The Thoughts Questionnaire (TQ) for family caregivers of people with dementia.

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The Thoughts Questionnaire (TQ) for family caregivers of people with dementia Karen A Sullivan, Elizabeth Beattie, Nigar G Khawaja, Gabriele Wilz and Lauren Cunningham Dementia published online 2 October 2014 DOI: 10.1177/1471301214553038 The online version of this article can be found at: http://dem.sagepub.com/content/early/2014/10/01/1471301214553038

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Article

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia

Dementia 0(0) 1–20 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214553038 dem.sagepub.com

Karen A Sullivan Institute of Health and Biomedical Innovation, Queensland University of Technology, Australia; School of Psychology and Counselling, Queensland University of Technology, Australia

Elizabeth Beattie Institute of Health and Biomedical Innovation, Queensland University of Technology, Australia; Dementia Collaborative Research Centre—Carers and Consumers, Queensland University of Technology, Australia; School of Nursing, Queensland University of Technology, Australia

Nigar G Khawaja Institute of Health and Biomedical Innovation, Queensland University of Technology, Australia; School of Psychology and Counselling, Queensland University of Technology, Australia

Gabriele Wilz Friedrich-Schiller-Universita¨t Jena, Jena, Germany

Lauren Cunningham Institute of Health and Biomedical Innovation, Queensland University of Technology, Australia; School of Psychology and Counselling, Queensland University of Technology, Australia

Abstract Objectives: To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. Method: A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n ¼ 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; Mage ¼ 64.30, standard deviation ¼ 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. Results: The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small Corresponding author: Karen A Sullivan, Clinical Neuropsychology Research Group, School of Psychology and Counselling, O Block, B Wing, Rm 523, Victoria Park Road, Kelvin Grove, Queensland 4059, Australia. Email: [email protected]



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number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r ¼.287, p ¼ .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. Discussion: This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs. Keywords family caregivers of people living with dementia, dysfunctional thoughts, assessment

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia TQ It has been estimated that there are approximately 200,000 Australian and 10 million North American caregivers of people living with dementia (Alzheimer’s Association, 2007; Australian Institute of Health and Welfare [AIHW], 2012). Caregivers of a person with dementia are defined as individuals (nonprofessionals)1 who have provided emotional, financial, or practical support for a period of at least six months. Care recipients are defined as adults aged over 60 who are unable to care for themselves due to the permanent condition of dementia (AIHW, 2006, 2012). It is important that family caregivers of people with dementia are supported, given that they provide the bulk of the care to a growing number of people with the dementia (Luengo-Fernandez, Leal, & Gray, 2010; Prince, Bryce, Albanese, Wimo, & Ferri, 2013). Providing care for a person with dementia is associated with both positive and negative caregiver outcomes (Brodaty & Donkin, 2009). These outcomes can co-occur, they may have different triggers and impacts, and they may be pertinent at different time points. Positive outcomes can include feelings of accomplishment and a sense of meaning that is derived from providing care (Carbonneau, Caron, & Desrosiers, 2010; Lin, Mcmillan, & Brown, 2012; Potgieter & Heyns, 2006; Sabat, 2011). Negative outcomes may include undue stress and burden (Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007; Truzzi et al., 2008), anxiety (Bandeira et al., 2007; Ulstein, Wyller, & Engedal, 2008; Yilmaz, Turan, & Gundogar, 2009), reduced sleep and depression (Lu & Wykle, 2007; Mioshi, Bristow, Cook, & Hodges, 2009), reduced participation in recreation, work, self-care, and social isolation (Brodaty & Donkin, 2009; Lu & Wykle, 2007; Wilson, Van Houtven, Stearns, & Clipp, 2007), financial hardship, and physical ill-health (Brodaty & Donkin, 2009). Identifying the factors that contribute to such negative outcomes may lead to ways of reducing them. Family caregiver’s thoughts about their role have the potential to contribute to negative outcomes. If these thoughts become ‘‘dysfunctional’’ (Losada, Montorio, Knight, Marquez, & Izal, 2006b, p. 116), they are implicated in depression. According to cognitive models of psychology, ‘‘dysfunctional’’ thoughts represent powerful distortions of reality that may be linked to unwanted responses or negative behaviors. Although well established in general,



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the concept of dysfunctional thought in relation to caregiving has not been extensively studied (Au et al., 2009). Dysfunctional thoughts are not specific to caregivers of people with dementia. Rather (a) they are experienced by a wide group of people (de Graaf, Huibers, Cuijpers, & Arntz, 2010; Stebbins & Pakenham, 2001), (b) they arise because inappropriate contingencies are attached to specific events, or expectations about oneself, the world, or the future (James, 1999), (c) they can lead to reduced coping self-efficacy and mood (Ellis, David, & Lynn, 2010; Kovacs & Beck, 1978), and (d) they are potentially modifiable. One study of 334 family caregivers of people with dementia found that holding the belief ‘‘family [must] come first’’ was associated with depressive symptoms (Losada et al., 2010). This belief would be regarded as dysfunctional if it led to adverse affective or behavioral consequences for the caregiver (Losada, Montorio, Izal, & Ma´rquez-Gonza´lez, 2006a), such as debilitating feelings of anger or resentment, not resting when exhausted, or putting themselves at significant risk by ignoring their own needs. There are many accounts from family caregivers of people with dementia that have documented such situations (e.g., Karlin, Bell, & Noah, 2001; Potgieter & Heyns, 2006) and, while very few studies have explored their origin, a cognitive perspective would suggest that dysfunctional thoughts could play a role. The prospect that dysfunctional thoughts can be modified to improve outcome has some support in the literature. A recent dementia trial involving caregivers of people with dementia showed that symptoms of depression (Losada, Marquez-Gonzalez, & RomeroMoreno, 2011; Ma´rquez-Gonza´lez, Losada, Izal, Perez-Rojo, & Montorio, 2007; RodriguezSanchez et al., 2013) and anxiety (Vernooij-Dassen, Draskovic, McCleery, & Downs, 2011) were alleviated by addressing dysfunctional thoughts. In a study of 125 caregivers, Rodriguez-Sanchez et al. (2013) found that the recipients of an eight-week cognitive behavioral treatment to modify dysfunctional role-related thoughts had significantly fewer dysfunctional thoughts and reduced depressive symptoms following the intervention. If the caregivers of people with dementia are to benefit from such interventions, a tool is needed to identify dysfunctional thought, particularly if this prospect is to be scalable. There are a number of general measures for this purpose (e.g., the Dysfunctional Attitudes Scale; see Weissman & Beck, 1978), but to the authors’ knowledge, only one measure was developed specifically for caregivers of people with dementia. This measure, the Dysfunctional Thoughts about Caregiving Questionnaire (DTCQ), was used in the intervention study described previously, and although its psychometric properties are promising (Montorio Losada, Izal, & Marquez-Gonzalez, 2009), these have not been examined fully nor have they been independently evaluated. Further, this measure has been critiqued because of the wordiness of some items (Montorio et al., 2009, p. 920), and the test development process that was used to constuct it is difficult to determine. Finally, the appropriateness of the DTCQ in a broad range of cultural contexts has not been established despite increasing recognition of the need to consider the cargiver’s cultural values when assessing their needs (Knight & Sayegh, 2010; Xiao et al., 2014). The primary aim of this study was to use an explicit theory-driven approach to develop a new measure of dysfunctional thoughts for caregivers of people with dementia and to evaluate its psychometric properties. It was expected that the new measure would have acceptable internal consistency for its stage of development (i.e., Cronbach’s alpha in the order of 0.70; see Hair, 2010). Construct validity was examined through comparisons with convergent and divergent measures. A strong positive correlation was expected between the



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new measure and (a) a measure of depressive symptoms and (b) a measure of caregiver stressors and strain; and a strong negative association was expected between the new measure and a measure of caregiver coping. A secondary aim was to conduct an independent evaluation of the DTCQ’s psychometric properties, including (a) its readability (which has not previously been examined) and (b) its relation to the measures of construct validity.

Method Participants Pilot participants for questionnaire development. Thirty-seven people were approached to join an expert panel (12 nonprofessional caregivers and 25 professionals) to develop the new measure, the TQ for Caregivers of People with Dementia (TQ). Professional panel members were (a) recruited from five of Australia’s seven major regions, Queensland (QLD), Victoria (VIC), New South Wales (NSW), South Australia (SA), Australian Capital Territory (ACT), and four countries (United States of America, the Netherlands, France, and the United Kingdom); (b) sought from the membership of the Australian National Health and Medical Research Council Ageing Well Research Network and other organizations or groups (e.g., the National Ageing Research Institute and the Australian Psychological Society Psychology and Ageing Interest Group) or were published in the area; and (c) a mix of health professionals (e.g., geriatricians, nurses, psychologists). Family caregiver panel members were (a) drawn from two Australian states (QLD and NSW), (b) primarily related by marriage to the person with dementia, and (c) in the caregiver role for a minimum of 1.5 years. Eighteen of the people who were contacted participated in the TQ pilot review (8 family caregivers and 10 professional caregivers). The characteristics of this group are summarized in Table 1. Study participants—TQ and DTCQ psychometric properties. Thirty-six caregivers of people with dementia were recruited by snowballing commencing with fliers distributed to key organizations (e.g., Carers QLD). Table 1 provides a comprehensive summary of the characteristics of the study sample.

Measures Thoughts Questionnaire (TQ). This measure was developed using the four stages of test construction (e.g., Allen & Yen, 1979; Smith, Fischer, & Fister, 2003). These stages comprise (a) content identification, (b) item generation, (c) item refinement, and (d) an empirical test of the measure to determine its psychometric properties (see Figure 1). Content for the TQ was identified after a review of published literature that focused on (a) qualitative studies of the caregiver experience specific to dementia, (b) existing measures of dysfunctional thought, and (c) the theoretical model. It also drew on archival data from caregiver focus groups conducted by our group. This stage identified eight well-documented themes that could represent the negative thoughts that some family caregivers of people with dementia may experience: perfectionism, overinvestment/embarrassment, personal vulnerability/fatality, interpretation of behavior, self-neglect, sole responsibility, and perceived social support. In the item generation stage, (a) items were developed around each of these themes, (b) the wording of items was checked against the archival focus



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Table 1. Demographic characteristics of the 18 panel members who provided feedback the pilot-TQ, and the 36 family caregivers of people with dementia (study sample) who completed the final version of the TQ and other measures. Pilot sample

Gender (% female) Age (years)

Ethnicity (family caregivers)/ country of residence (professionals) Relationship/role in relation to person with dementia

Duration of caregiving/years spent in dementia-related work role (months) Education (highest qualification) Dementia type

Study sample

Family caregivers of people with dementia (n ¼ 8)

Professionals working in dementia care (n ¼ 10)

Family caregivers of people with dementia (n ¼ 35)

75% M ¼ 57.50; SD ¼ 16.32; Range ¼ 21–75 7 Caucasian; 1 non-Caucasian

70% M ¼ 49.40; SD ¼ 11.66; Range ¼ 29–64 9 Australia; 1 outside of Australia

86% M ¼ 64.30; SD ¼ 10.65; Range ¼ 36–85 33 Caucasian; 2 non-Caucasian

5 spouses; 2 nonspouse family members; 1 undisclosed M ¼ 65.30; SD ¼ 46.35; Range ¼ 18–140 Not assessed 3 AD; 1 early onset AD 1 mixed type, 1 early onset FTLD, 1 early onset, 1 undisclosed

4 psychologists, 2 nurses, 2 medical doctors, 2 researchers M ¼ 170.4; SD ¼ 105.80; Range ¼ 36–360 Postgraduate qualifications Not applicable

24 spouses; 11 nonspouse family members; M ¼ 53.41; SD ¼ 49.49; Range ¼ 2–260 Not assessed 12 AD; 2 mixed type, 2 FTLD, 11 ‘‘early onset’’, 2 Vascular dementia; 2 DLB 2 unknown

Note: AD: Alzheimer’s disease; FTLD: frontal temporal lobe dementia; DLB: dementia with Lewy bodies; TQ: Thoughts Questionnaire.

group data to ensure they were worded as close as possible to actual caregivers’ statements, (c) items were written with the aim of maximizing readability (Ley & Florio, 1996), and (d) the theoretical framework was applied to check for theoretical completeness, with additional items generated as required. This process resulted in a list of 183 items. These items were reviewed by the project team (E.B., N.K., G.W., and K.S.) leading to (a) the revision of some items and (b) the reduction of the item pool to 55 items. Eliminated items were those that, on visual inspection, appeared to duplicate the content of other items. The final pool included items for every theme, assessing thoughts about the self, world, and future. For example, for the familism theme, the items were: ‘‘I have not told my family how much work this is for me’’ [self], ‘‘My family don’t agree about how to provide care’’ [world], and ‘‘I can’t see anything improving unless my family helps me’’ [future]). An online survey was administered to the panel to evaluate pilot TQ items against five questions assessing: face validity (1 item), usability (3 items), and overall perceived utility (retain/reject recommendation, 1 item).2 Family caregivers ‘‘agreed’’ that 21 of the 55 items should be retained. Professional caregivers ‘‘agreed’’ that 9 items should be retained, 4 of



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Figure 1. Flowchart showing TQ test development process.

which were also recommended by family caregivers. The 5 items nominated by professional caregivers exclusively and the 21 items nominated by family caregivers were further evaluated. These 26 items were again for theoretical coverage. All themes were represented, and one theme was overrepresented; therefore, 1 item was excluded (‘‘It is my duty to provide this care’’). The final TQ had 25 items answered on a 5-point scale (1 ¼ disagree, 5 ¼ agree) (see Appendix). Responses for each item ranged between 0 and 4. Items were summed to produce a total score (possible range 0–100; higher scores indicated more dysfunctional thoughts about caregiving). This scale had acceptable reliability in this sample (a ¼ .85). The Flesch Kincaid readability score revealed that the TQ required a grade level of 4.4 years, suggesting that most members of the general community would be able to read and understand the items. Similarly, the Flesch Reading Ease score was 81.7, where scores above 60 indicate an appropriate level of readability (Ley & Florio, 1996). Dysfunctional Thoughts about Caregiving Questionnaire (DTCQ) (Losada, 2005; Losada et al., 2006a, 2006b; Montorio et al., 2009).3 The DTCQ is a 16-item measure of dysfunctional thoughts. An example of a DTCQ item is, ‘‘A good caregiver should never get mad or lose control with the person that is being cared for.’’ Participants rate each of the 16 items on a 5-point Likert-type scale from totally disagree (0) to totally agree (4), where higher scores indicate more dysfunctional thoughts. Scores are summed and can range from 0 to 64, with higher scores indicating more dysfunctional thoughts, or more perceived



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barriers or obstacles. Two subscale scores can be obtained: Sole Responsibility and Perfectionism (Montorio et al., 2009), but for this study only total scale scores and average item scores were used. Previous research has described the DTCQ as having good psychometric properties, including a .58 correlation with the Weissman and Beck’s (1978) Dysfunctional Attitudes Scale (Montorio et al., 2009), a three-month test–retest reliability coefficient of .60 (Losada et al., 2010), and excellent internal consistency (Cronbach’s alpha ¼ 0.90; Losada et al., 2010). We conducted a formal readability analysis of this scale that revealed a required reading grade of 11.4 years, and in this study, the internal consistency of the DTCQ total score was acceptable (a ¼ .85). Geriatric Depression Scale (GDS) (Yesavage, Brink, Rose, & Lum, 1983). The GDS short form (D’ath, Katona, Mullan, Evans, & Katona, 1994) is a 15-item scale that measures depressive symptoms in individuals aged 65 and over. Participants answer yes or no to each of the 15 questions. Participants score one point for every question they answer yes, with 4 items reverse scored. Scores over 5 suggest depression (D’ath et al., 1994), and scores over 10 almost always indicate depression (Brink et al., 1982). Caregiver stress and coping (Pearlin, Mullan, Semple, & Skaff, 1990). Eleven of Pearlin’s scales were used: problematic behavior (14 items; a ¼ .79), overload (4 items, a ¼ .80), relational deprivation (6 items, a ¼ .77), family conflict about safety (4 items, a ¼ .80), family conflict about attitudes toward the patient (4 items, a ¼ .86), family conflict about attitudes toward the caregiver (4 items, a ¼ .84), role captivity (3 items, a ¼ .83), loss of self (2 items, a ¼ .76), caregiving competence (4 items, a ¼ .74), management of meaning (9 items, a ¼ .48)4 and management of distress (eight behaviors assessed with 1 item each, such as use of alcohol or exercise). All items were answered on a scale of 1–4. Items were averaged to produce a score for each scale. For the questions assessing stress, 1 indicated no stress and 4 indicated high stress.5 Therefore, for scales measuring stressors, higher scores indicated greater exposure to stressors. For items measuring coping (Management of Meaning scale and the individual Distress Management behavior items), 1 indicated never and 4 indicated very often. Therefore, higher scores indicated greater use of that particular coping strategy (1 ¼ never, 4 ¼ very often). Items on the Distress Management scale were interpreted individually (i.e., for each behavior).

Procedure Participating caregivers received a link to an online survey that presented all measures in a fixed order (TQ, GDS, Stress and Coping Scales, and DTCQ) in addition to demographic questions (see Table 1).

Results Descriptive statistics Table 2 provides descriptive statistics for caregivers’ scores on the TQ, DTCQ, the GDS, and the Pearlin scales. The results for the TQ and DTCQ revealed that, on average, caregivers disagreed with DTCQ statements (M ¼ 1.14, standard deviation (SD) ¼ .51; where 0 ¼ totally disagree and 4 ¼ totally agree) and were neutral about TQ statements (M ¼ 1.54, SD ¼ .54; where 0 ¼ disagree and 4 ¼ agree). The mean TQ total score was 38.41 out of a possible 100 (SD ¼ 13.57). The mean DTCQ total score was 18.09 out of a possible 64 (SD ¼ 8.13). The internal consistency (Cronbach’s alpha) of the total score for both scales was good (>.80 for



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Table 2. Descriptive statistics for two measures of dysfunctional thoughts (TQ, DTCQ), depressive symptoms (GDS), and caregiver stress and coping (subscales from Pearlin, Mullan, Semple, & Skaff, 1990) in a sample of family caregivers of people with dementia. Dysfunctional thoughts

N

a

Range

M

SD

Qualitative descriptiona

TQ (25 items) DTCQ (16 items) Depressive symptoms GDS (15 items) Caregiver stressors and strainb Burnout (4 items) Relationship deprivation (6 items) Safety (4 items) Attitudes toward patient (4 items) Attitudes toward caregiver (4 items) Role captivity (3 items) Loss of self (2 items) Caregiver copingb Caregiving competence (4 items)

35 35

.84 .87

18–72 3–41

38.40 18.09

13.57 8.13

N/A N/A

19

NA

5–11

7.84

1.64

At risk

35 35 35 35 35 35 33

.68 .91 .91 .90 .79 .90 .90

5–15 7–24 4–16 4–16 4–15 3–12 2–8

10.03 17.11 6.94 6.60 7.20 7.71 4.42

2.57 4.84 3.42 3.45 3.25 2.94 1.89

Somewhat–quite a bit Quite a bit Just a little disagreement Just a little disagreement Just a little disagreement Somewhat Somewhat

33

.64

5–16

12.82

2.54

35

.46

18–34

26.69

4.07

Somewhat (competent) or fairly (competent/confident) Fairly often

Management of meaning (9 items)

Note: TQ: Thoughts Questionnaire; DTCQ ¼ Dysfunctional Thoughts about Caregiving; GDS: Geriatric Depression Scale. GDS scores for caregivers aged 65 years or over are shown. a Qualitative descriptors were calculated by dividing the total score by the number of items and applying the original scale values to the result. b Items from these subscales are from Pearlin et al. (1990) and item response range from 1 to a maximum of 4.

both scales; see Table 2). Cronbach’s alpha of the TQ could not be further improved by the removal of individual items (see Table 3). Close inspection of TQ item-level responses was undertaken using an arbitrary criterion to identify statements that attracted positive or negative agreement (see Table 3). More than 50% of the sample either (a) disagreed or somewhat disagreed with 16 of the TQ 25 statements or (b) agreed or somewhat agreed with 4 of the 25 TQ statements. There were five statements that did not meet either criterion (see Table 3). Examples of statements that attracted negative, positive, or polarized agreement were as follows: ‘‘I would not seek outside help even if the situation worsens’’ (negative agreement); ‘‘I can see my situation deteriorating’’ (positive agreement); ‘‘Nobody really understands my situation as a caregiver’’ (polarized agreement). For the GDS, on average the sample scored 7.84 out of a possible 15 (SD ¼ 1.65). GDS normative comparisons for an older subgroup of the total sample (those aged over 65 years, n ¼ 19) revealed that this subgroup was at risk of depression (D’ath et al., 1994). Specifically, all of the caregivers in this subgroup had a score on the GDS higher than 5, suggesting an elevated risk for depression, and 6.3% of this group (n ¼ 1) had scores greater than 10; a cutoff indicative of clinical depression (Brink et al., 1982). The descriptive statistics for the Pearlin scales of caregiver stressors and strains (see Table 2) revealed that, on average, caregivers described themselves as somewhat to quite a


Agreement I can see my situation deteriorating I still try to do things myself even if I am sick I think things will get worse if I don’t get a break I think my own health is at risk because of the work involved in caring Disagreement I will not seek outside help even if the situation worsens I can’t accept help Seeking help is a sign that I am a failure My family don’t agree about how to provide care I can’t talk about the situation to others My family have ignored my pleas for help I can’t see how I can continue People will think less of me if I take time for myself I don’t use respite services because I would feel too guilty It would disturb our routine to bring in outside helpers I can’t see anything improving unless my family help me

TQ item

.23 .53 .57 .82 .86 1.00 1.14 1.17 1.20 1.23 1.31

0–3 0–3 0–4 0–4 0–4 0–4 0–3 0–4 0–4 0–4 0–3

.65 .75 1.04 1.13 1.19 1.21 1.06 1.38 1.35 1.37 1.16

3.17 .618 2.89 .83 2.69 1.11 2.50 1.26

SD

2–4 1–4 0–4 0–4

Obtained range of scores M

2.9 2.9 8.6 12.1 14.3 14.7 14.3 25.7 17.1 25.7 20

88.6 71.5 62.8 62

94.3 91.2 85.7 78.8 74.3 67.6 65.7 65.7 62.9 62.9 54.3

0 5.7 17.2 29.4


(continued)

.85 .84 .84 .84 .84 .84 .84 .83 .84 .84 .84

.85 .84 .85 .85

Percentage that Percentage that Cronbach’s somewhat somewhat alpha if item disagreed agreed deleteda or disagreed or agreed

Table 3. TQ items (n ¼ 25) by the average level of agreement across three categories (positive, negative, and neutral endorsement) in a sample of 35 Australian family caregivers of people with dementia.


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1.37 1.54 1.69 1.74 2 1.35 1.76 1.37 1.83 1.45 1.91 .97 1.91 1.46

0–4 0–4 0–4 0–4 0–4 0–4 0–4 0–3 0–4

1.40 1.46 1.35 1.27

1.37 1.29

SD

0–4

Obtained range of scores M

42.8 35.3 45.7

45.7 29.4

31.4 34.3 37.2 34.3

25.8

42.9 38.2 42.9

45.7 35.3

60 57.1 54.3 54.4

54.3

.85 .84 .84

.84 .84

.84 .84 .84 .84

.84

Percentage that Percentage that somewhat Cronbach’s somewhat disagreed alpha if item agreed or disagreed deleteda or agreed

Note: Item percentages may not sum to 100 because the percentage that responded ‘‘neither agree nor disagree’’ was omitted. Agreement ¼ the average TQ score for this item was 2 or above and this score was obtained by >50% of the sample; Disagreement ¼ the average TQ score for this item was less than 2, and this score was obtained by >50% of the sample; Neutral agreement ¼ items that were neither agreed or disagreed with by a majority of the sample. a n ¼ 28 for this analysis.

I have to do everything for the person I care for, there’s no one else who knows how Looking after myself is not as important as being there to provide care To do it properly I have to do everything myself I should be providing care, not devoting time to my hobbies I have not told my family how much work this is for me Neutral agreement Nobody really understands my situation as a caregiver I can’t see how things will get better if the person I care for keeps doing embarrassing things I’m not able to do some of the things expected of me as a caregiver I can’t go on like this; I am being run into the ground I can’t enjoy my spare time because I should be providing care

TQ item

Table 3. Continued.


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bit burnt out (M ¼ 2.51, SD ¼ .62; where 2 ¼ somewhat and 3 ¼ quite a bit), somewhat role captive (M ¼ 2.56, SD ¼ 1.01; where 2 ¼ somewhat and 3 ¼ quite a bit), and somewhat competent as caregivers (M ¼ 3.30, SD ¼ .45; where 3 ¼ fairly and 4 ¼ very). They reported that the person with dementia’s condition had led to quite a bit of relationship deprivation (M ¼ 2.84, SD ¼ .84; where 3 ¼ quite a bit), and they described just a little disagreement with others about (a) issues concerning the safety of the person living with dementia (M ¼ 1.78, SD ¼ .88) or (b) family attitudes toward the person living with dementia (M ¼ 1.67, SD ¼ .87) or family attitudes toward the caregiver (M ¼ 1.84, SD ¼ .82; where 1 ¼ no disagreement and 2 ¼ a little disagreement). Caregivers reported using management of meaning coping strategies to cope with their role as caregiver fairly often (M ¼ 2.95, SD ¼ .44; where 3 ¼ fairly often). Table 2 shows the practical coping strategies that caregivers reported using, the most frequent of which was watching TV, followed by reading and exercising, and the least frequent of which was smoking or taking ‘‘calming’’ medication.

Interrelationships between measures To determine the relationship between the TQ and DTCQ, and between each of these measures and the other measures (GDS, Pearlin scales), correlations were undertaken. There was no significant correlation between the TQ and DTCQ total scores, although the data trended positively (r ¼ .29, p ¼ .10). To investigate the relationship between dysfunctional thoughts and depressive symptoms, correlations were conducted between both measures of dysfunctional thinking and the GDS for those aged 65 and over (n ¼ 19). Neither the total TQ score (r ¼ .319, p ¼ .183) nor the total DTCQ score (r ¼ .331, p ¼ .167) was significantly correlated with the GDS, but the direction and magnitude of trending associations between the pairs of measures were similar. Table 4 shows the relationship between dysfunctional thoughts as measured by the DTCQ and the TQ, and caregiver stress risk factors. Both measures of dysfunctional thought (DTCQ, TQ) were significantly and positively associated with the caregiver’s report of the frequency of the care recipients’ ‘‘problem behaviors’’ (DTCQ: r ¼ .46; TQ: r ¼ .40) and family conflict about attitudes to the caregiver (DTCQ: r ¼ .40; TQ: r ¼ .42). There were no other statistically significant correlations between DTCQ and other stress risk factors.

Table 4. Caregiver’s use of distress management strategies. Strategy

N

M

SD

Qualitative description

Spend time alone Eat Smoke Get some exercise Read Watch TV Take some calming medication Drink some alcohol

35 35 34 34 35 34 34 33

2.29 2.51 1.15 2.67 2.69 2.91 1.33 2.06

.52 .92 .61 .77 .96 .66 .59 .86

Once in a while Once in a while–fairly often Never Fairly often Fairly often Fairly often Never Once in a while

Note: 0 ¼ never, 1 ¼ once in a while, 2 ¼ fairly often, 3 ¼ very often. Items are from Pearlin and colleague’s Distress Management Strategies subscale (Pearlin, Mullan, Semple, & Skaff, 1990).



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However, the TQ was significantly positively correlated with all other stress risk factors except for family conflict about attitudes toward patient and caregiver competence (see Table 3). The relationship between dysfunctional thought measures (DTCQ, TQ) and the use of coping strategies is shown in Table 5. These results showed that there were some significant relationships between the use of specific coping strategies and dysfunctional thoughts when these thoughts were measured by the DTCQ, but not when these thoughts were measured with the TQ. Specifically, as DTCQ dysfunctional thoughts increased, caregivers reported more frequent use of management of meaning coping strategies (r ¼ .33, p ¼ .054) and less frequent use of exercise (r ¼ .39, p < .05) or alcohol (r ¼ .44, p < .01).

Discussion The caregivers of people with dementia in this study typically experienced few ‘‘dysfunctional’’ thoughts. On average, they disagreed with the TQ and DTCQ statements that described such thoughts. A comparison of the DCTQ results from this study with previous estimates revealed that, on average, caregivers in this study had lower DTCQ total scores (M ¼ 18.29, SD ¼ 8.82) than a sample of 227 depressed caregivers (M ¼ 31.5, SD ¼ 12.3; Montorio et al., 2009) and nondepressed caregivers (n ¼ 334; M ¼ 28.12; SD ¼ 13.75; Losada et al., 2010). This finding could be accounted for by differences in the recruitment strategy: this study recruited participants from caregiver support organizations, whereas the DTCQ study recruited participants from the general community (Montorio et al., 2009). Nevertheless, other explanations for these differences, including cultural differences should be further researched. More broadly, this finding is consistent with the view that family caregivers do not universally experience their role as burdensome (Karlin, Bell, & Noah, 2001 ); they may experience a mix of responses that are temporarily dynamic, co-incident, and have varying degrees of salience across the caregiver journey. Despite the typical TQ or DTCQ response, a small number of items elicited strong agreement by most of the sample. The thoughts that were endorsed in this way included statements such as ‘‘I still try to do things even if I am sick.’’ This sentiment is one that has been commonly documented in the family caregivers of people with dementia literature (e.g., Vitaliano, Young, & Zhang, 2004). Such thoughts are not necessarily dysfunctional; however, if they are associated with negative behavioral or affective consequences, they could signal that assistance is required. The psychometric properties of both of the measures that were examined in this study suggest that they could be useful screening tests for dysfunctional thoughts. The DTCQ was found to be a reliable measure, with good internal consistency (consistent with past reports, see Losada et al., 2010), but relatively poor readability. The new measure, the TQ, was found to be reliable and readable. If repeat administrations are planned, the DTCQ may be preferred because its test–retest reliability is known, and further research is needed to establish the TQ’s test–retest reliability. If screening is needed in a low-literacy population where readability is particularly important, the TQ may prove useful. The correlation between the TQ and DTCQ was positive, with a moderate effect size, but it was not statistically significant (p < .08). These data could indicate that significance may have been found in a larger sample (Field, 2009). The validity of the DTCQ and TQ was explored through correlations with established measures of (a) depressive symptoms, (b) stress risk factors, and (c) coping. Neither measure


.458** .255 .106 .359* .461** .454** Competence Management Time alone of meaning .261 .331* .115 .124 .229 .095

Burnout

.097 .262

.018 .387* Eat .016 .192

.015 .314 Smoke .392* .149

.395* .420* Exercise

.045 .154

.054 .518** Read

.020 .012 .141 .064

.436* .084

.178 .620** TV Medication Alcohol

Note: CG: caregiver; DTCQ: Dysfunctional Thoughts about Caregiving; TQ: Dementia Caregivers Thoughts Questionnaire; Stress and coping are measured by Pearlin’s subscales (Pearlin, Mullan, Semple, & Skaff, 1990). *p < .05. **p < .01.

DTCQ TQ

DTCQ TQ Coping strategies

Problem Stress risk factors behaviors

Conflict over Conflict attitudes to the Conflict over attitudes person with Relationship over to CG Role captivity Loss of self dementia deprivation safety

Table 5. Correlation between dysfunctional thoughts and stress risk factors (top panel) and coping strategies (bottom panel, N ¼ 35).


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was significantly positively correlated with depressive symptoms, despite trending in expected direction. Losada et al. (2010) previously reported a small but statistically significant correlation between the DTCQ and a measure of depressive symptoms (Center for Epidemiological Studies–Depression Scale, r ¼ .14). The lack of association in this study may be because the sample size was smaller than in the Losada et al. (2010) study, or because of restriction of range on the measures (participants in this study were less likely to agree with dysfunctional thought statements than the participants in the Losada et al. (2010) study). Future research needs to investigate whether there is a relationship between dysfunctional thoughts and depression in a larger sample of caregivers of people with dementia with a wider range of responses on the measures. The absence of a relationship between the measures could also indicate the effective use of coping strategies in this support-seeking sample (vs. Losada et al.’s intervention sample) because it could serve to mediate the negative impact of dysfunctional thinking on mood. Alternatively, it could be that these thoughts are related, but not equivalent, to depressive symptoms. A study design that had the capacity to address these possibilities is suggested for future research. The expected associations between each of the measures of dysfunctional thought and caregiver stress risk factors were found for the TQ in most instances and for the DTCQ in only a few instances. The TQ was significantly positively correlated with all but one of the nine measures of caregiver stress. The DTCQ had similar associations, but with fewer measures (two of the nine Pearlin stress scales). The two stress risk factors that were significantly positively associated with the DTCQ and the TQ were (a) increased conflict due to family attitudes toward the caregiver and (b) an increase in frequency (number of days per week) that the caregiver reported behavioral and psychiatric symptoms of dementia. The total score on the TQ, but not the DTCQ, was also significantly positively correlated with caregivers’ perception of (a) deterioration in the relationship with the person with dementia, (b) greater family conflict over the person living with dementia’s safety, (c) greater role captivity, and (d) an increased sense of loss of self. The expectation that the TQ and DTCQ would be negatively associated with a measure of coping was not supported. None of the correlations between the TQ and 11 of Pearlin’s coping subscales reached statistical significance. Significant correlations between the DTCQ and 3 of the 11 Pearlin coping scales were identified, but not all of these correlations were in the expected direction. Specifically, fewer dysfunctional thoughts as measured by the DTCQ were associated with more exercise (single question), more alcohol consumption (single question), and more management of meaning (multi-item scale). There are several study limitations that include small sample size of unknown representativeness due to convenience sampling and a possible recruitment biases toward higher functioning caregivers who were already accessing support, reliance on caregiver selfreport to ascertain the clinical history of the person with dementia and other observations, and the use of a cross-sectional correlational design that cannot demonstrate change over time or indicate causality. This study did not determine the test–retest reliability of the TQ and this should be investigated in future research. Given these caveats, findings from this study should be interpreted cautiously and must be regarded as preliminary. If further work on this scale is to be undertaken in Australia, the use of participant reimbursements, or data collection during home visits or as part of a clinical trial, should be considered to increase the sample size. This study explored the negative thoughts that caregivers of people with dementia may experience, with a focus on the measures that could be used to assess dysfunctional thoughts.



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It is important to reiterate that not all caregivers will experience such thoughts—our data attest to this—nor are they necessarily indicative of dysfunction. Tools to assess dysfunctional thoughts for caregivers of people with other conditions have existed for some time (e.g., Bonifazi, Crowther, & Scott Mizes, 1998), but tools for family caregivers of people with dementia have only recently emerged. Pending further research, the new measure introduced in this study, the TQ, could provide researchers and clinicians with a choice of tools from which to choose when screening for dysfunctional thoughts. If the TQ is used for this purpose, it should be interpreted as a screening measure only and positive results followed up, ideally with a clinical interview.

Acknowledgments Recruitment for this project was supported by Alzheimer’s Australia and Carers Queensland. Project input and advice were gratefully received from the Consumer Dementia Research Network and Dr Anne Katrin Risch. The authors thank Dr Judith McCrow, for assistance with an application for ethical clearance, and Ms Kathryn Schenk and Ms Monique Sinclaire, for assistance with preliminary phases of the project. This project received occupational health and safety clearance and approval by the Queensland University of Technology Human Research Ethics Committee (project approval number: 0900001158). Parts of this project have been presented at the Australian national Dementia Research Forum.

Funding This work was supported by the 2009 Alzheimer’s Australia Research Dementia Grants Program. Funding from the Hazel Hawke Research Grant in Dementia Care category was awarded to K. A. Sullivan, E. Beattie, N. G. Khawaja, and G. Wilz.

Notes 1. In some studies, the term ‘‘informal caregivers of people with dementia’’ is used (e.g., Quinn, Clare, McGuiness, & Woods, 2012) instead of the term ‘‘family caregivers of people with dementia.’’ For a recent review of this nomenclature, see Van Durme, Macq, Jeanmart, and Gobert (2012). 2. The five questions pilot participants were asked about each item included: (a) This is a thought that I or other caregivers have expressed, (b) This item is written in a language that I or other caregivers may use, (c) I or other caregivers would know what this statement means, (d) This item is clearly worded, and (e) This item should be included in the measure. 3. Losada (2005) and Losada, Montorio, Izal, and Ma´rquez-Gonza´lez (2006a) describe the construction of the Dysfunctional Thoughts about Caregiving Questionnaire (DTCQ). Montorio et al. (2009) provide an English translation of the measure. Losada, Montorio, Knight, Ma´rquez, and Izal (2006b) explain the role of dysfunctional thoughts in caregiver distress from a cognitive perspective. 4. The nine management of meaning items contribute to three subscales assessing reduced expectations a ¼ .46, positive comparisons a ¼ .68, and developing a larger sense of illness, a ¼ .18, respectively. 5. Problematic behavior—1 ¼ no days, 4 ¼ 5/more days; Overload and Loss of Self—1 ¼ not at all, 4 ¼ completely; relational deprivation—1 ¼ not at all, 4 ¼ completely; family conflict—1 ¼ no disagreement, 4 ¼ quite a bit of disagreement; role captivity—1 ¼ not at all, 4 ¼ very much; caregiving competence—1 ¼ not at all, 4 ¼ very (much).



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Karen A Sullivan is a professor of Psychology, with specialization in clinical neuropsychology. She is a senior academic, with over 20 years’ experience in psychology research and teaching. She originally trained at the University of Melbourne and now leads the Clinical Neuropsychology Research Group at the Queensland University of Technology. Elizabeth Beattie is the professor of Aged and Dementia Care and Director of the Dementia Collaborative Research Centre: Carers and Consumers at the Queensland University of



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Technology. Her specific research interests are in intervention development to ameliorate behavioral and psychological symptoms of dementia, decisional capacity issues for people living with dementia, and dementia-related perceived stigma. Nigar Khawaja is a senior academic, with specialist training in clinical psychology. Her background includes advanced level training of postgraduate clinical psychology students in the areas of clinical assessment and professional ethics. Her specific research interests include working with culturally and linguistically diverse groups and psychological test construction. Gabriele Wilz is a leading researcher in the area of interventions for family caregivers and people with dementia. She has a practice background in clinical psychology, and she has led large scale interventions for family caregivers aimed at improving psychological well-being. She is Professor of Clinical Intervention at the Friedrich-Schiller-Universita¨t Jena. Lauren Cunningham holds a master degree in educational and developmental psychology. She is a practising registered psychologist and full member of the Australian Psychological Society, and she has a strong interest in supporting people through developmental transitions.



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Appendix. Final 25 items included in the TQ.

0 1. I’m not able to do some of the things expected of me as a caregiver 2. Nobody really understand my situation as a caregiver 3. I can’t see how I can continue 4. I see my situation deteriorating 5. It would disturb our routine to bring in outside helpers 6. I would not seek outside help even if the situation worsens 7. I have not told my family how much work this is for me 8. To do it properly, I have to do everything myself 9. My family have ignored my pleas for help 10. My family don’t agree about how to provide care 11. I can’t see anything improving unless my family help me 12. I still have to do things myself even if I am sick 13. I think my own health is at risk because of work involved in caring 14. People will think less of me if I take time for myself 15. I think things will get worse if I don’t get a break 16. I can’t go on like this—I’m being run into the ground 17. Seeking help is a sign that I am a failure 18. I can’t accept help 19. I have to do everything for the person I care for, there’s no one else who knows how 20. I can’t see how things will get better if the person I care for keeps doing embarrassing things 21. I can’t talk about the situation to others 22. I don’t use respite services because I would feel too guilty 23. I can’t enjoy my spare time because I should be providing care 24. I should be providing care, not devoting time to my hobbies 25. Looking after myself is not as important as being there to provide care Note: TQ: Thoughts Questionnaire. 0 ¼ Totally disagree, 1 ¼ disagree, 2 ¼ neither agree nor disagree, 3 ¼ agree, 4 ¼ totally agree.


1

2

3

4

Information Needs of Family Caregivers of People With Dementia.

The Tele.TAnDem intervention: study protocol for a psychotherapeutic intervention for family caregivers of people with dementia.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

Understanding the sleep problems of people with dementia and their family caregivers.

Stress-buffering Effect of Coping Strategies on Interrole Conflict among Family Caregivers of People with Dementia.

Medication management concerns of ethnic minority family caregivers of people living with dementia.

Effectiveness of online cognitive behavioral therapy on family caregivers of people with dementia.

The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature.

Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

The effects of a Cognitive Stimulation Therapy [CST] programme for people with dementia on family caregivers' health.

Process evaluation of a multicomponent dyadic intervention study with exercise and support for people with dementia and their family caregivers.

The importance of music for people with dementia: the perspectives of people with dementia, family carers, staff and music therapists.

Clinical assessment of family caregivers in dementia.

Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial.

'A respite thing': A qualitative study of a creative arts leisure programme for family caregivers of people with dementia.

Usability of a Wearable Camera System for Dementia Family Caregivers.

Religious Coping in Caregivers of Family Members With Dementia.

Dementia care in European countries, from the perspective of people with dementia and their caregivers.

[Small-scale, homelike care environments for people with dementia: effects on residents, family caregivers and nursing staff].

Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers.

Sleep in persons with frontotemporal dementia and their family caregivers.

Wearable Technology to Garner the Perspective of Dementia Family Caregivers.

Using the Affiliate Stigma Scale with caregivers of people with dementia: psychometric evaluation.

Strategies for sustaining self used by family caregivers for older adults with dementia.