Aging & Mental Health
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20
Suicidal ideation in family carers of people with dementia Siobhan T. O'Dwyer, Wendy Moyle, Melanie Zimmer-Gembeck & Diego De Leo To cite this article: Siobhan T. O'Dwyer, Wendy Moyle, Melanie Zimmer-Gembeck & Diego De Leo (2015): Suicidal ideation in family carers of people with dementia, Aging & Mental Health, DOI: 10.1080/13607863.2015.1063109 To link to this article: http://dx.doi.org/10.1080/13607863.2015.1063109
View supplementary material
Published online: 10 Jul 2015.
Submit your article to this journal
Article views: 84
View related articles
View Crossmark data
Citing articles: 1 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=camh20 Download by: [Central Michigan University]
Date: 06 November 2015, At: 02:20
Aging & Mental Health, 2015 http://dx.doi.org/10.1080/13607863.2015.1063109
Suicidal ideation in family carers of people with dementia Siobhan T. O’Dwyera*, Wendy Moylea, Melanie Zimmer-Gembeckb and Diego De Leoc a
Centre for Health Practice Innovation, Menzies Health Institute Queensland, Griffith University, Brisbane, Australia; b School of Applied Psychology, Griffith University, Gold Coast, Australia; cAustralian Institute for Suicide Research and Prevention, Griffith University, Mt. Gravatt, Australia (Received 13 April 2015; accepted 13 June 2015)
Aging & Mental Health
Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors. Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, selfefficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support. Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression. Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers. Keywords: suicide; dementia; caregivers; mental health
Introduction More than 35 million people worldwide have dementia and the majority of them are cared for by a family member (Alzheimer’s Disease International, 2009). The combination of cognitive impairment and behavioral symptoms makes caring for a person with dementia more burdensome than caring for a person with a physical disability, and it has long been known that people caring for family members with dementia experience higher than average rates of physical and mental health problems (Pinquart & Sorensen, 2003; Sorensen, Duberstein, Gill, & Pinquart, 2006). Recent research also suggests they might be at greater risk of suicidal behavior. A survey of 120 Australian and American carers found one in four (26%) had contemplated suicide more than once in the previous year (O’Dwyer, Moyle, Zimmer-Gembeck, & De Leo, 2013), a rate more than eight times that of the general population (Centres for Disease Control and Prevention [CDC], 2011; Pirkis, Burgess, & Dunt, 2000). Although only half of the ‘suicidal’ carers had ever told someone they might die by suicide, one in three said they were likely to attempt suicide in the future (O’Dwyer, Moyle, et al., 2013). Carers who had contemplated suicide had poorer mental health, reacted more strongly to the behavioral symptoms of dementia, and were less satisfied with the social support they were receiving. They also had lower self-efficacy for service use and made greater use of dysfunctional coping strategies. In a multivariate model, however, depression
*Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis
was the only significant predictor of suicidal ideation (O’Dwyer, Moyle, et al., 2013). A qualitative study, based on in-depth interviews with nine Australian carers, supported these results, identifying pre-existing mental health problems, comorbid physical health conditions, and conflict with family or care staff as risk factors for suicidal thoughts in family carers who participated in in-depth interviews (O’Dwyer, Moyle, & Van Wyk, 2013). Despite the decades of research showing high rates of physical and mental health problems among dementia carers, these two studies were, to our knowledge, the first investigations of suicidal ideation in people caring for family members with dementia. Their results suggest that suicidal ideation is a significant issue in this population, but the sample sizes were small and the quantitative findings were limited to people caring for a community-dwelling person with dementia. There is a need to explore these preliminary findings in larger samples and to extend the research to family carers providing support for people with dementia living in long-term care and family carers who have been recently bereaved. The aim of this study was to explore the rate of suicidal ideation, and the factors that predict suicidal ideation, in a larger and more diverse sample of carers. As the research was exploratory, we did not seek to align the study with a particular theory of suicide or carer stress, choosing instead to examine a range of potential risk and protective factors that spanned physical, psychological, social, and demographic domains.
2
S.T. O’Dwyer et al.
Aging & Mental Health
Methods Recruitment The study was promoted as a research on the physical and emotional well-being of carers, in order to minimize any bias created by carers self-selecting into, or out of, a study about suicidal ideation (Olsen, 2008). Prospective participants were recruited via newspaper advertising; promotion at community events and conferences; direct invitations via advocacy organizations and community and long-term care providers; social media; Google Adwords (O’Dwyer & Moyle, 2014); radio interviews; and word of mouth. The variety of methods including online recruitment was a purposeful strategy designed to ensure a diverse sample of carers from different socioeconomic groups, both with and without relationships with service providers. Online recruitment has been found to be an efficient and cost-effective method that is suitable for a variety of population; is ideal for sensitive topics; facilitates access to a diverse range of participants (including the ‘hard to reach’); transcends geographic boundaries; and, when used as part of a diverse range of recruitment strategies, presents no greater risk of bias than traditional methods (Casler, Bickel, & Hackett, 2013; Morgan, Jorm, & Mackinnon, 2013; O’Connor, Jackson, Goldsmith, & Skirton, 2013; O’Dwyer & Moyle, 2014; Ryan, 2013; Yuan, Bare, Johnson, & Saberi, 2014). People were eligible to participate if they could read English and identified themselves as the primary carer for a person with dementia who was still living in the community (‘home care’, HC), the primary person providing support for a person with dementia living in long-term care (‘in care’, IC), or the primary carer for a person with dementia who had passed away in the previous two years (‘bereaved’, BD). Recruitment was conducted between February and December 2012. Participants recruited between February and April were part of a pilot study (O’Dwyer, Moyle, et al., 2013), but as there were no changes to the survey instrument after the pilot, those data have been included in this larger study. The survey was available for completion online or in hard copy. A ‘save and return later’ function was included in the online version, to minimize participant burden. Where appropriate, the wording of instructions and items was modified for IC and BD carers. The study was approved by the University Human Research Ethics Committee. All participants were fully informed about the study prior to participation (including the presence of questions about suicide) and completion of the survey was taken as consent. Where questions about suicide appeared, contact information was provided for telephone support and crisis lines. Measures The survey comprised the following self-report scales. The internal consistency of each scale was consistent with the original. The Revised Memory and Behavior Problems Checklist (Teri et al., 1992) is a 24-item measure of behavioral problems in the person with dementia and the carer’s
reaction to those problems. Two scores are created with higher scores reflecting, respectively, more frequent behaviors (RMBPC_Behavior) and more intense reactions (RMBPC_Reaction). The Fortinsky Caregiver Self-Efficacy Scale (Fortinsky, Kercher, & Burant, 2002) is a 10-item measure. Two scales are created self-efficacy for symptom management (SE_Symptoms) and self-efficacy for community support service use (SE_Service) with higher scores reflecting greater self-efficacy. This scale was not completed by BD carers. The Alzheimer’s Disease Knowledge Scale (DKS; Carpenter et al., 2009) contains 30 statements about risk factors, symptoms, and management of Alzheimer’s disease, each with a true/false response option. For this study, the term ‘Alzheimer’s disease’ in each statement was replaced with ‘dementia’. Higher scores indicate better knowledge. The SF-12 Health Survey Version 2 (Ware, Kosinski, Turner-Bowker, & Gandek, 2005) is a 12-item measure of health. For this study, only the Physical Health Component Summary Score (SF12_PCS) was calculated (using the algorithm recommended by Ware and colleagues). Higher scores indicate better health. The Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977) is a 20-item measure of depressive symptoms experienced in the previous week, with higher scores indicating more symptoms. The Beck Hopelessness Scale (BHS; Beck, Weissman, Lester, & Trexler, 1974) contains 20 statements about attitudes toward the future. Higher scores indicate greater levels of hopelessness. The Geriatric Anxiety Inventory (GAI; Pachana et al., 2007) is a 20-item measure of symptoms of anxiety in the previous week. Higher scores indicate more symptoms. The Life Orientation Test (LOT; Scheier & Carver, 1985) is a 12-item measure of dispositional optimism. Higher scores indicate greater optimism. The Zarit Burden Scale (ZBS; Zarit, Orr, & Zarit, 1985) is a 22-item measure of the sense of burden resulting from providing care. Higher scores indicate greater burden. The Brief COPE (Carver, 1997) is a 28-item measure of coping strategies. Three subscales are created emotion-focused (BCope_Emotion), problem-focused (BCope_Problem), and dysfunctional coping strategies (BCope_Dysfunctional) with higher scores indicating greater use of the relevant strategies. The Duke Social Support Index (Koenig et al., 1993) is a measure of social interactions and perceived support. For this study, the 11-item version from the Australian Longitudinal Study on Women’s Health was used (Pachana et al., 2008). Two scales are created with higher scores reflecting, respectively, a greater level of satisfaction with social support (DSSI_Satisfaction) and a greater level of social interaction (DSSI_Interaction). The Suicidal Behaviors Questionnaire-Revised (Osman et al., 2001) is a four-item measure of past suicidal thoughts and behaviors, and perceived likelihood of future suicidal behavior. Item 2 asks ‘How often have you
Aging & Mental Health
Aging & Mental Health
3
Missing data on the demographic variables were not imputed. As a result, there are small differences in the sample sizes for demographic variables data in Table 2.
thought about killing yourself in the past year?’, with response options of Never, Rarely (one time), Sometimes (two times), Often (three to four times), and Very Often (five or more times). For the purposes of this analysis, participants who responded Never or Rarely were classified as ‘non-suicidal’, whereas those who responded Sometimes, Often, or Very Often were classified as ‘suicidal’. Item 3 asks ‘Have you ever told someone that you were going to commit suicide, or that you might do it?’, with response options of ‘No’, ‘Yes, at one time, but I did not really want to die’, ‘Yes, at one time, and I really wanted to die’, ‘Yes, more than once, but I did not want to do it’, and ‘Yes, more than once, and I really wanted to do it’. Participants who selected any of the ‘Yes’ responses were classified as having disclosed suicidal intentions. Item 4 asks ‘How likely is it that you will attempt suicide someday?’, with response options of Never, No chance at all, Rather unlikely, Unlikely, Likely, Rather likely, and Very likely. Participants who responded Likely, Rather likely, or Very likely were classified as ‘likely to attempt’ with the remainder classified as ‘unlikely to attempt’. The cutoffs for suicidality, disclosure, and likelihood of an attempt were kept consistent with previous research (O’Dwyer, Moyle, et al., 2013), to allow for a direct comparison of findings. The Brief Reasons for Living Inventory (BRLI; Ivanoff, Jang, Smyth, & Linehan, 1994) is a 12-item measure of adaptive, life-maintaining attitudes and beliefs. Each item is rated according to how important it would be if the participants were contemplating suicide. Higher scores reflect greater endorsement of reasons for living. A range of demographic and care-related information was also collected, including age, sex, education, income, employment status, relationship status, spirituality, area living, relationship to the person with dementia, time spent caring, and government financial support.
After data screening and imputation, there were 566 complete cases: 352 HC (62%), 141 IC (25%), and 73 BD (13%). The majority of surveys (n D 368) were completed online. Participant demographics are in Table 1. To summarize briefly, the majority were female (n D 477), just over half (n D 306) were the spouse of the person with dementia, the average age was 63 years, and the average time spent caring was six years. This is consistent with the demographic profile of the caregiving population (Alzheimer’s Disease International, 2009). The majority of participants were from Australia and North America.
Data screening
Suicidality
All data were entered into SPSS Version 21. Data entry was double-checked for a randomly selected 20% of cases and the entire data-set was screened for missing and implausible values. Cases were deemed to have excessive rates of missing data if more than three entire scales were incomplete (equivalent to approximately 20% of the survey). There were 137 cases with excessive rates of missing data and, for those cases, the number of incomplete scales ranged from 4 to 13 (M D 11). After removal of these cases, there was less than 3% missing data on all the scales.
Sixteen percent of carers were classified as suicidal (n D 91). There was no significant difference between caregiver groups in the proportion classified as suicidal (16.5% HC, 16.3% IC, 13.7% BD), x2(2) D .354, p D .838. Consequently, the remaining analyses were conducted with the whole sample. Of those who were classified as suicidal, approximately half (n D 46) had disclosed suicidal intentions and nearly one-fifth (n D 17) were likely to attempt suicide in the future.
Analysis Frequencies and descriptive analyses were run on all scales and demographic data to inspect the distribution of responses and check for outliers. Descriptive analyses were conducted for participant demographics, the number of participants contemplating suicide, the number reporting suicidal intentions to others, and the number likely to attempt suicide in the future. Independent t-tests and Chisquare tests were used to identify the differences between suicidal and non-suicidal carers on the main scales and demographic variables. Where significant differences were identified, variables were included in a forced entry, logistic regression with suicidal ideation (suicidal, nonsuicidal) as the dependent variable. All analyses were considered significant at p < .01.
Results Sample
Univariate analyses Imputation Due to the small amount of missing data, expectationmaximisation (EM) imputation was used to replace the missing values on the main scales. The imputation process resulted in a handful of extreme values that were recoded to the nearest legitimate value for the given scale. All imputed values were also rounded to the nearest legitimate value, to allow for accurate scale creation.
Univariate analyses identified a number of differences between suicidal and non-suicidal carers (see Tables 2 and 3). Suicidal carers were younger and reported more difficulty managing on their income. They also reported more behavioral symptoms in the person with dementia and stronger reactions to those symptoms. They had lower self-efficacy for service use, reported less social interaction, were less satisfied with the social support they were receiving, and reported greater use of dysfunctional
4
S.T. O’Dwyer et al.
Table 1. Participant demographics.
Aging & Mental Health
Variable Age (years) Time spent caring (years) Gender Male Female Educational qualifications Less than high school High school only Post-high school Income management Easy Difficult Impossible Employment status Full-time Part-time or casual Not employed Marital status Partnered Not partnered Spirituality Religious or spiritual Not religious or spiritual Country of residence Australia USA or Canada England, Ireland, Scotland, or Wales Other Location Urban Regional Rural/remote Relationship to person with dementia Spouse Son/son-in-law Daughter/daughter-in-law Other Government support Receiving financial support Not receiving financial support
M (SD)
N
62.93 (11.47) 6.10 (4.75) 119 447 122 81 361 113 144 309 86 77 398 417 149 398 165 465 80 18 3 305 156 102 306 25 191 28 320 219
coping strategies. They also had higher levels of burden, depression, anxiety, and hopelessness; lower levels of optimism; and fewer reasons for living.
Multivariate analyses Variables that were significantly different between groups at the univariate level were entered as predictors in a forced entry, logistic regression, with suicidal ideation (suicidal, non-suicidal) as the dependent variable. The Income variable had three categories and so was dummy coded prior to inclusion. The regression was run first with HC and IC participants only, because BD participants did not complete the self-efficacy scales. Self-efficacy was
not a significant predictor in the model, so the regression was run again with all participants and without the selfefficacy variable. The results of the second regression are reported. There were no bivariate correlations above 0.80 (see Supplementary Table 1) and collinearity diagnostic checks showed no variance inflation factors above 10 or tolerances below 0.1. Cook’s distance and DFBeta values were all below 1. Approximately 3% of cases had higher than expected leverage and standardized residual values, but an inspection of cases revealed no reason to exclude cases. The model was significant (x2(14) D 142.05, p D .000), with an overall correct classification percentage of 87.5%. Age, depression, and reasons for living were the only significant predictors (see Table 4). The results indicate that as depression scores increase, so do the odds of contemplating suicide (exp b D 1.06, 95% CI D 1.01, 1.10). As reasons for living increase, the odds of contemplating suicide decrease (exp b D .48, 95% CI D .36, .64). As age increases, the odds of contemplating suicide decrease (exp b D .96, 95% CI D .94, .99). To explore the possibility that depression might be a mediator for suicidal ideation, post hoc analyses for mediation were conducted. Bivariate correlations between depression and the psychosocial variables on which there were significant univariate differences between suicidal and non-suicidal carers, were inspected. Seven variables were significantly correlated with depression and had a Pearson’s r greater than 0.3 GAI, BHS, LOT, ZBS, BCope_Dysfunctional, RMBPC_Reaction, and DSSI_Satisfaction. Of those, three variables reflected potentially modifiable attitudes or behaviors (dysfunctional coping, reactions to the behavioral symptoms of dementia, and satisfaction with social support) and so were selected as predictors. As recommended by Hayes (2013), three separate mediation models were run, each with one of the three variables as the predictor and the other two as covariates. The other variables (GAI, BHS, LOT, and ZBS) were also added as covariates to eliminate the impact of confounding or epiphenomenal association (Hayes, 2013). The models were run using Hayes’ PROCESS macro for SPSS (Version 2.10), which allows for dichotomous outcome variables. Bias-corrected bootstrap confidence intervals, with 10,000 samples, were used to evaluate the effects and a common seed value was set to ensure that the same bootstrap samples were used in each analysis (Hayes, 2013). Dysfunctional coping and satisfaction with social support both had significant indirect effects on suicidal ideation via depression (see Table 5). Greater use of dysfunctional coping strategies and less satisfaction with social support were associated with suicidal ideation via increased depressive symptoms. Discussion In this study, one in six carers had contemplated suicide more than once in the previous 12 months and one-fifth of those said they were likely to attempt suicide in the future. These rates are slightly lower than those reported in earlier work (O’Dwyer, Moyle, et al., 2013), but still more
Aging & Mental Health
5
Table 2. Differences between suicidal and non-suicidal caregivers on demographic variables.
Continuous measures
Non-suicidal (n D 475) M (SD)
Suicidal (n D 91) M (SD)
t (df)
p
95% CIa
64.14 (11.33) 6.10 (4.60)
56.60 (10.08) 5.99 (5.47)
5.91 (564) 0.19 (564)
.00 .85
5.03, 10.04 ¡0.96, 1.17
n
n
x2 (df)
p
105 370
14 77
2.08 (1)
.15
107 75 291
15 6 70
8.72 (2)
.01
71 123 281
42 21 28
48.76 (2)
.00
65 66 339
21 11 59
5.04 (2)
.08
120 355
29 62
1.72 (1)
.19
139 333
26 65
0.03 (1)
.87
262 132 79
43 24 23
4.12 (2)
.13
264 20 155 24
42 5 36 4
2.70 (3)
.44
178 275
41 45
2.11 (1)
.15
Age (years) Time spent caring (years)
Aging & Mental Health
Categorical measures Sex Male Female Education Less than high school High school only Tertiary Income management Always difficult Sometimes difficult Never difficult Employment Full-time Part-time Not employed Relationship status Unpartnered Partnered Spirituality Not spiritual/religious Spiritual/religious Living Area Urban Regional Rural Relationship to person with dementia Spouse Son/son-in-law Daughter/daughter-in-law Other Government financial support Not receiving Receiving a
Confidence interval of the mean difference.
than four times the annual rate of suicidal ideation in American and Australian adults (CDC, 2011; Pirkis et al., 2000) and exactly four times the rate reported in a population study of non-dementia carers in the UK (Stansfield et al., 2014). This confirms that suicidal ideation is indeed a significant phenomenon among family carers of people with dementia. The large sample size, the range of recruitment strategies, and the diverse sample are strengths of the current study and the findings have implications for future research and practice. The consistent rate of suicidal ideation across people caring at home (HC), people supporting a person with dementia in long-term care (IC), and bereaved carers (BD) was unexpected. Previous research on dementia carers has found that health problems and distress can increase in response to transitions in the caring role (Haley et al.,
2008; Nikzad-Terhune, Anderson, Newcomer, & Gaugler, 2010), and Rosengard and Folkman’s (1997) study of homosexual men caring for spouses with AIDS found higher rates of suicidal ideation in bereaved carers than in those whose care recipient was still alive. This discrepancy may be explained by differences in the carers’ proximity to transition in each study i.e. carers closer to or further from a role transition may experience high or lower rates of ideation or by differences in the disease progression, care needs, and social context of AIDS and dementia. It is also possible that even if the rate of suicidal ideation is consistent across stages in the dementia context, the factors that predict suicidal ideation may differ for HC, IC, and BD carers. While it was not within the scope of this paper to explore that, anecdotal evidence from carers in our research suggests poor quality long-term care, conflict with
6
S.T. O’Dwyer et al.
Table 3. Differences between suicidal and non-suicidal caregivers on measures of psychosocial well-being. Non-suicidal (n D 475) M (SD)
Suicidal (n D 91) M (SD)
RMBPC_Behavior
63.84 (15.52)
71.54 (15.73)
¡4.33 (564)
.00
RMBPC_Reaction
54.66 (17.45)
63.11 (17.51)
¡4.23 (564)
.00
SE_Symptoms
29.18 (11.74)
25.90 (11.90)
2.29 (491)a
.02
SE_Service
21.17 (10.19)
16.59 (10.14)
3.69 (491)a
.00
DKS
23.95 (3.37)
24.92 (2.95)
¡2.58 (564)
.01
CES-D
19.24 (7.89)
27.04 (8.87)
¡8.47 (564)
.00
GAI
6.72 (6.04)
11.03 (6.05)
¡6.23 (564)
.00
BHS
5.89 (5.01)
10.05 (6.29)
¡5.96b (112.96)
.00
LOT
20.30 (5.71)
15.87 (6.46)
ZBS
42.09 (15.37)
52.24 (14.66)
BCope_Emotion
23.89 (5.36)
BCope_Problem
Measures
t (df)
p
95% CIc ¡11.20, ¡4.21 ¡12.38, ¡4.53 0.47, 6.09 2.14, 7.01
6.64 (564)
.00
¡5.82 (564)
.00
23.07 (5.04)
1.36 (564)
.18
16.51 (4.46)
16.42 (4.23)
.19 (564)
.85
BCope_Dysfunctional
19.65 (5.08)
22.69 (5.64)
¡5.13 (564)
.00
DSSI_Satisfaction
15.44 (2.80)
13.55 (3.62)
DSSI_Interaction
8.12 (1.88)
¡1.72, ¡0.23 ¡9.62, ¡6.00 ¡5.67, ¡2.95 ¡5.54, ¡2.78
Aging & Mental Health
3.12, 5.75
4.72b (111.51)
.00
6.86 (1.82)
5.88 (564)
.00
47.34 (12.32)
45.20 (11.66)
1.53 (564)
.13
4.27 (.96)
3.42 (.97)
7.75 (564)
.00
¡13.58, ¡6.72 ¡0.37, 2.02 ¡0.90, 1.09 ¡4.20, ¡1.88 1.23, 2.55 0.84, 1.68
SF12_PCS BRLI
¡0.61, 4.88 0.64, 1.07
For these analyses, n D 412 (suicidal) and n D 81 (non-suicidal) as BD participants did not complete these scales. Equal variances not assumed. Confidence interval of the mean difference. RMBPC_Behavior D Revised Memory and Behavior Problems Checklist (Behaviors); RMBPC_Reaction D Revised Memory and Behavior Problems Checklist (Reactions); SE_Symptoms D Fortinsky Caregiver Self-Efficacy Scale (Symptom Management); SE_Service D Fortinsky Caregiver Self-Efficacy Scale (Community Support Service Use); DKS D Alzheimer’s Disease Knowledge Scale; SF12_PCS D SF-12 Health Survey (Physical Health Component Summary Score); CES-D D Centre for Epidemiologic Studies Depression Scale; BHS D Beck Hopelessness Scale; GAI D Geriatric Anxiety Inventory; LOT D Life Orientation Test; ZBS D Zarit Burden Scale. BCope_Emotion D Brief COPE (Emotion-Focused Coping); BCope_Problem D Brief COPE (Problem-Focused Coping); BCope_Dysfunctional D Brief COPE (Dysfunctional Coping); DSSI_Satisfaction D Duke Social Support Inventory (Satisfaction with Social Support); DSSI_Interaction D Duke Social Support Inventory (Interactions); BRLI D Brief Reasons for Living Inventory.
a
b c
family or care staff, and the loss of role may be some of the factors that contribute to suicidal ideation in IC and BD carers. Regardless, the current findings highlight the importance, for future research and practice, of focusing not only on those providing care in the community, but also those who have placed the person with dementia into long-term care or been recently bereaved. Despite a number of significant differences between suicidal and non-suicidal carers at the univariate level, only age, depression, and reasons for living were significant predictors in a multivariate model. A positive association between depression and suicidal ideation, and a negative association between reasons for living and suicidal ideation, is consistent with previous research
(McLean et al., 2008; O’Dwyer, Moyle, et al., 2013). Interventions designed to reduce depression and increase reasons for living may reduce suicidal ideation in family carers. While the current findings show an inverse relationship between age and the risk of suicidal ideation, this should be interpreted with caution. Older adults have the highest rates of suicide in developed countries and the lowest ratio of attempts to deaths (Bertolote & De Leo, 2012; De Leo et al., 2001). So, while young carers may be more likely to contemplate suicide, older carers should not be ignored in efforts to reduce suicide-related thoughts and behaviors in family carers. The absence of any significant risk or protective factors specifically associated with the caring role (e.g.
Aging & Mental Health Table 4. Outcomes of a logistic regression predicting suicidal ideation. Predictors
Aging & Mental Health
Age Income_1a Income_2b RMBPC_Behavior RMBPC_Reaction CESD GAI BHS LOT ZBS BCope_Dysfunctional DSSI_Satisfaction DSSI_Interaction BRLI Constant
b (SE)
df
exp b
95% CIc
¡0.04 (0.01) ¡0.82 (0.34) ¡0.05 (0.36) 0.02 (0.01) ¡0.002 (0.01) 0.05 (0.02) ¡0.001 (0.03) 0.05 (0.04) 0.01 (0.04) 0.01 (0.01) 0.03 (0.03) 0.02 (0.05) ¡0.11 (0.09) ¡0.73 (0.15) 1.22 (1.57)
1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
0.96 0.44 0.95 1.02 1.00 1.06 1.00 1.05 1.01 1.01 1.03 1.02 0.90 0.48 3.40
0.94, 0.99 0.23, 0.87 0.47, 1.91 0.99, 1.04 0.98, 1.02 1.01, 1.10 0.94, 1.06 0.98, 1.13 0.94, 1.08 0.98, 1.03 0.97, 1.09 0.92, 1.12 0.76, 1.07 0.36, 0.64
Data in bold indicate significant predictors. Model x2(14) D 142.05, p D .000; Hosmer & Lemeshow x2(8) D 3.08, p D .93; Nagelkerke R2 D .38. a Dummy coded to compare Always Difficult with Sometimes and Never Difficult. b Dummy coded to compare Sometimes Difficult with Always and Never Difficult. c Confidence interval for exp b. RMBPC_Behavior D Revised Memory and Behavior Problems Checklist (Behaviors); RMBPC_Reaction D Revised Memory and Behavior Problems Checklist (Reactions); CES-D D Centre for Epidemiologic Studies Depression Scale; BHS D Beck Hopelessness Scale; GAI D Geriatric Anxiety Inventory; LOT D Life Orientation Test; ZBS D Zarit Burden Scale; BCope_Dysfunctional D Brief COPE (Dysfunctional Coping); DSSI_Satisfaction D Duke Social Support Inventory (Satisfaction with Social Support); DSSI_Interaction D Duke Social Support Inventory (Interactions); BRLI D Brief Reasons for Living Inventory.
burden, reactions to the behavioral symptoms of dementia, or self-efficacy for service use) is inconsistent with previous qualitative research, in which some carers described suicide as a reprieve from the demands of caring and identified increasing care demands and carerelated conflict with family or service providers as risk factors for suicidal ideation (O’Dwyer, Moyle, & Van Wyk 2013). Interpersonal conflict was not measured in the current study and should be a focus of future research, along with longitudinal methods that might capture changes in care demands and suicidality over time. The post hoc analyses revealed that dysfunctional coping and satisfaction with social support had indirect
7
effects on suicidal ideation via depression. This supports the idea that depression, rather than being the sole explanation for suicidal ideation in carers, might be mediating the relationship between suicidal ideation and other markers of psychosocial well-being (O’Dwyer, Moyle, et al., 2013). Although causality cannot be inferred from cross-sectional data, interventions that seek to reduce depression in carers might do well to target carers’ coping strategies and attitudes toward social support. The absence of data on suicide attempts is a limitation of this study. Although the Suicidal Behaviors Questionnaire (Osman et al., 2001) includes an item about previous attempts, it focuses on any attempts in the respondent’s lifetime. Attempting to create a temporal connection between these experiences and the caregiving role would have been problematic and so that data were not included in the analysis. Given the high rate of suicidal ideation identified in family carers of people with dementia in this study, an exploration of suicide attempts and deaths by suicide in future research is recommended. To our knowledge, there is no evidence on suicide attempts or deaths by suicide in this population and, although suicidal ideation does not necessarily lead to a suicidal act, in the absence of this information, the current study provides the most compelling evidence of suicide risk in family carers of people with dementia. Future research should also explore differences in suicidality between male and female carers, and spouse and adult child carers, which were beyond the scope of this paper. Although this study focused specifically on family carers of people with dementia, there is scope to extend research on suicidality to other caring populations. Only three studies have explored suicidal ideation in nondementia carers one with men caring for male partners with HIV in America (Rosengard & Folkman, 1997), one with female carers in Australia (O’Dwyer et al., 2014), and one with carers in the United Kingdom (Stansfield et al., 2014) and neither O’Dwyer et al. (2014) nor Stansfield et al. (2014) provided information on the disease or disability of the care recipient. Research that explores the prevalence of suicide-related thoughts and behaviors in people caring for family members with discrete illnesses and disabilities (where the demographic profile of the carers or the nature of the caring role may differ) would help to clarify whether caring for a person with dementia presents an additional risk for suicide and contribute to
Table 5. Outcome of mediational analyses with suicidal ideation as an outcome and depression as a mediator. Direct effect Independent variable BCope_Dysfunctionala RMBPC_Reactionb DSSI_Satisfactionc
Indirect effect
B (SE)
95% CI
B (SE)
95% CI
0.01 (0.03) 0.01 (0.01) ¡0.06 (0.04)
¡0.04, 0.07 ¡0.01, 0.02 ¡0.15, 0.02
0.02 (0.01) 0.002 (0.002) ¡0.02 (0.01)
0.004, 0.03 ¡0.001, 0.01 ¡0.05, ¡0.01
Data in bold indicate significant effects. a Controlling for RMBPC_Reaction, DSSI_Satisfaction, GAI, BHS, LOT and ZBS. b Controlling for BCope_Dysfunctional, DSSI_Satisfaction, GAI, BHS, LOT, and ZBS. c Controlling for BCope_Dysfunctional, RMBPC_Reaction, GAI, BHS, LOT, and ZBS. RMBPC_Reaction D Revised Memory and Behavior Problems Checklist (Reactions); BCope_Dysfunctional D Brief COPE (Dysfunctional Coping); DSSI_Satisfaction D Duke Social Support Inventory (Satisfaction with Social Support).
Aging & Mental Health
8
S.T. O’Dwyer et al.
the small but growing body of literature on suicidality in family carers more generally. Future research might also seek to examine how the findings from this and other research on suicidality in carers aligns with existing theories of suicide and carer stress, or whether the development of a theory unique to carers is warranted. Although this study was promoted (for recruitment purposes) as research on the well-being of carers, all participants were informed about the presence of questions on suicidality prior to completing the survey. It is possible that carers selected into, or out of, the study on the basis of that information, leading to an over- or underestimate of the rate of suicidal ideation in this study. The inclusion of items on caring and suicidality in population surveys would help to confirm the current findings and minimize sampling bias. This is only the second quantitative study ever to explore suicidal ideation in family carers of people with dementia. Moreover, this study includes a larger and more diverse sample than was included in previous research. The high rate of suicidal ideation and the likelihood of future attempts mark family carers of people with dementia as a high-risk group for death by suicide, and this risk does not appear to be diminished by the death or institutionalization of the care recipient. Interventions to reduce suicide-related thoughts and behaviors in people caring for family members with dementia should focus on reducing depression and increasing reasons for living. Acknowledgements Dr Siobhan O’Dwyer was supported by a Fellowship from the Dementia Collaborative Research Centres when this study was conducted. The authors wish to thank the carers who gave up their time to complete the survey; the community organizations, advocacy services, and individuals who assisted with recruitment; Sarah Walbank (Carers Queensland) and the Consumer Advisory Panel for their assistance in the development of the survey instrument; Rod Lea and Nathaniel Herr for early statistical advice; and Andrew Hayes for advice on the use of the PROCESS macro.
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 a Griffith University New Researcher Grant.
Supplemental data Supplemental data for this article can be accessed at http://dx. doi.org/10.1080/13607863.2015.1063109
References Alzheimer’s Disease International. (2009). World Alzheimer report 2009. London: Alzheimer’s Disease International. Beck, A.T., Weissman, A., Lester, D., & Trexler, L. (1974). The measurement of pessimism: The Hopelessness Scale. Journal of Consulting and Clinical Psychology, 42, 861 863.
Bertolote, J.M. & De Leo, D. (2012). Global suicide mortality rates a light at the end of the tunnel? Crisis, 33, 249 253. Carpenter, B.D., Balsis, S., Otilingam, P.G., Hanson, P.K., & Gatz, M. (2009). The Alzheimer’s Disease Knowledge Scale: Development and psychometric properties. The Gerontologist, 49, 236 247. Carver, C.S. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4, 92 100. Casler, K., Bickel, L., & Hackett, E. (2013). Separate but equal? A comparison of participants and data gathered via Amazon’s MTurk, social media, and face-to-face behavioural testing. Computers in Human Behavior, 29(6), 2156 2160. Centres for Disease Control and Prevention. (2011). Suicidal thoughts and behaviors among adults aged 18 years United States, 2008 2009. Morbidity and Mortality Weekly Reports, 60 (SS13), 1 22. De Leo, D., Padoani, W., Scocco, P., Lie, D., Bille-Brahe, U., Arensman, E., … Wasserman, D. (2001). Attempted and completed suicide in older subjects: Results from the WHO/ EURO multicentre study of suicidal behaviour. International Journal of Geriatric Psychiatry, 16, 300 310. Fortinsky, R.H., Kercher, K., & Burant, C.J. (2002). Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging and Mental Health, 6, 153 160. Haley, W.E., Bergman, E.J., Roth, D.L., McVie, T., Gaugler, J. E., & Mittelman, M.S. (2008). Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms. The Gerontologist, 48, 732 740. Hayes, A.F. (2013). Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Press. Ivanoff, A., Jang, S.J., Smyth, N.J., & Linehan, M.M. (1994). Fewer reasons for staying alive when you are thinking of killing yourself: The Brief Reasons for Living Inventory. Journal of Psychopathology and Behavioral Assessment, 16, 1 13. Koenig, H.G., Westlund, R.E., George, L.K., Hughes, D.C., Blazer, D.G., & Hybels, C. (1993). Abbreviating the Duke Social Support Index for use in chronically ill elderly individuals. Psychosomatics, 34, 61 69. McLean, J., Maxwell, M., Platt, S., Harris, F., & Jepson, R. (2008). Risk and protective factors for suicide and suicidal behaviour: A literature review. Scotland: Scottish Government Social Research. Morgan, A.J., Jorm, A.F. & Mackinnon, A.J. (2013). Internetbased recruitment to a depression prevention intervention: Lessons from the Mood Memos study. Journal of Medical Internet Research, 15(2), e31. Nikzad-Terhune, K.A., Anderson, K.A., Newcomer, R., & Gaugler, J.E. (2010). Do trajectories of at-home dementia caregiving account for burden after nursing home placement? A growth curve analysis. Social Work in Health Care, 49, 734 752. O’Connor, A., Jackson, L., Goldsmith, L. & Skirton, H. (2013). Can I get a retweet please? Health research recruitment and the Twittersphere. Journal of Advanced Nursing, 70(3), 599 609. O’Dwyer, S.T. & Moyle, W. (2014). Using Google Adwords to recruit family carers of people with dementia. Australasian Journal on Ageing, 33, 128 131. 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., & Van Wyk, S. (2013b). Suicidal ideation and resilience in family carers of people with dementia: A pilot qualitative study. Aging and Mental Health, 17, 753 760. 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, 1182 1188.
Aging & Mental Health
Aging & Mental Health
Olsen, R. (2008). Self-selection bias. In P.J. Lavrakas (Ed.), Encyclopedia of survey research methods (pp. 809 811). Thousand Oaks, CA: Sage Publications. Osman, A., Bagge, C.L., Gutierrez, P.A., Konick, L.C., Kopper, B.A., & Barrios, F.X. (2001). The Suicidal Behaviors Questionnaire-Revised (SBQ-R): Validation with clinical and nonclinical samples. Assessment, 8, 443 454. Pachana, N.A., Byrne, G.J., Siddle, H., Koloski, N., Harley, E., & Arnold, E. (2007). Development and validation of the Geriatric Anxiety Inventory. International Psychogeriatrics, 19, 103 114. Pachana, N.A., Smith, N., Watson, M., McLaughlin, D., & Dobson, A. (2008). Responsiveness of the Duke Social Support sub-scales in older women. Age and Ageing, 37, 666 672. Pinquart, M. & Sorensen, S. (2003). Differences between carers and noncarers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250 267. Pirkis, J., Burgess, P., & Dunt, D. (2000). Suicidal ideation and suicide attempts among Australian adults. Crisis, 21, 16 25. Radloff, L.S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385 401. Rosengard, C., & Folkman, S. (1997). Suicidal ideation, bereavement, HIV serostatus and psychosocial variables in partners of men with AIDS. AIDS Care, 9, 373 384. Ryan, G. (2013). Online social networks for patient involvement and recruitment in clinical research. Nurse Researcher, 21 (1), 35 39.
9
Scheier, M.F., & Carver, C.S. (1985). Optimism, coping and health: Assessment and implications of generalized outcome expectancies. Health Psychology, 4, 219 247. Sorensen, S., Duberstein, P., Gill, D., & Pinquart, M. (2006). Dementia care: Mental health effects, intervention strategies, and clinical implications. Lancet Neurology, 5, 961 973. Stansfield, S., Smuk, M., Unwumere, J., Clarke, C., Pike, C., McManus, S., … Bebbington, P. (2014). Stressors and common mental disorders in informal carers: An analysis of the English Adult Psychiatric Morbidity Survey 2007. Social Science and Medicine, 120, 190 198. Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P.P. (1992). Assessment of behavioural problems in dementia: The Revised Memory and Behavior Problems Checklist. Psychology and Aging, 7, 622 631. Ware, J.E., Kosinski, M., Turner-Bowker, D.M., & Gandek, B. (2005). How to score version 2 of the SF-12 Health Survey. Lincoln, RI: QualityMetric Incorporated. Yuan, P., Bare, M.G., Johnson, M.O., & Saberi, P. (2014). Using online social media for recruitment of human immunodeficiency virus-positive participants: A cross-sectional survey. Journal of Medical Internet Research, 16(5), e117. Zarit, S.H., Orr, N.K., & Zarit, J.M. (1985). The hidden victims of Alzheimer’s disease: Families under stress. New York: New York University Press.
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20
Suicidal ideation in family carers of people with dementia Siobhan T. O'Dwyer, Wendy Moyle, Melanie Zimmer-Gembeck & Diego De Leo To cite this article: Siobhan T. O'Dwyer, Wendy Moyle, Melanie Zimmer-Gembeck & Diego De Leo (2015): Suicidal ideation in family carers of people with dementia, Aging & Mental Health, DOI: 10.1080/13607863.2015.1063109 To link to this article: http://dx.doi.org/10.1080/13607863.2015.1063109
View supplementary material
Published online: 10 Jul 2015.
Submit your article to this journal
Article views: 84
View related articles
View Crossmark data
Citing articles: 1 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=camh20 Download by: [Central Michigan University]
Date: 06 November 2015, At: 02:20
Aging & Mental Health, 2015 http://dx.doi.org/10.1080/13607863.2015.1063109
Suicidal ideation in family carers of people with dementia Siobhan T. O’Dwyera*, Wendy Moylea, Melanie Zimmer-Gembeckb and Diego De Leoc a
Centre for Health Practice Innovation, Menzies Health Institute Queensland, Griffith University, Brisbane, Australia; b School of Applied Psychology, Griffith University, Gold Coast, Australia; cAustralian Institute for Suicide Research and Prevention, Griffith University, Mt. Gravatt, Australia (Received 13 April 2015; accepted 13 June 2015)
Aging & Mental Health
Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors. Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, selfefficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support. Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression. Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers. Keywords: suicide; dementia; caregivers; mental health
Introduction More than 35 million people worldwide have dementia and the majority of them are cared for by a family member (Alzheimer’s Disease International, 2009). The combination of cognitive impairment and behavioral symptoms makes caring for a person with dementia more burdensome than caring for a person with a physical disability, and it has long been known that people caring for family members with dementia experience higher than average rates of physical and mental health problems (Pinquart & Sorensen, 2003; Sorensen, Duberstein, Gill, & Pinquart, 2006). Recent research also suggests they might be at greater risk of suicidal behavior. A survey of 120 Australian and American carers found one in four (26%) had contemplated suicide more than once in the previous year (O’Dwyer, Moyle, Zimmer-Gembeck, & De Leo, 2013), a rate more than eight times that of the general population (Centres for Disease Control and Prevention [CDC], 2011; Pirkis, Burgess, & Dunt, 2000). Although only half of the ‘suicidal’ carers had ever told someone they might die by suicide, one in three said they were likely to attempt suicide in the future (O’Dwyer, Moyle, et al., 2013). Carers who had contemplated suicide had poorer mental health, reacted more strongly to the behavioral symptoms of dementia, and were less satisfied with the social support they were receiving. They also had lower self-efficacy for service use and made greater use of dysfunctional coping strategies. In a multivariate model, however, depression
*Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis
was the only significant predictor of suicidal ideation (O’Dwyer, Moyle, et al., 2013). A qualitative study, based on in-depth interviews with nine Australian carers, supported these results, identifying pre-existing mental health problems, comorbid physical health conditions, and conflict with family or care staff as risk factors for suicidal thoughts in family carers who participated in in-depth interviews (O’Dwyer, Moyle, & Van Wyk, 2013). Despite the decades of research showing high rates of physical and mental health problems among dementia carers, these two studies were, to our knowledge, the first investigations of suicidal ideation in people caring for family members with dementia. Their results suggest that suicidal ideation is a significant issue in this population, but the sample sizes were small and the quantitative findings were limited to people caring for a community-dwelling person with dementia. There is a need to explore these preliminary findings in larger samples and to extend the research to family carers providing support for people with dementia living in long-term care and family carers who have been recently bereaved. The aim of this study was to explore the rate of suicidal ideation, and the factors that predict suicidal ideation, in a larger and more diverse sample of carers. As the research was exploratory, we did not seek to align the study with a particular theory of suicide or carer stress, choosing instead to examine a range of potential risk and protective factors that spanned physical, psychological, social, and demographic domains.
2
S.T. O’Dwyer et al.
Aging & Mental Health
Methods Recruitment The study was promoted as a research on the physical and emotional well-being of carers, in order to minimize any bias created by carers self-selecting into, or out of, a study about suicidal ideation (Olsen, 2008). Prospective participants were recruited via newspaper advertising; promotion at community events and conferences; direct invitations via advocacy organizations and community and long-term care providers; social media; Google Adwords (O’Dwyer & Moyle, 2014); radio interviews; and word of mouth. The variety of methods including online recruitment was a purposeful strategy designed to ensure a diverse sample of carers from different socioeconomic groups, both with and without relationships with service providers. Online recruitment has been found to be an efficient and cost-effective method that is suitable for a variety of population; is ideal for sensitive topics; facilitates access to a diverse range of participants (including the ‘hard to reach’); transcends geographic boundaries; and, when used as part of a diverse range of recruitment strategies, presents no greater risk of bias than traditional methods (Casler, Bickel, & Hackett, 2013; Morgan, Jorm, & Mackinnon, 2013; O’Connor, Jackson, Goldsmith, & Skirton, 2013; O’Dwyer & Moyle, 2014; Ryan, 2013; Yuan, Bare, Johnson, & Saberi, 2014). People were eligible to participate if they could read English and identified themselves as the primary carer for a person with dementia who was still living in the community (‘home care’, HC), the primary person providing support for a person with dementia living in long-term care (‘in care’, IC), or the primary carer for a person with dementia who had passed away in the previous two years (‘bereaved’, BD). Recruitment was conducted between February and December 2012. Participants recruited between February and April were part of a pilot study (O’Dwyer, Moyle, et al., 2013), but as there were no changes to the survey instrument after the pilot, those data have been included in this larger study. The survey was available for completion online or in hard copy. A ‘save and return later’ function was included in the online version, to minimize participant burden. Where appropriate, the wording of instructions and items was modified for IC and BD carers. The study was approved by the University Human Research Ethics Committee. All participants were fully informed about the study prior to participation (including the presence of questions about suicide) and completion of the survey was taken as consent. Where questions about suicide appeared, contact information was provided for telephone support and crisis lines. Measures The survey comprised the following self-report scales. The internal consistency of each scale was consistent with the original. The Revised Memory and Behavior Problems Checklist (Teri et al., 1992) is a 24-item measure of behavioral problems in the person with dementia and the carer’s
reaction to those problems. Two scores are created with higher scores reflecting, respectively, more frequent behaviors (RMBPC_Behavior) and more intense reactions (RMBPC_Reaction). The Fortinsky Caregiver Self-Efficacy Scale (Fortinsky, Kercher, & Burant, 2002) is a 10-item measure. Two scales are created self-efficacy for symptom management (SE_Symptoms) and self-efficacy for community support service use (SE_Service) with higher scores reflecting greater self-efficacy. This scale was not completed by BD carers. The Alzheimer’s Disease Knowledge Scale (DKS; Carpenter et al., 2009) contains 30 statements about risk factors, symptoms, and management of Alzheimer’s disease, each with a true/false response option. For this study, the term ‘Alzheimer’s disease’ in each statement was replaced with ‘dementia’. Higher scores indicate better knowledge. The SF-12 Health Survey Version 2 (Ware, Kosinski, Turner-Bowker, & Gandek, 2005) is a 12-item measure of health. For this study, only the Physical Health Component Summary Score (SF12_PCS) was calculated (using the algorithm recommended by Ware and colleagues). Higher scores indicate better health. The Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977) is a 20-item measure of depressive symptoms experienced in the previous week, with higher scores indicating more symptoms. The Beck Hopelessness Scale (BHS; Beck, Weissman, Lester, & Trexler, 1974) contains 20 statements about attitudes toward the future. Higher scores indicate greater levels of hopelessness. The Geriatric Anxiety Inventory (GAI; Pachana et al., 2007) is a 20-item measure of symptoms of anxiety in the previous week. Higher scores indicate more symptoms. The Life Orientation Test (LOT; Scheier & Carver, 1985) is a 12-item measure of dispositional optimism. Higher scores indicate greater optimism. The Zarit Burden Scale (ZBS; Zarit, Orr, & Zarit, 1985) is a 22-item measure of the sense of burden resulting from providing care. Higher scores indicate greater burden. The Brief COPE (Carver, 1997) is a 28-item measure of coping strategies. Three subscales are created emotion-focused (BCope_Emotion), problem-focused (BCope_Problem), and dysfunctional coping strategies (BCope_Dysfunctional) with higher scores indicating greater use of the relevant strategies. The Duke Social Support Index (Koenig et al., 1993) is a measure of social interactions and perceived support. For this study, the 11-item version from the Australian Longitudinal Study on Women’s Health was used (Pachana et al., 2008). Two scales are created with higher scores reflecting, respectively, a greater level of satisfaction with social support (DSSI_Satisfaction) and a greater level of social interaction (DSSI_Interaction). The Suicidal Behaviors Questionnaire-Revised (Osman et al., 2001) is a four-item measure of past suicidal thoughts and behaviors, and perceived likelihood of future suicidal behavior. Item 2 asks ‘How often have you
Aging & Mental Health
Aging & Mental Health
3
Missing data on the demographic variables were not imputed. As a result, there are small differences in the sample sizes for demographic variables data in Table 2.
thought about killing yourself in the past year?’, with response options of Never, Rarely (one time), Sometimes (two times), Often (three to four times), and Very Often (five or more times). For the purposes of this analysis, participants who responded Never or Rarely were classified as ‘non-suicidal’, whereas those who responded Sometimes, Often, or Very Often were classified as ‘suicidal’. Item 3 asks ‘Have you ever told someone that you were going to commit suicide, or that you might do it?’, with response options of ‘No’, ‘Yes, at one time, but I did not really want to die’, ‘Yes, at one time, and I really wanted to die’, ‘Yes, more than once, but I did not want to do it’, and ‘Yes, more than once, and I really wanted to do it’. Participants who selected any of the ‘Yes’ responses were classified as having disclosed suicidal intentions. Item 4 asks ‘How likely is it that you will attempt suicide someday?’, with response options of Never, No chance at all, Rather unlikely, Unlikely, Likely, Rather likely, and Very likely. Participants who responded Likely, Rather likely, or Very likely were classified as ‘likely to attempt’ with the remainder classified as ‘unlikely to attempt’. The cutoffs for suicidality, disclosure, and likelihood of an attempt were kept consistent with previous research (O’Dwyer, Moyle, et al., 2013), to allow for a direct comparison of findings. The Brief Reasons for Living Inventory (BRLI; Ivanoff, Jang, Smyth, & Linehan, 1994) is a 12-item measure of adaptive, life-maintaining attitudes and beliefs. Each item is rated according to how important it would be if the participants were contemplating suicide. Higher scores reflect greater endorsement of reasons for living. A range of demographic and care-related information was also collected, including age, sex, education, income, employment status, relationship status, spirituality, area living, relationship to the person with dementia, time spent caring, and government financial support.
After data screening and imputation, there were 566 complete cases: 352 HC (62%), 141 IC (25%), and 73 BD (13%). The majority of surveys (n D 368) were completed online. Participant demographics are in Table 1. To summarize briefly, the majority were female (n D 477), just over half (n D 306) were the spouse of the person with dementia, the average age was 63 years, and the average time spent caring was six years. This is consistent with the demographic profile of the caregiving population (Alzheimer’s Disease International, 2009). The majority of participants were from Australia and North America.
Data screening
Suicidality
All data were entered into SPSS Version 21. Data entry was double-checked for a randomly selected 20% of cases and the entire data-set was screened for missing and implausible values. Cases were deemed to have excessive rates of missing data if more than three entire scales were incomplete (equivalent to approximately 20% of the survey). There were 137 cases with excessive rates of missing data and, for those cases, the number of incomplete scales ranged from 4 to 13 (M D 11). After removal of these cases, there was less than 3% missing data on all the scales.
Sixteen percent of carers were classified as suicidal (n D 91). There was no significant difference between caregiver groups in the proportion classified as suicidal (16.5% HC, 16.3% IC, 13.7% BD), x2(2) D .354, p D .838. Consequently, the remaining analyses were conducted with the whole sample. Of those who were classified as suicidal, approximately half (n D 46) had disclosed suicidal intentions and nearly one-fifth (n D 17) were likely to attempt suicide in the future.
Analysis Frequencies and descriptive analyses were run on all scales and demographic data to inspect the distribution of responses and check for outliers. Descriptive analyses were conducted for participant demographics, the number of participants contemplating suicide, the number reporting suicidal intentions to others, and the number likely to attempt suicide in the future. Independent t-tests and Chisquare tests were used to identify the differences between suicidal and non-suicidal carers on the main scales and demographic variables. Where significant differences were identified, variables were included in a forced entry, logistic regression with suicidal ideation (suicidal, nonsuicidal) as the dependent variable. All analyses were considered significant at p < .01.
Results Sample
Univariate analyses Imputation Due to the small amount of missing data, expectationmaximisation (EM) imputation was used to replace the missing values on the main scales. The imputation process resulted in a handful of extreme values that were recoded to the nearest legitimate value for the given scale. All imputed values were also rounded to the nearest legitimate value, to allow for accurate scale creation.
Univariate analyses identified a number of differences between suicidal and non-suicidal carers (see Tables 2 and 3). Suicidal carers were younger and reported more difficulty managing on their income. They also reported more behavioral symptoms in the person with dementia and stronger reactions to those symptoms. They had lower self-efficacy for service use, reported less social interaction, were less satisfied with the social support they were receiving, and reported greater use of dysfunctional
4
S.T. O’Dwyer et al.
Table 1. Participant demographics.
Aging & Mental Health
Variable Age (years) Time spent caring (years) Gender Male Female Educational qualifications Less than high school High school only Post-high school Income management Easy Difficult Impossible Employment status Full-time Part-time or casual Not employed Marital status Partnered Not partnered Spirituality Religious or spiritual Not religious or spiritual Country of residence Australia USA or Canada England, Ireland, Scotland, or Wales Other Location Urban Regional Rural/remote Relationship to person with dementia Spouse Son/son-in-law Daughter/daughter-in-law Other Government support Receiving financial support Not receiving financial support
M (SD)
N
62.93 (11.47) 6.10 (4.75) 119 447 122 81 361 113 144 309 86 77 398 417 149 398 165 465 80 18 3 305 156 102 306 25 191 28 320 219
coping strategies. They also had higher levels of burden, depression, anxiety, and hopelessness; lower levels of optimism; and fewer reasons for living.
Multivariate analyses Variables that were significantly different between groups at the univariate level were entered as predictors in a forced entry, logistic regression, with suicidal ideation (suicidal, non-suicidal) as the dependent variable. The Income variable had three categories and so was dummy coded prior to inclusion. The regression was run first with HC and IC participants only, because BD participants did not complete the self-efficacy scales. Self-efficacy was
not a significant predictor in the model, so the regression was run again with all participants and without the selfefficacy variable. The results of the second regression are reported. There were no bivariate correlations above 0.80 (see Supplementary Table 1) and collinearity diagnostic checks showed no variance inflation factors above 10 or tolerances below 0.1. Cook’s distance and DFBeta values were all below 1. Approximately 3% of cases had higher than expected leverage and standardized residual values, but an inspection of cases revealed no reason to exclude cases. The model was significant (x2(14) D 142.05, p D .000), with an overall correct classification percentage of 87.5%. Age, depression, and reasons for living were the only significant predictors (see Table 4). The results indicate that as depression scores increase, so do the odds of contemplating suicide (exp b D 1.06, 95% CI D 1.01, 1.10). As reasons for living increase, the odds of contemplating suicide decrease (exp b D .48, 95% CI D .36, .64). As age increases, the odds of contemplating suicide decrease (exp b D .96, 95% CI D .94, .99). To explore the possibility that depression might be a mediator for suicidal ideation, post hoc analyses for mediation were conducted. Bivariate correlations between depression and the psychosocial variables on which there were significant univariate differences between suicidal and non-suicidal carers, were inspected. Seven variables were significantly correlated with depression and had a Pearson’s r greater than 0.3 GAI, BHS, LOT, ZBS, BCope_Dysfunctional, RMBPC_Reaction, and DSSI_Satisfaction. Of those, three variables reflected potentially modifiable attitudes or behaviors (dysfunctional coping, reactions to the behavioral symptoms of dementia, and satisfaction with social support) and so were selected as predictors. As recommended by Hayes (2013), three separate mediation models were run, each with one of the three variables as the predictor and the other two as covariates. The other variables (GAI, BHS, LOT, and ZBS) were also added as covariates to eliminate the impact of confounding or epiphenomenal association (Hayes, 2013). The models were run using Hayes’ PROCESS macro for SPSS (Version 2.10), which allows for dichotomous outcome variables. Bias-corrected bootstrap confidence intervals, with 10,000 samples, were used to evaluate the effects and a common seed value was set to ensure that the same bootstrap samples were used in each analysis (Hayes, 2013). Dysfunctional coping and satisfaction with social support both had significant indirect effects on suicidal ideation via depression (see Table 5). Greater use of dysfunctional coping strategies and less satisfaction with social support were associated with suicidal ideation via increased depressive symptoms. Discussion In this study, one in six carers had contemplated suicide more than once in the previous 12 months and one-fifth of those said they were likely to attempt suicide in the future. These rates are slightly lower than those reported in earlier work (O’Dwyer, Moyle, et al., 2013), but still more
Aging & Mental Health
5
Table 2. Differences between suicidal and non-suicidal caregivers on demographic variables.
Continuous measures
Non-suicidal (n D 475) M (SD)
Suicidal (n D 91) M (SD)
t (df)
p
95% CIa
64.14 (11.33) 6.10 (4.60)
56.60 (10.08) 5.99 (5.47)
5.91 (564) 0.19 (564)
.00 .85
5.03, 10.04 ¡0.96, 1.17
n
n
x2 (df)
p
105 370
14 77
2.08 (1)
.15
107 75 291
15 6 70
8.72 (2)
.01
71 123 281
42 21 28
48.76 (2)
.00
65 66 339
21 11 59
5.04 (2)
.08
120 355
29 62
1.72 (1)
.19
139 333
26 65
0.03 (1)
.87
262 132 79
43 24 23
4.12 (2)
.13
264 20 155 24
42 5 36 4
2.70 (3)
.44
178 275
41 45
2.11 (1)
.15
Age (years) Time spent caring (years)
Aging & Mental Health
Categorical measures Sex Male Female Education Less than high school High school only Tertiary Income management Always difficult Sometimes difficult Never difficult Employment Full-time Part-time Not employed Relationship status Unpartnered Partnered Spirituality Not spiritual/religious Spiritual/religious Living Area Urban Regional Rural Relationship to person with dementia Spouse Son/son-in-law Daughter/daughter-in-law Other Government financial support Not receiving Receiving a
Confidence interval of the mean difference.
than four times the annual rate of suicidal ideation in American and Australian adults (CDC, 2011; Pirkis et al., 2000) and exactly four times the rate reported in a population study of non-dementia carers in the UK (Stansfield et al., 2014). This confirms that suicidal ideation is indeed a significant phenomenon among family carers of people with dementia. The large sample size, the range of recruitment strategies, and the diverse sample are strengths of the current study and the findings have implications for future research and practice. The consistent rate of suicidal ideation across people caring at home (HC), people supporting a person with dementia in long-term care (IC), and bereaved carers (BD) was unexpected. Previous research on dementia carers has found that health problems and distress can increase in response to transitions in the caring role (Haley et al.,
2008; Nikzad-Terhune, Anderson, Newcomer, & Gaugler, 2010), and Rosengard and Folkman’s (1997) study of homosexual men caring for spouses with AIDS found higher rates of suicidal ideation in bereaved carers than in those whose care recipient was still alive. This discrepancy may be explained by differences in the carers’ proximity to transition in each study i.e. carers closer to or further from a role transition may experience high or lower rates of ideation or by differences in the disease progression, care needs, and social context of AIDS and dementia. It is also possible that even if the rate of suicidal ideation is consistent across stages in the dementia context, the factors that predict suicidal ideation may differ for HC, IC, and BD carers. While it was not within the scope of this paper to explore that, anecdotal evidence from carers in our research suggests poor quality long-term care, conflict with
6
S.T. O’Dwyer et al.
Table 3. Differences between suicidal and non-suicidal caregivers on measures of psychosocial well-being. Non-suicidal (n D 475) M (SD)
Suicidal (n D 91) M (SD)
RMBPC_Behavior
63.84 (15.52)
71.54 (15.73)
¡4.33 (564)
.00
RMBPC_Reaction
54.66 (17.45)
63.11 (17.51)
¡4.23 (564)
.00
SE_Symptoms
29.18 (11.74)
25.90 (11.90)
2.29 (491)a
.02
SE_Service
21.17 (10.19)
16.59 (10.14)
3.69 (491)a
.00
DKS
23.95 (3.37)
24.92 (2.95)
¡2.58 (564)
.01
CES-D
19.24 (7.89)
27.04 (8.87)
¡8.47 (564)
.00
GAI
6.72 (6.04)
11.03 (6.05)
¡6.23 (564)
.00
BHS
5.89 (5.01)
10.05 (6.29)
¡5.96b (112.96)
.00
LOT
20.30 (5.71)
15.87 (6.46)
ZBS
42.09 (15.37)
52.24 (14.66)
BCope_Emotion
23.89 (5.36)
BCope_Problem
Measures
t (df)
p
95% CIc ¡11.20, ¡4.21 ¡12.38, ¡4.53 0.47, 6.09 2.14, 7.01
6.64 (564)
.00
¡5.82 (564)
.00
23.07 (5.04)
1.36 (564)
.18
16.51 (4.46)
16.42 (4.23)
.19 (564)
.85
BCope_Dysfunctional
19.65 (5.08)
22.69 (5.64)
¡5.13 (564)
.00
DSSI_Satisfaction
15.44 (2.80)
13.55 (3.62)
DSSI_Interaction
8.12 (1.88)
¡1.72, ¡0.23 ¡9.62, ¡6.00 ¡5.67, ¡2.95 ¡5.54, ¡2.78
Aging & Mental Health
3.12, 5.75
4.72b (111.51)
.00
6.86 (1.82)
5.88 (564)
.00
47.34 (12.32)
45.20 (11.66)
1.53 (564)
.13
4.27 (.96)
3.42 (.97)
7.75 (564)
.00
¡13.58, ¡6.72 ¡0.37, 2.02 ¡0.90, 1.09 ¡4.20, ¡1.88 1.23, 2.55 0.84, 1.68
SF12_PCS BRLI
¡0.61, 4.88 0.64, 1.07
For these analyses, n D 412 (suicidal) and n D 81 (non-suicidal) as BD participants did not complete these scales. Equal variances not assumed. Confidence interval of the mean difference. RMBPC_Behavior D Revised Memory and Behavior Problems Checklist (Behaviors); RMBPC_Reaction D Revised Memory and Behavior Problems Checklist (Reactions); SE_Symptoms D Fortinsky Caregiver Self-Efficacy Scale (Symptom Management); SE_Service D Fortinsky Caregiver Self-Efficacy Scale (Community Support Service Use); DKS D Alzheimer’s Disease Knowledge Scale; SF12_PCS D SF-12 Health Survey (Physical Health Component Summary Score); CES-D D Centre for Epidemiologic Studies Depression Scale; BHS D Beck Hopelessness Scale; GAI D Geriatric Anxiety Inventory; LOT D Life Orientation Test; ZBS D Zarit Burden Scale. BCope_Emotion D Brief COPE (Emotion-Focused Coping); BCope_Problem D Brief COPE (Problem-Focused Coping); BCope_Dysfunctional D Brief COPE (Dysfunctional Coping); DSSI_Satisfaction D Duke Social Support Inventory (Satisfaction with Social Support); DSSI_Interaction D Duke Social Support Inventory (Interactions); BRLI D Brief Reasons for Living Inventory.
a
b c
family or care staff, and the loss of role may be some of the factors that contribute to suicidal ideation in IC and BD carers. Regardless, the current findings highlight the importance, for future research and practice, of focusing not only on those providing care in the community, but also those who have placed the person with dementia into long-term care or been recently bereaved. Despite a number of significant differences between suicidal and non-suicidal carers at the univariate level, only age, depression, and reasons for living were significant predictors in a multivariate model. A positive association between depression and suicidal ideation, and a negative association between reasons for living and suicidal ideation, is consistent with previous research
(McLean et al., 2008; O’Dwyer, Moyle, et al., 2013). Interventions designed to reduce depression and increase reasons for living may reduce suicidal ideation in family carers. While the current findings show an inverse relationship between age and the risk of suicidal ideation, this should be interpreted with caution. Older adults have the highest rates of suicide in developed countries and the lowest ratio of attempts to deaths (Bertolote & De Leo, 2012; De Leo et al., 2001). So, while young carers may be more likely to contemplate suicide, older carers should not be ignored in efforts to reduce suicide-related thoughts and behaviors in family carers. The absence of any significant risk or protective factors specifically associated with the caring role (e.g.
Aging & Mental Health Table 4. Outcomes of a logistic regression predicting suicidal ideation. Predictors
Aging & Mental Health
Age Income_1a Income_2b RMBPC_Behavior RMBPC_Reaction CESD GAI BHS LOT ZBS BCope_Dysfunctional DSSI_Satisfaction DSSI_Interaction BRLI Constant
b (SE)
df
exp b
95% CIc
¡0.04 (0.01) ¡0.82 (0.34) ¡0.05 (0.36) 0.02 (0.01) ¡0.002 (0.01) 0.05 (0.02) ¡0.001 (0.03) 0.05 (0.04) 0.01 (0.04) 0.01 (0.01) 0.03 (0.03) 0.02 (0.05) ¡0.11 (0.09) ¡0.73 (0.15) 1.22 (1.57)
1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
0.96 0.44 0.95 1.02 1.00 1.06 1.00 1.05 1.01 1.01 1.03 1.02 0.90 0.48 3.40
0.94, 0.99 0.23, 0.87 0.47, 1.91 0.99, 1.04 0.98, 1.02 1.01, 1.10 0.94, 1.06 0.98, 1.13 0.94, 1.08 0.98, 1.03 0.97, 1.09 0.92, 1.12 0.76, 1.07 0.36, 0.64
Data in bold indicate significant predictors. Model x2(14) D 142.05, p D .000; Hosmer & Lemeshow x2(8) D 3.08, p D .93; Nagelkerke R2 D .38. a Dummy coded to compare Always Difficult with Sometimes and Never Difficult. b Dummy coded to compare Sometimes Difficult with Always and Never Difficult. c Confidence interval for exp b. RMBPC_Behavior D Revised Memory and Behavior Problems Checklist (Behaviors); RMBPC_Reaction D Revised Memory and Behavior Problems Checklist (Reactions); CES-D D Centre for Epidemiologic Studies Depression Scale; BHS D Beck Hopelessness Scale; GAI D Geriatric Anxiety Inventory; LOT D Life Orientation Test; ZBS D Zarit Burden Scale; BCope_Dysfunctional D Brief COPE (Dysfunctional Coping); DSSI_Satisfaction D Duke Social Support Inventory (Satisfaction with Social Support); DSSI_Interaction D Duke Social Support Inventory (Interactions); BRLI D Brief Reasons for Living Inventory.
burden, reactions to the behavioral symptoms of dementia, or self-efficacy for service use) is inconsistent with previous qualitative research, in which some carers described suicide as a reprieve from the demands of caring and identified increasing care demands and carerelated conflict with family or service providers as risk factors for suicidal ideation (O’Dwyer, Moyle, & Van Wyk 2013). Interpersonal conflict was not measured in the current study and should be a focus of future research, along with longitudinal methods that might capture changes in care demands and suicidality over time. The post hoc analyses revealed that dysfunctional coping and satisfaction with social support had indirect
7
effects on suicidal ideation via depression. This supports the idea that depression, rather than being the sole explanation for suicidal ideation in carers, might be mediating the relationship between suicidal ideation and other markers of psychosocial well-being (O’Dwyer, Moyle, et al., 2013). Although causality cannot be inferred from cross-sectional data, interventions that seek to reduce depression in carers might do well to target carers’ coping strategies and attitudes toward social support. The absence of data on suicide attempts is a limitation of this study. Although the Suicidal Behaviors Questionnaire (Osman et al., 2001) includes an item about previous attempts, it focuses on any attempts in the respondent’s lifetime. Attempting to create a temporal connection between these experiences and the caregiving role would have been problematic and so that data were not included in the analysis. Given the high rate of suicidal ideation identified in family carers of people with dementia in this study, an exploration of suicide attempts and deaths by suicide in future research is recommended. To our knowledge, there is no evidence on suicide attempts or deaths by suicide in this population and, although suicidal ideation does not necessarily lead to a suicidal act, in the absence of this information, the current study provides the most compelling evidence of suicide risk in family carers of people with dementia. Future research should also explore differences in suicidality between male and female carers, and spouse and adult child carers, which were beyond the scope of this paper. Although this study focused specifically on family carers of people with dementia, there is scope to extend research on suicidality to other caring populations. Only three studies have explored suicidal ideation in nondementia carers one with men caring for male partners with HIV in America (Rosengard & Folkman, 1997), one with female carers in Australia (O’Dwyer et al., 2014), and one with carers in the United Kingdom (Stansfield et al., 2014) and neither O’Dwyer et al. (2014) nor Stansfield et al. (2014) provided information on the disease or disability of the care recipient. Research that explores the prevalence of suicide-related thoughts and behaviors in people caring for family members with discrete illnesses and disabilities (where the demographic profile of the carers or the nature of the caring role may differ) would help to clarify whether caring for a person with dementia presents an additional risk for suicide and contribute to
Table 5. Outcome of mediational analyses with suicidal ideation as an outcome and depression as a mediator. Direct effect Independent variable BCope_Dysfunctionala RMBPC_Reactionb DSSI_Satisfactionc
Indirect effect
B (SE)
95% CI
B (SE)
95% CI
0.01 (0.03) 0.01 (0.01) ¡0.06 (0.04)
¡0.04, 0.07 ¡0.01, 0.02 ¡0.15, 0.02
0.02 (0.01) 0.002 (0.002) ¡0.02 (0.01)
0.004, 0.03 ¡0.001, 0.01 ¡0.05, ¡0.01
Data in bold indicate significant effects. a Controlling for RMBPC_Reaction, DSSI_Satisfaction, GAI, BHS, LOT and ZBS. b Controlling for BCope_Dysfunctional, DSSI_Satisfaction, GAI, BHS, LOT, and ZBS. c Controlling for BCope_Dysfunctional, RMBPC_Reaction, GAI, BHS, LOT, and ZBS. RMBPC_Reaction D Revised Memory and Behavior Problems Checklist (Reactions); BCope_Dysfunctional D Brief COPE (Dysfunctional Coping); DSSI_Satisfaction D Duke Social Support Inventory (Satisfaction with Social Support).
Aging & Mental Health
8
S.T. O’Dwyer et al.
the small but growing body of literature on suicidality in family carers more generally. Future research might also seek to examine how the findings from this and other research on suicidality in carers aligns with existing theories of suicide and carer stress, or whether the development of a theory unique to carers is warranted. Although this study was promoted (for recruitment purposes) as research on the well-being of carers, all participants were informed about the presence of questions on suicidality prior to completing the survey. It is possible that carers selected into, or out of, the study on the basis of that information, leading to an over- or underestimate of the rate of suicidal ideation in this study. The inclusion of items on caring and suicidality in population surveys would help to confirm the current findings and minimize sampling bias. This is only the second quantitative study ever to explore suicidal ideation in family carers of people with dementia. Moreover, this study includes a larger and more diverse sample than was included in previous research. The high rate of suicidal ideation and the likelihood of future attempts mark family carers of people with dementia as a high-risk group for death by suicide, and this risk does not appear to be diminished by the death or institutionalization of the care recipient. Interventions to reduce suicide-related thoughts and behaviors in people caring for family members with dementia should focus on reducing depression and increasing reasons for living. Acknowledgements Dr Siobhan O’Dwyer was supported by a Fellowship from the Dementia Collaborative Research Centres when this study was conducted. The authors wish to thank the carers who gave up their time to complete the survey; the community organizations, advocacy services, and individuals who assisted with recruitment; Sarah Walbank (Carers Queensland) and the Consumer Advisory Panel for their assistance in the development of the survey instrument; Rod Lea and Nathaniel Herr for early statistical advice; and Andrew Hayes for advice on the use of the PROCESS macro.
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 a Griffith University New Researcher Grant.
Supplemental data Supplemental data for this article can be accessed at http://dx. doi.org/10.1080/13607863.2015.1063109
References Alzheimer’s Disease International. (2009). World Alzheimer report 2009. London: Alzheimer’s Disease International. Beck, A.T., Weissman, A., Lester, D., & Trexler, L. (1974). The measurement of pessimism: The Hopelessness Scale. Journal of Consulting and Clinical Psychology, 42, 861 863.
Bertolote, J.M. & De Leo, D. (2012). Global suicide mortality rates a light at the end of the tunnel? Crisis, 33, 249 253. Carpenter, B.D., Balsis, S., Otilingam, P.G., Hanson, P.K., & Gatz, M. (2009). The Alzheimer’s Disease Knowledge Scale: Development and psychometric properties. The Gerontologist, 49, 236 247. Carver, C.S. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4, 92 100. Casler, K., Bickel, L., & Hackett, E. (2013). Separate but equal? A comparison of participants and data gathered via Amazon’s MTurk, social media, and face-to-face behavioural testing. Computers in Human Behavior, 29(6), 2156 2160. Centres for Disease Control and Prevention. (2011). Suicidal thoughts and behaviors among adults aged 18 years United States, 2008 2009. Morbidity and Mortality Weekly Reports, 60 (SS13), 1 22. De Leo, D., Padoani, W., Scocco, P., Lie, D., Bille-Brahe, U., Arensman, E., … Wasserman, D. (2001). Attempted and completed suicide in older subjects: Results from the WHO/ EURO multicentre study of suicidal behaviour. International Journal of Geriatric Psychiatry, 16, 300 310. Fortinsky, R.H., Kercher, K., & Burant, C.J. (2002). Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging and Mental Health, 6, 153 160. Haley, W.E., Bergman, E.J., Roth, D.L., McVie, T., Gaugler, J. E., & Mittelman, M.S. (2008). Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms. The Gerontologist, 48, 732 740. Hayes, A.F. (2013). Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Press. Ivanoff, A., Jang, S.J., Smyth, N.J., & Linehan, M.M. (1994). Fewer reasons for staying alive when you are thinking of killing yourself: The Brief Reasons for Living Inventory. Journal of Psychopathology and Behavioral Assessment, 16, 1 13. Koenig, H.G., Westlund, R.E., George, L.K., Hughes, D.C., Blazer, D.G., & Hybels, C. (1993). Abbreviating the Duke Social Support Index for use in chronically ill elderly individuals. Psychosomatics, 34, 61 69. McLean, J., Maxwell, M., Platt, S., Harris, F., & Jepson, R. (2008). Risk and protective factors for suicide and suicidal behaviour: A literature review. Scotland: Scottish Government Social Research. Morgan, A.J., Jorm, A.F. & Mackinnon, A.J. (2013). Internetbased recruitment to a depression prevention intervention: Lessons from the Mood Memos study. Journal of Medical Internet Research, 15(2), e31. Nikzad-Terhune, K.A., Anderson, K.A., Newcomer, R., & Gaugler, J.E. (2010). Do trajectories of at-home dementia caregiving account for burden after nursing home placement? A growth curve analysis. Social Work in Health Care, 49, 734 752. O’Connor, A., Jackson, L., Goldsmith, L. & Skirton, H. (2013). Can I get a retweet please? Health research recruitment and the Twittersphere. Journal of Advanced Nursing, 70(3), 599 609. O’Dwyer, S.T. & Moyle, W. (2014). Using Google Adwords to recruit family carers of people with dementia. Australasian Journal on Ageing, 33, 128 131. 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., & Van Wyk, S. (2013b). Suicidal ideation and resilience in family carers of people with dementia: A pilot qualitative study. Aging and Mental Health, 17, 753 760. 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, 1182 1188.
Aging & Mental Health
Aging & Mental Health
Olsen, R. (2008). Self-selection bias. In P.J. Lavrakas (Ed.), Encyclopedia of survey research methods (pp. 809 811). Thousand Oaks, CA: Sage Publications. Osman, A., Bagge, C.L., Gutierrez, P.A., Konick, L.C., Kopper, B.A., & Barrios, F.X. (2001). The Suicidal Behaviors Questionnaire-Revised (SBQ-R): Validation with clinical and nonclinical samples. Assessment, 8, 443 454. Pachana, N.A., Byrne, G.J., Siddle, H., Koloski, N., Harley, E., & Arnold, E. (2007). Development and validation of the Geriatric Anxiety Inventory. International Psychogeriatrics, 19, 103 114. Pachana, N.A., Smith, N., Watson, M., McLaughlin, D., & Dobson, A. (2008). Responsiveness of the Duke Social Support sub-scales in older women. Age and Ageing, 37, 666 672. Pinquart, M. & Sorensen, S. (2003). Differences between carers and noncarers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250 267. Pirkis, J., Burgess, P., & Dunt, D. (2000). Suicidal ideation and suicide attempts among Australian adults. Crisis, 21, 16 25. Radloff, L.S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385 401. Rosengard, C., & Folkman, S. (1997). Suicidal ideation, bereavement, HIV serostatus and psychosocial variables in partners of men with AIDS. AIDS Care, 9, 373 384. Ryan, G. (2013). Online social networks for patient involvement and recruitment in clinical research. Nurse Researcher, 21 (1), 35 39.
9
Scheier, M.F., & Carver, C.S. (1985). Optimism, coping and health: Assessment and implications of generalized outcome expectancies. Health Psychology, 4, 219 247. Sorensen, S., Duberstein, P., Gill, D., & Pinquart, M. (2006). Dementia care: Mental health effects, intervention strategies, and clinical implications. Lancet Neurology, 5, 961 973. Stansfield, S., Smuk, M., Unwumere, J., Clarke, C., Pike, C., McManus, S., … Bebbington, P. (2014). Stressors and common mental disorders in informal carers: An analysis of the English Adult Psychiatric Morbidity Survey 2007. Social Science and Medicine, 120, 190 198. Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P.P. (1992). Assessment of behavioural problems in dementia: The Revised Memory and Behavior Problems Checklist. Psychology and Aging, 7, 622 631. Ware, J.E., Kosinski, M., Turner-Bowker, D.M., & Gandek, B. (2005). How to score version 2 of the SF-12 Health Survey. Lincoln, RI: QualityMetric Incorporated. Yuan, P., Bare, M.G., Johnson, M.O., & Saberi, P. (2014). Using online social media for recruitment of human immunodeficiency virus-positive participants: A cross-sectional survey. Journal of Medical Internet Research, 16(5), e117. Zarit, S.H., Orr, N.K., & Zarit, J.M. (1985). The hidden victims of Alzheimer’s disease: Families under stress. New York: New York University Press.
