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Chapter 1: Introduction 2
Chapter One Introduction
The phenomenon of population ageing h a s attracted worldwide attention
in the recent years. The demographic and epidemiological transit ion h a s
led to increase in life expectancy and h a s reduced birth rate relatively.
This in tu rn h a s resulted in the rise of the proportion of older age groups
within the population in most of the developing countries. According to
the WHO 2001 Report projections, there will be more than 800 million
people over 65 years of age in the world by 2025, of which two-thirds of
them will be in developing countries.
Concern for ageing of the population is a relatively new
phenomenon. This issue h a s gained prominence because the proportion
of the aged in the total population h a s been increasing rapidly. Besides,
the increase in the ageing population h a s been at a higher rate t h a n the
increase in the general population. The elderly population in India r anks
the fourth highest among the countries of the world and by the end of
the present century it will be second only to China (Channana et al 1987
a s cited in Raju, 2000). When in the coming years the proportion of
elderly is going to rise, it will have serious implications for the elderly and
there will be new challenges, which the country is not equipped to
handle.
With the increase in the number of elderly population, there is a
proportionate increase in elderly population with health problems. Of the
other diseases that affect the population aged above 65 years,
gerontologists in India are now increasingly concerned with dementia, as
it is basically a disease of longevity. Despite maiy promising research
projects there is currently no medically accepted t reatment available tha t
reverses or halts the neurological damage caused by the disease. Unless
cures or means of prevention are found for common causes of dementia,
Chapter 1: Introduction 3
the number of victims will increase in the coming years. With the elderly
population growing at a rapid rate and the prevalence of dementia
increasing with age, projections of the number of impaired persons and
their caregivers are alarming.
Another key issue is that caring for the elderly is becoming an
important problem for many families. The gradual disintegration of the
joint or extended family into nuclear ones h a s adversely affected the
improvised system of care for the elderly. Employment of women h a s
fur ther aggravated the problem of providing care to the elderly.
Dementia is said to be a severe and prolonged impairment, which
t ransforms caregiving from an ordinary exchange of assis tance into an
encompassing dominant relationship. As a result of the early decline in
awareness, most patients with the illness have little knowledge of or
distress about, what is happening to them throughout the course of the
disease. It is the family caregivers who are most aware of the impact of
the disease and who experience emotional pain the most.
Caregiving for individuals with dementia h a s received more attention
than caregiving for any other type of disorder due to the following
reasons:
® The demands and negative impact of dementia caregiving are
generally said to be higher than non-dementia caregiving. They
experience higher levels of strain because they have to bear with
the behavioural problems of the care receiver such as wandering,
screaming and so on.
• The impact of caregiving includes financial, physical and emotional
problems. The caregivers' mental health is the most adversely
affected. Caregiving affects the caregivers' social life and lifestyle.
Chapter 1: Introduction 4
Moreover, there is also difference on how caregivers are affected in
general by the caregiving experience.
® A contributing factor leading to the greater negative impact of
dementia caregiving may be the caregivers' anticipation tha t things
will only get worse and this will happen in an unpredictable and
uncontrollable manner .
The constant round-the-clock demanding care required for the
dementia patient is also thought to add to the burden of care. Handson
care for Activities of Daily Living are required depending on the
functional disabilities of the patient.
It is also the family caregivers who provide the majority of clinical
care for the pat ients suffering from dementia (Anastas et. al, 1990).
Hence researchers interested in t reatment issues in dementia have
increasingly focused on primary sources of care. The family caregiver
represents a critical partner in the effort to provide quality care to the
population of elderly suffering from dementia.
The current study is an attempt to look at, how caregivers manage
Activities of Daily Living (ADL) for persons with dementia, identify coping
strategies utilised and role that social support networks play in
ameliorating psychological distress experienced by caregivers. The first
section of the chapter deals with an introduction to the disease,
epidemiology, classification and different types of dementia. The causes
and prognosis h a s been briefly mentioned.
Chapter 1: Introduction 5
DEMENTIA
According to the World Health Organisation (WHO), India's population of
those aged over 65 years, was 40 million in 1997. These figures will
increase to 108 million by 2025 and 240 million by 2050 (as cited in
Krishnakumar , 2003). The risk for senile dementia increases with age. As
the country moves from being "young old' to 'old old' dementia may
become a major problem of the next century (Rao, 1997 as cited in
Prakash, 1999 a). Dementia is a syndrome with progressive decline in
memory and intellectual functions. It is an age-related disorder with
prevalence increasing in the older population. The problem requires
urgent attention in India, due to the increasing number of elderly people.
WHO estimates tha t two out of every three patients with dementia will be
in developing countries. This is a warning signal for India to face this
'si lent epidemic' (Figueiredo, 1993).
Dementia raises psychosocial aspects at many levels (Rabins, 1988).
• Many sufferers of dementia are aware of their declining mental
abilities and are distressed by it.
• Majority of the persons with dementia are cared for by family
members at home and not in institutions. The caregivers struggle
daily with the mental deterioration and the increasing amoun t of
physical care often required by the patient as the disease progresses.
• Family members mus t also cope with the rising incidence of
behavioural problems as the dementia progresses. Many families are
burdened by financial strain as well.
• At the societal level, new services continue to be developed to provide
the physical and psychological care required by the disease.
Chapter 1: Introduction 6
There have been changes in the definition of dementia over the years.
Dementia is a syndrome (collection of signs and symptoms) characterized
by progressive intellectual decline, learning and retrieval impairment,
loss of language skills and affective responses. The modern concept of
dementia emphasizes that dementia is a global decline tha t affects more
areas of intellectual functions than j u s t memory.
International Classification of Diseases (ICD-10) defines dementia as
follows:
A. There is evidence of each of the following: -
1. A decline in memory
2. A decline in cognitive abilities characterised by deterioration in
judgment and thinking, such as planning and organising, and in
general information processing.
3. The decline in 1 and 2 causes impaired abilities in daily living.
B. Awareness of the environment (that is, absence of clouding of
consciousness)
C. There is decline in emotional control or motivation, or a change in
social behaviour manifest as at least one of the following: emotional
lability, irritability, apathy, or coarsening of social behaviour.
D. The symptoms in criterion A should have been present for at least
six months .
Dementia h a s also been defined as brain disorder tha t affect
multiple cognitive functions or domains such as memory, language,
visuospatial perception, praxis, insight, reasoning and judgment .
These cognitive changes exist with various degrees of change in
personality and behaviour (Kaye, 1998). The cognitive and
behavioural changes inevitably affect activities of daily living.
Chapter 1: Introduction 7
Epidemiology
The ageing of the world population began at different times in different
countries and is proceeding at various rates. It h a s been estimated that
there are about 37 million people worldwide suffering from dementia.
About five percent of men and six percent women over 60 years of age
are said to be affected with Alzheimer's Disease (WHO Fact Sheets).
The prevalence of cognitive impairment consistent with dementia
doubles every five years (Jorm, et al, 1987 as cited in Kaye, 1998). At age
65, one per cent of the population will have dementia whereas over 50
per cent of individuals who live into the tenth decade may have cognitive
impairment (Kaye, 1998). Intensive studies are being under taken in
various par ts of India regarding prevalence of dementia. Dementia
contributed to 20 per cent of mental disorders in a study of 150 elderly
hospital subjects (Rao, 1987). In an epidemiological s tudy (Shaji et al,
1996) in a rural community in Kerala, 69 cases of dementia were
identified among 2067 persons screened so prevalence rate of 3.39 per
cent was found of which, 58 per cent were Vascular Dementia and 41 per
cent were of Alzheimer type. Another epidemiological study in an u r b a n
community sample in Cochin showed a prevalence rate of 34 per 1000
population (Shaji et al, 2000). But 10 /66 Dementia research group
reported prevalence of Dementia in Kerala to be 1.3 per cent to 5.3 per
cent for all those aged 60 years or more and 1.7 per cent5 .2 per cent for
all those over 65 years. Similar studies conducted in Madras (Rajkumar,
et al 1997) reported prevalence of 3.5 per cent in rural population. The
large variation in age-adjusted prevalence of dementia for elderly (10 /66
Research group) was explained by either genuine differences in dementia
prevalence or may be simply as a result of the methodological differences
between studies. The general trend is that the age-adjusted prevalence
est imates for dementia from the developing world are lower than those
Chapter 1: Introduction 8
from EURODEM (Srinivas, 2002). (EURODEM is a European study
conducted by European Union).
A dementia prevalence study (shown in the graph below) in six
centres in the developing world for those aged 65 and over showed tha t
ra tes seemed to be lower than in the developed world. The figures in the
developing world were compared with the EURODEM study, using data
from 12 European countries.
Fig 1.1 Adapted from 10/66 Dementia Research group
One of the reasons for differences in the studies is that older people in
many developing countries have no formal education, and many of the
'cognitive tests ' that are used to help identify dementia rely on reading
and writing skills. As a result , older people in developing countries may
'fail' these tests, inspite of not having any signs of dementia (10/66
Research group).
Chapter 1: Introduction 9
Classification of Dementia
Since dementia closely resembles symptoms accompanying the normal
ageing process, it is best detected clinically. Diseases that cause
dementia may be classified in different ways. One way to classify the
disease is by the dominating location of the disease process (cortical or
sub cortical dementia). Causes of cortical dementia are Alzheimer's
disease, frontal lobe degeneration and Pick's disease; sub cortical
dementia may be caused by Parkinson's disease, Huntington's disease
etc. There is also the mixed dementia, which is a combination of cortical
and sub cortical.
Another method is to classify according to the underlying disease
(Alzheimer's disease, Vascular dementia etc), though most classification
systems are a mixture of these. The Swedish Consensus Conference
(Wallin et al, 1994) has classified dementias as primary degenerative
dementias , Vascular dementias and other types of dement ias
Primary degenerative dementias are caused by neurodegeneration tha t
primarily affects the Central Nervous System (CNS). Vascular dement ias
are caused by disorders in the cardiovascular systems. Secondary
dement ias are caused by disorders with known etiology, reversible and
treatable conditions, and disorders that do not primarily affect the CNS
bu t may lead to dementia if the brain becomes involved. Thus the general
perception tha t dementia is simply because of old age is not t rue as it is
a disease of the brain.
Types of Dementia The various types of dementia are
• Dementia of Alzheimer type ® Vascular dementia ® Multi-infarct dementia « Dementia due to Lewy body disease ® Dementia due to Parkinson's disease ® Dementia due to Pick's disease
Chapter 1: Introduction 10
Alzheimer's Disease
A German Physician Alois Alzheimer first described Alzheimer's disease
(AD) in 1907. Alzheimer disease is characterised clinically by slow
progressive decline in intellectual functions and histopathologically by
large number of senile plaques and neurofibrillary tangles in certain
brain regions. The symptoms of the disease are usually gradual and
though almost imperceptible, decline in many areas of intellectual
abilities are accompanied by physical decline. Early in the illness only
memory may be noticeably impaired. The patient may have difficulty in
learning new skills or tasks tha t require abstract reasoning cr
calculation. Later, impairment in both language and motor abilities is
seen. Alzheimer Disease usually leads to death in about 7-10 years but
can progress either quickly or more slowly. The diagnosis of AD rests on
the presence of large s t ructures called neurt ic plaques and
neurofibrillary tangles in the brain structure. The disease h a s been
identified as the most common cause of dementia (Sanzgiri, 2004).
Vascular dementia
Vascular dementia is related to various cerebrovascular disorders and
different types of ischemic lesions in the brain. The most common forms
of this being Multi-lnfarct dementia. But even today Multi-infarct
dementia is synonymously used with vascular dementia. Vascular
dementia h a s received less attention than Alzheimer's disease and a
consensus on its classification is yet to emerge (Jorm, 1990), since there
is no single pathological definition. Though the term Multi-lnfarct
Dementia (MID) is used to describe all kinds of vascular dementia there
are still debates on the classification of vascular dementia and today it is
treated as a global category, which encompasses several different
disorders. In Multi-lnfarct dementias there are a number of dead regions
in the brain, which result from series of small strokes. The brain cells in
a small area of the brain are killed, either because the blood supply to
Chapter 1: Introduction 11
tha t area is blocked or because blood cells burs ts . Each stroke or infarct
may be small bu t together the dead area of brain results in memory and
reasoning difficulties of dementia.
Those suffering from Lewy Body dementia have fluctuating
cognitive impairment marked by episodic confusion with lucid intervals
similar to tha t seen in delirium. Physical examination of the patient will
reveal Parkinsonian symptoms and it is extremely difficult to differentiate
between Lewy Body dementia from those patients with Parkinson's
disease who in the last stages develop dementia (Devakumar and Kurian,
1998).
Severity of Dementia Progressive dementia is generally staged according to the level of
functional impairment. The ability to perform a specific function depends
on baseline skills, deficits and the social environment, so the severity of
illness should be assessed in the context of past functioning in several
domains (Devakumar and Kurian, 1998). Individuals with questionable
impairment show borderline functioning in several areas bu t definite
impairment in none. Individuals with mild impairmentare likely to have
difficulties with balancing a checkbook, preparing a complex meal etc.
Those with moderate impairment also have difficulties with simpler
food preparation, household cleaning and may require assis tance with
some aspects of self-care. Those whose dementia is severe require
considerable assistance with personal care including feeding, grooming
and toileting. In profound dementia the patients may become largely
oblivious to their surroundings and are almost totally dependant on
caregivers. In the terminal phase, patients are generally bed bound,
require constant care and may be susceptible t) accidents and infectious
diseases, which often prove fatal.
Chapter 1: Introduction 12
Causes of Dementia
Dementia is the most common neurological diagnosis in old age and the
third leading cause of natural death. Dementia can be caused by several
diseases the most common among them is Alzheimer's disease (AD) and
Vascular dementia (VaD). Alzheimer's disease is said to account for two-
thirds of all cases. Most population studies (Skoog, et.al, 1996) report
tha t tha t 50 per cent-70 per cent of dementia cases have a diagnosis of
AD while 20 per cent -30 per cent a diagnosis of VaD.
Comparing the incidence and prevalence of AD in different
populations may provide clues to genetic, environmental and lifestyle
factors, which may predispose or protect individuals (ADEAR, 2002). An
area, which is capturing a great deal of attention and interest, is the
possible influence of education, leisure, physical and intellectually
stimulating activities on the risk of developing AD. Though there are
various studies being carried out, they should be interpreted with
caution, as research has not yet ascertained whether AD is the cause
ra ther t han consequence of these protective factors. There are a rguments
between researchers and some have speculated that protective factors
occur because certain activities may build u p brain reserves, which will
delay, or buffer against cognitive decline. Others have argued tha t
protective effect of education is related to its association with economic,
medical and occupational factors.
The risk factors for dementia especially Alzheimer's disease are
vulnerability genes, family history of Alzheimer's disease, female gender,
history of head t rauma, head circumference/ brain size and intelligence
(Cummings et al, 1998).
Chapter 1: Introduction 13
Course and Prognosis
Only 10 per cent of dementias are treatable. The onset, course and
prognosis of dementia vary depending on the type of dementia. The onset
may be sudden or insidious. The syndrome may recede in response to
t reatment or due to a natural healing process. It may be reversed (from
hypothyroidism) or may progress steadily (AD). Thus dementia no longer
connotes progressive and irreversible intellectual deterioration.
After an introduction to dementia and clinical features, the
following section deals with caregiving in dementia and the consequences
of providing care to persons suffering from dementia. The section also
discusses caregiving in general and the changing t rends in caregiving.
CAREGIVING
The provision of assistance and support by one family member is a
regular and usua l part of family interactions and therefore a normative
activity. Thus caregiving to a person suffering from a chronic illness and
disability is something that is not different from traditional t a sks and
activities except in that it represents an increment in care, which is
beyond the normal bounds.
Caregiving is broadly defined as the act of providing ass is tance or
care to a family member or friend that enables the care recipient to
maintain an optimal level of independence. This assis tance can be
ins t rumental or h a n d s on, affective, financial or otherwise of value or
necessity to the care-receiver.
The providers of care are categorised under formal and informal
caregivers. The eldercare scenario in the west suggests that majority of
the elderly prefer to live independently without being a burden on their
adul t children and if necessary depend on the formal sources of
support which refers to assistance from Government, state, private
sources and the like. The formal caregivers (Whitlatch and Noelkar,
Chapter 1: Introduction 14
1996) on the other hand are typically paid professionals associated with
a service organization or independent contractor who provides or
manages care for an ill or impaired person. Volunteers associated with a
service organisation are also considered formal caregivers.
In India, no alternate formal care services are available. The
informal caregivers are the most preferred and frequently used source of
assis tance. Informal caregivers are family members or friends who are
unpa id , who provide or manage care for the impaired person. Noelkar
and Whitlatch (1995) have defined informal caregiving as the unpa id
assis tance from family members, friends, and neighbours with one or
more personal tasks or instrumental activities of daily living.
When a family member requires some form of s t ructured
assistance, families go through a period of reorganisation as they
res t ructure their lives. Frequently, one individual, whether by choice or
convenience, becomes the primary caregiver. The primary caregiver in
the study is said to be an individual who has the major responsibility for
caregiving (namely spouse, children/in law), who lives with the disabled
person and provides direct help with personal care activities. The role of
the primary caregiver extends to material, emotional support and other
necessary services. The primary caregiver holds primary responsibility
for providing care. In India, eldercare has shown that the primary care
providers are the spouse, daughter- inlaw and adult daughters or sons
( Jamuna, 1995). Whereas the role of secondary caregiver is typically to
supplement the help provided by primary caregivers particularly in the
areas of household tasks, personal care etc. They may be important
sources of companionship and emotional support for the primary
caregiver as well as respite or relief from caregiving responsibilities.
Chapter 1: Introduction 15
Changing Trends in Caregiving
The population of the elderly is on the rise, thereby increasing the
population most vulnerable to chronic illness. The growing percentage of
adul t s aged 65 years and above has had a dramatic effect on the
prevalence of caregiving over the past decade. While the proportion of the
elderly and chronically ill elderly has grown the responsibility of care h a s
been placed on the diminishing number of individuals to support the
elderly. The impact of the altered demographic s t ructure h a s been a
cause of concern for the well-being of the elderly.
From time immemorial, elder care in traditional societies in the
Orient like India, China and J apan , is the responsibility of the family and
elders are the integral part of the family. The family is the primary
provider and the informal care provider. The institution of family in
traditional Indian society is characterised by the joint family system
where reciprocal obligations between the generations are widely prevalent
and preserved. Several scholars (Kalache {1990}, Nayar {1992} and Shah
{1989}, as cited in Kumar, 1999) have concluded that family care for the
elderly is culturally determined and socially reinforced in many societies
including Indian society.
However society is a dynamic system and is passing from one stage
of care to another stage overriding the traditional norms and values
considering some of them as major barriers in the path of development.
Chakrabart i (1998) feels that the family still plays a major role in elderly
care bu t the signs of change are now becoming more visible. The joint
family system, which was a source of social security in the past , is
breaking down into nuclear families. As a result of socio-economic,
political, psychological and physical changes coupled with changes in the
family, age care is becoming an area of concern.
Chapter 1: Introduction 16
Migration of younger members from rural to u r b a n areas in search
of employment is likely to pose problems for familhl care of the elderly in
the future . Migration of the young is already making an impact on the
living arrangements of older people especially in some states like Kerala,
Pun jab and so on.
Traditionally, the task of caring has fallen on women (Jamuna ,
1997) and it continues to be so even today. As the family, especially the
role of women changes to meet new demands like entering the workforce,
the family's ability and sometimes commitment to caring for its elderly is
likely to diminish in the future. Since literature shows tha t women
continue to bear the burden of caregiving as of now, providing elder care
at the family level may become more difficult in the years to come.
Today with the increase in number and proportion of the very old,
many of the family caregivers themselves are elderly. Such elderly
persons are often caught in the difficult situation of caring for their
elderly parents and at the same time caring for their own children and
grandchildren.
Thus as a result of socio-economic changes, migration, women
entering into the workforce and structural changes in the family, there
will be a dearth of manpower available to provide care to the elderly in
the coming decades.
Caregiving in Dementia
Caregiving and its study have occupied a central place in the s tudy of
ageing and especially so in Dementia. Dementia is a chronic disease of
growing dimensions due to the "greying" of the population. Although
pat ients with dementia have been identified as the first victims of the
disease, family caregivers of these patients are the second category of
hidden v ic t ims (Zarit, Orr and Zarit, 1985). Since dementia is incurable
and irreversible, the role of medical professionals in the management of
Chapter 1: Introduction 17
the illness is reduced while the role of the family is expanded.
Management of the disease consists of comprehensive custodial care
aimed at assisting the impaired individual in carrying out the activities of
daily living.
Caregiving to a severely, functionally impaired dementia patient is
usual ly a progressively demanding, all consuming task. Initially there are
only minor symptoms like forgetfulness, later changes in personality,
mood and behaviour appear and gradually the caregivers become
increasingly involved with self-care tasks. When behavioural problems
like agitation and wandering occur, the person requires cont inuous
monitoring. In the final stages, the patient is confined to bed and prone
to infections. In addition to the progressive deterioration of the
personality, witnessing the decline, suffering and death of a relative from
dementia is the most t raumatic aspects of caregiving. The care of a
person encompasses a range of duties such as daily management to
handling incontinence.
The rate of disease progression varies considerably from person to
person. Patients require an increasing amount of care as their disease
progresses towards death. Family caregivers are at a risk for health and
social problems as a result of their caregiving responsibility over the
years. They experience numerous crises in the course of the disease and
each crisis h a s its own set of demands.
Caregivers have no training in challenging caregiving skills and
often develop strategies by trail and error at great expense to themselves.
Members involved in care may encounter problems like conflicting
emotions when it becomes clear that the condition of the relative will
never improve but will progressively become more dependent.
Chapter 1: Introduction 18
The spouse, together with adult daughters and daughters-inlaw,
provide the vast majority of services for demented elderly persons. Many
of the daughters are the Svomen in the middle' who find that they are
caught between the needs of their parents and the demands of their
children and h u s b a n d s (Brody, 1981). Some even have to leave their
employment in order to provide care to their parent.
Caregiver Activities in Dementia
Old age is generally associated with ill health, physical and sensory
impairment and increased susceptibility to disease. Despite spectacular
achievements in medicine, the population continues to age with growing
infirmities and resultant dependency. The impairment increases
vulnerability and causes interference in the performance of daily
activities of living. One of the most common diseases, which cause
incapacity and disability during old age, is dementia because
performance of Activities of Daily Living (ADL) depends on memory
functions.
Many elderly in their later years suffer from disability either
(Ramamurthi et al, 1992) physical or psychological or both. Physical
disability refers to impairment of skills in performing selfcare activities
and psychological disability manifests due to impairment in cognitive
funct ions namely memory, unders tanding ability, concentration and
perceptual orientation disturbances. Assessment of disability is
important to take decisions about the chronicity of disablement of a
person. These physical and mental disabilities increase the incapacity in
performing self-help activities and dependency. The assessment of
disability of various sorts and degrees, problem of eldercare in different
cultures, family dynamics as a relevant variable in caregiving of the
elderly and the like are some of the issues of concern for psychosocial
gerontologists.
Chapter 1: Introduction 19
To conceive "Disability" in dementia has two components
(Ramamurthi et al, 1992). Firstly there is a na tura l process of ageing tha t
results in a gradual decline of functions, as one grows old. The second
refers to the 'disease effect' which is the result of infection or other types
of assau l t s on the psychophysical system which maybe biological or
psychological. It is difficult to separate the two effects, as they are
intertwined and interactional. The effects are additive in that disease
has t ens the process of ageing and ageing aggravates the effects of disease
and together they contribute to disability of some sort or the other.
Disability in Dementia, whether moderate or severe in intensity
necessarily involves certain amount of dependency on others
(Ramamurthi et al, 1992). This means that others have to extend care
and look after the disabled and execute caregiving function. A majority of
family members are ready to extend their help to their elderly members
at t imes of disability. Some elderly need constant help and support from
the caretaker such as lifting, dressing, feeding, cleaning, toileting and the
like, especially if a person is severely impaired. These tasks become
taxing and tiring if they are s t renuous and continue for a long time.
Family caregivers generally help an elderly or ill person with ADLs and
IADLs. The caregivers' assistance compensates for the care recipient's
difficulty in performing one or more of the 'activities of daily living ' a
term used to refer to such basic endeavours as bathing or us ing the toilet
or the IADL referring to shopping, transportation and the like. What the
family caregiver does is assumed at least implicitly to be the image of the
care recipient's limitations.
The current study focuses more on the dependency than on the
disability or handicap, as persons suffering from the illness have to be
cared for by the caregiver. Although the concept of dependency overlaps
with disability it is not synonymous (Wilkin, 1990) as it is possible to be
dependent without being handicapped. Van del Heuvel (1976 as cited in
Chapter 1: Introduction 20
Wilkin, 1990) has said that dependency is always in relation to a social
relationship. It is different from disability as it is not the attr ibute of the
individual and so according to the author the characteristics of the
dependency as a 'state of being' which contains an implicit recognition of
others. Dependency has been defined as a 'state in which an individual is
reliant upon other(s) for assistance in meeting recognized needs'. In the
current context dependency is a life cycle dependency as it is a result of
disablement common among the elderly.
Braithwaite (1996) used the term "caregiver workload" which refers
to the activities which carers engage in and the responsibilities, which
they accept in order to promote the physical and mental well being of
their dependents. In the current study, the term caregiver act ivit ies is
used to refer to the activities a caregiver would involve along with the
patient, in order to enable the sufferer to carry out the ADL/IADL. The
caregiver activities represent the environmental demands of caregiving
and are most similar to earlier conceptions of objective burden
(Montgomery, et. al. 1985). If this burden exceeds the optimal levels of
tolerance, resulting in stress it will have deleterious consequences on the
caregivers' personal and psychological well-being.
Measurement of ADL was developed in the late 1950s to describe
functioning and functional limitations of ill or disabled older adul ts . Katz
and colleagues later developed a measure of six ADL to study resul ts of
t reatment and prognosis in older adults. To supplement measurement of
ADLs, Lawton and Brody (1969 as cited in Levine et al 2003-4) created a
measure of eight ' instrumental activities of daily living'. Since the 1970s
several ADL and IADL measurement ins t ruments have been developed.
Later use of ADL and IADL measures moved from research on older
adul t s to research on family caregiving in the 1980s and 1990s. The
most influential work linking ADLs and lADLs to family caregiving comes
from the conceptualisation of family caregiving as a stressful experience
Chapter 1: Introduction 21
by Pearlin and colleagues (1990 as cited in Levine et al, 2003-4) where it
was hypothesized that the care recipient's need for help with ADLs and
IADLs is one of the primary objective stressors that lead to effects of
depression and burden among caregivers.
Activities Of Daily Living (ADL|
Practitioners and researchers have sought to develop measures tha t
reflect the practical aspects of physical functioning mainly due to two
reasons: General physical health measures have limits, especially for
assessing the degree of independence and functioning an individual
possess, even in the face of a serious illness such as cancer or hea th
disease. Self-ratings are subject to variation over time and distortion
based on psychological and environmental mechanisms. ADL scales have
developed as the ultimate indicators of the elderly individual's capacity to
deal with basic self-care.
With some variation across different ins t ruments , items chosen to
measure basic self care or activities of daily living include bathing,
dressing, going to the bathroom, getting into or out of bed or chair,
walking, getting outside the house or apar tment and feeding. These are
ordered in terms of decreasing dependence and are thought to be from
Gut tman scale (Katz et al., 1963). It is generally found that bathing is the
least restrictive and most common problem, whereas lack of the ability to
feed oneself is indicative of the most severe restriction of function.
Difficulty in feeding oneself is highly assodated with the presence of
other problems and is the least common ADL difficulty (Levine et al,
2003-4). Kane and Kane (1981) point out that the actual choice of ADL
scale may influence results, with different indicators being more or less
sensitive to change in physical functioning over time.
Chapter 1: Introduction 22
Instrumental Activities Of Daily Living (IADL)
Ins t rumental activities of daily living include both the personal self-care
reflected in the ADL measures and more complex activities. For example,
going shopping, a commonly used IADL indicator requires being able to
get out of bed, dress, walk and leave the house. The IADL tasks are more
complicated and require multiple skills and hence expected to show u p
first in the IADL items. Older people are more likely to report limitations
in carrying out instrumental activities than in performing the more basic
ADL. Instrumental Activities of Daily Living include six home
management activities preparing meals, shopping, managing money,
us ing the telephone, doing light housework and doing heavy housework.
Difficulties in performing IADL are related to age and sex, as for both
male and female, the percentage reporting difficulty with lADLs increase
with advancing age.
As Lawton and Nahemow (1983 as cited in Kart, 1997) reported in
the early 1970s when the fit between an individual's competence and
environment in which the individual resided is good, adaptat ion is
positive. This may be the case for the great majority of the elderly. When
environmental demands are too great, adaptation is poor and the
outcome (including self care capacity) is likely to be negative.
Some of the Caregiver Activities that will be discussed later in the
study are as follows:
Communication: As dementia progresses, language as a means of
communication becomes less effective. The individual can hardly
communicate. Dementia, especially the Alzheimer Type h a s profound
effect on language and the disease affects speech and use of words as
well as unders tanding of words. The caregiver will probably have to
initiate communication and would have to use different ways of getting
the message across and staying in touch.
Chapter 1: Introduction 23
Eating: Mealtimes can be stressful especially as dementia progresses.
There may be problems such as poor appetite or overeating. Dementia
affects the pat terns of eating. Difficulties arise when the skills needed for
eating is lost and awareness of acceptable behaviour is forgotten. It
becomes important for the caregiver to ensure that the person is getting
enough to eat and drink.
Dressing: A wide variety of problems can occur with dressing bu t they
fall in to 3 general categories: Difficulty with what is worn, impairments
in how it is worn and problems with when and where to change clothes
or refuse to change clothes. Patients may lose the ability to select
clothing. Clothing is often worn inside out or backwards and it could also
include repeated disrobing in public.
Grooming: People with dementia often become unconcerned about the
way they look. Sometimes they become attached to a particular piece of
clothing or preoccupied with some action. Their approach to appearance
and habi ts of grooming changes as the illness progresses. Bathing the
person can become a major challenge because it may result in the person
refusing to take bath.
Some of the other caregiver activities included in the study are
transportation and supervision of the patient
Levine et al (2003-4) have discussed about a conceptual framework
for the domains of family care that reframes and supplements traditional
t asks by taking into account family caregiver perspectives as well as the
aspects of care not adequately covered in ADLs and IADLs. The
contextual features determine how families deliver care.
• One feature is whether care is required rarely, frequently bu t in
predictable ways or frequently in unpredictable ways.
• A second dimension is caregiver proximity, is it enough tha t a
caregiver is in the house while someone eats a meal or ba thes or
Chapter 1: Introduction 24
does the caregiver need to be in the same room standing by or does
the caregiver have to provide h a n d s on help?
• The third challenge is the kinds of effort caregivers need to exert to
see that the need is met. Someone with a need for help in bathing
may only require supervision or coaxing and support or complete
guidance and direction.
• Finally the behaviour of care-recipient matters. They may
participate fully, actively resist or passively accept care.
• In each of the domains and sub domains of care (such as the
components of ADL care), approximate distinctions can be made
along the axes of timing, proximity, caregiver effort and care
recipient response.
Table 1.1 Contextual Features of Caregiving Domains
Note: Adapted from Levine et al 2003-4.
Such a system is said to enable researchers to under s t and clearly
why families taking care of relatives with the same number of ADLs and
lADLs differ in their experiences. The present study utilises the above-
mentioned framework with slight modifications to unders tand the
problems and the time spent for each of the caregiver activities.
According to Teri (1997) a behavioural approach for psychosocial
interventions is important when working with dementia pat ients in the
absence of pharmacotherapies. A-B-C Analysis has been recommended
for a simple unders tanding of behaviour of the patient. 'A' is the
Chapter 1: Introduction 25
antecedent or the triggering event that precedes the problem behaviour,
'B' is the behaviour itself and 'C' is the consequence of the behaviour,
which reinforces and maintains the behaviour. This approach h a s been
used to unders tand the communication pat terns that exist between the
patient and the caregiver in the current study. The environment is said
to be responsible for behaviours and hence unders tanding both the
patient and caregiver responses in the environment.
Antecedent Behaviour Consequence Antecedent Behaviour w Consequence
Figures 1.2 The ABC of Behaviour
Katz et al (1963) had developed a hierarchy of activities of daily
living. According to this individuals without disability were assigned to
level A. Those with exactly one disability was assigned to level B, whereas
individuals with Level C consist of individuals with two disabilities,
especially those who have difficulty with bathing. Those in Level D have
three ADL disabilities, including difficulty in bathing and dressing
themselves. Level E consists of those who have four disabilities including
difficulty in bathing, dressing and toileting. Individuals vho experience
difficulty in bathing, transferring from bed, dressing and going to the
toilet by themselves and who have a total of five ADL disabilities are in
Level F. Finally those who have difficulty performing all the ADLs are
assigned to level G. Today this scale is being used to measure disability
in populations regardless of diagnosis. The theoretical basis for the
assumpt ion of the Katz Scale is that persons lose abilities and become
disabled in a s tructured sequence, opposite to the order in which
primary biological and psychosocial functions are acquired.
Chapter 1: Introduction 26
Caring for persons with dementia calls for a unique combination of
assis tance and supervision and is conditioned by characteristics of the
older person and his / he r caregiver. Personality and coping styles of both
care receiver and caregiver, na ture of prior relationship and role
demands are important. Family caregiving is characterised by type of
physical demands, what amount of time mus t a caregiver devote and
what are the associated burden (Jamuna, 1990 as cited in Ramamur th i
et al, 1992).
Consequences of Caregiving in Dementia
Caregiving is stressful though caring is a behavioural expression of one's
commitments to the welfare of another. At times caregiving might
encompass the entire relationship between care receiver and caregiver.
Comparisons of caregivers to non-caregivers indicate tha t caregivers
report poorer mental health (George and Gwyther, 1986) and
psychological distress (Fiore et al 1986, Srinivas, 2002), lower morale
and well-being (Quayhagen and Quayhagen, 1988). Empirical evidence
indicates that providing long-term care affects the caregivers' mental and
physical health.
Sources of caregiver stress include:
i) Emotional and physical demands by the elderly: Characteristics of the
care recipient's illness also affect the health of the caregiver. For persons
with disabilities, the severity of the illness (whether stroke, dementia,
cancer or other debilitating illnesses) has been found to be the most
important predictor of caregiver stress. Caregivers are distressed by the
unpredictable behaviour, cognitive impairment and so on. When stress
spreads to life domains beyond the care situation, the caregivers'
psychological well-being may be affected. This can lead to depression,
feeling of anger and anxiety. Comprehensive models of the caregiving
Chapter 1: Introduction 27
process have examined the interrelationships among different
dimensions of caregiving stress.
ii) Personal limitations Caregiving has an intense impact on caregivers'
lifestyle and the most stressful infringement is isolation. After the
demands of twenty-four hour care there is no time to maintain outside
interests. As a result they become physically ill and develop stress
related disorders. On account of the bizarre characteristics of tie
disease, caregivers may lose friends and even extended family drift away.
This adds to the caregivers' loneliness and depression. It is easier to
assist when the elder care needs are minimum and transient , bu t it
becomes problematic and frustrat ing when such demands are too many
and extend over a long period.
iii) Caregiver health: There are several crisis points for caregivers, which
can be considered normative. Thus the caregiving process can be viewed
as complex and demanding. It involves a series of si tuations and
experiences, which have potential to affect the mental health of the
caregiver and the elderly. The consequences of stress among caregivers
with severe stress are mainly manifest in the form of restricted social
activities and health problems such as restlessness, insomnia, short
temper and headache.
iv) Caregiving Situation Stress is produced not only due to external
conditions of a person's life, but also by interacting between subjective
internal conditions and external conditions, tha t is with an individual's
needs, desires, ability to activate energy, unders tanding what is relevant
in life plans, aspirations, sense of hope. Generally the intensity of s tress
increases when the demands are heavy and when there is dearth of
resources or due to both. There maybe feelings of frustrat ion as
caregivers feel powerless to stop or change the course of the disease.
Chapter 1: Introduction 28
Caregivers also report financial strain as a result of providing care.
One of the possible reasons to explain this would be the fact tha t the
responsibilities of caregiving often leads to changes in work s ta tus tha t is
caregivers may lose time from work, chose to retire or give u p work
entirely while caring for an impaired relative.
Caregiving in dementia has a profound effect on all f ie members of
the family. Family members may feel a profound sense of loss a s a loved
one who was once an important person loses all his mental, physical and
social abilities. Feelings of guilt are also common among families. Long-
term care with continued commitment and responsibility carries
frustrat ion that would affect the well-being and quality of life of the care
dyads. Managing an older person with severe impairments involves
considerable physical and psychological burden on the primary caregiver
and to some extent of other family members due to sharing of care,
providing emotional support and participation in various activities which
increases the multiple demands on the caregiver.
However since caregivers are a heterogeneous population with
variety of needs, expectations and coping styles, their reactions to crisis
vary depending on psychological, social and cultural factors. As in the
West, even in the Indian settings and to a much greater degree families
care for the severely disabled. The difference between the United States
and India is that the proportion of the severely disabled, particularly
those suffering from SDAT and needing long-term care are far less in
India (Ramamurthi et al, 1992) whereas there are a very large number of
them in the United States. But there are other forms of moderate to
severe disability present in the Indian settings.
Chapter 1: Introduction 29
Invariably woman assumes the responsibility of the role of
caregivers. The caregiver situation in the Indian setting is uns t ruc tured ,
unskilled and socially invisible ( Jamuna 1997) and involves considerable
amount of stress to the caregiver.
The following sections will deal with the concepts of stress, coping and
social support which are an integral part of the conceptual framework of
the study.
STRESS, COPING AND SOCIAL SUPPORT - THEORETICAL
DISPOSITION
Stress
Even though the term stress has been used since 1930s, it was
popularised only in the 1980s. There are several fields of study, which
identify stress and coping as important variables affecting health. Stress,
especially the chronic stressors are said to affect the emotional, physical
as well as functional abilities.
The term 'stress' is described as a state of imbalance within an
organism tha t is elicited by an actual or perceived disparity between
environmental demands and the organism's capacity to cope with these
demands . Caplan (1981) has defined stress as "a condition in which
there is a marked discrepancy between the demands made on an
organism and the organism's capability to respond, the consequences of
which will be detrimental to the organism's fu ture in respect to
conditions essential to its well being". On the other hand , Lazarus et al
(1974), have used the term 'psychological s tress ' to emphasise this
cognitive dimension. The focus is on the element of the individual's
conscious appraisal of the implications of the event, his own lack of
capacity to respond adequately, and the likely consequences. Stress is
manifested through a variety of physiological, emotional and behavioural
Chapter 1: Introduction 30
responses. Hence the term 'stress' ha s been proposed from three
perspectives namely medical, physiological and psychological. According
to Holmes and Rahe (1967 as cited in Thoits, 1995) 'stress' or 'stressor'
refers to any environmental, social or internal demand, which requires
the individual to readjust h i s /he r usua l behaviour pat terns.
Holmes and Rahe proposed the Stimulus-Based Theory in
1967(as cited in Lyon, 2000), which resulted from their interest to
explore what, happens when a person experiences 'change' in life
circumstances. The st imulus approach treats life changes or life events
as the stressor to which a person responds. The central proposition of
the s t imulus model is that too many life changes increase one's
vulnerability to illness. The primary theoretical proposition was based on
the premise tha t a) life changes are normative and that each life change
resul ts in the same readjustment demands for all persons b) change is
s tressful regardless of the desirability of the event to the person and c)
there is a common threshold of readjustment or adaptat ion demands
beyond which illness results (Lyon, 2000).
The Response-Based Orientation (Physiological) with a
physiological perspective to stress was developed by Seyle in 1956.
Seyle's concepts were based on Canon's (1932, cited from Lyon, 2000)
belief tha t sympatho-adrenal changes were emergency functions.
According to Seyle (Lyon, 2000) stress is a response to noxious stimuli or
environmental stressors and defined it as the "non-specific response of
the body to noxious stimuli". Stress was said to be a response and it was
taken a s a dependent variable. Seyle explained a physiological response
pat tern known as the General Adaptation Syndrome (GAS). The
principles of Seyle's theory are:
a) The stress response was a defensive response tha t did not depend
on the na ture of the stressor
Chapter 1: Introduction 31
b) The GAS as a defense reaction, followed the stages-alarm, resistance
and exhaustion and
c) If the GAS was severe and prolonged, disease states could result. The
alarm reaction of GAS is triggered when there is a noxious st imulus.
This reaction is characterised by sympathetic nervous system
stimulation. In the second phase or stage of resistance, physiological
forces are mobilised to resist damage from the noxious st imulus. The
stage of resistance leads to adaptation or the improvement or
disappearance of symptoms and does not progress to the third stage of
exhaust ion. The stage of resistance can also lead to disease of adaptat ion
such as hypertension, arthritis and the like. Exhaustion occurs when the
stressor is prolonged or sufficiently severe to use u p all the adaptive
energy.
The Cognitive Activation Theory of Stress (CATS) is an
expansion of the general arousal and activation theory from
Neurophysiology (Ursin & Erikson, 2004). The CATS differs from other
approaches to 'stress' as it emphasises on the positive health
consequences of the normal alarm response, which occurs whenever the
mechanism is lacking an essential factor, for example a threat to the life
of an organism. The stress response is said to be a normal activation
response leading to an increase in arousal and corresponding changes in
behaviour as well as in most or all par ts of the body. The alarm occurs
when there is a discrepancy between what should be and what is
present . The theory explains psychological mechanisms explaining when
the alarm occurs and when it may become maladaptive. The alarm
produces non-specific changes as part of a general preparation to face
any form of challenge or danger and coping behaviour when it is
expected to bring positive results the alarm is reduced or eliminated. The
level of alarm depends on expectancy of the outcome of stimuli and
specific responses available for coping. The response outcome
Chapter 1: Introduction 32
expectancies are defined as positive, negative or none to the available
response. When the expectancies (a brain function of storing and using
particular information of a st imulus preceding another stimulus) are
positive then no health risk whereas ill effects occur when there is lackof
coping, which may lead to helplessness and hopelessness. These two
states may lead to somatic diseases through sustained arousal . An
essential element of CATS is that only when coping is defined as positive
outcome expectancy does the concept predict rdations to health and
disease.
According to the Transactional Model of Stress (Psychological)
explained by Lazarus, stress does not exist in the "event", ra ther is a
result of a transaction between a person and h i s / he r environment.
According to Lazarus and Folkman (1984) primary mediator of person
environment transaction was appraisal. Three types of appraisal
identified are primary, secondary and reappraisal. Primary appraisalis
a judgment about what the person perceives a situation holds in store for
one. Specifically, a person assesses the possible effects of demands and
resources on well-being. If the demands of a situation, outweigh available
resources, then the individual determines that the situation represents a)
a potential for harm or loss (threat) or tha t b) actual harm h a s already
occurred (harm) or the c) the situation has potential for some type of gain
or benefit (challenge).
The perception of threat triggers secondary appraisal, which is the
process of determining what coping options or behaviours are available
to deal with a threat. Often, primary and secondary appraisals occur
simultaneously and interact with one another. Reappraisal is the
process of continually evaluating, changing, or relabeling either primary
or secondary appraisals as the situation evolves. What was initially
perceived as threatening may now be viewed as a challenge or as benign
or irrelevant. Often, reappraisal results in the cognitive elimination of
perceived threat .
Chapter 1: Introduction 33
There are many situational factors tha t influence appraisals of
threat , including their number and complexity, availability of resources,
social support , coping skills and emotions and coping behaviours depend
on the appraisal . What distinguishes the Transactional model from the
other two orientations to stress is that transactional model includes the
coping efforts.
Caregiving Stress
Stress paradigms have three key components. The first is 'stress
outcome' which h a s been variously interpreted in caregiving research as
burden , life satisfaction or mental health. The second is the 'the stressor '
or the set of stressors, tha t demand adaptation in the individual and tha t
the individual appraises as a challenge, a threat or a loss. The third key
component is 'resources'. Resources refer to assets that an individual
can draw upon to deal with the stressor. These resources may be
psychological, social or material. This conceptualisation forms the basic
model of the stress process in caregiving (Brathwaite, 1996).
Pearlin and colleagues identified primary stressors as, those
problems and challenges embedded in the caregiving situation and
secondary stressors which are the effect of providing care on other a reas
of a person's life (Cited from Zarit and Gaugler, 2000). Stressors could be
objective and subjective dimensions. The primary stressors are said to be
made u p of the demands and tasks at tached to daily care, supervision
and management of behavioural and emotional problems. Caregivers'
emotional reactions to the occurrence of care demands represent primary
subjective stressors. In general, caring for someone with behavioural and
emotional dis turbance is a difficult task. Caregiver strain increases as
length of caregiving increases (Johnson and Catalano, 1983).
Uncooperativeness and negative responses of the care receiver on the
other hand can compound burden experienced by the caregiver.
Chapter 1: Introduction 34
Secondary stressors develop or intensify during the course of
caregiving. They do not directly involve tasks of providing care but
emerge as problems in other social roles, network relations and feelings
about self. Some secondary stressors identified include i) conflict
between caregiver and other family members and work-caregiving strain
ii) changes in the family homeostasis stimulates inter personal conflicts
and relationship are affected negatively between spouses etc. The
burden is not uniform, it varies from family to family according to
differences in the underlying diseases of the care receiver.
Another insidious source of stress is the gradual absorption of a
person into the caregiving role (Aneshensel et al, 1993). A stressor, which
is identified specifically to degenerative illnesses, is loss of relationship.
As dementia in a family member progresses the family relationships are
reorganised, the relationship becomes limited to unilateral provision of
care. The objective stressors are related to the complexity of caregiving
tasks , role overload and lack of adequate social supports . The subjective
stressors are related to the severity of the elder person's impairments,
financial problems, family conflicts, work demands, personal competence
to face the crisis etc. These caregiving stressors have the potential to
create stress in the form of behavioural consequences like tension,
anxiety, worry, depression, and restlessness.
Pearlin et al (1990 as cited in J a m u n a , 1997) reported tha t the
na tu ra l course of caregiving typically covers some stages with gradual
transit ion from one form to another. Some important stages are learning
the caregiver role, involvement in care related tasks and responsibility
and disengagement from caregiving. It is viewed as a series of shifting
configurations as each stage involves some amount of s tress and
requires some strategies to meet the demands by using various personal,
social and economic coping resources.
Chapter 1: Introduction 35
Initial interest in adaptational processes dates back to the concept
of 'defense' popularised by Freud. The concept of 'unconscious ' was given
u p for the objective study of stress, which were based on checklists of
Life Events. With cognitive revolution, there was the recognition for the
intrapsychic processes that intervene between stimuli and response and
an emphasis on conscious and observable adaptat ional efforts evolved.
These processes were called coping and it was one of the several
psychosocial factors, which are said to moderate or mediate the
relationship between stress and illness.
Coping
Coping plays a central role in theories of stress. How individuals manage
distressing problems and its effect on heath related variables h a s been
the focus of research for more than two decades.
In general term 'coping' is defined as "things we think and actions
we take" to ameliorate the negative aspects of a stressful situation.
According to Cohen and Lazarus (1979, cited in Delongis and Peerce,
2000) there are five main goals of coping efforts, which is common to
most stressful situations. They are
i) To reduce harmful environmental conditions and enhance the
prospect of recovery
ii) Tolerate and adjus t to the negative events or realities
iii) To maintain a positive self image
iv) Keep our emotional equilibrium and
v) To preserve satisfying relationship with others.
Coping is said to depend on the most pressing goal, the constraints
of the situation and the resources available to cope with the stressful
situation.
The ability to cope successfully with a stressful situation depends
on a number of factors. The primary among these are the resources one
Chapter 1: Introduction 36
brings to the stressful situation. The resources include age, income,
social support , personality etc. The resources as well as the subjective
appraisal are important determinants of the degree of s tress experienced
by the individual. Features of the situation are also important in shaping
coping response.
Pearlin and Schoolar (1978) conceptualised 'coping' as any
response to situational life stressors that serves to prevent, avoid or
control emotional distress". They state coping behaviours can function 1)
to eliminate or modify the conditions that give rise to problems 2) control
perceptually the meaning of the experience in a way tha t neutralizes its
problematic aspects. 3) Keep the emotional consequences of problems
within manageable bounds.
Lazarus and Folkman (1984) have defined coping as 'constantly
changing cognitive and behavioural efforts to m a n a g specific external
a n d / o r internal demands tha t are appraised as taxing or exceeding the
resources of the person'. The definition relates to the fact that it proposes
coping as process related rather than trait oriented, it is interactive
instead of automated. It deconstructs coping from outcomes and implies
a developmental rather than a mastery model. That is, the individual in
general is left with the choice of assessing the stress and depending on
the assessment , one will have to adopt appropriate copirg behaviour in
order to get rid of the stressful situation.
Theoretical antecedents of coping can be traced back to
Psychoanalytic Theory and Ego Psychology. Freud opined tha t ego
processes serve to resolve conflicts between an individual's impulses and
constraints of external reality. The ego processes are cognitive
mechanisms whose main functions are defensive and emotion focused
(Moos and Billings, 1982). Coping according to the psychodynamic
model, is a defense mechanism that enables one to deal with
Chapter 1: Introduction 37
unconscious sexual and aggressive conflicts. According to Freud,
defenses change the perception of stressful circumstances, which stem
from one's internal environment. However, Alfred Adler conceptualised
tha t coping strategies serve to protect the self from external
environmental threats . It was Anna Freud who suggested tha t defenses
protect one against both internal as well as external threats .
Psychoanalysis and Ego Psychology provided basis for formulation
of Life Cycle Perspective tha t focuses on gradual accumulat ion of
personal coping resources over an individual's life span. According to the
Life Cycle Perspective, adequate resolution of the transit ions and crises
tha t occur at each point in the life cycle leads to coping resources tha t
can help resolve subsequent crises.
The Evolutionary approach of Darwin focuses on the relationship
between organizations or groups of organization and environment. This
perspective lays emphasis on behavioural problem solving, which
contributes to survival of individual and the species.
While tracing the history of the concept "coping", 1960s-1980s was
a period when appraisal of an event as stressful was considered essential
to unders tanding coping efforts and outcomes. Lazarus and his
colleagues shifted focus frcm the previous conceptions of coping towards
active appraisal processes. According to the Transactional Model of
Lazarus and colleagues, coping is conceptualised as a cognitive
t ransact ion between the individual and the environment within a specific
context. One distinguishing feature of this approach is that it clearly
demarcates the appraisal process from subsequent coping responses.
Transactional approach aims to unders tand how a person appraises a
situation. The process of appraisal is said to occur when the perceiver
encounters situation (stressors) that are interpreted as excessive relative
to the resources. Hence one can utilize two levels of appraisal in selecting
Chapter 1: Introduction 38
the coping response. The first level is the primary appraisal, where an
individual evaluates whether the situation is potentially harmfu l or
presenting a challenge. This decision reflects a cognitive evaluation of the
part iculars of the stressful event and how important it is to the person's
well being. When the event is said to be harmful or threatening, the
individual enters into secondary appraisal wherein the available
resources for coping are examined. Secondary appraisals involve the
individual's consideration of what might or can be done. Depending on
the evaluation of these two cognitive appraisal processes, the individual
decides on which coping strategies to implement.
From a process perspective, coping changes over time and in
accordance with the situational contexts in which it occurs. Lazarus
(1993) h a s described the principles of process approach as follows:
Principles of Process Approach
1. Coping thought and actions under stress mus t be measured
separately from their outcomes in order to examine independently
their adaptiveness or maladaptiveness.
2» What a person does to cope depends on the context in which the
diseases occur, what is at tended to and the threats themselves also
change.
3. What is most needed in coping measurement is to describe what a
person is thinking and doing in the effort to cope with stressful
encounters . The inference about how the person is coping is made not
by the person being studied but by the professional observer.
4„ From a process standpoint coping is being defined as consisting of
'cognitive and behavioural efforts to manage psychological stress' .
5. The theory of coping as a process emphasizes tha t there are at least
two major functions of coping- problem-focused and emotion-
focused. The function of problem- focused is to change the troubled
person environment relationship by action on the environment or
Chapter 1: Introduction 39
oneself. The function of emotion-focused coping is to change either a)
the way the stressful relationship with the environment is at tended to
or b) the relational meaning of what is happening, which mitigates the
stress even though the actual conditions cf the relationship have not
changed.
The review of coping reveals that the impact of stress on the
individual is less important to the well-being than how an individual
appraises and copes with the stress. The main reason behind this t rend
could be that , coping process is the resultant of various individual and
environmental related aspects. It is the coping process, which decides the
level to which the stressful impact can be buffered through right choice
of coping and ultimately decides the level of well-being. Hence of all
individual and environmental factors, which assist the individual to
enhance coping, Social Support is said to be one of the most important .
Social support is viewed as one of the main coping resources in the
Lazarus model of stress. Individual efforts to cope with a situation maybe
supplemented by the participation of others in those efforts, which is
called social support . Thoits (1986) h a s therefore reconceptualised the
term as coping assistance or active participation of significant others in
an individual's stress management efforts. The interrelation between
coping and social support occurs through the appraisal process.
According to Thoits (1986) coping is what the individual does to meet
environmental demands, while support is seen as what others do to help
the individual cope. So this shows that impact of social support
influences psychological distress through its effect on coping.
Since coping and social support are related phenomena, support is
often defined as a coping resource (Shumaker and Brownell, 1984).
However the two concepts are not synonymous and there is a clear
distinction between support and coping. Social support can exist
independently of coping and coping strategies can occur in the absence
Chapter 1: Introduction 40
of support . A clear unders tanding of the associations among these
phenomena should strengthen the models of stress and coping.
Social Support
The growing interest in social support research in relation to
health and well-being is attributed to several factors (Cohen et al, 1985).
Firstly its possible role in the etiology of disease and illness. Secondly, in
t reatment and rehabilitation programs instituted following the onset of
illness. Thirdly, in integrating diverse literature on psychosocial factors
and disease.
The attention to the role of social integration in health and well-
being started in 1897, with Durkheim's study, which linked suicide rates
to decreased social ties. In the 1920s, the attention was shifted to the
negative effects of disruption of social networks as a result of
industrialisation and urbanisat ion.
In the 1970s attention was drawn to examining factors that could
ameliorate the effects of negative life events. It was in 1974 tha t J o h n
Cassel, an epidemiologist directly addressed the importance of
interpersonal relationships for promoting health and he demonstrated a
connection between health problems and u rban environmental
conditions. He concluded that psychosocial processes play an important
role in disease etiology. Gerald Caplan (1974 as cited in Brownell and
Shumaker , 1984) extended the conceptualisation of social support as a
protection against pathology.
In the 1980s, researchers turned their attention to the
conceptualisation of social support and examination of the aspects tha t
made a difference in coping with stress. It was during this period that
numerous studies have examined the variety of physical and
psychological symptoms.
Chapter 1: Introduction 41
On the one hand psychologists have been concerned with the
behavioural, affective and cognitive aspects of the concept (Hinde 1979
as cited in Alloway and Bebbington, 1987) whereas those with a
sociological orientation have focused more on the funct ions of social
support for the individual and the s tructures within which it is offered.
One of the first investigators to given attention to both the s t ructure and
function of social relationships was Charles.H.Cooley (1909 as cited in
Alloway and Bebbington, 1987) whose formulation of the 'primary group'
took account of both. Both the structure and function of social networks
are said to influence the risk of mental health problems.
The conceptualisation of Social Support: Different Perspectives
Social support has been broadly defined as the resources provided by
others. Cobb (1976) has defined social support as ' information leading
the subject to believe that he is cared for and loved, esteemed, and a
member of a network of mutua l obligations. According to Cobb, social
support is conceived to be a) information leading the subject to believe
tha t he is cared for and loved, b) information leading the subject to
believe tha t he is esteemed and valued and c) information leading the
subject to believe that he belongs to a network of communication and
mutua l obligation. According to Shumaker and Brownell (1984) social
support is "an exchange of resources between at least two individuals
perceived by the provider or the recipient to be intended to enhance the
well being of the recipient". Caplan et al (1976 as cited in Lentjes and
Jonker 1985) described social support as 'any input, directly provided by
an individual (or group), which moves the receiver of tha t input towards
goals which the receiver desires'. Carveth and Gottlieb (1979 as cited in
Lentjes and Jonker 1985) concluded tha t 'there is little agreement about
the definition of social support, nor is there consensus about the utility
of distinguishing among sources of support ' . Despite the diversity in
approaches taken to define social support the commonality between all
Chapter 1: Introduction 42
these definitions is that social support is frequenty considered to be a
multidimensional construct (Monahan & Hooker, 1995).
Despite important advances in the study of social support the field
is said to have conceptual problems. For many of the early researchers in
the field, no at tempt was made to give a precise definition of the
construct . Besides, efforts to define social support have in some
ins tances led to definitions that are so vague or broad that the concept
seems to have lost its distinctive meaning. According to Winnubst ,
B u u n k and Marcelissen (1988), there are four theoretical and empirical
perspectives on social support that may all be important for
unders tanding the impact of interpersonal relationships upon well-being
and health a) The view that conceptualises social support a s the
individual's degree of social integration b) The perspective defining social
support as the subjectively experienced quality of the individuals'
relationships c) the concept of social support as the perceived
supportiveness and helpfulness of others and d) the notion that the term
social support refers primarily to the actual enactment of supportive
behaviours. These four perspectives complement each other.
I) Social Support As Social Integration
In line with the work of Durkeim, many au thors have conceptualised and
measured social support in terms of social integration or social
embeddedness . Such a conceptualisation has been referred to as
s t ructural or quantitative. This has 2 prevalent approaches of measur ing
social embeddedness. The first takes into account as indicators for social
support the presence of certain social ties like marriage etc. While the
other approach focuses upon structural aspects of the individual's social
network such as size, homogeneity, stability, symmetry and complexity,
Turner , (1983). The disadvantage of this approach is that the presence of
certain social relationships does not indicate anything about the quality
of these relationships or about the actual helping interactions tha t do
Chapter 1: Introduction 43
take place. However, it mus t be noted that some network measures have
been devised to assess the social support exchanges between members of
the network. The second objection is that it is unclear through which
mechanisms the presence of social ties influences health.
Ii) Social Support As Relationship Quality
While the above approach emphasises the quantitative aspects of the
social support system, the second approach views social support in
terms of the subjectively experienced quality of social relationships of the
person and therefore sometimes labelled as qualitative. This approach
equates social support with the quality of relationships. Cobb as well as
Hobfoll (as cited in Winnubst et al, 1988) has also defined this aspect of
social support .
Iii) Social Support As Perceived Helpfulness And Suppartiveness
This perspective conceives social support as perceived supportiveness
and helpfulness-the appraisal that in case of stressful circumstances;
others can be relied upon for such things as advice, information,
ins t rumental help and empathetic undeistanding. According to Cohen
and Wills (1985), it is precisely the feeling that others can and are willing
to help them can prevent a potentially stressful event from being
appraised as stressful and thus hinder the onset of physiological and
psychological strains. Lazarus (1966) particularly h a s shown that
threatening situations change into stressors only in so far as the person
appraises the situations as such and appropriate coping responses are
lacking. Perceived social support might lead to the percepion tha t
problems are not particularly threatening.
Chapter 1: Introduction 44
Iv) Social Support As The Enactment Of Supportive Behaviours
The last notion of social support emphasizes the actual enactment of
supportive behaviours. In this perspective, social support is
conceptualised as the helpful acts performed for an individual by
significant others (Thoits, 1986), or the actions that others perform when
they render assistance to a focal person (Barrera, 1986). Many
taxonomies of supportive acts have been developed. One of the better
known of these is the one proposed by House (1981). According to House,
social support refers to all helping social transactions, particularly
emotional support, esteem support, instrumental support and
informational support. Of these emotional and esteem support are
generally considered to be the most important. In general effects of social
support upon well-being seem to occur particularly or only when the
support provided matches the needs of the recipient.
Forms of Support
Delineation of forms of support is important to answer the question of
whether social support is a unidimensional or multidimensional
resource. Weiss (1974) has specified six dimensions of social support :
a t tachment , social integration, nur turance, reassurance of worth and
reliable alliance with kin. Kahn and Antonucci delineated three forms of
social support: aid, effect and affirmation. House divided aid into
instrumental or direct help and informational support The
importance of differentiating forms and sources of support was stressed
upon to increase consistency of findings across studies. According to
Wills (1985), supportive functions are esteem support, s ta tus support ,
informational support , instrumental support, social companionship and
motivational support.
Esteem Support Or Emotional Support is used to counteract stressful
si tuations when an individual has doubts about their ability to handle
the situation. An interpersonal resource with a strong effect for
Chapter 1: Introduction 45
counteracting self-esteem threats is having someone available with whom
one can talk about problems.
Status Support is when social relationships serve a supportive function
simply because of their existence. Participation in certain formal social
relationships provides evidence that a person is capable of fulfilling
normative role obligations. Such participation involves some element of
selection or formal approval, provides evidence of being a valued member
of the community and of having the capacity to work effectively with
other community members. This aspect of social support h a s been
termed as social regulation, social integration or embeddedness in social
roles.
Informational Support is the term applied to a process through which
other persons may provide information, advice and guidance. Network
members may serve a supportive function by providing independent
assessments of the locus of the problem, by giving suggestions about the
respondent 's decisions or problem solving approach. The provision of
advice may be perceived by the recipient as an expression of caring and
concern by the other person which would tend to be interpreted as
esteem support . This form of support becomes necessary when the
individual is extremely stressed out and is beyond the person's available
knowledge and problem solving ability.
Instrumental Support, which is also termed as aid, can include a wide
range of activities such as providing assistance with household chores,
providing help with practical tasks and others. Under normal
circumstances, instrumental support is related to well-being as it
reduces the workload and provides increases time for pleasurable
activities.
Social Companionship is said to be a major contributor to positive mood.
Social relationship provides important supportive function. If one h a s
many social relationships, the possibility of having pleasurable activities
increases and one's interpersonal relationship combines several social
Chapter 1: Introduction 46
networks. Those who engage in more social activities have access to
other means of social support such as esteem support , instrument!.!
support and others.
Motivational Support is required when there are unresolved problems and
one perceives tha t it is difficult to overcome ongoing issues. When the
process is no longer interesting or challenging, it leads to frustrat ion.
Under such circumstances social networks play an important role by
providing motivational enhancement .
Measurement of Social Support
Besides lack of clarity regarding the term 'social support ' there is also
confusion regarding measurement of the concept. One approach to the
measurement of social support h a s been to use broad indicators of the
presence of social ties such a marital s ta tus and membership to
voluntary associations and the like. Others include by measur ing the
number of roles and a t tachments available, frequency of interaction with
friends and relatives. Then there are macro level studies, which provide
evidence as to how social support operates and which aspects of it is
health protective or in what degree. On the other hand, the micro level of
approach to measurement reflects that social support essentially s tems
from the quality of social ties and therefore concentrates on the quality of
part icular relationship.
There are hundreds of studies on social support and its
relationship to stress but the results are not clear. Some commentators
have said tha t the confusion of results is due to the variety of measures
for social support . Cohen and Wills (1985) have been partially successful
in trying to integrate and reconcile some of the conflicting resul ts by
suggesting tha t it is integration that is related to well-being and shows
direct effects, while emotional support would provide buffering effects in
the presence of high levels of adversity.
Chapter 1: Introduction 47
Social Networks
Social Relationship is an umbrella term, which constitutes social support
and social network. While 'social support ' refers to the actual exchange of
something within the relationship, 'social network' (Antonucci, 1985)
refers to the s t ructural or objective make u p of the social relationships. It
is the context in which social resources are contained. According to
Mitchell (1969 as cited in Lentjes and Jonker 1985) social network is " a
specific set of linkages among a defined set of persons with the additional
property tha t the characteristics of the Inkages as a whole maybe used
to interpret the social behaviour of the person involved". The
characteristics of the social network that are measured in s tudies
(Mueller, 1980) include the size of the primary or the immediate personal
network, density or connectedness, frequency of contact with network
members, proportion of multiplex relationships, directionality of
relationships (reciprocal or not) and the like.
Social Networks and Social Support
Social support or social resources represents a narrower concept t han
social network. Social network is the context in which social resources
are contained. Bott (1957 as cited in Albert et al 1998) described social
network 'as all or some of the social uni ts with whom a part icular
individual or group is in contact'. On the other hand social support is a
more subjective measure of the affective value of the network interactions
or a s defined by Syrotunik et al (1984 as cited in Albert et al 1998) as the
degree to which an individual's social needs are satisfied through
interactions with others'. The characteristics of the social network such
as size, density, composition, rate and content of exchange and
interconnectedness of members have been examined for their impact on
ad jus tment . The assessment of social support depends upon an
assessment of people's perception of their social network as containing
individuals in whom they can confide, on whom to rely and so on.
Chapter 1: Introduction 48
According to Antonucci et al (1996), 'social network' refers to the
s t ructural or objective makeup of the social relationships maintained by
the individual, which might include the number of people in the network,
their relationship, frequency of contact and density. Social support on
the other hand , refers to the actual exchange of something within the
relationship and is also called functional support , which might be
tangible or intangible like emotional support or advice/guidance.
Social support analysts turned their attention to Network Analysis
as it helps to unders tand the nature of supportive ties and network. This
approach helps to predict the circumstances in which social support is
given. It h a s been used to predict the consequences for health and also
implications of support for relations with interpersonal network and
large-scale social system. Personal network composition, s t ructure and
contents are defined from the standpoint of focal individuals. The
personal network approach is relevant to the study of social support
because it focuses attention on how the properties of the network affect
the flow of resources to focal individuals.
Domain of Social Support
The term 'social support ' refers to a number of different aspects of social
relationships. Social support is sometimes defined in terms of existence
of social relationships in general. It is also defined and measured in
terms of the s t ructure of a person's social relationships. Social support is
sometimes defined in terms of the functional content of relationships.
Some researchers were interested in the role of social networks, while
others are in the components of social support tha t is instrumental ,
particularly in coping with stressors.
According to House and Kahn (1985), the quantity, s t ructure and
function of social relationships should be conceptualised within the same
study. Only then can the relationships between the aspects and health
Chapter 1: Introduction 49
can be studied. The figure (1.3) below provides a framework for studying
social support and suggests that the relationship between the existence
of social relationship and health can be explained by different network
s t ructures or by their functional content. However social support is most
commonly used to mean the functional content and similarly social
network is most often used to refer to the s t ructures existing among a set
or relationships. Hence efforts should be made to include all aspects of
social relationships within the same study.
Figure 1.3. Theoretical framework for assessing the quality of measures of social support
Note: Adapted from House and Kahn (1985)
Chapter 1: Introduction 50
Mechanism of Effect
Theoretical interpretations of the mechanism by which social support
influences distress process vary (Miller et al 2001). Social support is said
to be special as it is beneficial to health and well-being, either directly or
because it moderates the negative effects of stress and other hazards on
individual health and well-being. Social support is said to have direct,
indirect and /o r interactive effect on physical and mental health. Social
support research originally focuses on examining the direct and buffering
effects of supportive resources on health. Social support may also
influence well-being indirectly by decreasing the number and severity of
stressful life events in an individual's life (Mitchell et al, 1982). A large
proportion of current research on social support focuses on the
interactive effects, which means that interpersonal relationships in some
may mitigate the adverse effects of stressful events by influencing the
recognition, quality and quantity of our coping resources (Brownell and
Shumaker , 1984).
The Main Effect or Direct Effect of Social Support proposes that
there is a direct relationship between social support and outcome
variable tha t is psychological distress. The direct effect refers to the
independent influence of social support on psychological distress. Direct
effects generally occur when the support measures assess the degree to
which a person is integrated within a social network while buffering
effects occur when the support measure assess the availability of
resources tha t help one respond to stressful events. The direct effect
hypothesis argues that support enhances health and well-being
irrespective of stress level. Such a direct benefit could occur a s a result
of the perception that others will provide aid in the event of s tressful
occurrences or merely a result of integrated membership in a social
network. The perception that others are willing to help could result in
increased overall positive affect and in elevated sense of selfesteem,
Chapter 1: Introduction 51
stability and control over environment. These psychological s tates may
influence susceptibility to physical illness through their effects on
immune system functioning or behaviour and physiological response.
According to Thoits (as cited in Cohen et al 1985), role relationships
provide a set of identities, a source of positive self-evaluation and the
basis for a sense of mastery and control. Health is enhanced because role
involvement gives meaning and purpose to one life and hence reduces
the likelihood of anxiety and despair. Thus support and health have a
linear relationship. On the reverse, it could mean tha t isolation causes ill
heal th rather than support promoting better health.
In contrast to the direct effect model, the buffering hypothes is
argues that support exerts its beneficial effects in the presence of stress
by protecting people from the pathogenic effects of stress. In this model,
support may intervene between the stressful event and the stress
experience by preventing a stress response or the resources provided by
others may reduce or redefine the potential for ha rm posed by a
situation. Secondly, support may intervene between the experience of
s tress and the onset of the pathological outcome by reducing or
eliminating the stress experience or by directly influencing responsible
illness behaviours or physiological processes. House (1981) h a s
suggested different ways in which support may have an impact on the
stress experience: support may reduce the importance of the perception
tha t a situation is stressful, it may tranquillise the neuroendocrine
system so people are less reactive to perceive or it may facilitate heal thful
behaviours.
The 'buffer theory' postulates that social support moderates the
power of psychosocial adversity to precipitate episodes of illness. The
idea of Buffering supposes a model in which increases in the level of
s tress places all people at risk for illness, but the impact of exposure to
high levels of stress should be buffered in the presence of adequate social
Chapter 1: Introduction 52
support . The Stress Buffering model proposes tha t social support
protects persons from the pathogenic influence of stressful events. There
are actually two stress-buffering models that is, interactive model and
the additive model (Wheaton, 1985). In the present study, the Interactive
model of s tress buffering is adopted hence the model is explained. In the
interactive model, a resource that moderates the effect of stress points to
a condition, or set of conditions, under which stress h a s substantial ly
less impact.
Support
Stress ^Distress
Fig 1.4 Interactive Effect Buffering: Resource as a Moderator Variable
The Model requires an interaction between stress and social support
such tha t the effect of stress will be significantly a t tenuated at higher
levels of social support. Hence in the study buffering is used to refer to
the interactive term -network variable x s tressor- which implies tha t
the network effects become more potent as the level of the stressor
increases.
Cohen and Wills (1985) reviewed a large number of studies on the
moderating effects of social support with regard to the impact of stressful
life events, and concluded that a buffering effect was only found when
there was a close tie between the support offered and the na tu re of the
stressors. However this pointed to the fact that although there are
several large prospective studies on the effects of social support only few
used appropriate methods for showing causal effects.
Chapter 1: Introduction 53
Social support is a popular concept due to the following reasons:
i) Interpersonal relationships are considered central to quality of
one's life
ii) Although there are conceptual and methodological problems, most
of the studies demonstrate the beneficial effects of support
iii) The recognition of importance of social ties has been applied
specifically to the domains of health and emotional well-being.
iv) Social support is an easy target of interventions designed to
bolster well-being.
ORGANISATION OF THE STUDY
In the present chapter the subject was presented beginning with a
fundamenta l core of introductory material, which develops from the
definition of key concepts, traces the brief history of how research in
these different areas came into existence and also the approaches to
s tudy the concepts that is stress, coping and social support and
caregiver activities of caregivers of dementia patients.
In the next chapter, the literature reviewed h a s been presented in
various sections, which focus on studies done in the area of caregiving,
caregiver activities, coping and social support. The review consists of
both Indian and Western studies carried out in this area of research.
The third chapter is devoted to methodological aspects, namely the
plan and implementation of the study. The background of the study
presents the rationale for the study followed by objectives, conceptual
framework, research questions, hypotheses and variables in the study.
The plan of the study elaborates on materials and methods used. A brief
discussion of the various variables used in the study along with their
operational definitions is presented. This is followed by the
implementation of the study, which includes the study area, sampling
Chapter 1: Introduction 54
method and da ta collection procedures. Along with this the description of
various statistical measures employed in the study is given.
The next three chapters describe the results of the study along
with a brief discussion of the findings. The discussions are based on
comparing and contrasting findings of the present s tudy with those of
earlier studies, observations made in western and Indian settings as well
as certain theoretical assumptions. The fourth chapter is concerned with
the description of the socio demographic profile of the dementia patient
and the caregiver while the fifth chapter gives an elaborate description of
the various caregiver activities. The sixth chapter is concerned mainly
with the Stress, Coping and Social Support of the caregiver.
As an ad junc t to the last chapter, which deals with the summary
and conclusions, implications for social work practice, training and
research as well as limitations of the present study are stated. The
appendices present the references, certain tables not included in the
chapters, and the scales administered.