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Coping by the carers of dementia sufferers.

Summary

One hundred and nine of 125 patients from consecutive referrals to a clinical service had an informal carer in contact at least once a week. Thirty-two of the carers had major or minor depression. The active management strategy being firm in directing behaviour' was significantly inversely associated with depression amongst carers living with the dementia sufferers, whilst carers who prioritized their daily routines were significantly more likely to be depressed. The active psychological coping strategy `constructing a larger sense of the illness' was also significantly inversely associated with depression amongst carers living with the patients and 'reduction of expectations' showed a trend in the same direction. There were no significant differences between the coping strategies used by men and women.

The type of coping strategy used by carers has an important relationship with depression. Active practical and Psychological strategies were of benefit to carers and this has important treatment implications.

Introduction

The carers of dementia sufferers have a high prevalence rate of depression, probably between 30% and 50% [1, 2]. There hag been much discussion of the stressful nature of care-giving, for example by Rabins et al. [3]. Although many potential stresses have been identified, few of these have a significant association with depression [4] and it seems that stressful situations per se are not sufficient to explain why some carers become depressed whilst others do not.

Using a stress/coping conceptual model of caregiving, it has been postulated that coping strategies may be intermediate variables [5]. There is an anecdotal literature, discussed by Hayley et al. [6], suggesting that people using more active coping strategies, such as problem solving, experience fewer symptoms of depression, and that carers who rely on more intrapsychic and passive strategies are more likely to be distressed [7]. The majority of studies have relied upon impressionistic descriptions of coping strategies by carers. In addition, they describe associations with depressive symptoms rather than depressive illness. There is some evidence that male carers are less likely to suffer distress [4]. It has been suggested that coping strategies involving a problem-solving orientated approach may be relevant [8].

Pearlin et al. [9] have produced a Carers' Stress Scale which assesses various components of the coping/stress model for care-giver stress and which includes three sections describing coping behaviour. The first section deals with the management of situations, the second with management of the meaning of the situation and the third with management of the carer's own distress. The study reported here used the Carers' Stress Schedule to investigate whether any of these strategies are positively or inversely associated with depression and compared the coping strategies used by men and women.

Method

Consecutive referrals to four old-age psychiatry services in the West Midlands and a memory clinic in Bristol were reviewed. The study aimed to investigate symptoms of depression and psychosis in dementia sufferers as well as depression in their carers, and therefore omitted subjects with severe dementia who would not be able to give a meaningful interview regarding their own psychiatric morbidity. All patients over 65 years of age who fulfilled the CAMDEX criteria for mild or moderate dementia [10] and who had an informant in contact at least once a week were selected. Eligible patients and their carers were asked if they wished to participate in the study. The informants were considered to be informal carers if they were family members or friends and undertook tasks at least once a week. A comprehensive assessment was completed which included a Geriatric Mental State Schedule interview for the carers [11]. Diagnoses were made according to Research Diagnostic Criteria (RDC) [12]. Information regarding coping strategies used by the carer was obtained from sections L, M and N of the Carers' Stress Scale

[9] concerning management of situations, management of meaning and management of stress respectively (Table). As recommended in the original paper [9] the management of situations was considered as a separate item. Management of meaning was considered in sub-groups of reduction of expectation, making positive comparisons and construction of a larger sense of the illness. The details of the coping strategies placed in these categories are shown in the Appendix. Each individual item was rated on a scale of 1-4 as described in the original paper. Demographic data including carer sex were collected on the History and Aetiology Schedule [13].

Statistical analysis was undertaken with the SPSS programme [14]. The various coping strategies were compared between carers with and without RDC depression amongst those who lived with the dementia sufferer, using a logistic regression analysis with a stepwise technique. The Wald statistic and p values are reported. The same statistical method was used to compare the coping strategies of men and women in the total sample.

Results

One hundred and thirty-nine patients and their carers were approached of whom 125 (90.5%) were recruited into the study. One hundred and nine of these patients had an informal main carer. Of the 109 carers interviewed, 57 (52%) were 65 years of age or over, 68 (62%) were women and 41 (38%) men. Sixty-two (56.9%) carers lived with the dementia sufferer, 46 (42%) were marital partners, 42 (39%) were children, 5 (4.6%) were siblings and the remaining 16 (14.7%) were either more distant relatives or friends. Thirty-two (29.4%) of the carers fulfilled the RDC for depression, 25 were women, 9 were men and 21 (66%) were living with the dementia sufferer; 8 had RDC major depression and 24 had minor depression.

The percentages of carers employing each coping strategy are shown in the Table. The results show that strategies to deal with the meaning of the illness identified in the schedule were commonly used by carers. Amongst the carers who lived with a dementia sufferer, a number of coping strategies were positively or inversely associated with depression. Details of the results are shown in the Table. Concerning strategies relating to the management of situations, 'Try to be firm in directing your relative's behaviour' was significantly inversely associated with depression (Wald 4.49, p = 0.03), and 'Try to find ways of keeping your relative busy' showed a strong trend towards a similar significance (Wald 2.51, p = 0.06). `Try to do the things you have to do and let other things slide' was significantly associated with depression (Wald 4.99, p = 0.03) whereas the last strategy in this group concerning education about dementia showed no significant association (Wald 1.81, p = 0.18).

[TABULAR DATA OMITTED]

In regard to the management of meaning strategies, `Construction of a larger sense of the illness' was significantly inversely associated with depression (Wald 12.36, p = 0.0004) and Reduction of expectations' showed a trend towards the same (Wald 3.00, p = 0.08). None of the management of distress items showed a positive or negative association with RDC depression.

There were no significant differences between men and women for any of the strategies. The results are shown for the coping strategies C1-15 as described in the Table: C1 Wald (W) = 0.36, p = 0.55; C2 W = 0.59, p = 0.44; C3 W = 0.00, p = 0.95; C4 W = 0.00, p = 0.95; C5 W = 0.01, p = 0.65; C6 W = 1.65, p = 0.20; C7 W = 0.97, p = 0.33; C8 W = 0.38, p = 0.54; C9 W = 0.20, p = 0.65; C10 W = 1.31, p = 0.25; C11 W = 0.06, p = 0.81; C1 2 W = 0.01, p = 0.92; C13 W = 0.00, p = 0.96; C14 W = 0.11, p = 0.74; C15W = 2.35, p = 0.12.

Discussion

The carers and patients included in this study were in contact with clinical services, most having been referred within the previous 3 months. The sample is not therefore representative of dementia patients and their carers in the community and may represent a sample of people more likely to be in crisis. The sample size was small but it was comprehensively assessed using standardized schedules. Depression in the carers was diagnosed according to the GMS AGECAT, an instrument usually reserved for people over the age of 65, although it includes all the items necessary to make an RDC diagnosis. Furthermore, the concurrent validity between the AGECAT and RDC criteria was high, with 96.9% of AGECAT cases fulfilling the criteria for RDC major or minor depression [15].

The results show that coping strategies were important mediators of depression amongst carers living with a dementia sufferer. It is useful to consider the strategies identified in the schedule within different models of both care-giving and the development of depressive symptoms. Using a stress/coping conceptual model, coping strategies are seen as potential intermediate variables [10]. Those who use more active coping strategies experience less depression. An alternative model, such as a theoretical existential 'finding framework [16] suggests that active intrapsychic coping strategies which address major themes involved in care-giving can contribute to more positive aspects of care-giving. Such themes include loss, powerlessness, meaning and value and suggest a cognitive model for the formation of depressive ideas [17], including the concept of learned helplessness [18]. Rotter's [19] ideas of `locus of control' which indicate how much a person feels at the mercy of circumstances and therefore powerless or helpless may also be of relevance in understanding why certain strategies are associated with increased depression.

When the `management of situation' items are considered from this perspective, the associations with depression become more apparent. Firmness in directing relatives' behaviour and keeping them busy indicates control and mastery of the situation and is inversely associated with depression, whereas `do the things you want to do and let the other things slide' reflects a high degree of powerlessness, helplessness and external locus of control. It is interesting, therefore, that it is significantly associated with depression.

`Management of meaning' strategies can also be interpreted within such a framework. Those who have reduced expectations show an inverse relationship to depression. This could be interpreted as a more successful working through of loss and powerlessness, whereas `construction of a larger sense of the illness' in the terms of the rating scale (praying for strength to keep going, and reminding yourself that this is something to expect as people get older) may imply powerlessness and helplessness and are significantly associated with depression.

In contrast, none of the items in the management of distress section is significantly associated with depression. In general, these strategies do not directly appear to address psychological mechanisms thought to be involved in depression, although they may do so indirectly; spending time alone, for example, provides opportunities for reflection or undertaking activities that may make it easier to cut off from feelings and thoughts.

Almost 10% of carers in the current sample admitted to taking alcohol occasionally or frequently to reduce their distress. It is likely that a number of other carers consumed alcohol as a method of managing their own stress but were reluctant to disclose this as an adopted strategy. Recent studies have shown that increased alcohol consumption in carers is associated with an increased prevalence of elder abuse [20] which makes this a particularly sensitive topic.

Previous studies have suggested that male carers adopt better coping mechanisms. The results from this study do not support a sex difference in the use of coping mechanisms although the numbers are not sufficiently large to exclude the possibility of a type 11 error. More women than men suffered from RDC depression, but the difference in prevalence rates of depression between the sexes is probably related to factors other than coping mechanisms.

Intervention studies to reduce carer distress have not in general reported a high degree of success [21]. Perhaps interventions which offer the opportunity to explore and therefore resolve some of the negative cognitions and difficult emotions surrounding issues of powerlessness, helplessness, grief and loss as well as providing education and more generalized positive coping strategies, would be of benefit. Hayley et al. [6] did not find that a support group aiming to promote psychological and practical skills significantly reduced symptoms of depression. This type of programme may be costly in time and resources, and will need to be carefully evaluated to discover if such an approach can contribute to the reduction of depression in the carers of those with dementing disorders.

References

[1.] Pagel MD, Becker J, Coppel DB. Loss of control, self blame and depression: an investigation of spouse caregivers of Alzheimer's disease patients. J Abnormal Psychol 1985;94:169-82.

[2.] Schulz PV, Williamson GM. A 2 year longitudinal study of depression amongst Alzheimer caregivers. Psychol Ageing 1991;6:569-78.

[3.] Rabins PV, Mace HL, Lucas MJ. The impact of dementia on the family. JAMA 1982;248:333-5.

[4.] Morris RS, Morris LW, Britton PG. Factors affecting the emotional well being of the caregivers of dementia sufferers. Br J Psychiatry 1988;153:147-56.

[5.] Williamson GM, Schulz R. Coping with specific stressors in Alzheimer's disease caregiving. Gerontologist 1993;33: 747-55.

[6.] Hayley WE, Brown SL, Levine EG. Experimental evaluation of the effectiveness of group intervention for dementia caregivers. Gerontology 1987;27:376-82.

[7.] Pruchno RA, Resch NL. Husbands and wives as caregivers: antecedents of depression and burden. Gerontology 1989;29:159-65.

[8.] Zarit SH, Zarit JM. Families under stress, interventions for caregivers of senile dementia patients. Psychother Theory Res Pract 1982;19:461-71.

[9.] Pearlin LI, Mullen JT, Semple SJ. Caregiving and the stress process: an overview of concepts and their measures. Gerontology 1990;30:583-94.

[10.] Roth M, Huppert FA, Tym E, Mountjoy CQ. CAMDEX: a standardised instrument for the diagnosis of mental disorder in the elderly with special reference to the early detection of dementia. Br J psychiatry 1986;149: 698-709.

[11.] Copeland JRM, Kelleher MJ, Kellet JM. A semi-structured clinical interview for the assessment of diagnosis and mental state in the elderly: The Geriatric Mental State Interview. Development 1976;6:439-49.

[12.] Spitzer RL, Endicott J, Robins E. Research diagnostic criteria; rationale and reliability. Arch Gen Psychiatry 1978;35:73-82.

[13.] Dewey ME, Copeland JRM, Lobo A, Saz P, Dia JL. Computerised diagnosis from a standardised history schedule: a preliminary communication about the organic section of the HAS AGECAT system. Int J Geriatr Psych 1992;7:443-6.

[14.] SPSS/PCT. Statistical Package for the Social Sciences. Chicago: SPSS, 1988.

[15.] Coope B, Ballard C, Saad K et al. The prevalence of depression in the carers of dementia sufferers. Int J Geriatr Psych 1995;10:237-42.

[16.] Farran CJ, Keane-Hagerty E, Salloway S, Kupferer S, Wilken CS. Finding meaning: an alternative paradigm for Alzheimer disease family caregivers. Gerontology 1991;31:483-9.

[17.] Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive therapy of depression. New York: Guildford Press, 1979.

[18.] Seligman MEP. Helplessness San Francisco: Freeman, 1975.

[19.] Rotter JB. Generalised expectancies for internal v external control of reinforcements. Psychol Monogr 1966;80.

[20.] Brodaty H, Roberts K, Peters K. Quasi-experimental evaluation of an educational model for dementia caregivers. Int J Geriatr Psych 1994;9:193-205.

[21.] Homer AC, Gilleard CJ. Abuse of elderly people by their carers. Br Med J 1990;301:1359-62.

Appendix. Subgroups of management of meaning

1. Reduction of expectations a. Try to accept your relative as he/she is, not as you wish he/she could be b. Try to think about the present rather than the future c. Try to keep your sense of humour

2. Making positive comparisons a. Remind yourself that others are worse off b. Try to think of the good times you had in the past c. Look for the things you always admired in your relative

3. Construction of a larger sense of the illness a. Try to make sense of the illness b. Pray for strength to keep going c. Remind yourself that this is something to expect as people get older.
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Author:Saad, K.; Hartman, J.; Kurian, M.; Graham, C.; Wilcock, G.; Ballard, C.
Publication:Age and Ageing
Date:Nov 1, 1995
Words:2645
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