A revised interview for deterioration in daily living activities in dementia reveals the relationship between social activities and well-being.

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Article

A revised interview for deterioration in daily living activities in dementia reveals the relationship between social activities and well-being

Dementia 0(0) 1–14 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214553614 dem.sagepub.com

Clarissa M Giebel School of Psychological Sciences, University of Manchester, Manchester, UK; Personal Social Services Research Unit, University of Manchester, Manchester, UK

David J Challis Personal Social Services Research Unit, University of Manchester, Manchester, UK

Daniela Montaldi School of Psychological Sciences, University of Manchester, Manchester, UK

Abstract Background: The ability to perform instrumental activities of daily living deteriorates early in dementia and affects people with dementia and their carers. However, little is known about individual instrumental activities of daily living impairments. This study therefore investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress. Moreover, this study explored the contribution of social instrumental activities of daily livings, which to date have received little or no attention. Methods: Twenty carers were administered a revised Interview for Deterioration for Daily Living Activities in Dementia and measures of carer stress (General Health Questionnaire-12) and quality of life in dementia (Quality of Life in Alzheimer’s Disease). The people with dementia completed measures of general cognition (Mini-Mental State Examination and Montreal Cognitive Assessment). Data were analysed using frequency and bivariate correlation analyses and basic thematic analysis was employed to the qualitative data on carer stress. Results: Carer interviews showed that instrumental activities of daily living impairments were associated more with performance than with initiative deficits. Increased social isolation and Corresponding author: Clarissa M Giebel, Personal Social Services Research Unit, University of Manchester, Dover Street Building, Oxford Road, M13 9PL, Manchester, United Kingdom. Email: [email protected]

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reluctance to engage in hobbies were particularly stressful to carers and impacted negatively on the people with dementia quality of life, yet were not reported as critical in the qualitative assessment. Conclusions: This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being. The revised Interview for Deterioration for Daily Living Activities in Dementia with its social instrumental activities of daily livings can help shift the focus of interventions to address those activities that are frequently impaired in mild dementia and relate to people with dementia and carer well-being. Keywords dementia, instrumental activities of daily living, cognition, carer stress, quality of life

Introduction Dementia affects a growing number of people worldwide, with 35.6 million cases estimated in 2010 (Alzheimer’s Disease International, 2010). Given this growing number, dementia not only causes increased costs (Wimo et al., 2013) but also requires increasing family support to care for the individual. One of the most distressing symptoms of early dementia is losing the ability to live independently. This becomes apparent not only in the early stages but also in the preclinical stages (Pe´re`s et al., 2008; Sikkes et al., 2011) and encompasses predominantly complex instrumental activities of daily living (IADLs) (Pocnet, Rossier, Antonietti, & von Gunten, 2013), including dressing, food preparation, finance and medication management, laundry, household tasks, telephoning, and transport (Lawton & Brody, 1969). To a much lesser extent are affected the more basic activities of daily living (ADLs) (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963), including bathing, continence, dressing, feeding, toileting, and transfer out of bed, in mild dementia. Although traditionally defined by complex IADLs and basic ADLs, the concept of everyday function lacks specification. This is perhaps because the typical definition of everyday function, as used in the context of dementia, appears to stress activities that are critical to living an independent life, rather than those that might be important to the quality of that life. The type of activity it focuses on is also more of a mechanical nature, and might, in theory, be carried out by anyone on behalf of the people with dementia (PwD). However, everyday activities that are more central to and defining of a person’s personality and social life, such as maintaining hobbies, or benefitting from the awareness of the unravelling of a day, and the monitoring of the activities that characterise it, can equally form an important part of living independently and living a rich and personality-defining life. Not only do such activities form a part of everyday functioning, but, critically, so does the motivation to perform these activities. These aspects of everyday function have largely been neglected when rating the level of independence in PwD. Given their importance in daily life however, the concept of everyday functioning, as used in the context of dementia, may need to be amended. Little evidence is available on the levels of impairment experienced for individual IADLs. However, in a 10-year longitudinal assessment of initially healthy older adults, Pe´re`s et al. (2008) focused on the deterioration in abilities relating to telephoning, transportation,



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medication, and finance management. Healthy older adults, including those who subsequently developed dementia after 10 years, experienced difficulties in performing all four IADLs, although PwD showed a steeper performance decline. Interestingly, finance management was particularly impaired at baseline in those who subsequently developed dementia, which is consistent with the findings by Marson et al. (2000) and Griffith et al. (2003). Moreover, it is relevant to note that, within the mild dementia range, performance on the Mini-Mental State Examination (MMSE) was associated with level of IADL impairment (Marson et al., 2000). This suggests that impairments in IADL performance may be underpinned by relatively subtle impairments in cognition; a view previously supported in the literature (Farias, Mungas, Reed, Haan, & Jagust, 2004; Fauth et al., 2013). By drawing on carer reports, the Interview for Deterioration of Daily living Activities in Dementia (IDDD) (Teunisse, Derix, & van Crevel, 1991) provides a suitable platform for investigating deficits in both the Initiative and Performance of IADLs and some ADLs. This differentiation between Initiative and Performance is critical as PwD may still be able to perform an activity, yet lack the motivation or ability to initiate the task. In contrast, PwD may be eager to carry out a task, yet are unable to fully perform the task, as the functions that underpin certain steps of the activity may be impaired. Identifying the source of deficit has important potential implications for support and remediation. More recent scales measuring IADL performance incorporate a larger range of activities, such as the Disability Assessment for Dementia (Gelinas, Gauthier, McIntyre, & Gauthier, 1999) and the Amsterdam IADL Questionnaire (Sikkes et al., 2012, 2013), yet these fail to distinguish between the initiative and performance of IADLs. To our knowledge, no study has yet explored this level of detail in IADL performance in early dementia, incorporating the differentiation between initiative and performance deficits. In view of the strain that caring for someone with dementia can place on the carer, measuring IADL performance through a detailed semi-structured carer interview offers the opportunity to explore the impact of impairments in the performance of individual tasks on carers. Although everyday task dependence is linked to heightened levels of carer stress (Ricci et al., 2009), it remains unknown which individual IADLs are associated with the greatest increase in distress. Similarly, poorer IADL and ADL performance has a negative impact on the PwD quality of life (QoL) (Andersen, Wittrup-Jensen, Lolk, Andersen, & Kragh-Sorensen, 2004; Crespo, Hornillos, & de Quiros, 2013), but we have limited evidence of how individual daily activities are associated with QoL (Giebel, Sutcliffe, & Challis, 2014a; Giebel et al., 2014b). In an intervention aimed at improving ADLs in mild dementia, Avila et al. (2004) showed that improved IADL performance decreased carer burden and increased PwD QoL. Building upon quantitative evaluations of these relationships (Zanetti, Geroldi, Frisoni, Bianchetti, & Trabucchi, 1999), a detailed mixedmethod exploration, including the quantitative evaluation of IADL initiative and performance deficits combined with a qualitative description of the deficits, can provide further knowledge. The aim of the current study was therefore to examine in detail the degree of IADL impairment accompanying mild dementia while also further developing the repertoire of daily activities assumed under the term of everyday function. Critically, the relationship between IADL impairment and general cognition, carer stress and PwD QoL was also investigated. Underlying these objectives was inherent the need to expand the IDDD by adding a selection of activities, which were expected to relate to the PwD’ QoL and carer stress, and semi-structured interview questions concerning carer stress. The study



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hypothesised that higher degrees of IADL impairment were associated with (1) lower cognitive functioning; (2) higher levels of carer stress and (3) lower levels of PwD QoL. Furthermore, deficits in the initiative and performance were expected to dissociate in some form. Understanding these relationships has potential implications for the development of nonpharmacological interventions, for maintaining independence and improving QoL, for reducing carer stress and thus also deferring care home entry and reducing care costs.

Method Participants Carers and PwD were recruited from a local memory clinic, where they were approached by clinic staff if the following three inclusion criteria were met: The PwD had (a) a formal diagnosis of dementia; (b) an MMSE score of 21 or above and (c) an informal carer, such as spouse, son, daughter or neighbour, willing to provide information about the IADL deficits displayed by the PwD. Forty participants, including 20 PwD and 20 carers, were recruited to the study. PwD and carers had a mean age of 77 years (8.3 standard deviation (SD)) and 70 years (16.2 SD), respectively. Eight PwD (40%) and 12 carers (60%) were female, with the majority of carers being spouses (80%) as opposed to children (20%). The most common dementia diagnosis was Alzheimer’s disease (AD) (40%), but other diagnoses included vascular and frontotemporal dementia. PwD had a mean MMSE score of 23.6 (range, 21–27). Ethical approval was obtained prior to the study from the National Research Ethics Service and Research Governance.

Materials Interview for Deterioration in Daily living Activities in Dementia (IDDD). To assess everyday activities, the IDDD (Teunisse et al., 1991) was administered to caregivers to examine levels of initiative (9 activities) and performance (11 activities). Levels of activity impairment were rated on a 5-point Likert-type scale ranging from 0 (never problems initiating/performing) to 4 (always problems initiating/performing). Ratings between primary and secondary caregivers have been found to strongly correlate on the IDDD (Teunisse & Deriex, 1997) with additional reports of good construct validity of the scale (Voigt-Radloff et al., 2012). Concurrent validity of the IDDD however is very low, and Voigt-Radloff et al. (2012) suggested adding further activities. The present study therefore included additional activities for both the intention and performance IDDD scales. The new activities included in this study were ‘use of transport’, ‘medication management’, ‘maintaining active social life’, ‘engaging in hobbies’, ‘following familiar routes’, ‘following current affairs’, ‘monitoring own day’ and ‘monitoring current activity’ (Table 2), which resulted in a revised–IDDD (R-IDDD). Furthermore, semi-structured interview questions were added to determine the type of error committed for impaired activities. Additional questions explored which activity deficits were most stressful for the caregiver, who was also asked to list any further deficits not included in the R-IDDD. With this being the first study to administer the R-IDDD, the scale still requires assessments for its validity and reliability.



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Cognition General cognitive performance was assessed using the MMSE (Folstein, Folstein, & McHugh, 1975) and the Montreal Cognitive Assessment (MoCA) (Nasreddine et al., 2005). The former has been the most frequently used cognitive screening tool for dementia for several decades, where a score of 21 or above (out of 30) has been used as an indicator for mild dementia (Perneczky et al., 2006). The MoCA, on the other hand, has been frequently used to differentiate patients with early dementia from those with mild cognitive impairment (MCI) (Freitas, Simoes, Alves, & Santana, 2013) and has good psychometric properties (Sweet et al., 2011). Also scored out of 30, a cutoff below 17 has been used to indicate the presence of dementia (Freitas et al., 2013). The MoCA has high test–retest reliability in PwD (0.877 and 0.665; Freitas et al., 2013) and a higher classification accuracy than the MMSE (Larner, 2012). As both the MMSE and the MoCA enjoy frequent use, we adopted both in this study in order to maximise generalisation of our findings.

General Health Questionnaire (GHQ) The GHQ (Goldberg & Williams, 1988) is a frequently used tool to measure recent psychological distress, which has good psychometric properties (Romppel, Braehler, Roth, & Glaesmer, 2013). The short version employed in this study comprises 12 questions (GHQ12), which include current difficulties with or changes to concentration, confidence, worthlessness and problem management. Items are rated on a 4-point Likert-type scale, where the participant is asked to compare the current level of psychological distress to their usual levels, and thus rate the current experiences as either similar, greater or lower. Scores range from 0 to 36, with higher scores indicating increased levels of stress.

Quality of Life in Alzheimer’s Disease (QoL-AD) The QoL-AD (Logsdon, Gibbons, McCurry, & Terri, 1999), which has been reported to be a reliable tool for measuring QoL in dementia (Hoe, Katona, Roch, & Livingston, 2005), comprises 13 items, which assess the PwD QoL. The questionnaire, which in this study was administered to the carer, covers topics such as social relationships, finances and mood. Each item is scored from ‘1’ (poor) to ‘4’ (excellent), with total scores ranging from 13 to 52 and higher scores indicating improved QoL.

Procedure The assessments, questionnaires and interviews were either administered at the participants’ own home, as long as there was an opportunity to conduct the semi-structured interview in a separate room without the PwD present; or in specialist assessment rooms at the University of Manchester. The study was conducted by a trained researcher (C.M.G.) and lasted between 45 and 60 min, including the cognitive screening. After informed consent was obtained from carers and PwD, the PwD first completed both cognitive screening tools to ensure that they were still eligible to participate (i.e. within the cutoff for mild dementia rating). In the meantime, the carer completed both the QoL-AD and the GHQ-12 and was then administered the R-IDDD. For each activity described as impaired by the carer, the interviewer followed up requesting more specific details regarding the problems encountered.



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If the carer struggled to provide an answer or digressed, the interviewer gently prompted the caregiver for information. With the carers’ consent, the interviews were audio-recorded for subsequent transcription. This study only focused on carer perceptions of everyday functioning to pilot the R-IDDD.

Data analysis The data were analysed using both quantitative and qualitative approaches. For the quantitative analysis, Statistical Package for the Social Sciences Version 20 was used. Demographic characteristics were analysed using frequency analyses. Bivariate correlation analyses were conducted to assess the relationships between functional impairment and cognition, caregiver stress and QoL. This was undertaken with the Initiative and Performance scores for each individual activity and with the total score for the Initiative and Performance scales. Another element consisted of the qualitative analysis of caregiver statements. Using inductive thematic analysis (Braun & Clarke, 2006) without any predetermined hypotheses of possible recurring patterns within the data, carer statements were analysed for IADL impairments and experiences of carer stress. Transcripts were read through for a preliminary review of the data and to generate initial codes. The obtained codes were then categorised under overarching themes and reviewed to produce the final set of themes.

Results Functional impairments Tables 1 and 2 show the number of PwD who displayed deficits in the initiative and performance of daily activities, the mean scores and the strength of the association between activities and measures of cognition, well-being and QoL. Focusing on the first scale of the R-IDDD, a small number of PwD were impaired in initiation. In particular, carers reported that PwD were less inclined to initiate ‘engagement in hobbies’ and ‘maintaining an active social life’. In addition, a large number of PwD were reported to struggle performing activities, such as ‘monitoring the day’, ‘monitoring a current activity’ and ‘medication management’. Finally, difficulties in the performance of ‘following familiar routes’, ‘using the telephone or computer’ and ‘shopping’ were also reported. More basic ADLs, including ‘dressing’, ‘washing’,’ eating’ and ‘using the toilet’, were, as expected, less impaired than most other activities at this relatively mild stage of dementia. When comparing initiation with performance difficulties, it emerged that carers reported reduced initiative to ‘engage in hobbies’ and ‘maintain an active social life’ more frequently than deficits in performing these tasks. These were the only cases where levels of initiation deficits were higher than those for performance.

Performance on quantitative measures and associations between scales Table 3 shows the mean and SDs of the four quantitative measures of cognition (MMSE and MoCA), QoL and carer stress. Of the four scales measuring general cognition, carer stress and QoL, unsurprisingly the MMSE and the MoCA were positively correlated (r(20) ¼ .506, p ¼ .023), but the MMSE was not correlated to GHQ-12 or QoL-AD. In contrast, the MoCA was negatively correlated with the GHQ-12 (r(20) ¼ .470, p ¼ .036), indicating



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Table 1. R-IDDD initiative scores and correlations with scales (N ¼ 20). Initiative a

Activity 1. 2. 3. 4.

Impaired

Washing oneself Making tea/coffee Dressing Brushing hair, teeth, shaving etc. 5. Shopping 6. Using the telephone/ computer 7. Preparing a meal 8. Cleaning house or doing repair work 9. Handling finances 10. Medication management 11. Transportation 12. Maintaining active social life 13. Engaging in hobbies 14. Following familiar routes 15. Following current affairs Initiative total

M (SD)

MMSE

MoCA

GHQ-12

QoL-AD

r(p)

r(p)

r(p)

r(p)

2 1 0 1

.15 .1 0 .1

(.5) (.5) (0) (.5)

.391 (.089) .271 (.248) – .355 (.125)

.051 (.831) .205 (.385) – .133 (.575)

.349 (.132) .120 (.613) – .235 (.318)

.222 (.346) .040 (.868) – .377 (.102)

1 1

.24 (1) .1 (.5)

.321 (.209) .167 (.482)

.308 (.230) .278 (.236)

.259 (.316) .396 (.084)

.236 (.362) .153 (.519)

.137 (.576) .402 (.079)

.160 (.513) .221 (.349)

.221 (.363) .090 (.705)

.195 (.424) .195 (.409)

1 3

.1 (.5) .5 (1.3)

2 4 2 7

.3 .55 .3 1.15

(1) (1.2) (1) (1.7)

.229 .067 .086 .039

(.332) (.780) (.719) (.872)

.117 .239 .413 .062

(.623) (.310) (.070) (.794)

.139 .141 .385 .025

(.559) (.553) (.093) (.917)

.020 .444 .297 .405

(.934) (.050) (.204) (.046)

6 4 1

1 .63 .2 5.35

(1.6) (1.3) (.9) (4.4)

.101 .004 .271 .043

(.673) (.988) (.248) (.856)

.199 .239 .205 .295

(.401) (.324) (.385) (.206)

.245 .098 .120 .094

(.398) (.690) (.613) (.694)

.459 .189 .040 .167

(.042) (.438) (.868) (.481)

Note: R-IDDD: Revised–Interview for Deterioration of Daily Activities in Dementia; SD: standard deviation. Activities in italics were newly added to the original IDDD. Values in bold indicate significant associations. a Values in N (%).

higher levels of carer stress with lower cognitive performance, but not with the QoL-AD. The GHQ-12 was also negatively correlated with the QoL-AD (r(20) ¼ .450, p ¼ .047), indicating that higher levels of carer stress are associated with poorer PwD QoL. A number of significant associations between the scales and individual and total initiative and performance scores were also found (Tables 1 and 2). For cognition, performance scores for ‘telephone and computer use’ was negatively correlated with the MMSE and the MoCA, while the ability to ‘prepare a meal’ was negatively correlated with the MoCA, indicating, as would be expected, that performance difficulties increase with lower levels of cognition. The MoCA was also negatively correlated with the performance total. There were no significant correlations between cognition and initiative scores. With respect to carer stress, the GHQ-12 was positively correlated with the ability to ‘engage in hobbies’ and the ability to ‘follow current affairs’, which indicates higher levels of carer stress with increased performance difficulties. Regarding PwD QoL, the QoL-AD was negatively correlated with the intention to ‘maintain an active social life’ and to ‘engage in hobbies’. This suggests a poorer QoL when PwD lack the motivation to perform these tasks.

Qualitative responses on carer stress Only half of the carer samples were able to identify one single activity whose performance gave rise to most distress. However, in the majority of cases, while carers did not name a



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Table 2. R-IDDD performance scores and correlations with scales (N ¼ 20). Performance a

Activity

Impaired

1. 2. 3. 4.

Washing oneself Making tea/coffee Dressing Brushing hair, teeth, shaving etc. 5. Eating 6. Using the toilet 7. Shopping 8. Using the telephone/ computer 9. Preparing a meal 10. Cleaning house or doing repair work 11. Handling finances 12. Medication management 13. Transportation 14. Maintaining active social life 15. Engaging in hobbies 16. Following familiar routes 17. Following current affairs 18. Monitoring own day 19. Monitoring current activity Performance total

M (SD)

MMSE

MoCA

GHQ-12

QoL-AD

r(p)

r(p)

r(p)

r(p)

2 2 3 3

.25 .25 .4 .35

(.9) (.9) (1) (.9)

.384 .333 .018 .155

(.094) (.151) (.941) (.515)

.093 .270 .413 .091

(.697) (.250) (.070) (.702)

.303 .063 .211 .230

(.194) (.791) (.372) (.329)

.304 .095 .181 .129

(.192) (.689) (.445) (.588)

1 1 7 9

.1 .05 1.06 1

(.5) (.2) (1.4) (1.3)

.271 .355 .021 .558

(.248) (.125) (.938) (.011)

.278 .133 .219 .506

(.236) (.575) (.399) (.023)

.224 .235 .259 .288

(.343) (.318) (.315) (.219)

.229 .377 .123 .240

(.332) (.102) (.637) (.307)

6 4 7 12 6 2 5 8 6 12 10

1 (1.6) .45 (1) 1.31 1.8 1 .3 .9 1.05 .85 1.74 1.68 15.1

(1.8) (1.7) (1.6) (1) (1.6) (1.5) (1.4) (1.7) (1.7) (12.7)

.311 (.194) .056 (.814) .254 .104 .029 .372 .141 .041 .429 .125 .151 .244

(.294) (.663) (.904) (.107) (.553) (.863) (.059) (.611) (.536) (.300)

.593 (.008) .059 (.805)

.306 (.203) .001 (.996)

(.003) (.285) (.332) (.361) (.442) (.684) (.183) (.277) (.857) (.033)

.240 (.322) .012 (.960) .055 (.817) .176 (.459) .501 (.025) .156 (.510) .651 (.002) .343 (.151) .206 (.398) .261 (.267)

.635 .252 .229 .216 .182 .097 .311 .263 .044 .478

.104 (.672) .266 (.256) .378 .071 .115 .158 .219 .069 .397 .189 .200 .243

(.110) (.768) (.630) (.505) (.354) (.773) (.083) (.437) (.411) (.301)

Note: R-IDDD: Revised–Interview for Deterioration of Daily Activities in Dementia; SD: standard deviation; MMSE: MiniMental State Examination; MoCA: Montreal Cognitive Assessment; GHQ-12: General Health Questionnaire-12; QoL-AD: quality of life-Alzheimer’s disease. Activities in italics were newly added to the original IDDD. Values in bold indicate significant associations. a Values in N (%).

Table 3. Mean values of cognition, carer stress and PwD QoL.

MMSE MoCA GHQ-12 QoL-AD

M

SD

Range

23.6 19.9 12.1 30.1

2.26 3.27 4.1 6.2

21–27 13–26 6–21 21–42

Note: SD: standard deviation; MMSE: Mini-Mental State Examination; MoCA: Montreal Cognitive Assessment; GHQ-12: General Health Questionnaire-12; QoL-AD: quality of life in Alzheimer’s disease. All values are based on n ¼ 20.

specific activity, they did describe other changes associated with the daily behaviour of the PwD as stress inducing. When carers referred explicitly to an IADL, the activity was generally of a mechanical nature, such as ‘dressing’ or ‘handling finances’. Stress in carers was also reported to be brought on through changes in the behaviour of the PwD, such as



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becoming very assertive in arguments and being verbally aggressive if challenged. For other carers, it was not a specific activity that was reported as stressful but the overall impact of caring on their own lives, as a result, for instance, of having reduced leisure time.

Discussion This study explored, in detail, the IADL deficits displayed in mild dementia, and the relationship between these deficits and cognition, carer stress and PwD QoL. For this purpose, the original IDDD (Teunisse et al., 1991) was revised to encompass a greater number of activities not purely focusing on more traditional IADLs. Although performance on only a few activities were found to be significantly related to cognitive performance, carer stress and PwD QoL, those that were, supported our hypothesis in that poorer IADL performance was significantly associated with poorer cognition and QoL and heightened levels of carer stress. Of particular note is the finding that only changes in those IADLs reflecting the PwD personality and social engagement were associated with carer stress and PwD QoL. Findings have to be considered in the absence of reliability or validity assessments of the R-IDDD, yet supportive evidence for the further adaptation of the original IDDD has emerged (Voigt-Radloff et al., 2012). Focusing on the levels of impairment in individual activities, several differences have emerged both across activities and between the initiative and performance of activities. The observed dissociation between initiative and performance is supportive of our hypothesis, and stresses the deficits experienced in the performance of activities, whilst less so in their initiation. Previous evidence on mild-to-moderate dementia patients indicated dissociations between these two components of everyday activity, yet without a clear pattern emerging as to which was more impaired (Teunisse et al., 1991; Voigt-Radloff et al., 2012). As social activities, on the other hand, were found to be more subject to initiation deficits, understanding the separation between initiative and performance is important when developing interventions to improve or maintain certain levels of IADLs in mild dementia. If PwD predominantly struggle with IADL performance, training needs to be developed and implemented that retrains the PwD on these skills. By contrast, with the more social activities, interventions are required to address the initiative to engage in these. Whilst this study addressed carer perceptions only, future research should explore whether these deficits in social activities are also reported by PwD. This would allow exploring the underlying reasons for lacking the initiative to perform social activities, if PwD indeed would provide similar reports to carers. Considering the evidence on discrepancies between carer and PwD ratings (Conde-Sala et al., 2014; Graeske, Fischer, Kuhlmey, & Wolf-Ostermann, 2012), it is of interest to discern whether PwD similarly perceive fewer deficits in social activities than their carers. The relationship of IADL initiation and performance to well-being is also of importance when seeking to understand the detrimental effects that IADL deficits may pose. In particular, the relationship between carer stress, PwD QoL and the more social IADLs emerged for ‘engaging in hobbies’, ‘maintaining an active social life’ and ‘following current affairs’. Importantly, these social IADLs represent an integral part of everyday life but they are not so obviously critical to functional independence as ‘doing the laundry’ or ‘managing finances’. Although these socially focused activities were reported as less impaired than ‘medication management’ or the ability to ‘monitor the day or a current activity’, their impairment was linked to higher levels of carer stress and poorer



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PwD QoL. Little, if any, evidence exists to explain how the lack of engagement in the more socially relevant IADLs is associated with carer stress and PwD QoL. However, work by Welleford, Harkins, and Taylor (1995) found a positive relationship between personality changes, which influence social behaviour and PwD and caregiver burden. In particular, changes to the PwD neuroticism and conscientiousness had an effect on the level of carer burden. Furthermore, engaging together with family carers in a singing group was found to raise levels of well-being in both PwD and carers (Camic, 2013). Consequently, when assessing IADL performance and planning and designing interventions and support programmes, we must recognise that while the more instrumental and elementary tasks remain important in retaining independence, tackling reductions in the initiation and pursuit of social activities should be a major focus, as this will benefit both PwD and carers. One explanation for this relationship and the importance of these types of IADLs for well-being could be the anticipatory grief experienced in carers. Anticipatory grief in the context of caring for dementia is a concept that has received increasing attention over the last decade (Garand et al., 2012; Holley & Mast, 2009; Marwit & Meuser, 2005; Noyes et al., 2010; Pearlin, Mullan, Semple, & Skaff, 1990). When a loved person receives a diagnosis of dementia, family and friends have to come to terms with the diagnosis and its associated effects on their daily life and relationships. This is captured in the stress process model for carers (Pearlin et al., 1990), which describes how both primary stressors, including changes to cognition and functioning, and secondary stressors, including role restraints and loss of self, impact on carer well-being. It is therefore the personal loss and change to the relationship quality, which also includes loss or changes to the social aspects to one’s personality that has a highly detrimental impact on carers (Garand et al., 2012; Holley & Mast, 2009; Marwit & Meuser, 2005). Consequently, our newly introduced IADLs such as ‘engaging in hobbies’ will reflect these personality changes better than ‘doing the laundry’, and are captured as secondary stressors in Pearlin, Mullan, Semple, and Skaff’s (1990) model. It is therefore clear that careful consideration of the effects of social IADLs is imperative and future research needs to consider social IADLs much more closely, both in the assessment of everyday activity performance and in relation to PwD and carer well-being. Of particular interest and relevance is the finding that on reviewing the qualitative carer statements, carers reported more traditional IADLs to be perceived as most stressful. Carers who were able to identify one specific activity, which was most stress inducing, identified activities such as ‘dressing’ or ‘handling finances’. Therefore, there is clear tension between the message produced by the qualitative interviews and that produced by the quantitative questionnaire data. One reason for this may be that carers typically tend more to associate functional problems with the more traditional everyday activities rather than with those relating to social engagement. However, in this study, carers were only asked to identify a key single activity after they were interviewed about all IADLs included in the R-IDDD and they were therefore aware of the breadth of IADLs they could select from. It remains possible, however, that carers may either have had too little time to absorb the implications of the previous reference to more socially relevant IADLs or indeed might (knowingly or unknowingly) find reference to the more social IADLs uncomfortable or too upsetting to discuss easily, or even too difficult to put into words. Further research will be critical to our understanding of this. Whatever the reason for the tension between the findings, the critical take-home message, which is twofold, highlights that the early demise of socially related activity in PwD has a clear negative impact on their carer’s



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well-being, and that carers may be unaware of the significance and impact of this behavioural change. A key aim of this study was to explore the relationship between overall cognition and everyday function in order to attempt to characterise the cognitive factors that underpin functional change. This study used two measures of overall cognition, the MMSE and the MoCA; the former being most widely used to date, and the latter perhaps offering a scale that is more sensitive to the earlier cognitive changes in dementia. However, our results suggest that overall cognitive performance only explains deficits in everyday function for a few activities. Interestingly, performance on the MoCA was more often correlated with everyday function than was performance on the MMSE. This is likely to be because the MoCA is more sensitive to subtle changes in cognition and offers the spread of data that is required to identify meaningful associations. Indeed, the MoCA was developed as a tool to differentiate MCI from dementia (Nasreddine et al., 2005), while the MMSE was originally developed (Folstein et al., 1975) to differentiate between the different stages of dementia, and therefore lacks sensitivity at the top end of the scale. Although previous studies have shown significant relationships between performance on the MMSE and IADL and ADL performance (Rajan, Hebert, Scherr, Mendes de Leon, & Evans, 2013), the MoCA is probably more appropriate for use in the early stages of dementia, where only some areas of cognition are impaired and where impairment is more subtle.

Conclusion In summary, this study offers a new and revised version of the IDDD interview schedule; the R-IDDD. This revised assessment tool should be used for research into the early changes in IADL and its impact on PwD and carers as well as in the evaluation of support needs and delivery of advice to carers and PwD. Further research however should test the reliability and validity of the R-IDDD. The study adds to the sparse evidence regarding detailed IADL performance in early dementia, by focusing on the distinction between the initiation and performance of these activities. Furthermore, by focusing on the relationship between individual IADLs and cognition, carer stress and PwD QoL, the study suggests that maintaining activities associated with social engagement could be central to limiting carer burden and stress and maintaining better PwD QoL, according to carer reports. The next step would be therefore to explore PwD’ perceptions of their own initiative and performance deficits to compare these against carer reports. Gaining a more detailed understanding of deficits in individual IADLs and their relationship to carer stress and PwD QoL, will guide the development of interventions aimed to limit PwD IADL deficits, and in doing so, will allow PwD to remain independent for longer, to maintain a better QoL and consequently will greatly reduce carer stress. Conflicts of interest None to declare.

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Clarissa M Giebel, MSc, BSc has a background in cognitive psychology and dementia. She started working at the Personal Social Services Research Unit Manchester in 2011, where she has been working since as a research assistant on several projects in the field of dementia, and on a project on the psychological well-being of military veterans. She is currently also studying for her PhD in cognitive neuropsychology at the University of Manchester, looking at the relationship between cognition and everyday functioning in early dementia. David J Challis, PhD, MSc, BA is a professor of community care research, director of PSSRU, University of Manchester, associate director of the National Institute for Health Research (NIHR) School for Social Care Research, NIHR Senior Investigator and has an Honorary Contract with Manchester Mental Health and Social Care Trust. He is responsible for a range of research studies and policy evaluations in health and social care in the UK and other countries. Daniela Montaldi, PhD, MSc, BA is a professor of cognitive neuroscience at the University of Manchester. She specialises in neuroimaging and memory research, thereby particularly focusing on the distinction between familiarity and recollection. She also has expertise in dementia research, and she holds grants from the Wellcome Trust, amongst others. Recent projects include medial temporal lobe functioning as well as memory function in childhood cancer survivors.


Assessment of instrumental activities of daily living in dementia: diagnostic value of the Amsterdam Instrumental Activities of Daily Living Questionnaire.

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Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study.