INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, VOL. 10: 23 1-236 (1995)

CARER-RATED PERSONALITY CHANGES ASSOCIATED WITH SENILE DEMENTIA

RHODA WILLIAMS Southampton General Hospital. Southampton. UK

ROGER BRIGGS Professor of Geriatric Medicine, Southampton General Hospital, Southampton, UK

PETER COLEMAN Professor of Social Gerontology, Southampton General Hospital, Southumpton, UK

SUMMARY

Although adult personality traits have been shown to be stable with age, a recent study in the USA showed changes in a group of elderly people with memory disorders, as perceived by caregivers. The aim of this study was to replicate these findings in individuals suffering from senile dementia and to examine interactions with other emotional and physical stresses experienced by the carer. Thirty-six subjects caring for an elderly person with dementia were visited twice in their own homes to assess the problems they had and how they were coping with them. NEO Personality Inventories were used to identify perceived personality changes. Individuals with senile dementia were regarded as becoming more neurotic, less extravert and less conscientious. These personality changes had more effect on carer morale than the physical burden of caring.

KEY woms-Personality, neuroticism, extraversion, conscientiousness, dementia, caregivers.

Personality has been defined as ‘the individual characteristics and ways of behaving that, in their organisation or patterning, account for an indivi- dual’s unique adjustment to his or her total environment’ (Hilgard et al., 1979).

Personality traits develop and mature through- out childhood and early adult life but, once estab- lished, alter little with normal ageing processes (Costa and McCrae, 1988; Digman, 1990). How- ever, personality changes have long been recog- nized in dementing disorders, subtle changes in affect often being among the first clinical signs of the disease (Liston, 1979; Siegler et a[., 1991).

A study was recently completed in America which successfully documented such personality changes in a group of elderly people with memory disorders (Siegler et af., 1991), using a personality trait system, ‘The Big Five’, which has gained

Address for correspondence: Professor Roger Briggs. Geriatric Medicine, Centre Block, Level E, Southampton General Hospi- tal, Southampton SO16 6YD, Uk. Tel and Fax: 0703 796134.

increasing recognition over the last four decades (Digman, 1990). This system categorizes persona- lity into five traits: neuroticism, extraversion, open- ness, agreeableness and conscientiousness (Fig. 1 ). A personality inventory, the NEO Personality Inventory (NEO-PI), developed in the United States by Costa and McCrae (1988), was used to carry out this research since it adequately covers all five domains of personality characteristics, has been shown to be stable across all adult ages in any normal population, and has been developed in a form which can reliably be completed by a carer on behalf of a person with a memory disorder.

Using the NEO-PI, Siegler and colleagues ( 199 1 ) found elderly individuals after developing memory disorders to be described as significantly more neur- otic, much less extravert and much less conscien- tious than before. The aim of our study was to replicate these findings in the UK and to investigate how perceived changes in the demented individual’s personality interact with the other emotional and physical stresses inflicted on the carer.

CCC 0885-6230/95/03023 1-06 0 1995 by John Wiley & Sons. Ltd

232 R. WILLIAMS, R. BRlGGS AND P. COLEMAN

Measures of Observed Personality The "Big Five" Domains of Personality

b N Neuroticism

b E Extraversion

0 Openness

A Agreeableness

anxiety vulnerability

gregariousness activity

aesthetics values

altruism trust

competence C Conscientiousness

Fig. 1. The domains of personality measured by the NEO-PI

METHOD

Those participating in this study were selected from the Southampton Elderly Mental Health Com- munity Services lists by visiting all of the com- munity psychiatric nurses (CPNs) working in the city of Southampton (population c. 200 000), listing all those on their current working files who were suffering from dementia and contacting their desig- nated main carer.

The carers were initially sent a letter including a brief summary of the project and details of what was required of them along with a consent form and a stamped addressed envelope. Those who agreed to participate were contacted by telephone to arrange an interview date at a time convenient to them.

A total of 71 introductory letters were sent out. Fifty-four replies were received, a response rate of 76%. Of these 17 (31%) did not wish to take any part in the investigation. Although 37 people agreed to take part, one of these when visited proved to be an unsuitable subject (this participant was caring for her husband who had Parkinson's disease rather than dementia). The final sample therefore contained 36 subjects, only 51% of those originally contacted.

This problem was discussed with four of the CPNs who provided the names and addresses of subjects for the study; they were able to supply

some information on those who had not replied or did not wish to be included in the study. The demented relatives of three of the carers in this category had died, while five others had either gone into full-time residential care or were about to do so. A similar number of carers were adult children and the CPNs suggested that they might have too many family or job commitments to enable them to make time to participate. This would explain why there are relatively few adult child carers in the study. The CPNs admitted that two or three of the other subjects unwilling to take part were having difficulties caring and one was himself in hospital. For the rest, the CPNs expressed surprise that these carers had not replied or where unwilling to take part and could think of no adequate reason. All four CPNs felt that the subjects taking part in this project were representative of the majority of carers.

Subjects were interviewed in their own homes and the interviewer was the same for every subject. In order to standardize the information gathered, a preprepared interview schedule was used to assess the problems faced by carers and how they coped with them. Each subject was asked to complete the 28-question version of the General Health Ques- tionnaire (Goldberg and Williams, 1988) to assess carer morale.

At the end of the interview each subject was given a NEO Personality Inventory (NEO-PI) to com-

PERSONALITY CHANGES IN DEMENTIA 233

Observed Personality Change Personality Scale

Change T-Test

+ Normal

+Premorbid

*Present

N E 0 A

Personality Category

Fig 2. Changes in NEO-PI perceived by carers: mean scores for dependants before onset of dementia and at time of study

plete at their leisure. The short 60-question version of the NEO-PI was used and subjects were asked to complete it twice, first to describe the dependant as they were at the time of interview and then again as they were before they became confused. Subjects were instructed to think back 10-15 years or to when they first knew the dependant, in order to exclude the period of gradual deterioration before it was realized there was anything wrong. A time was arranged, usually in the following week, for a second home visit to pick up the completed inven- tories.

The personality inventories were completed by 34 (94%) of those in the investigation, often with some help from the interviewer (during the second interview) or relatives. Two people were unable to complete the inventories even with help. One of these was an elderly spouse who was unable to dif- ferentiate between her husband as he had been and as he was at the time of interview. The other was a 24-year-old woman caring for an elderly lady who had been a lodger in another house she owned; in this instance the carer had no knowledge of the former character of the person in her care.

All the dependants had been assessed by a psy- chiatrist as suffering from dementia before being referred to the CPNs. No formal attempt was made to ascribe a pathological diagnosis as the underly- ing cause of dementia. The carers estimated the mean duration of ‘caring’ as a little over 3 years; the average age of the dependants was 77 years

(range 5 4 9 6 years). Many of them were severely demented, with 58% unable to hold a sensible con- versation and 50% unable to recognize relatives.

RESULTS

Of the 36 people who were successfully interviewed, 26 were spouses (1 3 husbands, 13 wives), seven were adult children (five daughters caring for mothers, one for her father and one son caring for his mother), one lady caring for her sister and two landladies caring for people who had previously been lodgers in their houses.

The mean scores of the personality inventory for the dependants with dementia are shown in Fig. 2. The NEO Personality Inventory scoring system is designed such that, once corrections have been made for differences in sex, for any given ‘normal’ population the mean value in each personality domain will be 50 irrespective of age. The results for premorbid personality in this study show that, despite the fact that carers were giving a perceived rating on personality characteristics remembered from years before, the mean values in the domains of neuroticism, extraversion and conscientiousness were very near 50. The mean values for openness to experience and agreeableness were slightly lower than 50; this could be due to cultural variations since the NEO-PI was researched and developed entirely in the United States. Only with more exten-

234 R. WILLIAMS, R. BRIGGS AND P. COLEMAN

Range of Observed Personality Change

Amount of Personality Change

-80 ‘ 1 Range N E 0 A C

- Mean Personality Domain

Fig. 3. Ranges (and means) of changes in NEO-PI perceived by carers

sive use of the NEO-PI in England can any such cultural differences be confirmed. Varimax rotatio- nal factor analysis with five factors showed the NEO Personality Inventory to have a definite five- factor structure reflecting the questions on the five domains of personality, thus validating this inven- tory.

When the inventory was repeated, carers being asked to describe the dependant ‘as they are now’, the results were very different. The greatest change was a decrease in conscientiousness, which became too low to measure on the ‘normals’ scale (T-value- 1 1.46, p < 0.001). However, extraversion also fell to the extreme of the ‘normals’ scale (T-value-6.49, p < O.OOl), while there was an increase in neuroti- cism into the high ‘normals’ range (T-value 6.52, p < 0.001).

The ranges of personality changes are shown in Fig. 3. It is interesting to note that in the three domains of greatest mean change (neuroticism, extraversion and conscientiousness), most of the individual changes are in one direction, while in the domains of openness and agreeableness the changes go in both directions so that there is little mean difference. There was no significant gender difference in personality changes.

Statistical measures of association showed that changes in the personality of the individual with dementia had a greater detrimental effect on the

morale of the carer (Spearman correlation 0.397, p 0.02) than the physical problems associated with dementia, which showed no correlation (Spearman correlation 0.003). Despite this, carers looking after individuals with a lot of physical needs received more help from community services (Spearman correlation 0.447,p.006) than carers with poor mor- ale (Spearman correlation 0.140).

DISCUSSION

The fact that the mean values for premorbid perso- nality were so near 50, the expected average for the ‘normal’ population, suggests that the persona- lity inventories were being completed satisfactorily by the carers. The changes in personality associated with dementia found in this study are very similar to those in the American study on personality changes in elderly people with memory disorders (Siegler et al., 1991). Both studies showed signifi- cant increases in neuroticism and marked falls in extraversion and conscientiousness irrespective of sex, cause of dementia and premorbid personality type.

The question of what causes the perceived per- sonality changes associated with dementia remains to be addressed. Neither study took into account the personality traits of the carer who completed

PERSONALITY CHANGES IN DEMENTIA 235

the personality inventory, traits which may have been projected onto the person in their care or may have affected the carer’s interpretation of the dependant’s behaviour.

The issue of whether carers can accurately report, retrospectively, the symptoms of patients with memory disorders is an important one (Brooks and McKinlay, 1983). The task of caregiving might influence the carer’s perceptions of the dependant. The ideal study would follow populations longitu- dinally, before and after the onset of dementia, ena- bling comparisons of ratings made by both carer and dependant at different time-points. Such stu- dies would be difficult to implement.

The personality changes which accompany dementia have been ascribed to degeneration of dis- crete areas of the brain (Mortimer, 1988). It would seem logical, for example, that as memory fails aspects of ‘conscientiousness’ would also become less reliable. However, Siegler and colleagues (1991) found similar changes in perceived persona- lity irrespective of the cause of memory disorder.

Personality changes may be a way of adapting in order to cope with living with memory loss. The ‘disengagement theory’ of ageing (Cumming and Henry, 1961) suggests that elderly people only interact with their surroundings to the extent that they can cope with the physical and intellectual demands made upon them. The memory loss asso- ciated with dementia might cause this process of gradual ‘disengagement’ to become accelerated and exaggerated. This could explain why with normal ageing there is a tendency towards introversion, but not the much greater degree of introversion found in our dementing subjects.

Kitwood (1990) argues that some of the deterio- ration in habits, cerebral function and personality which accompanies dementia may be caused by the negative influences of society, what he calls ‘malig- nant social psychology’. The vulnerability of the dementing person increases as they become reliant on the care of others; as some of the things happen- ing around them are misunderstood, anxiety and distrust develop.

The perceived changes in personality found in our study could also be due to the exaggeration of preexisting characteristics rather than the emer- gence of new ones, as the appreciation of social niceties is lost.

Confounding factors such as the effect of pres- cribed drugs must also be considered. Two-thirds of the dementing subjects were taking some form of sedative or behaviour-modifying drug (Table 1).

No systematic analysis is feasible, given the small numbers of subjects on any drug. At the time of the study, 31% of subjects were described by carers

Table 1. Psychotropic drugs prescribed for dementing subjects

Amitriptyline Diazepam Flupenthixol Haloperidol Lithium Lofepramine Nitrazepam Thioridazine Trifluoperazine Trimipramine

as ‘occasionally aggressive’, and more subjects had been aggressive prior to the establishment of a suit- able drug regime. It might be argued that psycho- tropic drugs contributed to the decline in subjects’ extraversion, and prevented a significant fall in agreeableness. We would suggest that psychiatrists are more likely to respond to a change in a patient’s behaviour than to preempt it, but only longitudinal studies could resolve the interaction between medi- cation and personality.

Whatever the causes of the personality changes accompanying senile dementia, they undoubtedly contribute greatly to the overall burden of caring for such an individual and are a major determinant of carer morale. Our findings suggest that services may be more geared to the physical needs of carers than to their emotional needs. Since the care of individuals with dementia in the community is increasingly being encouraged, the identification of demented individuals with significant changes in personality may assist community services in sup- porting the morale of caregivers.

ACKNOWLEDGEMENTS

We would like to thank Chris Webb, Community Services Manager for Southampton Elderly Mental Health Services, and the community psychiatric nurses associated with this service for their help in recruiting subjects for this study.

236 R. WILLIAMS, R. BRIGGS AND P. COLEMAN

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