Family caregiving in dementia

An analysis of the caregiver’s burden and the

"breaking-point" when home care becomes inadequate
Lena Annerstedt’, Sölve , Bengt Ingvad
1
Elmståhl 2 and Sven-Mårten 1
Samuelsson
Department of Community
1 Medicine, Division of Geriatric Medicine, 2
School of Social Work, Lund University, Sweden

Scand J Public Health 2000; 28: 23-31

The burden of caregivers of patients suffering from of Alzheimer type dementia (DAT) and vascular dementia (VD) was
analysed at the critical time, the "breaking-point", when home care becomes insufficient and/or inadequate and the caregiver
burden has probably reached its upper limit. Primary family caregivers of 39 DAT and 40 VD patients who were being
considered for relocation into group-living units were studied. Total caregiving burden and different aspects of the burden:
general strain, isolation, disappointment, and emotional involvement, were correlated with the patients’ diagnoses, abilities,
and symptoms. Closer kinship to the patient imposed a heavier burden. The caregiver’s gender, social class, and previous
institutionalization of the patient did not influence the caregiver burden. There was no significant correlation between the
patients’ ADL ability or cognition and the burden. A higher level of disappointment was found among the VD carers.
Different symptornatology in patients of the two diagnostic groups was related to special aspects of the burden. Multiple
regression analysis showed that the amount of caregiving time each week and impaired sense of own identity,
misidentifications, clinical fluctuations, and nocturnal deterioration in the patients predicted the breaking-point.
Key words: burden, dementia, cognition, family caregiver, group living, home care, symptoms.

Sölve Elmståhl, Department of Community Medicine, Malmö University Hospital, SE-20502, Malmö, Sweden

INTRODUCTION the different types of caregiver impacts. The burden in

An increasing need for family caregiving in dementia
care is foreseen for demographic, sociological, and
economic reasons (1). The experience of great burden
and stress among family caregivers of demented
patients has already been extensively demonstrated
(2-4). However, although studies have revealed
negative effects on the caregivers’ emotional wellbeing
and mental health, their physical health was not
influenced (5-7). Without adequate support, carers
are at risk of an intolerable workload (1). Mace (8)
found that the patients’ memory impairment, physical
violence, catastrophic reactions, and urinary and
faecal incontinence were hardest to cope with for
the relatives of demented persons.
The burden of care might be viewed as the carer’s
translation of the patient’s behaviour and impair-
ments into responsibilities that are troublesome,
difficult or upsetting (9). The carer’s perception of
the caregiving context is an intervening variable
between the severity of the patient’s impairment and
dementia care may be hypothesized as a variable,
depending on at least three groups of characteristics:
the patient (e.g. age, health status, behaviour,
activities of daily living, etc.), the caregiver (e.g.
relationship to the patient, age, sex, health status, and
social class) and caregiving responsibilities, (e.g. type
of caregiving task, amount of time, and length of time
in role).
The aim of this study was to focus on the situation
of family caregiving at the crucial time, the breaking-
point, when home care no longer offers sufficient
support and safety to Alzheimer type dementia (DAT)
and vascular dementia (VD) patients. Caregiving
characteristics, typical patterns of caregiving burden,
and patients’ status and symptoms were examined and
correlated. We hypothesized that the caregiving
burden varies with the type and level of dementia,
and thus, to a certain extent, might be foreseen and it
may therefore be possible to intervene. This aspect
might be important for the design of adequate support
programs for family carers. Identification of predic-

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24
tors of the breaking-point might also help careplan-
ners to prevent crises in the caring situation.
Background
In the city of Malm6, south Sweden, where this study
was performed, patients can be supported with home
care up to three times a day, get visits from the night
patrol, and be offered day care or respite care.
However, dementia with loss of orientation and own
identity, and impaired verbal communication, often
combined with inertia, limit home care, especially
when the patient is living alone. Group-living
(GL) care is an officially accepted mode of care
for moderately and moderately-severely demented
patients in Sweden (10, 11), and may have advantages
in care of this group of patients compared with
traditional institutional care, both qualitatively (12,
13) and economically (14). According to a care
program for demented patients, used in the munici-
pality of Malm6 (15), patients suffering from
moderate and moderate to severe DAT or VD are
suitable for GL care if a care planning team considers
home care or institutional care insufficient or
inadequate. In this judgment the situation and
opinions of family caregivers are taken into con-
sideration. Demented persons already on the waiting
list for GL care should, if admitted into hospital
because of crises in the home care situation, be
prioritized for the next possible GL placement.
MATERIAL AND METHODS
This research is a part of longitudinal study of
a &dquo;emotional involvement&dquo;. In this paper, the factors of
group-living care (the GBM-study) in Malm6, where
100 patients on the waiting list for placement in
group-living care were followed for three years from
two weeks previous to their relocation. Fifty percent
of these patients had then been waiting for 6 months
(range 3 - 8 months). In 39 cases, temporary institu-
tional care had been necessary due to a shortage of
GL units. The other 40 cases had been possible to
maintain in home care by increased home help
services, relief care or day care.
Dementia was diagnosed according to DSM III-R
(16) and the diagnosis of DAT was based on the
NINCDSADRDA criteria (17). Hachinski ischaemic
score (18) was also measured.
Patients in the GBM study suffering from DAT
or VD were included if a family carer, defined as
the main, responsible, informal caregiver, could be
identified. Eighty-six pairs of patients-carers fulfilled
these inclusion criteria. Two pairs were excluded due
to insufficient clinical data on the patients and in five
cases carers refused the interview because of their own
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health Thus 79 pairs of patients and related
problems.
carers remained in the study.
Patients and carers were contacted for agreement to
participate. Before the relocation, medical examina-
tion and assessment of the patients were performed
by one of the authors (LA) and an interview with
the carer and assessment of the caregiver’s burden
were carried out by two specially trained registered
nurses.
Instruments
A semi-structured interview with the carer gave data
about the caregiving situation: age, sex, relationship
to the patient, social class (19), duration of observed
dementia symptoms, and length of caregiving period
due to dementia. The amount of care given by the
family carer was estimated in hours per week. The
maximum caring-time was considered &dquo;time on duty&dquo;,
168 h per week, for the family caregiver. Data on the
patient concerned all contacts with primary health
care and social services.
The CB scale (Caregiver Burden Scale) was used to
assess subjective burden at the time of GL relocation.
The reliability of this 18-item scale was 0.88,
according to Cronbach’s alpha (20). The CB scale is
scored 0-3 (not at all, seldom, sometimes, often),
covering areas known to be especially important, such
the caregiver’s health, psychological wellbeing, rela-
tionships, social network, and physical workload. The
factor analysis used here presented four factors
describing different aspects of burden, namely
&dquo;general strain&dquo;, &dquo;isolation&dquo;, &dquo;disappointment&dquo;, and
the CB scale will be written within quotations.
MMSE, the Mini Mental State Examination, (21)
was used to evaluate the severity of the cognitive
impairment in the patients.
The patient’s dependency on other people in daily
living activities was assessed by Katz index (22), an
index suitable for assessing elderly in hospital care and
home care (23).
Berger scale, &dquo;Rating the severity of senility&dquo; (24),
was used to assess the patient’s level of social
dependency. This scale is, like the Katz indexes,
hierarchically constructed. It has previously been
found useful in a study focusing on the care planning
of demented patients in Malm6 (25).
It measures the social dependency according to the
carer’s opinion and contains six levels of progressive
deterioration, from slight forgetfulness (level I) and
increased risk of confusion (level II) to the terminal
phase of dementia (level VI) when motor functions are
severely affected. In level III the patient needs
reminders, but apraxia and aphasia are moderate or
 25
~ ~

~o
~§s absent, in level IV these symptoms have become
>fl
prominent. In level V communicative speech is absent.
g$
~ ~ <
!
A reliable and valid psychogeriatric scale, the
S Q Organic Brain Syndrome (OBS) scale (26) was used
,’1 )
of
::: E
for assessing cognitive, emotional, and conative
§j% symptoms. The scale is used in its factor-analysed
11’
version of two subscales: the disorientation subscale
~~~
~~,o (OBS 1) built on interviews with patient, and the
0
~~ V confusion subscale (OBS 2) built on observations of
’.) 6 t’-... II * *r::.... patient’s symptoms and behaviour. OBS 1, measuring
~s.. the patient’s awareness of orientation as to own data,
0 time, place and situation, and his/her current knowl-
~.~~
S s V edge of some general topics, are reflected in three
#lfl
%°0 factors called time, recent memory, and own identity.
~ ’a v OBS 2, describing a wide spectrum of psychopathol-
~ ~§ ogy, expose nine strong and clinically meaningful
~ S~’.)B:-s., factors: dyspraxia-spatial disorientation;
ao .~
~o~ hallucination-syncope; lack of vitality; dysphasia;
£§gl paranoia; aggressiveness; depression-anxiousness; clin-
~ ,o ~ 0 a o, ical variations; and restlessness. The symptoms are
~S !3 &dquo;
scored in four steps based on intensity and frequency
.5]~
~’~3 of the symptoms. Score 0 indicates absence of a
Q~~ symptom and scores 1, 2, and 3 slight, moderate, and
Uqjj,
, o strong manifestation, respectively.
£j/~%
<:u ~
.:::
Z~ Statistical methods
~o.o~ We used the Mann-Whitney U test and Kruskal-Wallis
,~ .~ ~q H test to analyse differences between two and three
s~~ groups, respectively; comparisons in pairs according to
flgl
~#f~i Scheffe and Spearman correlation coefficients, and
~afij
_U
11%
two-tailed test, to study correlation between indices. A
Q£fl multiple linear regression analysis with total burden as
]<:u’::; the dependent variable was carried out. Only variables
~ 0.
-~ S: significantly related to total burden were included as
on
.£%gn
. ~ ‘’~ o independent variables in the model, and a p-value of
less than 0.05 was used for entry of variables and a
~:::’.)
3 ~~ p-value higher than 0.05 for removal.
.
o 0 RESULTS
’~~§
t%1 Patients
<:u s:’ ’&dquo;
4 ~.£I‘~ Thirty patients, one man and 29 women, 80.0 ± 6.79
~O£~°
~~ (mean+SD) years old, met the NINCDS criteria for
#f~l#
~s’; 1I &dquo;probable&dquo; DAT and 49 patients, 6 men and 43
~ ~ cq women, 81.6+4.7 years old, were diagnosed as VD.
U£ The Hachinski scores were 8.8+1.9 in the VD patients
-Ss:’
~ -2 s and 4.0+2.2 in the DAT group (p < 0.001).
~ .a Support from home help services for the total group
~~1 was 7.7 ± 9.2 h week and per patient. Fifteen patients
.~
.$it
_#% had visits from primary care nurses and 18 patients
’~ ~3 attended day care. In Table I, data are presented for
&dquo;,,;SIIII patients in the three different types of living situation.
&copy;°’F
zq§§g Persons living alone were assessed to have lower
full physical and social dependency than the cohabiting

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26

Table II. The family caregivers’ gender and type of giving was 3.0 ± 0.9 years. This corresponded to the
relationship tothe patient (n = 79) families’ about the duration of the
opinion dementing
illness.
There differences between male and female
were no

concerning the amount of their own caring time

carers
and home help hours given to the patient.

* Ten friends and four neighbours.

groups, although no differences were found in
cognitive impairment, disorientation, and confusion
between the groups. Looking at the two diagnostic
groups, the DAT patients were found to be more ADL-
dependent, cognitively declined, and more disorien-
tated. However, no difference in social dependency
(Berger scale) was found. Only one symptom in the
OBS2 scale, restlessness, differed between AD and
DAT patients, being more pronounced in the VD
group (p < 0,01). The VD patients were most frequently
(in 69%) temporarily institutionalized.
Family caregivers
Gender and type of relationship of carers are
in Table II. The duration of family care-
presented
Caregiving burden
The carer’s sex did not correlate significantly with
total burden of caring or aspects of burden as
presented in the four different factors of the CBS
scale. No type of burden was correlated with
caregiver’s social class and age, or with patient’s age
or duration of dementia. Descriptive data of care-
giving variables in spouses, children, and &dquo;other
caregivers&dquo; (siblings, grandchildren, friends, and
neighbours) and their experienced burden are pre-
sented in Table III.
In Table IV the experienced burden of carers is
divided into groups according to the living arrange-
ments of the demented patients at the time of GL
relocation. There were no differences in caregivers’
burden when their demented relatives lived alone, at
home or were institutionalized. The cohabiting carers

Table III. Descriptive data for caregiver’s caring, weekly hours and burden (CB score) given as mean+ standard deviation
(SD), median and range (n = 79). Comparison in pairs according to Scheffé test are given with levels of significance:
*p < 0. O5; * *p < 0. 01; * * *p < 0. 001

Scand J Public Health 28

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 27

Table IV. Caregiver burden (CB score) divided by the patients living situation. Kruskal- Wallis’ test of significance for
the overall test.Pairwise test of significance according to Mann- Whitney U test (Bonferroni)

experienced more burden than did the carers of these results. In spite of no differences in cognition,
institutionalized patients. The own caring time disorientation, and confusion between the patients
strongly influenced the caregiver’s experience of cohabiting and the other patients, the total burden
total burden, &dquo;isolation&dquo; (p < 0.001); &dquo;general strain&dquo;, and the factors &dquo;disappointment&dquo; and &dquo;emotional
and &dquo;disappointment&dquo; (p < 0.05) (Table V). A nega- involvement&dquo; were markedly higher in the cohabiting
tive correlation (p < 0.05) between the time of carers (Table IV). The assessed ADL and social
assistance from home helpers and the caregiver’s dependency were also more pronounced in the
experience of isolation was also found. Excluding the cohabiting group.
cohabiting carers from the analyses did not change The patients’ degree of cognitive decline or ADL-

Table V. Spearman correlation coefficients between caregiver burden (CB score) and caregiving time, cognitive level
(MMSE), levels of the Berger scale, Katz’ ADL index, and dementia symptoms (OBSI and OBS2 according to the
Organic Brain Syndrome Scale). Separate data are given for patients with DAT (n=30) and VD (n=49). Levels of
significance: *p < 0. O5, * *p < 0. 01, and * * *p < 0. 001

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28

ability did not correlate with burden of any kind. The &dquo;gender&dquo; (significance F < 0.05), explaining 13% of
Berger scale however correlated significantly (p < 0.05) the total variance. The factor &dquo;emotional involve-
with total burden and with &dquo;disappointment&dquo;. In ment&dquo;, was not significantly related to any variable.
the OBS scale, the factor &dquo;identity&dquo;, describing the
patients’ awareness of orientation as to own data, DISCUSSION
time, and place, correlated likewise. The factor
&dquo;dysphasia&dquo; correlated with &dquo;isolation&dquo; and &dquo;dys- The study focuses on the breaking point, the critical
praxia&dquo; and &dquo;hallucination-syncope&dquo; with &dquo;total condition when the burden upon the family caregiver
burden&dquo;, &dquo;general strain&dquo;, and &dquo;isolation&dquo;. All and efforts in official care have probably reached a
significant levels were on 0.05%. maximum with respect to the resources available.
No significant difference in total burden or in the The sample of demented patients and their relatives
four factors of burden was found between carers of in the study was representative, as being the new
DAT or VD patients. However, the analysis of the residents of the GL units, consecutively prioritized
different clinical dimensions of the OBS scale in the from a waiting list common for care planning teams
two diagnostic groups revealed significant correlation for a city of 230,000 inhabitants. Age, sex, and
between symptoms and caregiver’s burden. Table V diagnoses of the patients were in accordance with
shows the correlation coefficients with significance’s other studies of demented patients entering long-term
marked. Only in caregivers of DAT patients do total care in this city (13). There were more male carers
burden and the factors &dquo;general strain&dquo; and &dquo;isola- than would have been expected according to other
tion&dquo; correlated with the total score of the OBS2 scale studies (11). This might be explained by the high rate
and the factor &dquo;hallucination-syncope&dquo; (p < 0.05), of employment of women outside the home in the
although, as already mentioned, there was no urban population studied, but will not explain the
significant difference in the OBS2 scores between gender differences among spouses. The high number
DAT and VD patients. The VD patients were less of patients living alone did not differ from the
impaired than the DAT patients in disorientation of situation of the general population of similar age in
time, (p < 0.05). The total burden and &dquo;disappoint- the city.
ment&dquo; correlated, however, only in the VD caregivers Since the amount of formal care available varied
with this factor. Also of interest is the positive between different districts of elderly care in the city, it
correlation of burdens only with the VD patients’ was not possible to evaluate the impact of day care
dyspraxia-spatial disorientation and the negative and other types of formal support. Thus, the role of
correlation with paranoia, containing suspiciousness the total formal care could not be fully analysed. The
of relatives and staff, delusions, and emotional frequently used unplanned institutional care of
lability. patients just prior to relocation means there is a
certain methodological weakness in the study. The
interviews described care-giving conditions in the
Predictors of burden home care setting. In answering the questions about
In selecting the age and gender of the carer, formal the caregiving burden (the ABS scale), the carers were,
care and own caring time, and the bivariate correla- however, asked to focus upon their present feelings.
tion with OBSI and OBS2, a regression analysis of The characteristics of the demented patients in
types of burden was made. An &dquo;inlimit&dquo; of p < 0.05 terms of cognitive and practical deterioration, as
was chosen. Amount of own caring time, the factor measured by the MMSE and ADL performances,
&dquo;hallucination-syncope&dquo;, and the factor &dquo;identity&dquo; were not found to influence the caregiver burden, nor
contributed significantly and in consecutive order to were they of decisive importance to institutionaliza-
the variance of total burden. These three variables tion, which is in accordance with Harper et al. (27).
together explained 26% of the total variance, (sig- An interesting observation was that the Berger scale,
nificance F < 0.001). For the different factors in the which reflects the caregiver’s opinion of the patient’s
ABS scale, the regression analysis did not add much social dependency, correlated with total burden and
further information: the &dquo;general strain&dquo; was deter- also highly with the carer’s &dquo;disappointment&dquo;. In this
mined significantly only by the factor &dquo;dyspraxia&dquo;. scale, coping abilities of the carer, the patient’s
The CBS factor &dquo;isolation&dquo; was determined by the adaptation in the psychosocial setting and the carer-
amount of caregivers’ caring time and the factor caregiver interrelations might also be reflected. This
&dquo;hallucination-syncope&dquo; (significance F < 0.001), lack of association between ADL performance and
which explained 38% of the total variance. The fac- caregiver burden was also noted in a group of more
tor &dquo;disappointment&dquo; was significantly explained by severely deteriorated demented patients one year after
disorientation in time, &dquo;own caring time&dquo; and relocation to group living units (28).

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Physical and social dependency are more pro-
nounced in the cohabiting and institutionalized
groups than in the group living alone. The Berger
scale discriminated highly between patients living
alone at home and the institutionalized patients.
The Katz index also discriminated between these
groups. Cognitive decline, disorientation, and the total
of dementia symptoms according to the OBS scale,
however, did not differ significantly between the three
groups of patients. One could speculate on the
discrepancy in covert and overt competence between
patients cohabiting and being institutionalized and
those living alone. Was it an effect of hospitalization,
of carer’s low expectations of the abilities of the
demented patients, or of the shorter amount of time
needed if helping the patient instead of letting them do
things themselves?
The strongest impact on different types of care-
giving burden was the carers’ own care-giving time,
correlating most strongly (p < 0.001) with total burden
and the &dquo;isolation&dquo; factor. This factor also constituted
the only type of burden influenced by home help
services. The frequent institutionalization signifies that
the resources of both the family caregiver and the
home help services were exhausted at the time of the
breaking point.
Symptoms of dementia in DAT and VD patients
differed at the time of relocation. This is also reflected
in the caregivers’ burden. At the breaking point, the
VD patients were less cognitively impaired, less
dependent in ADL functions, and better orientated,
but more restless than the DAT patients. Dementia in
a VD patient fluctuates, thus the carer might have a
sometimes more rewarding, and sometimes more
frustrating relationship than that of the carer of a
DAT patient, who usually deteriorate gradually
without heavy fluctuations. Our hypothesis, that the
capricious symptomatology of the VD patients is
difficult to cope with, is reflected in the correlation
between burdens and the different OBS factors
disorientation of time, identity, and dyspraxia. In
VD patients, the caregiving burden tended to lessen
when symptoms of paranoia, aggressiveness, and lack
of vitality became more prominent. These results are
in good accordance with a study by Gustafson and
Hagberg, showing a negative correlation between such
symptoms and cognitive reduction in demented
patients (29). An interpretation of this is that many
VD caregivers, when such symptoms appear, will
more easily consider the patient’s behaviour as
pathology and less related to true interpersonal
conflicts. The presence of a high rate of those specific
psychiatric symptoms in the less cognitively deterio-
rated VD patients is thus an important observation in
designing carer support programs.
Downloaded from sjp.sagepub.com at UNIV OF MONTANA on April 3, 2015
29
In DAT the caregivers burden correlated positively
with a high Berger level and with the total score of the
OBS confusion subscale. A probable explanation for
the difference in burdens between the VD and DAT
carers is that DAT carers can realize and slowly adapt
to the pathological behaviour and symptoms at an
earlier stage of dementia, making the symptoms easier
to face. This adaptation will explain why &dquo;disappoint-
ment&dquo; in the DAT carers did not correlate with any
specific patient variable, but only with own caring
time. The correlation of burden with the factor
&dquo;hallucination-syncope&dquo;, containing psychotic symp-
toms, and the factor &dquo;dysphasia&dquo; indicate the need of
continuous supervision of the patient.
The caregiver’s relationship with the patient, but
not with their gender or social group were correlated
with burden. Thus, earlier observations of a correla-
tion between burden and caregiver’s gender could not
be confirmed and our small material does not permit
analysis of differences of experienced burden between
spouses and children. Although no children were
cohabiting, they experienced a higher burden than
&dquo;other caregivers&dquo; who usually lived more geographi-
cally close to the patient. This can probably be
explained in part by the anguish and distress of
children being alert and involved but often unable to
provide satisfactory help because of their living/
working conditions. The prolonged separation pro-
cess, deep separation conflicts, and feeling of guilt
might also impose burden.
The amount of own caregiving time among &dquo;the
other caregivers&dquo;, the friends and neighbours, was as
high as among children. The surprisingly high score in
factor &dquo;disappointment&dquo; in this group can only be
speculated on.
Three predictors of high burden of the family
caregiver were found at the breaking point: the
amount of own caring time, the OBS factor
hallucination-syncope, and own identity. These pre-
dictors are clinically relevant and are supported by
results from the bivariate analysis of the total
material. &dquo;Own caring time&dquo; reflects the true need
for practical support, the state of being alert and
involved, but also many psychological factors, such as
the carers’ anxiety, feelings of guilt, need for being
useful, wish to repay help previously received, and
social expectations (1). The factor &dquo;hallucination-
syncope&dquo; contains symptoms such as fluctuating
behaviour, nocturnal deterioration, and misinterpreta-
tions, all of utmost practical importance in the caring
situation. Especially among DAT carers, this pre-
dictor of burden was prominent in the bivariate
analysis. The factor &dquo;own identity&dquo; describes well the
severity of dementing illness with the ongoing
subversion of the personality. Loss of own identity
30
is probably the factor least sensitive to external
influence. Its only bivariate correlation was to factor
&dquo;disappointment&dquo; in VD carers, although DAT
patients were still more disorientated. This obvious
&dquo;inconsequence&dquo; once more reflects the importance of
acknowledging the differences in the natural course of
DAT and VD.
CONCLUSION AND APPLICATIONS
This study contributes to the identification of the
caregiving limit of home care in the present Swedish
welfare system. By implementing the knowledge gained
of how the caregivers’ burden develops with respect to
different characteristics of both caregiver and patient,
the quality of support programs to family caregivers
and formal caregivers can be improved. Early inter-
vention strategies should identify factors such as
fluctuation of patient’s behaviour, mis-interpretation,
and loss of identity, in order to raise caregivers’
psychological and practical coping abilities.
ACKNOWLEDGEMENTS
This study was supported by the Swedish Medical
Research Council (grants K9327P0976603A and 3950,
the Swedish Council for Social Research, (grants C 90
0134 and C 93 01 00), the City of Malmo, the Crafoord
Foundation, and the Swedish Alzheimer Fund.
We thank Professor Lars Gustafson, Department of
Psychogeriatrics, Lund University, for valuable criti-
cism and support, G6ran Linde, BA, for other
statistical advice and analyses, and Eva Robertsson,
RN, and Ann-Margret Samuelsson, BA, RN, for
carrying out the interviews and assessments.
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