebody else. It could be the lack of support that they’re getting, that they’re caring for their loved one but nobody is caring about them. A lot of people don’t understand that the carer has to be cared for as well. (Participant 12) It can be extremely frustrating and I think the frustration, that gets people. (Participant 8) I could understand people thinking along those lines. I mean it seems a desperate situation, but people become desperate I think, because they can’t see any light at the end of the tunnel. (Participant 10) Because the overload is just too great. It’s not like having a person with measles or something, because you know that they’re going to get better. But with dementia … you know they’re not going to get better, they’re going to get worse and the caring becomes such an overwhelming … not just the caring, it’s all the other issues, the financial issues, the emotional issues for you. (Participant 6)
Three carers said they could not understand other carers contemplating homicide. These carers felt that thoughts of homicide were an extreme reaction to the caregiving situation and demonstrated a lack of respect for the rights or desires of the person with dementia. Passive thoughts of death While denying active thoughts of homicide, four carers (all women) acknowledged passive death wishes for the person with dementia. Not necessarily killing, but wishing that she would get sick and die … sometimes I think I just wish she’d fall down the stairs, I do. We’ve just been on holidays and other family have been caring … and there was a bit of me that was like, well, if something terrible happens while we’re away, what a relief. (Participant 19) There have been times when we’ve had a bad night and I haven’t heard [him] in the morning and I think oh, hooray, it’s all over. (Participant 20)
These carers cited compassion, a sense of being trapped in the caregiving role, isolation, and the sheer absurdity of the experience as the factors that contributed to their thoughts. With me it was more compassion for him because I thought he wouldn’t want to live like this, not knowing what he was doing and especially when he was in the nursing home. I mean he had to have all his food pureed and I thought this is not the way you should go. You don’t deserve this. (Participant 9) We’re trapped … . Until she declines to a point that she’s got to go into care we are basically in a caring role. There’s no-one else to take it over. So it’d be a nice … swift exit. (Participant 19)
[Q: Do you think it’s understandable?] Oh hell yes I do … it is just the most debilitating, mind-crushing, hideous way to be, to live this life as a carer. (Participant 16)
I really think it’s the isolation of being a carer for someone with dementia, which is the big issue … Because of [the behavioural issues] you tend not to take them out and so … it’s very isolating. (Participant 20)
Two carers, despite understanding homicidal thoughts and acknowledging multiple precipitating factors associated with the caregiving role, ultimately felt that thoughts of homicide were the result of a deficient character or mental illness.
It’s just such an unreal situation that you’re in … You feel like Alice down the rabbit hole. Everything’s so curious and it gets curiouser and curiouser and there’s no answers. (Participant 20)
I could understand it, but you’d have to have some discrepancy in your own mind. Maybe you never faced life earlier yourself either and it’s an immaturity you’ve got yourself. I’m not sure. I mean I’m a great believer if you’ve got a hurdle, well, you’ve just got to … work out the best way you can get over it. (Participant 11) I can understand … where they’re coming from. In their mind it’s probably justifiable. It probably is, because I think we’ve all got our own lives to live and … you can’t walk in anyone else’s shoes … If it’s got to them as badly as that, well obviously it’s got to the stage where they can’t handle it. But why can’t they handle it? Is it a shortcoming with them, or what? I don’t know. (Participant 13)
Euthanasia When asked about killing the person with dementia, four carers (all women) couched their responses in terms of euthanasia. The comments were framed in terms of compassion, quality of life, dignity and respect; factors which these carers used to distinguish euthanasia from homicide. Two such examples are provided below. The way [that question is] worded is really scary because when you’re going through that process you don’t want your loved one to suffer, you don’t want them to go through the indignity and the pain and the anguish and everything and the horror that they’re going through. My
Aging & Mental Health view would be that euthanasia would be excellent in that situation. If you want to call that wanting to kill my mother, then that’s what it is. (Participant 7) Only if he was in a lot of pain and not getting quality of life. I do believe that people should continue to have quality of life and any illness, any reason, it’s something we’ve always talked about that if it was your pet you wouldn’t let them suffer. (Participant 21)
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Just the more it progressed the worse it got and the more she needed to not be here. It’s a waste of resources, it’s a waste of life, it’s a waste of so many things and you want to remember the person the way they were, functioning and happy and living a life, not laying vegetative in a bed like a vegetable. It’s horrible. It’s really horrible. (Participant 7)
Despite positively endorsing euthanasia, all four carers denied any homicidal intent and Participant 7 specifically stated that, despite her frustration at the lack of legal options, she would not have taken matters into her own hands. Yes, we would have talked about [euthanasia] often but, at the same time, the option wasn’t available so we would talk in frustration, euthanasia not being available, not how can we get around it and get rid of her ourselves, because that was never in our thought process. (Participant 7)
Homicidal thoughts in other caregiving situations Five carers reported thoughts or experiences of homicide in other caregiving situations either their own (with a different care recipient) or that of someone they knew. For four of the five carers there were clear, but distinct, motives for telling these stories. For Participant 15, it was about trying to understand her father’s experience. For Participants 6 and 8, it was about expressing their understanding of, and showing solidarity for, other carers; and, for Participant 19, it was about affirming the absence of homicidal thoughts in the current caregiving situation.
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of course he was in his 60s and apparently well, this is what we got from the media, of course he looked after her all his life … They sent him to prison which I thought was unfair, because I can understand a man looking after his mum for all those years and I can understand what he was going through. (Participant 6) I also cared for a guy with full-blown HIV and he was such a piece of human trash … I had got to the stage where I thought I could do this guy in. He used to have his Pethidine sent to him in the mail, so I’d get that 250ml bottle of Pethidine in the mail and I used to make fresh orange juice and I thought one day I could just pour this in there and he’d drink it and that’d be it … Yeah, so certainly I’ve been where other people have been. (Participant 8) I had many times wanted to push [my partner’s] father down the stairs and threatened to go and do it because he was a complete jerk … [My partner] used to see him and then she disappeared one day … He was being so difficult in his death and she disappeared and I had this terrible feeling she’d gone to the hospital and put a pillow over his face. So I just thought I’ve got to stay here and if she does it, she does it, and we’re going to deal with the consequences. I’m not going to interfere. Luckily she didn’t, which I was relieved about, but yeah. So I think we’ve probably thought those things and in the worst situation not acted on them, so I think we feel very confident that we wouldn’t act on them [in this situation], but wish. (Participant 19)
For Participant 1, however, the motive was less clear. Although she tried to distinguish thoughts of killing her mother (her previous care recipient) from thoughts of killing her husband (her current care recipient) by discussing the different nature of the relationships, the comments were in conflict with earlier statements about thoughts of homicide-suicide relating to her husband. There was a number of times I felt like getting the pillow and just putting it over Mum’s head … She was in such a bad, bad way … and I thought ‘this is not fair’. I wouldn’t have done it, but by heck I thought about it. I’ve never thought about it like that with [my husband] … I probably loved my mother so much. I love [my husband] but you love your mother in a different way. (Participant 1)
When we were in the UK [my Dad] came across an article in Britain, of a husband who had tried to kill his wife and himself because of her illness. It was, I believe, Alzheimer’s disease … My father cut the newspaper article out and kept it in his pocket … He approached my husband and sort of, when the two were alone, pulled it out and said have a look at this … It raised alarm bells for us … It seemed to resonate with him, the fact that he’d kept the article … [I had to] have a serious chat with him about the article, the content of it and what happened in this case. So I don’t know if he was thinking of killing himself and Mum, but the fact he had the newspaper article, you know, the fact he sort of clipped it out and kept it. I actually still have it. I had to go through Mum and Dad’s house [after they died] and, unbelievable, it was still there … He brought it back with him and kept it in one of his drawers. (Participant 15)
While addressing the question of homicide, four carers three men, one woman reported verbally or physically abusing the person for whom they were caring. For two of the men (Participants 2 and 3), who were caring for their wives, there was clear evidence of remorse.
We did have a tragic incident [in this part of the country] where an elderly gentleman was looking after his mother and she had dementia and he took her into our local National Park and hacked her to death … that was dreadful because he cared for her. She was in her late 80s and
I yelled at her. That’s the worst I ever got … I’m trying to help her, you know, it was one Saturday night there when she was there and she was obstreperous, as I call it, and I sort of had my hand on her shoulder and I said ‘oh for
Abuse
I gave her a clip over the ear once. I can remember she just turned around and snarled at me over something or other and I just reached out and gave her a bat over the side of her ear. It’s the only time I’ve ever hit her we’ve been married nearly 60 years. (Participant 2)
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Participant 13, however, who was caring for his brother, showed no remorse and his violence reflected a lack of understanding about the nature of dementia. While most participants in the study were able to distinguish between the disease and the person (e.g. ‘I’ve had times when I just really want to grab her and say “for Christ sake, just wake up to yourself” and “don’t do that.” But then you think hang on, this person doesn’t realise that she’s doing it anyway. It’s that bloody alien in her head that’s telling her to do that, not her. So you just back off.’), Participant 13 was not. I backhanded him, and then I turned it into a forehand. So I hit him low on the jaw, so it wasn’t all that hard. But I said, next time it’s going to be a punch and you know damned well how hard I can punch. That shook him … That was the best way I thought … to let him know that I wasn’t going to put up with his nonsense. That I expected to be treated with respect, same way as I’ve treated him with respect. That I wasn’t going to be lied to and that he couldn’t blame dementia for his irresponsible attitude … So I thought, well, bang, that’s it, bang, backwards and forwards … I’m convinced, even now, that is the right thing to do. The experts will tell me, oh you shouldn’t have done that, you shouldn’t have done that. You know, like hell. It had the desired effect. That was what I was wanting … . It’s just over and done with, but it’s given him a lesson. (Participant 13)
For the three men, physical or verbal abuse was the result of anger, frustration, and fatigue. It [was] anger or frustration on my part, yes. [My wife] was pretty angry too, but the one thing I learnt is there’s no point in having an argument, [there’s] only one person who’s going to be upset after an argument. (Participant 2) You get to the stage where your brain isn’t working properly because you’re so tired and I was probably living on adrenaline … Whilst I might go to bed at eight o’clock … I’d probably [only] cat nap and I’d be up an hour later and I’d go in and check that she was alright and subconsciously you do it and you just keep going and going and going. (Participant 3)
For the one female carer who reported abuse, however, violence was an unfortunate necessity and stemmed from a need to protect her grandchild when the person with dementia became aggressive. Sometimes I have to get between him and my grandson … For some reason he dislikes our grandson so much, it’s horrible because I overcompensate and sometimes I’ll have to physically push him away because [my husband] would hit [my grandson]. I have to physically get between them. (Participant 6)
All four carers were adamant that the abuse would not have led to, or ended in, homicide.
Disclosing thoughts of harm All but one of the carers who reported homicidal thoughts, passive death wishes, and physical or verbal abuse said they had never disclosed these thoughts and behaviours to others. Reasons for not disclosing included guilt, protecting the person with dementia, and a belief that these were private, personal matters. No, I was afraid to because, well, I couldn’t … well you can’t talk to your girlfriends about that, you can’t talk to your children about that, because everybody has their own take on how that would have happened … I was [also] keeping it to myself because I didn’t want anyone out there to know that he could have harmed me … I couldn’t tell my friends because they’d probably look at him a different way. I couldn’t tell my children because they’d think, oh that’s my dad, or something like that. So I kept it to myself. (Participant 18) [Q: Did you ever tell anyone about that?] No, I don’t think I did. [Q: Is there something that stopped you from being able to talk to someone?] I don’t feel like … well, I’ve got myself. I live my own life. I’ve got to live with me. Ultimately it’s with me. (Participant 13)
For the one carer who did disclose (Participant 3), sharing normalised the experience and allowed him to receive support and continue caring. Discussion To our knowledge, this is the first study to ask family carers about thoughts of homicide. Two of the 21 participants had actively contemplated homicide while caring for a person with dementia and, although the small sample makes it difficult to delineate any sort of risk profile for carers, the findings suggest that homicidal thoughts in carers are a real phenomenon that warrants further consideration in both research and practice. Although thoughts of homicide are not a guarantee of homicidal behaviour, the fact that carers are experiencing these thoughts is a cause for concern and, if we are to prevent the sort of homicide and homicidesuicide deaths that have already been reported in the literature, we must work to identify and support carers who are contemplating homicide (Salari, 2007). The findings also show how complex the issue of homicidal ideation is, not least because of the overlap with issues of euthanasia and abuse. Several participants discussed euthanasia when asked about homicide and this raises a number of interesting questions: If carers are proeuthanasia, but anti-homicide, is the issue one of capacity? Does their choice of words reflect a desire for a ‘hands-off’ approach to ending the life of the person with dementia, without any real consideration for who would be required to carry out the act? Or do they consider euthanasia and homicide to be qualitatively different concepts even though, at their core, they are both the ending of another person’s life? Are these actually veiled admissions of homicidal thoughts, made with the understanding that ‘euthanasia’ is the more socially acceptable term? Or are they simply the expression of a desire for a legal way to end human suffering and promote dignity in death?
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Aging & Mental Health The admission of passive death wishes by several carers, and physical or verbal abuse by others, also raises questions: Is there a continuum of homicidal thoughts and behaviours? Should we be concerned that these carers might contemplate or attempt homicide at a later date? A continuum of thoughts and behaviours is certainly advocated by some scholars in the suicide literature (Scocco & De Leo, 2002; Silverman, Berman, Sanddal, O’Carroll, & Joiner, 2007; Thomas, Crawford, Meltzer, & Lewis, 2002) and it would not be unreasonable to assume that, under the right circumstances, passive death wishes, proeuthanasia beliefs, or violence by carers could escalate to homicidal ideation and/or homicidal acts. While the evidence from completed homicides and homicide-suicides provides some anecdotal support for this theory (Karch & Nunn, 2011; Salari, 2007), without further research it is difficult to answer these questions with any certainty. What is clear, however, is that in clinical and community practice we need to be screening for homicidal thoughts in carers and providing appropriate support for those found to be at risk. While Eliason (2009) has noted that screening may result in a high number of false positives, he identifies carers as a high-risk group for whom screening should be encouraged. It is interesting to note that all reports of active homicidal thoughts and passive death wishes were from female carers. This is not consistent with the fact that the majority of homicides and homicide-suicides committed by older adults are perpetrated by men (Eliason, 2009; Overshott et al., 2012). It is possible that, as with suicide, women may report higher rates of homicidal ideation, whereas men have higher rates of completed homicide. Following that logic, screening for homicidal thoughts, and the provision of follow-up support, may need to be even more targeted for male carers, for whom waiting for a spontaneous admission of homicidal thoughts may be too late. Among carers who had not contemplated homicide, the majority felt these thoughts were understandable in others. There was no stigma among carers around issues of homicide and abuse, and carers were not offended by being asked about their thoughts. It is important, however, that when asking about homicidal ideation in clinical and community settings, we ask about it both with and without suicidal ideation (Eliason, 2009). In the case of Participant 1, it was difficult to determine whether thoughts of homicide or thoughts of suicide arose first. We should also screen for, and address, violence perpetrated by the person with dementia, which may put carers in the position of having to use deadly force to defend themselves or someone else. The ethical confines of this study, although necessary to ensure the safety of participants and their care recipients, may have been a limitation. It is possible that some carers did not disclose thoughts of homicide for fear of being hospitalised or having the person with dementia removed from their care. Only one carer declined to participate (on the grounds of being pro-euthanasia and not wanting her autonomy restricted) when the consent forms were distributed, but even carers who participated may have censored their responses. Future research, using anonymous, quantitative methods, may provide a more
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specific estimate of the rate of homicidal ideation in family carers of people with dementia. Quantitative studies with larger samples would also allow for a more systematic analysis of risk factors, including the influence of age, gender, and relationship to the care recipient. Although caring for a person with dementia is acknowledged to be more burdensome than caring for a person with a physical disability (Access Economics, 2009; Sorensen, Duberstein, Gill, & Pinquart, 2006), future research should also explore homicidal thoughts in other caregiving populations. There is evidence of homicides and homicide-suicides perpetrated by carers of people with disabilities and other terminal illnesses, but it is largely anecdotal, frequently based on media reports, and always conducted after the fact (e.g. Brown, 2012; Catlin, 2003; Cooke et al., 1998; Coorg & Tournay, 2013; Lucardie, 2005; Rock, 2000). Studies of homicidal ideation during the caregiving journey may be of more benefit in the development of prevention and intervention programmes. Research on homicidal ideation among carers in countries with different political, cultural, and economic systems would also be useful (e.g. de Boer, Droes, Jonker, Eefsting, & Hertogh, 2011; Ohrui, He, Tomita, & Sasaki, 2005). Although the diverse sample was a strength of the current study, all the participants were living in Australia, which provides specific (albeit limited) social support payments for carers, has not legalised euthanasia, and introduced strict gun control legislation following the Port Arthur Massacre in 1996. Finally, as the initial quote from Remarque foreshadowed, it is important that this work is not sensationalised and is used neither to condemn, nor to pardon, carers who contemplate or attempt homicide. Instead let it be a testimony to the fact that despite decades of research on caregiver burden (Hoffman & Mitchell, 2007) and endless political rhetoric about valuing carers, little has changed. Carers continue to provide a significant social service at great cost to their own health and well-being, and as a society we have a responsibility to support them. Acknowledgements Dr Siobhan O’Dwyer was supported by a Fellowship from the Dementia Collaborative Research Centres when this study was conducted and the first draft of this paper was written while Dr O’Dwyer was on a writing retreat. Dr O’Dwyer would like to thank Dr Sarah Pinto, Dr Sharon McDonough, and the State Library of Victoria for providing quiet writing space and intellectual support. The authors would like to acknowledge Candice Loopstra’s assistance in developing the interview protocol and preparing the risk assessment and risk response components of the protocol. Finally, and most importantly, the authors extend their thanks and respect to the carers who generously and bravely shared their experiences for this study.
Disclosure statement The authors declare that there are no financial interests or benefits arising from the application of this research.
Funding This work was supported by the Centre for Health Practice Innovation’s Early Career Research Mentored Grant Scheme.
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Note 1.
In a qualitative study of people with motor neurone disease and their carers, Whitehead, O’Brien, Jack, and Mitchell (2012) included one quote from a carer that clearly identified thoughts of homicide. Homicidal ideation was not the focus of the study, however, and there is no evidence that participants were systematically asked about thoughts of homicide.
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References Access Economics. (2009). Making choices: Future dementia care projects, problems and preferences. Canberra: Alzheimer’s Australia. Australian Bureau of Statistics. (2009). Disability, ageing and carers, Australia: Summary of findings (4430.0). Canberra: Author. Australian Psychological Society. (2004). Guidelines relating to suicidal clients. Retrieved from http://www.psychology.org. au/Assets/Files/EG-Suicidal.pdf Australian Psychological Society. (2005). Guidelines for working with people who pose a high risk of harm to others. Retrieved from http://www.psychology.org.au/Assets/Files/ EG-High-risk.pdf Australian Psychological Society. (2012). Guidelines on reporting abuse and neglect, and criminal activity. Retrieved from http://www.psychology.org.au/Assets/Files/EG-Reportingchild.pdf Bell, C.C., & McBride, D.F. (2010). Commentary: Homicidesuicide in older adults cultural and contextual perspectives. Journal of the American Academy of Psychiatry and the Law, 38, 312 317. Bourget, D., Gagne, P., & Whitehurst, L. (2010). Domestic homicide and homicide-suicide: The older offender. Journal of the American Academy of Psychiatry and the Law, 38(3), 305 311. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77 101. Brown, H. (2012). Not only a crime but a tragedy […] exploring the murder of adults with disabilities by their parents. The Journal of Adult Protection, 14(1), 6 21. Carers UK. (2012). Facts about carers, 2012: Policy briefing. London: Author. Retrieved from http://www.carersuk.org/ media/k2/attachments/FactsaboutcarersDec2012.pdf Catlin, A.J. (2003). Normalization, chronic sorrow, and murder: Highlighting the case of Carol Carr. Pediatric Nursing, 29 (4), 326 328. Cooke, M., Gourlay, L., Collette, L., Boccellari, A., Chesney, M.A., & Folkman, S. (1998). Informal caregivers and the intention to hasten AIDS-related death. Archives of Internal Medicine, 158, 69 75. Coorg, R., & Tournay, A. (2013). Filicide-suicide involving children with disabilities. Journal of Child Neurology, 28, 745 751. de Boer, M.E., Droes, R.M., Jonker, C., Eefsting, J.A., & Hertogh, C.M. (2011). Advance directives for euthanasia in dementia: How do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives. Journal of the American Geriatrics Society, 59(6), 989 996. Eliason, S. (2009). Murder-suicide: A review of the recent literature. Journal of the American Academy of Psychiatry and the Law, 37, 371 376. Hoffman, R.L., & Mitchell, A.M. (2007). Caregiver burden: Historical development. Nursing Forum, 33(4), 5 12.
Karch, D., & Nunn, K.C. (2011). Characteristics of elderly and other vulnerable adult victims of homicide by a caregiver: National Violent Death Reporting System, 17 US States, 2003 2007. Journal of Interpersonal Violence, 26, 137 157. Lucardie, R. (2005). Intrafamilial homicide of people with developmental disabilities. Developmental Disabilities Bulletin, 33(1/2), 129 153. Malphurs, J.E., & Cohen, D. (2005). A statewide case-control study of spousal homicide-suicide in older persons. American Journal of Geriatric Psychiatry, 13(3), 211 217. National Alliance for Caregiving. (2009). Caregiving in the U.S. 2009. Bethesda, MD: Author. Retrieved from http://www. caregiving.org/data/CaregivingintheUS2009fullreport.pdf O’Dwyer, S., Moyle, W., & Van Wyk, S. (2013). Suicidal ideation and resilience in family carers of people with dementia: A pilot qualitative study. Aging & Mental Health, 17(6), 753 760. O’Dwyer, S.T., Moyle, W., Pachana, N.A., Sung, B., & Barrett, S. (2014). Feeling that life is not worth living (death thoughts) among middle-aged, Australian women providing care. Maturitas, 77, 375 379. O’Dwyer, S.T., Moyle, W., Zimmer-Gembeck, M., & De Leo, D. (2013). Suicidal ideation in family carers of people with dementia: A pilot study. International Journal of Geriatric Psychiatry, 28(11), 1182 1188. O’Dwyer, S.T., Moyle, W., Zimmer-Gembeck, M. & De Leo, D. (2015). Suicidal ideation in family carers of people with dementia. Aging and Mental Health. DOI 10.1080/ 13607863.2015.1063109 Ohrui, T., He, M., Tomita, N., & Sasaki, H. (2005). Homicides of disabled older persons by their caregivers in Japan. Journal of the American Geriatrics Society, 53(3), 553 554. Overshott, R., Rodway, C., Roscoe, A., Flynn, S., Hunt, I.M., Swinson, N., … Shaw, J. (2012). Homicide perpetrated by older people. International Journal of Geriatric Psychiatry, 27, 1099 1105. Patton, M.Q. (2002). Qualitative research and evaluation methods (3rd ed.). Beverly Hills, CA: Sage. Rock, M. (2000). Discounted lives? Weighing disability when measuring health and ruling on ‘compassionate’ murder. Social Science and Medicine, 51, 407 417. Salari, S. (2007). Patterns of intimate partner homicide suicide in later life: Strategies for prevention. Clinical Interventions in Aging, 2(3), 441 452. Scocco, P., & De Leo, D. (2002). One-year prevalence of death thoughts, suicide ideation and behaviours in an elderly population. International Journal of Geriatric Psychiatry, 17, 842 846. Silverman, M.M., Berman, A.L., Sanddal, N.D., O’Carroll, P. W., & Joiner, T.E. (2007). Rebuilding the Tower of Babel: A revised nomenclature for the study of suicide and suicidal behaviors. Part 1: Background, rationale and methodology. Suicide and Life-Threatening Behavior, 37, 248 263. Sorensen, S., Duberstein, P., Gill, D., & Pinquart, M. (2006). Dementia care: Mental health effects, intervention strategies, and clinical implications. Lancet Neurology, 5, 961 973. Thomas, H.V., Crawford, M., Meltzer, H., & Lewis, G. (2002). Thinking life is not worth living: A population survey of Great Britain. Social Psychiatry and Psychiatric Epidemiology, 37, 351 356. Whitehead, B., O’Brien, M.R., Jack, B.A., & Mitchell, D. (2012). Experiences of dying, death and bereavement in motor neurone disease: A qualitative study. Palliative Medicine, 26, 368 378.
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20
Homicidal ideation in family carers of people with dementia Siobhan T. O'Dwyer, Wendy Moyle, Tara Taylor, Jennifer Creese & Melanie J. Zimmer-Gembeck To cite this article: Siobhan T. O'Dwyer, Wendy Moyle, Tara Taylor, Jennifer Creese & Melanie J. Zimmer-Gembeck (2015): Homicidal ideation in family carers of people with dementia, Aging & Mental Health, DOI: 10.1080/13607863.2015.1065793 To link to this article: http://dx.doi.org/10.1080/13607863.2015.1065793
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Date: 05 November 2015, At: 16:56
Aging & Mental Health, 2015 http://dx.doi.org/10.1080/13607863.2015.1065793
Homicidal ideation in family carers of people with dementia Siobhan T. O’Dwyera*, Wendy Moylea, Tara Taylora, Jennifer Creesea and Melanie J. Zimmer-Gembeckb a
Centre for Health Practice Innovation, Menzies Health Institute Queensland, Griffith University, Australia; bSchool of Applied Psychology, Griffith University, Gold Coast, Australia
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(Received 13 April 2015; accepted 17 June 2015) Objective: Family carers of people with dementia have higher than average rates of suicidal ideation, but there has been no research on homicidal ideation in this population. The aim of this study was to explore thoughts of homicide in family carers of people with dementia. Method: A descriptive qualitative approach was taken. Twenty-one Australian carers (7 men, 14 women) participated in individual, in-depth interviews and the transcripts were analysed thematically. Results: Seven themes were identified in the data active thoughts of homicide; understanding homicidal thoughts in others; passive thoughts of death; euthanasia; homicidal thoughts in other caregiving situations; abuse; and disclosing thoughts of harm. Two of the 21 participants had actively contemplated the homicide of their care recipient, four expressed a passive desire for the care recipient’s death, and four reported physically or verbally abusing the care recipient. Only one carer had previously disclosed these experiences. Conclusion: Homicidal ideation is a real and significant phenomenon among family carers of people with dementia. Service providers and health professionals are encouraged to identify and support carers contemplating homicide, but to do so in a way that recognises the broader social context of carer burden. Keywords: caregivers; dementia; homicide; euthanasia; abuse
This … is to be neither an accusation nor a confession, and least of all an adventure, for death is not an adventure of those who stand face to face with it. It will simply try to tell of a generation … who, even though they may have escaped the shells, were destroyed by the war. Erich Maria Remarque, All Quiet On The Western Front
Introduction Our previous research (O’Dwyer, Moyle, Zimmer-Gembeck & De Leo, 2015) revealed that one in six family carers of people with dementia have seriously contemplated suicide and one-fifth of those are likely to attempt suicide in the future. While conducting that research we received a note from an anonymous participant that said, ‘You’ve asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I was caring for.’ Naturally this raised some questions: Who was this carer? Had he or she contemplated killing the person with dementia? Had he or she attempted to kill the person with dementia? And, was this an isolated case? To our knowledge, there is no research on homicidal ideation among family carers of people with dementia or family carers more generally.1 Research on spousal homicide-suicides among older adults, however, has shown that up to 40% of perpetrators were providing care for a spouse with a long-term illness or disability (Malphurs & Cohen, 2005) and close to 10% of victims had dementia (Salari, 2007). *Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis
While homicide-suicides may be qualitatively different from homicides alone (Eliason, 2009), the majority of family carers are older adults (Australian Bureau of Statistics, 2009; Carers UK, 2012; National Alliance for Caregiving, 2009) and evidence suggests that (1) domestic homicides perpetrated by people over 65 are more likely to end in suicide than not (Bell & McBride, 2010; Bourget, Gagne, & Whitehurst, 2010; Eliason, 2009) and (2) more than 70% of older homicide-suicides have suicide as their primary motive (Salari, 2007). Taken together with the growing body of research on suicidal ideation in carers (O’Dwyer, Moyle, & Van Wyk, 2013; O’Dwyer, Moyle, Pachana, Sung, & Barrett, 2014; O’Dwyer, Moyle, Zimmer-Gembeck, & De Leo, 2013), and the note from our participant, this provides a clear imperative for research on homicidal ideation among carers. Although homicidal thoughts do not necessarily lead to homicidal acts, the absence of data on homicidal ideation during the caregiving journey is a considerable gap in the extant literature and may be hindering efforts to prevent deaths by homicide. The aim of this study was to explore carers’ thoughts of homicide, specifically their thoughts of ending the care recipient’s life. As the research was exploratory, a descriptive qualitative approach was taken. Methods Participants Sixty-one Australian carers from a large, cross-sectional survey of caregiver health and well-being (O’Dwyer,
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Moyle, Zimmer-Gembeck & De Leo, 2015) gave consent to be contacted for (and subsequently agreed to participate in) a follow-up interview. Participants in the original study were a convenience sample, recruited via newspaper advertising; promotion at community events and conferences; direct invitations via advocacy organisations and community and long-term care providers; social media; radio interviews; and word of mouth. Participants were eligible for the original study if they could read English and identified themselves as the primary provider of care for a family member, friend, or spouse with dementia who was either living in the community (home care, HC), was in longterm care (in care, IC), or had died within the past 2 years (bereaved, BD). Although carers were informed that the interview would contain questions about homicide, the current study was framed as a broad exploration of the caregiving experience and prospective participants were not made aware that homicidal ideation was a primary focus. To ensure a diverse, information-rich sample was included, maximum variation sampling (Patton, 2002) was used to select carers for interview. Gender, care type (HC, IC, BD), caring relationship (spouse, parent, sibling), location (urban, rural/remote), and cultural diversity (migrant; lesbian, gay, bisexual, or transgender (LGBT); indigenous) were the dimensions of variation used to select participants. On the basis of these factors, 21 participants were selected for interview. Procedure An interview protocol, including a semi-structured interview guide, was developed by SOD and WM, in consultation with a registered psychologist. To establish rapport, participants were asked to provide a brief overview of their caring experience at the beginning of the interview. The questions then focused on suicide, homicide, resilience, and support. The interview protocol also included risk assessment questions and a risk response plan for responding to a carer or person with dementia who was in imminent danger. The risk response plan was guided by the mandatory reporting requirements for psychologists in Queensland, Australia (Australian Psychological Society, 2004, 2005, 2012). The interviews were conducted one-on-one, by telephone, and by a registered psychologist. All interviews were digitally recorded and transcribed verbatim. The interviews ranged in length from 38 to 106 minutes. The University Human Research Ethics Committee approved the study and all participants provided signed, informed consent. This included consent to call emergency services if the interviewer considered the life of the carer or the person with dementia to be at imminent risk. All participants provided contact details for their general practitioner and next of kin, who could be notified and/or arrange emergency care for the person with dementia if required. As the interviews were conducted by telephone, all participants provided an address that could be given to emergency services if necessary. Before the interview, and again afterwards, all participants were provided with a list of telephone support
services for carers, including a 24-hour crisis line. The interviewer (TT) also debriefed with the lead author (SOD) immediately after each interview. SOD listened to each interview within 24 hours of it being conducted and made follow-up calls to monitor carer well-being or seek clarification as required. Analysis The thematic analysis followed the steps identified by Braun and Clarke (2006): data familiarisation through reading and re-reading the transcripts; generating initial codes in a systematic fashion across the whole data set; identifying themes within identified codes; reviewing themes for internal and external validity; and defining and naming themes. One member of the research team (JC), who had not been involved in developing the interview questions or conducting the interviews, conducted the initial analysis. After the initial analysis was complete, the codes and themes were reviewed and revised by a second researcher (SOD). The revised analysis was then discussed with a third researcher (WM), with discussion continuing between the researchers until consensus was reached. A note on nomenclature The term homicide and its variants (homicidal thoughts, homicidal ideation) have been used throughout this paper. This term is consistent with the language used in the contemporary literature; avoids the assumptions associated with terms such as murder and mercy killing; and distinguishes the thoughts/behaviours of lay people from those of medical professionals (e.g. assisted suicide, euthanasia). In the interview questions the term killing was used (i.e. Have you ever thought about killing [name]?). In three pilot interviews that were not included in the analysis, the term harming and the phrase ending the person’s life were used, but these terms confused participants and elicited responses related to medical euthanasia. For clarity, the term killing was used in all subsequent interviews. Results Participants The 21 participants ranged in age from 37 to 89 years (M D 67; SD D 14). Ten were caring at home, four had placed the person with dementia into long-term care, and seven were bereaved. The majority (n D 16) were spousal carers and five lived in rural/remote areas. Table 1 provides a description of each participant. Themes Seven themes were identified in the data: active thoughts of homicide; understanding homicidal thoughts in others; passive thoughts of death; euthanasia; homicidal thoughts in other caregiving situations; abuse; and disclosing thoughts of harm. The themes are discussed below, with representative data extracts provided to illustrate the themes.
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Table 1. Participant demographics.
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Participant Participant 1 Participant 2 Participant 3 Participant 4 Participant 5 Participant 6 Participant 7 Participant 8 Participant 9 Participant 10 Participant 11 Participant 12 Participant 13 Participant 14 Participant 15 Participant 16 Participant 17 Participant 18 Participant 19 Participant 20 Participant 21
Age
Gender
Care type
Person with dementia
62 83 83 73 85 72 56 60 69 74 76 59 75 89 37 72 48 60 52 64 50
F M M F M F F F F M M F M M F F F F F F F
IC IC BD BD BD HC BD HC BD HC HC IC HC BD BD HC HC IC HC HC HC
Husband Wife Wife Husband Wife Husband Mother Husband Husband Wife Wife Mother Brother Wife Mother Husband Husband Husband Mother-in-law Father Husband
Other
Migrant Migrant Migrant and Rural/remote Rural/remote Migrant and Rural/remote Rural/remote Rural/remote
LGBT
Notes: HC: caring at home; IC: person with dementia in long-term care; BD: bereaved; LGBT: lesbian, gay, bisexual, or transgender.
Active thoughts of homicide Two female, spousal carers (Participants 1 and 18) reported active homicidal thoughts while caring at home. For Participant 1, the thoughts were relatively frequent and resulted from physical and psychological fatigue and an unwillingness to place the person with dementia into residential care. I wasn’t thinking about doing myself in or him in every day … I might have thought about it once every six months or something, what’s a way out of this … You get to a point I suppose, you’re so drained, you’re so tired, you don’t want to let go of him, you don’t want to put him into a nursing home and you’re thinking now the best thing I could do for him is to bump him off and I’ll go with him and then we’ll go together. (Participant 1)
For Participant 1 these were clearly thoughts of homicide-suicide, rather than homicide alone, but her statements on which came first thoughts of homicide or thoughts of suicide were conflicting. Although Participant 1 denied any intention of acting on the thoughts, she had considered the merits of different methods and her choice was informed by the homicidesuicide deaths of people she had known. I never thought of overdosing [him] and overdosing myself. I think the best one I thought about was probably a gas pipe out of the car and gas the two of us, because friends of mine have actually done that. She was a very ill person. They were only in their fifties and they damn well … yeah, he put her in the car and they had a bottle of tablets and gassed themselves and bang. So I thought, well, that’s a pretty good way to go, actually. It went through my head, but well, I mean, lots of things go through your head, but I never got to the point where I was so depressed that I would have gone out and actually done it. (Participant 1)
Participant 1’s reasons for not acting on the thoughts included personal determination, the absence of additional stressors such as physical health problems, and a commitment to, and involvement in, activities outside of caring. Although the threat of jail was cited as a deterrent to homicide alone, it appears to have facilitated thoughts of homicide-suicide. Well, I wouldn’t have done it to him because I didn’t want to do time on his behalf … If I was to do it, I’d have had to top myself as well because I certainly wasn’t going to put myself behind bars for doing it to him. (Participant 1)
For Participant 18, thoughts of homicide were a ‘once off,’ did not include suicidal ideation, and were the logical end-point of a self-defence scenario in which she was threatened by the care recipient. I think if I hadn’t moved really quickly, that knife would have got me … it might not have been intentional, but it could have been in self-defence … So I mean, when [he] swiped that knife at me, I feel as though if he had come after me, I think I would have found a way to protect myself. I would have used, say, force if I had to … to protect myself. (Participant 18)
These thoughts were also the catalyst for placing the person with dementia into long-term care. That was … why I had to put him into permanent care. Even though it was for his safety, it was also for mine, because he started to get quite violent towards me … . That was the turning point … I’m afraid that if I go past my limit I might … it might not be nice. It might … I might … I don’t know, I think I might have done
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Understanding homicidal thoughts in others The majority of carers (13) who had not contemplated homicide understood how other carers could, and acknowledged a range of factors that could contribute to thoughts of homicide or homicide-suicide. These factors included compassion, frustration, a lack of support, and a sense that the caregiving role was never ending. Some exemplars are provided below.
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I can understand where people would think just put them out of their misery. Put them out of their misery and get me out of mine. (Participant 8) For some of them I think it could be they may believe that their loved one would be better off. For some of them it may be that they are at the end of their capacity to look after somebody else. It could be the lack of support that they’re getting, that they’re caring for their loved one but nobody is caring about them. A lot of people don’t understand that the carer has to be cared for as well. (Participant 12) It can be extremely frustrating and I think the frustration, that gets people. (Participant 8) I could understand people thinking along those lines. I mean it seems a desperate situation, but people become desperate I think, because they can’t see any light at the end of the tunnel. (Participant 10) Because the overload is just too great. It’s not like having a person with measles or something, because you know that they’re going to get better. But with dementia … you know they’re not going to get better, they’re going to get worse and the caring becomes such an overwhelming … not just the caring, it’s all the other issues, the financial issues, the emotional issues for you. (Participant 6)
Three carers said they could not understand other carers contemplating homicide. These carers felt that thoughts of homicide were an extreme reaction to the caregiving situation and demonstrated a lack of respect for the rights or desires of the person with dementia. Passive thoughts of death While denying active thoughts of homicide, four carers (all women) acknowledged passive death wishes for the person with dementia. Not necessarily killing, but wishing that she would get sick and die … sometimes I think I just wish she’d fall down the stairs, I do. We’ve just been on holidays and other family have been caring … and there was a bit of me that was like, well, if something terrible happens while we’re away, what a relief. (Participant 19) There have been times when we’ve had a bad night and I haven’t heard [him] in the morning and I think oh, hooray, it’s all over. (Participant 20)
These carers cited compassion, a sense of being trapped in the caregiving role, isolation, and the sheer absurdity of the experience as the factors that contributed to their thoughts. With me it was more compassion for him because I thought he wouldn’t want to live like this, not knowing what he was doing and especially when he was in the nursing home. I mean he had to have all his food pureed and I thought this is not the way you should go. You don’t deserve this. (Participant 9) We’re trapped … . Until she declines to a point that she’s got to go into care we are basically in a caring role. There’s no-one else to take it over. So it’d be a nice … swift exit. (Participant 19)
[Q: Do you think it’s understandable?] Oh hell yes I do … it is just the most debilitating, mind-crushing, hideous way to be, to live this life as a carer. (Participant 16)
I really think it’s the isolation of being a carer for someone with dementia, which is the big issue … Because of [the behavioural issues] you tend not to take them out and so … it’s very isolating. (Participant 20)
Two carers, despite understanding homicidal thoughts and acknowledging multiple precipitating factors associated with the caregiving role, ultimately felt that thoughts of homicide were the result of a deficient character or mental illness.
It’s just such an unreal situation that you’re in … You feel like Alice down the rabbit hole. Everything’s so curious and it gets curiouser and curiouser and there’s no answers. (Participant 20)
I could understand it, but you’d have to have some discrepancy in your own mind. Maybe you never faced life earlier yourself either and it’s an immaturity you’ve got yourself. I’m not sure. I mean I’m a great believer if you’ve got a hurdle, well, you’ve just got to … work out the best way you can get over it. (Participant 11) I can understand … where they’re coming from. In their mind it’s probably justifiable. It probably is, because I think we’ve all got our own lives to live and … you can’t walk in anyone else’s shoes … If it’s got to them as badly as that, well obviously it’s got to the stage where they can’t handle it. But why can’t they handle it? Is it a shortcoming with them, or what? I don’t know. (Participant 13)
Euthanasia When asked about killing the person with dementia, four carers (all women) couched their responses in terms of euthanasia. The comments were framed in terms of compassion, quality of life, dignity and respect; factors which these carers used to distinguish euthanasia from homicide. Two such examples are provided below. The way [that question is] worded is really scary because when you’re going through that process you don’t want your loved one to suffer, you don’t want them to go through the indignity and the pain and the anguish and everything and the horror that they’re going through. My
Aging & Mental Health view would be that euthanasia would be excellent in that situation. If you want to call that wanting to kill my mother, then that’s what it is. (Participant 7) Only if he was in a lot of pain and not getting quality of life. I do believe that people should continue to have quality of life and any illness, any reason, it’s something we’ve always talked about that if it was your pet you wouldn’t let them suffer. (Participant 21)
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Just the more it progressed the worse it got and the more she needed to not be here. It’s a waste of resources, it’s a waste of life, it’s a waste of so many things and you want to remember the person the way they were, functioning and happy and living a life, not laying vegetative in a bed like a vegetable. It’s horrible. It’s really horrible. (Participant 7)
Despite positively endorsing euthanasia, all four carers denied any homicidal intent and Participant 7 specifically stated that, despite her frustration at the lack of legal options, she would not have taken matters into her own hands. Yes, we would have talked about [euthanasia] often but, at the same time, the option wasn’t available so we would talk in frustration, euthanasia not being available, not how can we get around it and get rid of her ourselves, because that was never in our thought process. (Participant 7)
Homicidal thoughts in other caregiving situations Five carers reported thoughts or experiences of homicide in other caregiving situations either their own (with a different care recipient) or that of someone they knew. For four of the five carers there were clear, but distinct, motives for telling these stories. For Participant 15, it was about trying to understand her father’s experience. For Participants 6 and 8, it was about expressing their understanding of, and showing solidarity for, other carers; and, for Participant 19, it was about affirming the absence of homicidal thoughts in the current caregiving situation.
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of course he was in his 60s and apparently well, this is what we got from the media, of course he looked after her all his life … They sent him to prison which I thought was unfair, because I can understand a man looking after his mum for all those years and I can understand what he was going through. (Participant 6) I also cared for a guy with full-blown HIV and he was such a piece of human trash … I had got to the stage where I thought I could do this guy in. He used to have his Pethidine sent to him in the mail, so I’d get that 250ml bottle of Pethidine in the mail and I used to make fresh orange juice and I thought one day I could just pour this in there and he’d drink it and that’d be it … Yeah, so certainly I’ve been where other people have been. (Participant 8) I had many times wanted to push [my partner’s] father down the stairs and threatened to go and do it because he was a complete jerk … [My partner] used to see him and then she disappeared one day … He was being so difficult in his death and she disappeared and I had this terrible feeling she’d gone to the hospital and put a pillow over his face. So I just thought I’ve got to stay here and if she does it, she does it, and we’re going to deal with the consequences. I’m not going to interfere. Luckily she didn’t, which I was relieved about, but yeah. So I think we’ve probably thought those things and in the worst situation not acted on them, so I think we feel very confident that we wouldn’t act on them [in this situation], but wish. (Participant 19)
For Participant 1, however, the motive was less clear. Although she tried to distinguish thoughts of killing her mother (her previous care recipient) from thoughts of killing her husband (her current care recipient) by discussing the different nature of the relationships, the comments were in conflict with earlier statements about thoughts of homicide-suicide relating to her husband. There was a number of times I felt like getting the pillow and just putting it over Mum’s head … She was in such a bad, bad way … and I thought ‘this is not fair’. I wouldn’t have done it, but by heck I thought about it. I’ve never thought about it like that with [my husband] … I probably loved my mother so much. I love [my husband] but you love your mother in a different way. (Participant 1)
When we were in the UK [my Dad] came across an article in Britain, of a husband who had tried to kill his wife and himself because of her illness. It was, I believe, Alzheimer’s disease … My father cut the newspaper article out and kept it in his pocket … He approached my husband and sort of, when the two were alone, pulled it out and said have a look at this … It raised alarm bells for us … It seemed to resonate with him, the fact that he’d kept the article … [I had to] have a serious chat with him about the article, the content of it and what happened in this case. So I don’t know if he was thinking of killing himself and Mum, but the fact he had the newspaper article, you know, the fact he sort of clipped it out and kept it. I actually still have it. I had to go through Mum and Dad’s house [after they died] and, unbelievable, it was still there … He brought it back with him and kept it in one of his drawers. (Participant 15)
While addressing the question of homicide, four carers three men, one woman reported verbally or physically abusing the person for whom they were caring. For two of the men (Participants 2 and 3), who were caring for their wives, there was clear evidence of remorse.
We did have a tragic incident [in this part of the country] where an elderly gentleman was looking after his mother and she had dementia and he took her into our local National Park and hacked her to death … that was dreadful because he cared for her. She was in her late 80s and
I yelled at her. That’s the worst I ever got … I’m trying to help her, you know, it was one Saturday night there when she was there and she was obstreperous, as I call it, and I sort of had my hand on her shoulder and I said ‘oh for
Abuse
I gave her a clip over the ear once. I can remember she just turned around and snarled at me over something or other and I just reached out and gave her a bat over the side of her ear. It’s the only time I’ve ever hit her we’ve been married nearly 60 years. (Participant 2)
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S.T. O’Dwyer et al. God’s sake … bloody help me’. I said ‘stop being stupid’ and you forget yourself for that moment and that happened and I took control of myself … I was so physically and mentally tired, I think that’s the problem. (Participant 3)
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Participant 13, however, who was caring for his brother, showed no remorse and his violence reflected a lack of understanding about the nature of dementia. While most participants in the study were able to distinguish between the disease and the person (e.g. ‘I’ve had times when I just really want to grab her and say “for Christ sake, just wake up to yourself” and “don’t do that.” But then you think hang on, this person doesn’t realise that she’s doing it anyway. It’s that bloody alien in her head that’s telling her to do that, not her. So you just back off.’), Participant 13 was not. I backhanded him, and then I turned it into a forehand. So I hit him low on the jaw, so it wasn’t all that hard. But I said, next time it’s going to be a punch and you know damned well how hard I can punch. That shook him … That was the best way I thought … to let him know that I wasn’t going to put up with his nonsense. That I expected to be treated with respect, same way as I’ve treated him with respect. That I wasn’t going to be lied to and that he couldn’t blame dementia for his irresponsible attitude … So I thought, well, bang, that’s it, bang, backwards and forwards … I’m convinced, even now, that is the right thing to do. The experts will tell me, oh you shouldn’t have done that, you shouldn’t have done that. You know, like hell. It had the desired effect. That was what I was wanting … . It’s just over and done with, but it’s given him a lesson. (Participant 13)
For the three men, physical or verbal abuse was the result of anger, frustration, and fatigue. It [was] anger or frustration on my part, yes. [My wife] was pretty angry too, but the one thing I learnt is there’s no point in having an argument, [there’s] only one person who’s going to be upset after an argument. (Participant 2) You get to the stage where your brain isn’t working properly because you’re so tired and I was probably living on adrenaline … Whilst I might go to bed at eight o’clock … I’d probably [only] cat nap and I’d be up an hour later and I’d go in and check that she was alright and subconsciously you do it and you just keep going and going and going. (Participant 3)
For the one female carer who reported abuse, however, violence was an unfortunate necessity and stemmed from a need to protect her grandchild when the person with dementia became aggressive. Sometimes I have to get between him and my grandson … For some reason he dislikes our grandson so much, it’s horrible because I overcompensate and sometimes I’ll have to physically push him away because [my husband] would hit [my grandson]. I have to physically get between them. (Participant 6)
All four carers were adamant that the abuse would not have led to, or ended in, homicide.
Disclosing thoughts of harm All but one of the carers who reported homicidal thoughts, passive death wishes, and physical or verbal abuse said they had never disclosed these thoughts and behaviours to others. Reasons for not disclosing included guilt, protecting the person with dementia, and a belief that these were private, personal matters. No, I was afraid to because, well, I couldn’t … well you can’t talk to your girlfriends about that, you can’t talk to your children about that, because everybody has their own take on how that would have happened … I was [also] keeping it to myself because I didn’t want anyone out there to know that he could have harmed me … I couldn’t tell my friends because they’d probably look at him a different way. I couldn’t tell my children because they’d think, oh that’s my dad, or something like that. So I kept it to myself. (Participant 18) [Q: Did you ever tell anyone about that?] No, I don’t think I did. [Q: Is there something that stopped you from being able to talk to someone?] I don’t feel like … well, I’ve got myself. I live my own life. I’ve got to live with me. Ultimately it’s with me. (Participant 13)
For the one carer who did disclose (Participant 3), sharing normalised the experience and allowed him to receive support and continue caring. Discussion To our knowledge, this is the first study to ask family carers about thoughts of homicide. Two of the 21 participants had actively contemplated homicide while caring for a person with dementia and, although the small sample makes it difficult to delineate any sort of risk profile for carers, the findings suggest that homicidal thoughts in carers are a real phenomenon that warrants further consideration in both research and practice. Although thoughts of homicide are not a guarantee of homicidal behaviour, the fact that carers are experiencing these thoughts is a cause for concern and, if we are to prevent the sort of homicide and homicidesuicide deaths that have already been reported in the literature, we must work to identify and support carers who are contemplating homicide (Salari, 2007). The findings also show how complex the issue of homicidal ideation is, not least because of the overlap with issues of euthanasia and abuse. Several participants discussed euthanasia when asked about homicide and this raises a number of interesting questions: If carers are proeuthanasia, but anti-homicide, is the issue one of capacity? Does their choice of words reflect a desire for a ‘hands-off’ approach to ending the life of the person with dementia, without any real consideration for who would be required to carry out the act? Or do they consider euthanasia and homicide to be qualitatively different concepts even though, at their core, they are both the ending of another person’s life? Are these actually veiled admissions of homicidal thoughts, made with the understanding that ‘euthanasia’ is the more socially acceptable term? Or are they simply the expression of a desire for a legal way to end human suffering and promote dignity in death?
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Aging & Mental Health The admission of passive death wishes by several carers, and physical or verbal abuse by others, also raises questions: Is there a continuum of homicidal thoughts and behaviours? Should we be concerned that these carers might contemplate or attempt homicide at a later date? A continuum of thoughts and behaviours is certainly advocated by some scholars in the suicide literature (Scocco & De Leo, 2002; Silverman, Berman, Sanddal, O’Carroll, & Joiner, 2007; Thomas, Crawford, Meltzer, & Lewis, 2002) and it would not be unreasonable to assume that, under the right circumstances, passive death wishes, proeuthanasia beliefs, or violence by carers could escalate to homicidal ideation and/or homicidal acts. While the evidence from completed homicides and homicide-suicides provides some anecdotal support for this theory (Karch & Nunn, 2011; Salari, 2007), without further research it is difficult to answer these questions with any certainty. What is clear, however, is that in clinical and community practice we need to be screening for homicidal thoughts in carers and providing appropriate support for those found to be at risk. While Eliason (2009) has noted that screening may result in a high number of false positives, he identifies carers as a high-risk group for whom screening should be encouraged. It is interesting to note that all reports of active homicidal thoughts and passive death wishes were from female carers. This is not consistent with the fact that the majority of homicides and homicide-suicides committed by older adults are perpetrated by men (Eliason, 2009; Overshott et al., 2012). It is possible that, as with suicide, women may report higher rates of homicidal ideation, whereas men have higher rates of completed homicide. Following that logic, screening for homicidal thoughts, and the provision of follow-up support, may need to be even more targeted for male carers, for whom waiting for a spontaneous admission of homicidal thoughts may be too late. Among carers who had not contemplated homicide, the majority felt these thoughts were understandable in others. There was no stigma among carers around issues of homicide and abuse, and carers were not offended by being asked about their thoughts. It is important, however, that when asking about homicidal ideation in clinical and community settings, we ask about it both with and without suicidal ideation (Eliason, 2009). In the case of Participant 1, it was difficult to determine whether thoughts of homicide or thoughts of suicide arose first. We should also screen for, and address, violence perpetrated by the person with dementia, which may put carers in the position of having to use deadly force to defend themselves or someone else. The ethical confines of this study, although necessary to ensure the safety of participants and their care recipients, may have been a limitation. It is possible that some carers did not disclose thoughts of homicide for fear of being hospitalised or having the person with dementia removed from their care. Only one carer declined to participate (on the grounds of being pro-euthanasia and not wanting her autonomy restricted) when the consent forms were distributed, but even carers who participated may have censored their responses. Future research, using anonymous, quantitative methods, may provide a more
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specific estimate of the rate of homicidal ideation in family carers of people with dementia. Quantitative studies with larger samples would also allow for a more systematic analysis of risk factors, including the influence of age, gender, and relationship to the care recipient. Although caring for a person with dementia is acknowledged to be more burdensome than caring for a person with a physical disability (Access Economics, 2009; Sorensen, Duberstein, Gill, & Pinquart, 2006), future research should also explore homicidal thoughts in other caregiving populations. There is evidence of homicides and homicide-suicides perpetrated by carers of people with disabilities and other terminal illnesses, but it is largely anecdotal, frequently based on media reports, and always conducted after the fact (e.g. Brown, 2012; Catlin, 2003; Cooke et al., 1998; Coorg & Tournay, 2013; Lucardie, 2005; Rock, 2000). Studies of homicidal ideation during the caregiving journey may be of more benefit in the development of prevention and intervention programmes. Research on homicidal ideation among carers in countries with different political, cultural, and economic systems would also be useful (e.g. de Boer, Droes, Jonker, Eefsting, & Hertogh, 2011; Ohrui, He, Tomita, & Sasaki, 2005). Although the diverse sample was a strength of the current study, all the participants were living in Australia, which provides specific (albeit limited) social support payments for carers, has not legalised euthanasia, and introduced strict gun control legislation following the Port Arthur Massacre in 1996. Finally, as the initial quote from Remarque foreshadowed, it is important that this work is not sensationalised and is used neither to condemn, nor to pardon, carers who contemplate or attempt homicide. Instead let it be a testimony to the fact that despite decades of research on caregiver burden (Hoffman & Mitchell, 2007) and endless political rhetoric about valuing carers, little has changed. Carers continue to provide a significant social service at great cost to their own health and well-being, and as a society we have a responsibility to support them. Acknowledgements Dr Siobhan O’Dwyer was supported by a Fellowship from the Dementia Collaborative Research Centres when this study was conducted and the first draft of this paper was written while Dr O’Dwyer was on a writing retreat. Dr O’Dwyer would like to thank Dr Sarah Pinto, Dr Sharon McDonough, and the State Library of Victoria for providing quiet writing space and intellectual support. The authors would like to acknowledge Candice Loopstra’s assistance in developing the interview protocol and preparing the risk assessment and risk response components of the protocol. Finally, and most importantly, the authors extend their thanks and respect to the carers who generously and bravely shared their experiences for this study.
Disclosure statement The authors declare that there are no financial interests or benefits arising from the application of this research.
Funding This work was supported by the Centre for Health Practice Innovation’s Early Career Research Mentored Grant Scheme.
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Note 1.
In a qualitative study of people with motor neurone disease and their carers, Whitehead, O’Brien, Jack, and Mitchell (2012) included one quote from a carer that clearly identified thoughts of homicide. Homicidal ideation was not the focus of the study, however, and there is no evidence that participants were systematically asked about thoughts of homicide.
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