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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,


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.


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.


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.


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.


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


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).


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


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


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.


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).


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,


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.


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.


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


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.


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.


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


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


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.


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.


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


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


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.


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


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.


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.


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


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


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


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 .


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.


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.


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


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


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


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


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


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.


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


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


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.


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


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


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.


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.


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


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)


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,


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


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.


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


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.

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