Health related quality of life of caregivers of dementia patients

Linkki: ARKISTO
Marjukka Manninen*, Arto Ohinmaa**, Ilkka Winblad, Anne Remes, Petteri
Viramo, Eija Liuska#, Mirja Hynninen#
*

University of Oulu, Department of Economics, Oulu, Finland

** University of Alberta, Department of Public Health Sciences, Edmonton,

Canada

University of Oulu, Department of Public Health and General Practice,

Oulu, Finland

University of Oulu, Department of Neurology, Oulu, Finland

Karpalo Home, Pyhajarvi, Finland

Abstract
This study analyses the HRQOL of dementia patients caregivers. In Finland
municipalities are responsible to arrange social and health care services to
their inhabitants. To reduce the need for long term care services, families are
encouraged to take care of persons who are chronically ill and need on
varying degree of constant care in their daily life. Caregivers get a small
reimbursement from public sector for their work.
In this study we interviewed caregivers of dementia patients in the southern
region of the Province of Oulu, Finland. The background data was collected
from the caregivers, including age, sex, occupation, education, relationship to
patient, living in the same household to patient, etc., and from the dementia
patients, including assessment of neuropsychological measurements (MMSE,
CERAD, CDR, NPI, proxy interviews) made by trained nurses, assessments
made by experienced GPs, and possible brain image exams (CT or MRI)
completed by specialist consultations. The data includes 77 caregivers who
have completed the background variable and EQ-5D questionnaires. They
have also answered to detailed questionnaire about the need of daily care
that the patient requires, including their assessment of how demanding the
care is for them physically, mentally and economically.
The results of the study shows that the HRQOL of the caregivers of dementia
patients is relatively close or even a bit better than in the general population.
However, the caregivers have slightly higher rate of Anxiety or Depression
problems in the EQ-5D measure and a lowered VAS score values. The
degree of the dementia didnt influence to the HRQOL of the caregiver.

Introduction

This three years project started in 2001 and it aims to develop a model for
treatment and care of dementia in eleven neighbouring rural municipalities in
the Health Region of Northern Ostrobothnia, Finland. These rural
municipalities are relatively small (population mean 4500, range 1800
11000) with a similar age and sex distributions (the proportion of those 65+
years range between 15 20 %). Also the social, educational and
environmental factors are fairly similar. The health and social care services in
this area are delivered almost entirely by the municipalities or other public
sector providers.
To reduce the need for long term care services, families are encouraged to
take care of persons who are chronically ill and need on varying degree
constant care in their daily life. Caregivers get a reimbursement from public
sector. However, the reimbursement is small and that is why public sector
favours caregivers compared to other service alternatives. Because of the
ageing of the population, the number of different homecare and long term
care services for elderly is going to increase.
Elderly people with dementia are very demanding group of patients to care
both at home and in long term institutions. Because of their disease many of
them require constant monitoring. Cognitive symptoms connected to possible
psychosocial and other health problems of these patients make this group of
patients hard to care for their caregivers. Since caregiving of a family member
or other person living close to elderly is often the first step in care, it is
important to know more about these caregivers. The aim of this study was to
analyse the background of the caregivers, what is their HRQOL and health
status and how they are related to the characteristics of the dementia patient,
and what kind of help and support they need in their work.
Methods
Setting and measures:
The study area consists of 11 municipalities in a rural area in Finland. The
study population was obtained from the total of 49,000 inhabitants by
examining the electronic health records and other social and health care data
files of elderly (65 years and over) inhabitants in the area (Table 1). Patients
with diagnosed dementia or possible dementia were identified and a well
trained home nurse visited their permanent place of residence. Data was
collected from their background information including assessment of
neuropsychological measurement (MMSE, CERAD, CDR, NPI, proxy
interviews). Patients who needed further assessments of their dementia or
other co-morbid were examined by GPs and if brain image exams (CT or
MRI) were needed by specialist consultations.

Table 1. Description of the study population.

Number of
2

Inhabitants in the area

Population in the project data
Population 65 and over in the project data
Identified dementia patients in the area
Caregivers of the dementia patients
Interviewed caregivers
Caregivers who returned EQ-5D questionnaire

people
49 000
886
845
543
224
104
77

Caregivers of the identified dementia patients were also approached and

those who agreed were interviewed during the same home visit than the
dementia patient (Table 1). The background information of the caregivers
were collected, including age, sex, occupation, education, relationship to
patient, living in the same household to patient, etc. They also answered to
detailed questionnaire about the need of daily care that the patient requires,
including their assessment of how demanding the care is for them physically,
mentally and economically. The assessment of how demanding the care is
was done using Strain Scale (Gilleard et al. 1982), Burden Scale (Gilleard et
al. 1984), and General Health Questionnaire (Goldberg 1972).
In the data, about 44 percent of the dementia patients who lived at home had
a caregiver (Table 1). The percentage of the patients with caregiver varied
related to the stage of dementia of the patients: 92 percent of the patients with
the severe dementia (0-11 MMSE points) had a caregiver, 72 percent with the
patients suffering the moderate dementia (12-17), 44 percent with a mild
dementia (18-24), and only 12 percent with the beginning senescent
forgetfulness and cognitively healthy persons (MMSE 25-30) had a caregiver.
The caregivers who were interviewed got also the Finnish EQ-5D
questionnaire. The Finnish VAS values were used to calculate the EQ-5D
index (Ohinmaa and Sintonen, 1999). The general population norm values
were calculated from a study (Ohinmaa and Sintonen 1996) that utilizes a
random sample of the Finnish population.
Statistical analysis:
The distribution of the EQ-5D index and the VAS are shown and tested using
t-test. The relationship of the EQ-5D index, some background questions and
demanding of the caregiving were analysed using the correlation tests and
ANOVA. All the statistical analysis was done using the SPSS 10,0 and 11,0
programs.
Results
The caregiver was child or grandchild in the every second case, and
husband/wife in one third of the cases. Other caregivers were some other
relatives or paid caretakers. About 70 percent of the caregivers lived in the
same recidence and about 60 percent of those who lived in the different
recidence met the patient every day. The age of the caregiver was on an
average 63 years (range 27-90), and most of them (70%) were women. One
3

third of them had some disease or disability that harm their every day living.
About 70 percent of the caregivers were not working outside the home, and
about one-fourth had a job. About 30% of caregivers got a reimbursement
from public sector for their caregiving. The reimbursement varied related to
the stage of dementia. The caregivers had been taking care of the patient on
the average 7.5 years.
Table 2. Description of the sub-data of caregivers who answered to the
ED-5D questionnaire.

Caregivers returning EQ-5D

Response to background questionnaire
Response to EQ-5D Mobility dimension
Response to EQ-5D Self-care dimension
Response to EQ-5D Usual Activities dimension
Response to EQ-5D Pain or Discomfort dimension
Response to EQ-5D Anxious or Depression
dimension
EQ-5D index calculated
Response to EQ-5D VAS
Response to Strain Scale and EQ-5D
Response to Burden Scale and EQ-5D
Response to General Health Questionnaire and
EQ-5D

Number of
respondents
77
73
76
76
76
75
73
72
74
56
63
54

The data of caregivers, who had answered the EQ-5D questions consists of
77 persons, that is more than 30 percent of all caregivers of dementia patients
at home in the area (Tables 1 and 2). The age of the dementia patients varied
between 59 and 98 years (mean 80.3 years, sd. 7.1). In this sub-data, the
distribution of the caregivers differs slightly from the data of the whole project.
From these 77 caregivers about 40 percent were wife/husbands, 44 percent
children or grandchildren, and again the rest were other relatives, friends etc.
Their age varied between 30-86 years (mean 62 years, sd. 14.7), and 43 % of
the caregivers were 65 years or over. The distribution of the sex was exactly
the same: 70 percent were women and 30 percent men. About 75 percent
lived in the same recidence, and more than half of them took care of the
patient alone. Most (65 %) of them didnt work outside the home and 42
percent of them get some reimbursement from municipalities and 25 % from
governments social insurance (KELA).
Public sector provided also other services that helped caregivers in their work.
More than half (54 %) of these dementia patients utilized a home nurse
service, 37 percent get some home help service from the social services. In
addition, 30 % used some other social help service that was mostly (73 %)
meal service. Many of the patients had some interval period in different social
service units (19 %), health centres (28 %), or other care units (14 %).

Table 3. Percent distribution of EQ-5D dimensions in three levels (1=no

problems, 2=some problems, 3=severe problems), and the mean values
of EQ-5D Index and VAS score in the group of caregivers (N=77) and in
the Finnish general population.
Dimension
Mobility
Self-care
Usual Activities
Pain or
Discomfort
Anxious or
Depression
EQ-5D Index
EQ-5D VAS

Level
1
2
3
1
2
3
1
2
3
1
2
3
1
2
3
Mean
S.D.
Mean
S.D.

Caregivers
%
79.2
20.8
0.0
97.4
1.3
1.3
89.5
9.2
1.3
47.4
51.3
1.3
71.6
27.0
1.4
0.774
0.19
69.40
12.02

General population
%
64.3
35.2
0.6
89.3
9.6
1.1
69.9
26.6
3.4
44.4
52.7
3.0
83.2
15.4
1.4
0.768
0.20
74.25
20.08

The results of the caregivers HRQOL measured by the EQ-5D dimensions,

EQ-5D index, and the VAS are shown in Table 3. The numbers of missing
values in the EQ-5D were small indicating that the questionnaire was feasible
in this mixed population that included some relatively old caregivers (Table 2).
The results of the EQ-5D dimensions show that the caregivers had relatively
good HRQOL in the dimensions of Mobility, Self-care and Usual Activities.
They had a somewhat more problems in the Anxiety or Depression dimension
and much more problems in the Pain or Discomfort (about 28% and 53% of
respondents, respectively). When these dimensional results were compared
to Finnish general population values (Ohinmaa and Sintonen 1996) that were
standardised using caregivers age and sex distribution, it can be seen that in
all other dimensions, except Anxiety or Depression, caregivers had a
somewhat better HRQOL level than the general population.
The distribution of EQ-5D index and the VAS are presented in Figure 1 and 2.
The EQ-5D index scores varied between 0,249 and 1,000. In this data, more
than 50 percent of the caregivers had EQ-5D index score more than 0.70 with
the mean value of 0.774, and the median 0.735. The VAS score was also
quite high varying between 50 and 100. Both the mean and the median of the
VAS score ware about 70. The comparison of the EQ-5D index values to the
Finnish general population showed that there were not statistically
5

significantly different. However, caregivers assessed their health status on the

VAS scale statistically significantly lower than general population (p<0.05).

30

20

10

Std. Dev = ,18

Mean = ,77
N = 72,00

0
,25

,38

,50

,63

,75

,88

1,00

EQ-5D index

Figure 1. The distribution of EQ-5D index scores.

30

20

10

Std. Dev = 12.0

Mean = 70
N = 74,00

0
5,0

6,0

7,0

8,0

9,0

10,0

EuroQol VAS

Figure 2. The distribution of EQ-5D VAS scores.

We analysed the EQ-5D index between some background variables using the
one-way ANOVA-test. There were no statistically significant differences
between genders (p>0.05). Some differences were found between the age
groups (p=0.03) with older respondents having lower EQ-5D index values.
Also there seems to be some differences between different status of
caregivers (p=0.03). Especially, it could be seen (p=0.004) by comparing to
group of wife/husband (mean of EQ-5D index 0,689) with the others (0.817).
Interestingly, there was no difference in the caregivers HRQOL between the
different statuses of dementia diagnosis groups of the patients (using the
MMSE-points). There were no statistically significant differences between the
caregiver groups who took care of the patient alone, used home nurse
services, social services or who got some support from public sector. The only
service related variable that was related to the HRQOL was whether the
dementia patient had utilized health centres interval periods. The caregivers
whose patient had been in health centres interval period seems to have lower
EQ-5D index score (0.690) than the others (0.811).
We also studied the above variables in the group of wife/husband as a
caregiver group. Results seemed to be the same except that the influence of
the patients interval care at health centre disappeared. In addition, there was
statistically significant difference (p<0.05) in EQ-5D index scores between
those caregivers who got some financial support from government (0.5129)
and the others (0.740).
The distributions of the EQ-5D dimensions were tested against the
background variables in the study, and only few statistically significant
differences were found. The most important difference was found in the mean
values of General Health Questionnaire (GHQ) summary scale and Anxiety or
Depression dimension, where caregivers without problems had better
emotional wellbeing than those who had Anxiety or Depression problems
(p=0.01).
The correlation table (Table 4) shows that Mobility is related to Self-care and
also the background question: Do you have some disabilities or disease
which make you every day living difficult? The Self-care dimension in addition
correlated with Usual activities and slightly with both the Strain and Burden
scales. The Pain dimension correlated with age and disability/disease. The
Anxiety or Depression dimension correlated with the GHQ, as it was
expected, showing that these two indicators of psychiatric aspects measured
the same entity. The EQ-5D index correlated with age, status of caregiver and
disabilities/disease question and all EQ-5D dimensions and the VAS score.
The VAS score was slightly related with age and also with the Strain and
Burden scales. MMSE-points of patients did not correlate at all with the other
variables, while the Strain, Burden scales and the GHQ showed to be very
strongly correlated with each other.

Discussion
The study shows that the HRQOL of the caregivers of dementia patients,
measured with the EQ-5D instrument, is relatively close to that of the general
population. In the physical aspects of the EQ-5D dimensions the caregivers
were actually on a bit higher level than their reference group. However, they
showed reduced HRQOL in the Anxiety or Depression dimension and on the
EQ-5D VAS scale, indicating that the caregiving to this demanding patient
group created some additional psychiatric burden to them.
The EQ-5D measure was feasible in this group and showed valid results
when it was compared to the main background variables. When sub-groups of
the caregivers were analysed, it was seen that the HRQOL of wife/ husband
caregiver was significantly lower than the others. This is easy to understand
considering the relatively high age of these persons. However, only about 10
% of caregivers who were over 64 years had EQ-5D index values lower than
0.50. These results indicate that the selection process of the caregivers
function relatively well and those who have significantly decreased HRQOL
dont select to be caregivers or they give up the caregiving once the HRQOL
reduces.
It was interesting to see, that the severity of dementia didnt have any
influence on the level of the HRQOL of caregivers. Also the influence of the
patients Strain scale and Burden scale on the caregivers HRQOL was
limited. The summary score of GHQ was connected to Anxiety or Depression
problems confirming the existence of psychological problems in this group. A
resent review of Patterson and Grant (2003) have also found that dementia
patients caregivers are more depressed, anxious and stressed than their noncaregiving counterparts. However, the review also found that this group of
caregivers suffers from increased physical health status especially among
elderly spouse caregivers. The results of this study dont provide evidence to
that finding. Because our data doesnt include matched controls to caregivers,
it is not possible to test these questions any closer.
The study showed that majority of the dementia patients and their caregivers
received at least one type of social and healthcare service at home or in a
form of interval period in an institution. The only social service related
difference in caregivers HRQOL that was found was that interval periods at
the health centre were related to decreased EQ-5D index values. This finding
needs to be analysed in more detail in the future. However, it seems that
social programs are not very efficient to significantly improve psychological
and physiological outcomes of dementia patients caregivers (Patterson and
Grant 2003).
The results of this study indicate that although some caregivers have lowered
HRQOL levels, however, there is not substantial inequity in the HRQOL of the
caregivers compared to the general population. There seem to be a need to
assess the caregivers psycho-socio support systems, so that the slightly
lowered psychiatric indicators of these persons could be improved. There is

also a high risk that the HRQOL of caregivers start to lower more in the future,
once the ageing of the population continues in these rural areas of Finland.
References
Gilleard, C.J., Boyd, W.D, and Watt, G. Problems in caring for the elderly
mentally infirm at home. Arch. Gerontol. Geriatrics 1982; 1: 151-158.
Gilleard, C. J., Belford, H. Gilleard, E., Whittick, J.E., and Gledhill, K.
Emotional distress amongst the supporters of the elderly mentally infirm.
British Journal of Psychiatry 1984; 145:172-177.
Goldberg, D.P. The detection of psychiatric illness by questionnaire. Oxford
University Press, 1972, London.
Ohinmaa, A., Sintonen, H. Inconsistencies and modelling of the Finnish
EuroQol (EQ-5D) preference values. In Gainer, W. et al. (ed.) Proceedings of
the 15th EuroQol Plenary Meeting 1-3 October 1998, Hannover; 1999: 57-74.
Ohinmaa, A., Sintonen, H. Quality of Life of Finnish Population Measured by
EuroQol. In Badia, X., Herdman, M. and Segura, A. (Editors), EuroQol,
Plenary Meeting, Barcelona 1995, 3-5 October; Discussion papers. Catalan
Institute of Public Health, Barcelona, 1996: 161-172.
Patterson, T.L., Grant, I. Interventions for caregiving in dementia: physical
outcomes. Current Opinions in Psychiatry 2003; 16:629-633.

Table 4. The Correlation matrix of the EQ-5D dimensions, VAS and EQ-5D index
scores, other health scales of the study, and background variables.
Mobility

Self-care

Mobility (N=76)
1,000
0,314
Self-care (N=76)
1,000
0,667
Usual activity (N=76)
0,203
Pain (N=75)
0,269
0,040
Mood (N=73)
0,176
0,119
-0,471
-0,343
EQ-5D Index (N=72)
EQ-5D VAS (N=74)
-0,231
-0,176
Sex (N=66)
0,119
0,254
Education (N=63)
-0,029
-0,149
Age (N=61)
0,274
0,041
MMSE-points (N=76)
0,098
0,225
Strain scale (N=56)
0,029
-0,297
Burden scale (N=63)
0,115
-0,257
GHQ (N=54)
0,225
-0,086
Wife/husband carekeeper(76) 0,277
0,118
0,385
disabilities/diseace (N=63)
0,114
Correlation is significant at the 0.01 level (2-tailed).
Correlation is significant at the 0.05 level (2-tailed).

Usual
activity

1,000
0,014
0,206
-0,405
-0,216
0,140
-0,112
0,061
0,075
-0,112
0,013
-0,006
0,091
0,195

Pain

Mood

1,000
0,211
-0,725
-0,373
0,034
-0,145
0,521
0,002
-0,038
0,068
0,003
0,273
0,415

1,000
-0,695
-0,198
-0,037
-0,117
0,238
-0,019
0,087
0,053
0,442
0,230
-0,020

EQ-5D
index

EQ-5D
VAS

MMS
point

1,000
0,405
-0,130
0,209
-0,440
-0,019
-0,001
-0,098
-0,198
-0,332
-0,342

1,000
-0,250
0,194
-0,329
0,014
0,347
0,273
0,031
-0,220
-0,049

-0,04
0,01
-0,04
1,00
0,01
-0,08
0,19
0,07
0,13