One hundred and twenty five Care givers
of persons diagnosed as dementia were recruited into the study.
As per Table 1, 54.4% (68) of the persons
with dementia were males and 45.6% (57) were females. Most of the patients
were from the age group of 71 to 80 years (35.2%) followed by age group
of 61-70 years (32.8%). 16.8% (21) of the them were from the age group
of 51 to 60 years and 13.6 % (17) were above 80 years of age. Only two
were below the age of 50.
Table 1: Socio-demographic
profile of the cases
to 60 years
to 70 years
to 80 years
education level (secondary education)
education level (Pre university and above)
As per the findings 65.6% (82) of the
patients were married, 25.6% (32) were widows, 4.8 % (6) widower. Three
of them were single and 2 had polygamy.
Maximum patients had medium educational
level (66) and 21.8% (31) had higher educational level and only 22.4%
(28) were illiterates.
Care giver related variables
Table 2: care giver related socio
– 35 yrs
– 50 yrs
– 60 yrs
– 70 yrs
71 – 80 yrs
Most of the caregivers i.e., 59.2%
(74) were females and 40.8% (51) were males. Age for our convenience
was grouped into 5 categories of 20 – 35 yrs, 36 -50 yrs, 51-60
yrs, 61 – 70 yrs, and 71 – 80 yrs. Maximum care
givers were from the age group of 36 to 50 years of age. 44 (35.2%)
care giver s were from this age group, and least care givers were from
the age group of 71 – 80 years of age, i.e., 7 (5.6%) of the care
givers were from this age group.
Hundred and six families of caregivers
were of nuclear family type (84.8%) and 18 (14.4%) families were of
extended family type and single 1 (0.8%). Maximum cases (77.6%) were
from rural area and 22.4% from urban area.
Maximum number of patients i.e., 103
(82.4%) were married and had family, 16 (14.4%) unmarried, 3 (2.4%)
widows and 1 (0.8%) was a widower.
Most of the care givers had a higher
educational level (59.2 %), 32% medium educational level and 8.8% of
the care givers did not have formal education.
Mean age of patient and care giver
Mean age of the patients as 69.87
(SD 10.278) and Mean age of the care givers as 48.90 (SD13.787)
Duration of care giving
Duration of the caregiving was divided
into 4 categories: 1 year and less than one year, one year to two years,
2 years to 5 years, above 5 years.
duration of the problem of one year and less than one year was reported in 34
(27.2%) caregivers, one to 2 years in 34 (28.8%), 2 to 5 years by 36 (28.8%)
caregivers and 5 and more than five years by 19 (15.2%) of the caregivers.
Frequency of Burden experienced by the care givers
Out of total sample of 125 care givers
43.3% (54) of them experienced severe burden, 28% (35) moderated to
severe burden, 24% (30) mild to moderate burden and only 4.8% (6) had
little or no burden.
Paired t test showing the correlation
of burden with coping methods adapted
3: Paired t test for coping and burden
||Burden & humor
||Burden & using
||Burden & using
||Burden & self
||Burden & denial
||Burden & venting
||Burden & self
Each dimensions of coping strategies
was correlated with the burden experienced by the care givers. Test
of significance shows positive reframing, use of emotional support,
venting, behavioral disengagement and self blame was found to be significant
when correlated with burden experienced by the informal care giver.
Active coping strategies
An active coping strategy tries to
deal with the problem by confronting the problem. Caregivers thought
about solutions to the problem or did something to try to solve it.
“I always think there is no point
in waiting for situating to improve; instead I try to make the situation
better by my actions” -husband
“I try to concentrate to help
my husband in reading the newspaper loudly so that he is still in touch
with outside world”- wife
Here frequency of coping strategy was
taken into consideration. Even though the test does not show any statistical
significance, the result showed out of 12 care givers who least or minimally
adapted this method as coping strategy eight (66.6%) of them reported
to experience severe burden when compared to care givers who adapted
this method more often. That is 12 out of 32 care givers experienced
severe burden (37.5%).
Seeking information about the disease
from the various sources including their friends and trying to plan
for steps to be taken in future care
days my mother bed wets as she lost control over her toilet habits &
I was so stressed about the situation my friend suggested me to stop
giving liquid food after five in the evening & this plan is working
for the time being” - daughter
“I am taking my wife for the evening
walk so that her legs will not be weak as she wants to sleep all day”-husband
There is no significant (statistical)
finding for this dimension. Frequency of planning for their activities
directly affects the severity of burden experienced by the care givers.
The finding shows less they adapt this strategy more severe will be
the burden. Out of 19 care givers who less frequently planned for their
care giving role 11 (57.89%) have experienced severe burden. And 12
out of 43 (27.9%) care givers who frequently planned for care giving
role have reported to have experienced severe burden. This is less when
compared to the care givers who did not plan for care giving.
Positive reframing strategies
This is trying to see the problem in
different light to make to seem more positive and looking for something
good in what is happening.
“I lost my young son in an accident
and I am lucky to have my wife with me even though she has lost her
memory. She is there for me …”
This method of coping is seen in very
less care givers. The care givers experience of stress is enormous and
they seldom see any good in future as most of them are aware of the
prognosis of the disease. The result showed statistical significance.
Only seven care givers reported to adapt this strategy and out of this
one care giver experienced severe burden. Most of the care givers i.e.,
60 care givers said that they do not have any hope and they cannot see
any good in what is happening. Out of these care givers 34 (56.66%)
experienced severe burden and 24 (40%) of them suffered mild to severe
Acceptance of reality
Care givers effort to learn to live
with the reality of fact that it has happened. Caregivers said that
they have, after a long time, come to terms with the problem and can
now more easily accept the situation
“My mother is been ill for more
than 2 years now and I thought of accepting the truth that she will
not come back to me again. Now I feel much better even though
“It is very hurting to see my
husband in such condition what to do? There is no escape so better accept
and try to make life a little better”-
The results do not show statistical
significance. But is it interesting note that the care givers who accepted
the reality and who think that they do not have any options but to take
care of their dear and near once till the end experienced severe burden
than the care givers who did not accept. There were very less number
of care givers who did not accept the reality. Only three of the care
givers who were not ready to accept the fact & out of them 2 of
the care givers were experiencing severe burden. Most of the care givers
i.e., 98 care givers adapted this strategy of acceptance. In spite of
their acceptance, 38 (38.77%) of them were experiencing severe burden.
In this group most of them i.e., 55 (56.12%) care givers experienced
mild to severe burden. This strategy of coping, we can say had the negative
impact on the care givers.
Humor as coping strategy
Very few care givers shared the instances
which they remembered in care giving situations and laughed heartily
as they shared some of the instances
“My husband hates my mother for
her toilet habits. Once it so happened that my mother urinated in the
living room & it was time for my husband to return back from his
work. I and my daughter saw him coming just few meters away from home.
Both of us rushed to the spot cleaned it up dressed my mother in matter
of seconds and lifted her and put her to bed. When my husband returned
he directly went to mother to check if everything is fine. And my mother
gave him a very sweet innocent smile which made us laugh heartily. Whenever
we remember this incidence it makes us smile and gives us a temporary
Only two care givers said sometimes
they recall some of the funny events in the care giving situations and
enjoy those movements even though both of them were experiencing mild
to severe burden. Maximum number of care givers said they have lost
their sense of humor and they are not finding anything to smile at.
In these 99 care givers, 46 (46.46%) experienced severe burden and 47
(47.47%) were experiencing mild to moderate burden and rest had little
or no burden. The two care givers who adapted this coping method did
not suffer from severe burden and if more emphasis on this is implemented
in the intervention programs and new methods to develop this skill there
can be a ray of hope of bringing down the experiences of burden in the
informal care giving setups.
Most of the care givers tried to comfort
themselves in their religion or spiritual beliefs and most of them try
to cope up with praying and meditating.
“Before I rarely used to visit
the place of worship but now a days I often visit these places and pray
for my husband with the hope of some miracle to happen, and everything
to be back to normal once again”-wife
Most of the care givers had their own
religious beliefs and religious rituals at home for the benefit or recovery
of the person with dementia.
Using Emotional Support strategy
Most of the female care givers, especially
who had dual role of wife and mother say they feel happy if their children
show some concern & sympathize for her care giving role.
“My children if they spend some
time with me listening to my problems & pains I feel little relieved.
Usually my daughter will take some time to visit me & listen to
my problems. I hope to have some friends with whom I can share my pains”-wife
“I am very grateful to community
nursing professionals who visit our house regularly and listen to me
patiently and suggest some coping methods. They understand me better
than my own children”-husband
The test showed significant results.
Care givers who did not get any emotional support said they require
someone’s shoulders to cry off their burden. In 24 care givers more
than 50 % carers who did not have any one to listen to their problems
experienced severe burden. In 20 care givers who were using emotional
coping strategy, it was observed that seven (35%) of them experienced
severe burden and 11 (55%) experienced mild to severe burden. More the
burden they have they will be looking for emotional support, especially
women in sandwich generation.
Using instrumental support strategy
Most of the caregivers were informed
and educated by the psychiatrist or by the psychiatric social work professionals
about the disease & its prognoses.
“Knowing about the disease made
the situations better and now I know that I have lost my dear ones and
there is no escape from these care giving responsibilities. I have learnt
to live with It”-son
Care givers who were educated about
the disease and prognoses were able to cope up better than some of the
care givers who said they are not aware of which type of disease their
ward is suffering from. Seven care givers out of 13 who did not have
any instrumental support reported to experience severe burden. And remaining
six reported to experience mild to severe burden. Some of the care givers
who were using instrument support to the maximum (21 care givers) as
coping strategy, reported to experience less or no burden.
Self distraction strategy
Trying to cope by turning to work or
other activities to take their mind off
“I want to watch my favorite serial
in the afternoons, but it all depends on his mood. Sometimes he will
be cool & tries to watch TV with me, other times he will be in agitation
mood with the sound of TV itself he will be agitated and no TV serials
“I prefer to take part in family
functions alone, leaving her with reliever”-husband
“When I am sad I try to think
about good times we had together, but then I have to come back to reality
Care givers who use this method more
often reported to have experienced moderate to severe burden. Six of
the care givers who did not try to distract themselves away from the
current responsibility, experienced very less burden.
Some of the care givers refuse to believe
that it has happened
“This cannot happen to my mother,
they say she cannot come back to normal. How it can be? I know science
have done wonders in all medical fields, and I know some day with some
treatment I am going to get my mother back”-son
“I know some day we will sit together
and laugh at all the events in the course of care giving. But question
There is an interesting finding with
the care givers using this coping method. The result showed the down
ward trend in the number with respect to frequency of coping. Study
showed higher they (caregivers) believe or hope that they are going
to get back their loved ones, lesser is the burden experienced by them.
Most of the care givers agree that
venting out their feeling made them better temporarily. Care givers
experienced great deal of sorrow and sadness and sharing these made
them feel lighter & better.
“I have wept before my children
which I never used to do before. But I think this makes me feel like
I have lost some burden which was inside me”-husband
“When some persons sympathizes
me for my condition I feel like bursting out weep copiously”-son
More they want to share their feelings
or we can say more they share their feeling more they look forward to
share their problems with others often.
Substance use as coping strategy
Some of the care givers said that they
take alcohol in order to forget the reality & to get some relief
Care givers wished that the situation
or problem would improve and go away. Some of the care givers were frustrated
by many years of care giving and they want to give up trying to deal
with the problem.
“ I hope my husband passes away
in his sleep, I know I should not be telling this, but for you people
it is easier give the advice but difficult to be on other side of the
Most of the female care givers were
of the opinion that this was fate and they cannot change it.
“I feel I am cursed and because
of me my husband has to suffer”-wife
“If I would have taken my mother
in the early stage of the disease doctors say, It could have been little
The result showed statistical significance.
The care givers who thought that they are to be blamed for the current
condition of their loved ones seem to cope up better than the other
care givers. Self blame was seen in most of the male care givers. 67%
of the care givers who adapted this strategy were males. And coping
with self blame was found to be significant. Out of female care givers,
four daughters and two spouses showed the highest score of self blame
and moderated self blame was reported from the rest.
Care givers experiences of burden are
molded by their involvement in their care giving situation. From the
care givers point of view, burden in caring for a demented elderly relative
emanates from a number of interrelated factors.
The shifting of women as get into the
care giving process of their family process of elderly relatives, place
these people into a vulnerable group for developing burden and distress.
It is interesting to note that the age of the patient is not significant
with care giver factors such as distress, and burden. More the years
of care giving, more will be the experience of burden. One of the spouse
care giver said “I myself am weak, and need somebody to look after
me, I cannot take this burden any more,
I am waiting for the day of relief”. One of the unmarried daughter
said “I feel like running away from the responsibility, it looks
like never ending burden and my brothers want to escape from the responsibility
of care giving” Similar kinds of situation were experienced
by many of the care givers.
From the study it was evident that
the caregivers were craving for support and guidance from other family
members. Characteristics of the caregivers’ coping methods are directly
related to caregiver burden. For example, positive reframing methods
and using instrumental support strategies are associated with lower
levels of caregiver burden. Active strategies include “constructing
a larger sense of the illness” and being firm in directing a relative’s
behavior.(13) In the current study, most of the care givers showed
behavioral disengagement and religion as their coping methods to divert
themselves from the emotional stress. Some of the caregivers opined
that they have always tried to “cope up” with the care giving burden
and rest of them said that they are “giving up the attempt to cope
with the situation”.
Gender is important since the sexes
differ in the kind of care giving and care giving burden; males displayed
fewer adverse effects.
Most of the care givers had higher
level of education. One of the important findings is that the burden
experienced the different groups (educational level) were not significant
when correlated with distress and years of care giving. The language
of distress and burden is same for every individual despite of education
levels. Care giving was associated with more psychological complaints
and a poor quality of life both physical and mental. Although it may
be tempting to classify people according to their style of coping, the
current study found considerable change and overlaps between types of
strategies. Categorizing caregivers according to personal orientations
may be questionable. Instead, people’s relationships alter both subtly
and significantly alongside fluctuations in health and mobility. This
indicates that classifying couples or individuals according to one or
other type may not reflect their experiences over time nor the nature
of changes in relationships at times of mobility change.(13) Although
the circumstances of each individual were unique, instead of depicting
their relationships as ‘care’, what mattered most was the change
in their relationships with each other. While constructs such as ‘care’
have an important role in claims about rights and responsibilities,
it seems sensible to remember that such language does not necessarily
echo that of the everyday life of older people with dementia.
It was found out that the care givers
emotions and feelings are wide-ranging and individualistic. They used
different care giving strategies to help their situation and sometimes
they used more than one strategy.
These findings are important implications
for the theories about coping with burden. Results indicate that developing
or experiencing burden either has a direct effect on coping strategy
or influences the relationship between burden and coping strategy. In
fact this study shows that mixed strategies of positive reframing, emotional
support, venting, behavioral disengagement, self blame to be effective
Results highlight the importance of
improving the coping methods in burdened caregivers. Clinical significance
to be given more importance than statistical significance. Interventions
need to designed and tailored to the specific needs of caregivers. At
present a memory clinic program is conducted in one of the selected
caregiver setting once in a week and variety of interventions have been
developed which aim to offer support for caregivers. Interventions include:
training and education programmes and formal approaches to planning
care which take into account the specific needs of carers and people
with dementia using specially designated social workers and other members
of the healthcare team.
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