AN ´ ALISIS DEL SISTEMA

(8-1) Introduction

In the study o f patients with dementia and their main carer, a total o f 37 patient-carer dyads were recruited. The previous chapter reports on those patients who were able to be interviewed and for whom a carer was identified and also interviewed. O f the 37 patients, two were subsequently found not to have a regular carer and were eliminated from the study. The cognitive status o f 13 patients precluded interview and this chapter reports the QOL o f these 13 patients who could not rate their own QOL but whose carers could give a rating for the patient.

(8-2) Subjects and methods

(8-2-i) The interview

O f the total 37 patient-carer dyads recruited, a total o f 13 patients could not be interviewed because their cognitive status precluded engaging them in research. In all cases, an effort was made to build rapport and commence a preliminary qualitative interview. Where possible, an attempt was made to administer the MMSE. In these 13 cases, however, the interview could not proceed. As in the previous interviews, reported in the last chapter, data were obtained using the following carer-rated assessments: (1) the QOLAS; (2) Interview to Determine Deterioration in Daily Functioning in Dementia (IDDD) (Teunisse et al., 1991) (3) The Neuropsychiatrie Inventory (NPl) (Cummings et al., 1994) and (4) the EQ-5D (proxy rated).

(8-2-ii) Statistics

The results for the two groups, patients who could be interviewed (n=22) and those who could not be interviewed (n=13) were compared using the parametric t-tests and the non-parametric M ann Whitney U, as appropriate.

(8-3) Results

O f the 13 patients who could not complete the QOL interview, nine patients could not be interviewed at all and so had a MMSE score o f zero. A total o f 4 patients could partly engage in the interview and answer some questions. O f these, 2 patients had a MMSE score o f 5, one had a MM SE score o f 8 and one had a M MSE score o f 9. The mean age o f the patients was 65 years (s.d. = 4; range 58-70 years). Nine o f these patients were male and four were female. The mean age o f the carers was 63 years (s.d = 6 years; range 52-71 years). Four o f the carers were male and nine were female. The mean onset prior to interview was 6 years (s.d.= 4 years; range 1-15 years).

(8-3-i) QOLAS

The results o f the QOLAS (carer rating patient) are shown in Table 22. For comparison, the proxy results for the patients who could not complete the interview (n=13) are shown alongside the patients (n=22) who could complete the interview. The missing data in the “Daily activities” domain is mainly the result o f this question being judged irrelevant.

(8-3-ii) IDDD

The mean IDDD score for the patients who could not be interviewed (n=13) was 88.23 (s.d. = 17.49; range 49-99). The mean IDDD score for the patients who could be interviewed (n=22) was 53.32 (s.d.^

12.37; range = 40.86). The scores for the two groups were significantly different, t=6.91, p=0.000.

(8-3-iii) Neuropsychiatrie Inventory (NPD

The results o f the N Pl are shown in Table 23. For comparison, the results for the patients who could not complete the interview (n=13) are shown alongside the patients (n=22) who could complete the

interview. There were significant differences between the two groups on the subscales agitation and eating and on the N Pl global score.

(8-3-iv) The E 0 -5 D

The results o f the EQ-5D descriptive, carer rating patient, are shown in Table 24. Again, for comparison, the results for the patients who could not complete the interview (n=13) are shown alongside the patients (n=22) who could complete the interview. As might be predicted, compared to those patients with mild-to-moderate dementia, more patients with severe dementia had problems (and more severe problems) on every subscale o f the EQ-5D.

M ost respondents had problems giving an overall score for the EQ-5D Visual Analogue Scale (VAS). The most frequently mentioned problem with giving an overall rating was that the respondent wanted to give one score for physical well-being, (health or fitness) and a separate score for what they called “m ental” functioning. In the group where the patients had mild-to-moderate dementia (n=22), a total o f 6 respondents gave a VAS rating. In the group where the patients had severe dementia, a total o f 5 respondents gave a VAS rating. Since the comment about wanting to give two scores was so frequently expressed, respondents were given the opportunity to score the two components o f well-being

separately. The results are presented in Table 25. The mean VAS-total score was much higher (indicating better health) for the mild-to-moderate group than for the severely affected group. The ‘ VAS-physical’ was, somewhat surprisingly, higher for the group o f patients with ‘severe’ dementia than for the group with mild-to-moderate dementia but the ‘ VAS-mental’ score was, predictably, lower for the more severely affected group. Because o f the very small sample sizes in each group, no statistical tests were performed on these data.

(8-4) Discussion

This chapter has looked at two groups, those who could be interviewed and were in the mild-to- moderate stages o f dementia and those who could not be interviewed and who were in the severe stage

o f dementia. The results show significant differences between the two groups, i.e. those with mild-to- moderate dementia (n=22) and those with severe dementia (n=13) on all subscales o f the QOLAS. Qualitative data collected at the time o f interview revealed a problem/ambiguity in the question concerning daily activities since, for most o f these patients, the question about daily activities was no longer applicable. Because most o f the patients with severe dementia no longer engaged in any purposeful, goal-directed activities, a question about problems with daily activities could elicit either the response that the patient was having extreme problems or, conversely, the response that (since the patient was no longer aware) he/she was having no problems with daily activities, or that the question was “not relevant” .

On the Neuropsychiatrie Inventory (NPl) differences between the two groups were observed on the agitation, eating and the global N Pl subscales.

The EQ-5D descriptive data showed marked differences between the groups. The ‘Usual activities’ question was difficult to score when this question was no longer applicable and/or when the patient had no insight, leading the carer to the conclusion that this was not a ‘problem ’ for the patient. In the group with severe dementia, 23% o f carers could not give a rating for pain/discomfort and 8% could not rate the anxiety/depression question. The most frequent comment made by carers was that the patient sometimes made a gesture or a facial grimace or otherwise behaved such that the carer thought that the patient might be in pain or be anxious but that it was impossible to be sure.

In Table 26 we compare the results o f the EQ-5D descriptive profile for 4 groups: (i) our patients being assessed for their suitability for definitive surgical treatment for intractable epilepsy, (ii) the UK population survey (Kind et al. 1998), (iii) the carers’ rating o f the patients with severe dementia, and (iv) the carers’ rating o f the patients with mild-to-moderate dementia. Because o f the differences in sample sizes and the fact that two o f the groups were proxy-rated, no statistical analyses have been performed. It is nevertheless o f interest to informally compare the groups in Table 26. It was

previously reported (in chapter 6) that the percentage o f patients in our surgery reporting “no problems” on each EQ-5D domain, was similar to that in the UK survey and this was surprising given that they had chronic, intractable epilepsy. Table 26 shows that the dementia (carer-rating-patient) results were quite different. Overall, both the mild-to-moderate and the severe dementia groups had smaller percentages reporting “no problems” (carer-rated) on any question than respondents in either the surgery study or the UK survey. It is o f note that a larger percentage o f the group o f patients with mild-to-moderate dementia and a larger percentage o f the surgery group had “no problems” with pain/discomfort than did the UK survey population. On the other hand, the dementia carers reported being unsure whether the patient was experiencing any pain.

The other interesting comparison is between the patients with mild-to-moderate dementia and the surgery group on the anxiety/depression domain. A slightly larger percentage (68%) o f patients with mild-to-moderate dementia were rated by their carers as having no problems with anxiety/depression, compared to the surgery patients (65%). This might be explained by the fact that, as documented in the literature, carers under-report affective states because they have difficulties in knowing about “inner”, subjective states o f well-being. It also suggests that spending time on the telemetry unit, having tests

which might lead to major brain surgery, is just slightly more anxiety inducing than being in the mild- to-moderate stages o f dementia (the latter being proxy-rated).

(8-5) Chapter 8; summary

O f the 37 patient-carer dyads recruited, only 22 patients could complete an interview and these were in the mild-to-moderate stages o f dementia. A total o f 13 patients already had severe dementia at the time o f recruitment and therefore only proxy ratings were available. This chapter has reported and compared the carer-rated QOL o f the two groups. Overall, the patients with severe dementia have a worse QOL that those with mild-to-moderate dementia but it must be noted that scores can appear to dramatically “improve” if the carer decides that the patient has lost insight into their condition. In these cases, after a period where the carer would score “extreme problems” or very poor QOL, they decide that question is no longer applicable and/or the patient is beyond ‘experiencing’ a problem and is, therefore,

C hapter 9