Advances in Anthropology
2013. Vol.3, No.2, 55-64
Published Online May 2013 in SciRes (
Copyright © 2013 SciRes.
Patients with Dementia and Epilepsy: Does Family and
Kinship Care Matters?
Ravinder Singh1, Vibha Sharma2, Upmesh Kumar Talwar3
1Department of Medical Anthrop o l ogy, Institute of Human Behavior and Allied Sciences (IHBAS) Hospital,
Faculty of Medical Sciences, University of Delhi, GNCT Delhi
Delhi, India
2Department of Clinical Psychology, Institute of Human Behavior and A llied Sciences (IHBAS),
Government of NCT Delhi, Delhi, India
3Department of Social Work, Central University of Himachal Pradesh, Dhramshala, India
Email:, vibhakab i, talwarmsw@gmail.c om
Received January 18th, 2013; revis ed Feb ruary 26th, 2013; accept e d M arch 5th, 2013
Copyright © 2013 Ravinder Singh et al. This is an open access article distributed under the Creative Commons
Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the
original work is properly cited.
Paper reports nine Case Studies each of epilepsy and dementia patients. Content analysis of family and
kinship care in their families reveals significant issues of social stigma, marriage, school education, em-
ployment etc. among epilepsy patients as main concern while care of dementia patients in family concerns
to spouse caring. It explores stigma affecting socio-cultural understanding of epilepsy and dementia. How
these patients are cared within their family. Who care them most? It illuminates relevance of family and
kinship care givers and recommend culturally appropriate interventions in community of such neuropsy-
chiatric diseases.
Keywords: Epilepsy; Dementia; Family and Kinship Care
Anthropology of caring has already explored a new path for
individuality, alterity, gender relations, and new form of social-
ity in everyday life experiences of caregivers, spouses, children,
and other relatives who provides day to day care to person with
illnesses living in the home (Saillant & Genset, 2007). Nor-
mally caring is considered to be the work of the women fol-
lowed by other kinsmen in the family. Can the family and kin-
ship caring intervention be analyzed in home or in community
or in hospital situation? Anthropologists have reformulated the
kinship as the study of form of caring and being cared for
(Borneman, 1997). We illuminate family and kinship care, as
complementary part of comprehensive patient care, in the fami-
lies of patients with dementia and epilepsy in the paper.
We explore care and its burden in the family of these patients.
Here we are giving the brief about dementia and epilepsy fol-
lowed by case studies of patients focused on the family and kin-
ship care composition and their sibs involved in the caring. Cli-
nicians give the prime importance to clinical symptoms, pres-
entations and management of neuropsychiatric diseases but
management of these diseases requires comprehensive care
within the families of such patients besides medicines.
Dementia and Epilepsy
The dementia and epilepsy are neuropsychiatric diseases and
are causing social suffering to the family as well as to community.
About 450 million people are affected in the world. One esti-
mate reveals 13 percent of disa bil ity -adjusted life y ears (DALYs)
are due to neuropsychiatric disorders (Chandra et al., 2006).
Dementia/Alzheimer’s disease (AD) is a deterioration of intel-
lectual function and other cognitive skills interfering with social
and other occupational functions. It is most common diseases
worldwide among the people above 65 years (Ibid). The preva-
lence of dementia becomes the double with every five year of
increase in age (Henderson & Jorm, 2000; Chandra et al., 1998;
Hendrie et al., 1995; Rajkumar, Kumar, & Thara, 1997; Jorm &
Jolley, 1998). The behavioral and other psychological symp-
toms of dementia are a major source of stress to family mem-
bers caring their patients. It has been proved that training to
family caregivers in behavioral management techniques, in-
cluding problem solving, memory training, and reality orienta-
tion has reduce the level of agitation and anxiety in patients
with dementia (Brodaty & Gresham, 1989; Haupt, Karger, &
Janner, 2000), counseling interventions for caregivers have
shown positive results in such cases(Marriott et al., 2000). Me-
dical anthropologists have produced remarkable work on de-
mentia/Alzheimer’s Disease in different national sites of Brazil,
Canada, Germany, India, Japan, Netherlands and the United
States around the world (Leibing & Cohn, 2006; Cohn, 1994,
1998, 2003). It includes dementia-near-death and Life itself
(Kaufman, 2006), physician and family perspective on “trou-
blesome” behavior of people with dementia (Hinton et al., 2006),
diagnosing dementia (Graham, 2006); genetic susceptibility and
Alzheimer’s disease (Lock, Llyod, & Prest, 2006); and social,
cultural and ethical issues relating to patients with dementia
(Singh et al., 2011). Lawrence Cohn’s No Aging in India: Alz-
hemiers, the Bad Family, and Other Modern Things, is the pio-
neer anthropological work on dementia in India (Cohn, 1998).
Epilepsy or Seizure disorder is cerebral malfunctioning, a
pattern of repeated sudden brief attacks of altered conscious-
ness, motor activity or sensory phenomena. Studies have been
reported on the epilepsy covering the different aspects and
about 10 million people are suffering from epilepsy in our
country (Gourie Devi et al., 2004a, 2004b). An estimate based
on projected people with epilepsy is 5,500,000 and 4,100,000
of them stay in rural areas. There is a significant level of under-
reporting of such cases because of the stigma associated with
seizures. The ethical and legal issues related to patients with
dementia and epilepsy (Sharma et al., 2011), childhood epi-
lepsy and knowledge, attitude and perception of the school
teachers of Delhi (Khurana et al., 2012) have been critically
examined in Indian perspective. Studies on caring epilepsy
patients have also illuminated spiritual psychotherapy of care-
givers (Singh et al., 2012a) and care giver burden, personality
characteristics and coping strategies of care givers of patients
with epilepsy (Singh et al., 2012b). A well known psychiatrist
and medical anthropologist has very nicely documented all
these aspects as the social course of epilepsy suffering, chronic
illness as social experiences in his field work in China (Klein-
Material and Methods
Interview of the Dementia care giver and Epilepsy patients’
as well as of their care givers were conducted between August
2006 and July 2007. Detail of socio-demographic variables of
sixty patients, dementia (22) and epilepsy (38), is given in Ta-
ble 1. A semi-structured schedule was used for interview during
their neurology OPD visit as well as through home visits to
substantiate the desired information at the week end. Initially
Table 1.
Socio-dem ogr ap hi c va riable of dementia and epilepsy patients.
S.No. Socio-demographic
Variable Dementia
% (N = 22) Epilepsy
% (N = 38)
1. Age in
Mean Range 63.5 36.7
Male 10 (16.66) 22 (36.66)
2. Sex Female 12 (20) 16 (26.66)
Married 22 (36.66) 15 (25)
3. Marital
Status Unmarried 01 (16.66) 13 (21.66)
Yes 21 (35) 11 (18.33)
4. Financial
Support No 01 (1.66) 17 (28.33)
Hindu 22 (36.66) 21 (35)
5. Religion Muslim 00 17 (28.33)
Primary 02 (3.33) 12 (20)
Secondary 11 (18.33) 17 (28.33)
6. Education
Secondary 10 (16.66) 09 (15)
Haryana 01 (1.66) 00
Delhi 13 (21.66) 22 (36.66)
7. State
Domicile Uttar Prades h08 (13.33) 16 (26.66)
one of us (RS) visited some of them purposely to complete the
information which they could not share about traditional heal-
ing practices, if they consulted? Most of them don’t like to
share with the physicians in their consultation rooms who, as
they think, exclusively meant for diagnosis, prescription and
pay less attention to these aspects of alternative healing consul-
While the interviews, with the consent, of the care giver of
dementia patients were held in the wards as well as in OPD of
the hospital. Someone from the family members or other kins-
men always accompanied the patients with dementia and was
interviewed as a care giver.
Patients with Dementia and Epilepsy
Patients with dementia which were interviewed from the dif-
ferent places in Delhi like Sundar nagari, Gokulpuri, Pandav
nagar, Dilshad garden, Krishna nagar, Nehru Nagar, Shahdara,
New Govindpura , all comprised as Trans Yamuna of Delhi. Most
of patients come to this tertiary care neuropsychiatric hospital.
A s emi stru ct u r ed sched ule wa s di vided into four major s ec t i o n s:
first, deals with the socio-demographic detail; second, food
habits—how many times patients in the past has been taking
the meal per day, constituents of the staple diet-green vegeta-
bles, fruits consumption, spices consummation, Non/vegetarian.
Third, Family profi le, family support ing me mbe rs, time spen t in
caring and the fourth, life history of the person: scholastic per-
formance, nature of job and earning, number of hours spent in
the jobs, level of satisfaction and stress of the job. Life after the
retirement, marital history, family responsibilities, peer group
activities in the life and important events in the life. This in-
for mat ion was c ollected in a structured schedule. One of us (R S)
conducted an unstructured interview with care giver. Here
while writing this paper we have restricted our interpretation to
the family and kinship care composition and how much time
they give in the care of patient with dementia. Other detail nei-
ther analyzed nor utilized, as it was useful for the clinical and
neurological interpretation.
Whereas most of the epilepsy patients were from Uttar
Pradesh followed by the Delhi which share similar culture, but
religious practices varies according to their religion viz. Hindu
and Muslim. A large number of epilepsy patients come from
Aligrah, Gaziabad, Muzffarnagar, Meerut, Bulandshar, Morad-
abad, Gujrola, where as some of these people are from trans-
yamuna areas of Delhi which includes Nanad Nagari, Sunadr
Nagari, Wazirabad, Yamuna vihar, Gokulpuri, Saboli extension,
Ashok Nagar, including other parts of Delhi. In some cases
people came from other far of places- nearby districts of Hary-
ana for the treatment to this tertiary care hospital. In our pa-
tients population most of them are from the low socioeconomic
group and are living in the nuclear families in Delhi whereas
the people from the Uttar Pradesh belong to rural families are
engaged in agriculture activities.
Patients with Dementia
We are giving nine brief case histories of patients with de-
mentia—four women and five men. Most of the details, such as
diet, routine of patient in the past years, brain activities of cal-
culation, teaching etc. help to Neurologist in clinical assessment
of these patients and deliberately have not used. We have re-
stricted family and kinship care involved in dementia patients
Copyright © 2013 SciRes.
(patients name are pseudo name).
Women with Dementia
1) HKD, 60-year-old Hindu jat woman, came from the rural
village Rehman Pur of Shamali, Bulandshar, UP. She is illit-
erate housewife and look after the agriculture activities in the
house as well as in the field in past. She had been working 12 to
17 hours every day. She had seven children, four boys and three
girls. All are married and well settled. Married sons have settled
away from their ancestral village. Both, husband and wife,
HKD, stay back alone and their monthly income is about
10,000/-pm. She had been diagnosed a case of AD at the age of
60 years. She is well build and tall. A brief history about her
life style in past shows that she is married for 45 years where in
she took all the responsibility of the household activity. Her
husband told about her she never felt more stress. She spent 3
to 4 hrs in recreational work with her peer group. Her husband
claims that she is satisfied. Nothing has disturbed her in her
In the Family and its support, all sons stay away from the
parents, particularly from the patient mother, husband visiting
their married sons and daughter. Wife, HKD, remains back in
her house. Often sons contribute economically to the parents.
But physically they hardly stay long. It is apparent parents liv-
ing alone in the village setting. Most of the time husband cares
his wife; none of the daughters-in-law stay together though
their children often stay back with grandmother. Financially
sons support the parental family. Married life of the patients,
HKD, is very satisfactory and supportive to each other in their
life for 45 years. As the mother, HKD cared well her children,
home and enjoyed happy married life in company of husband.
2) KR is another woman, above 60 years, diagnosed with
Dementia. She had been complaining the memory loss, failing
to recognize the sibs and kins in the family during the early
November and December 2006. Her family members treated
her with local trained doctors in Baraut. But there was no cure
till Jan. 2007. Meanwhile she rapidly lost the memory and re-
ferred here where she was diagnosed as dementia of AD type.
Her daughter brought her in Delhi for treatment. This daugh-
ter further adds that KR has four children and a husband. One
sister and son are already married. Married son had been living
together till October, 2006, just before these symptoms of
memory loss appeared in KR. KR used to love her married
elder son Ashok and his children and till then KR was very
active in the home chore activities of the house. As the patient
began to exhibits the symptoms as mentioned earlier, she now
requires more time for her care and sympathy of other family
members. During this time, elder married son, refused to take
care of her mother and his wife also refused to look after her
mother-in-law. Her husband also refused to care her in such a
situation and even did not help for her treatment as the wife.
Then her unmarried two sons in the state of dilemma trans-
ferred her to their elder sister’s house in Delhi for care and
treatment. Both unmarried sons are looking after the economic
expenditures of patients—their mother. In sum, married daugh-
ter is looking after her AD mother belongs to the high socio
economic stratum of a rural village where a married daughter
ideally does not keep her parents in her in-laws house. Two un-
married sons supporting the economic needs, but still seek the
other social support from their married sister.
3) SK, 71 years old Hindu woman, housewife, had three chil-
dren—one son and two married and one married son is living
on the top floor of the three story house. SK and her husband
live on the ground floor. Her only married son has two children
living separately on top of the house. Her husband adds further
that he runs his family life on the pension of Rs 3000/-pm and
his son hardly supports them, in contrast they support as their
son’s family. Their son does not earn much.
4) AD, 75 years, old Hindu illiterate woman has five married
children and the husband who look after her for the four years.
Four years ago she developed the dementia and lost to no work.
AD remains the part of family and being cared by the well set-
tled married five sons and a daughter. Her daughters-in-law and
their children care much. She had been a active housewife an
used to work 8 to 10 hrs. She takes the different smoking means,
traditional hukka, chilim, tobacco and bidi. She does not earn
herself. As far as her part on the responsibility of bring up chil-
dren which did nicely and had their own house, settled well all
children and still pay attention to the social responsibility. Oc-
casionally she spends times with her pear group. As her young-
er son tells that she thinks much of the past unpleasant inci-
Men with Dementia
5) BS is illiterate agriculturist Hindu Khastryia from Gorak-
hpur district in eastern UP and diagnosed for the vascular de-
mentia. He had more than 40 years of married life and blessed
with five children: two daughter and three sons. His wife sup-
ports in his endeavors and children occasionally help him and
are settled in Delhi. Patient is second among his sibs and he
cared all younger sibs himself. He expressed that he did not did
much for his own children. Where as his younger brothers
hardly cares him now it is this hurts and make him sometimes
He belongs to extended family of 10 to 11 family members.
His wife cares him very well. His two sons work, elder works
as auto driver in Delhi and both remain away from their ances-
tral residence where their parent stays alone. The wife is main
the care giver. Children are away from the caring work of their
father. Though BS is brought to Delhi for the treatment and
hardly gets any support of care from other secondary kinsmen-
particularly his younger married brothers and their children.
Though, BS took all the responsibility of paternal family and
made house for them, settled them, and also met social obliga-
6) SC, 65 years, dementia patient, a post graduate from Go-
vindpura of Trans Yanmuna Area suffering with dementia. He
is retired from the active service of 33 years as account Officer
and getting a pension of Rs 6000/pm as tells his wife.
In Family care all are living in the joint family of the SC
which is comprised of two married son and their three and two
children respectively. Their two younger sisters are married
away. Families of both son stay with SC and both run the elec-
tricity goods shop. Wife of SC is main care giver. House of SC
is three storied. Eldest son and his family stay on the top floor,
younger son and his family stays on the first floor and SC with
his wife stay on the ground floor. Two married sons staying
wit h SC on two different floors-l ayered structured houses whe re
their bonds are weak with their old parents. Both sons hardly
interact in the day and they are busy in their personal families
after the hectic day at the shops. Wife of SC further adds that
Copyright © 2013 SciRes. 57
some unpleasant issues are discussed in his presence which hurt
him more. Such inci dents make SC to think about some jobs or
to earn money for which is they are looking towards the mar-
ried sons. However he has retired from the government office
where he performed the mental calculation and kept himself
active in life. He tried some pity shop in the house but still it is
his wife who runs it now, as does not enjoy any more this work.
Prior to it he tried another shop, halwai ki duhkan, but he gave
up after sometime. SC tried in many engagements to earn
money after the retirement but failed. His wife looks after for
his care. As far as daughter-in-laws are concern they hardly
care him. Reasons are very different in this case as wife tells, he
is not able to maintain his normal body dressing and often he
forgets to wear undergarments which put other care givers
away in the family, particularly the daughter-in-laws and their
children or even their own sons hardly pay attention the per-
sonal care of their father. It left to the wife alone.
7) FS, 58-year-old man, is matriculate and has retired as sub-
Post master from the government services after serving for the
more than 20 years and living in his own house. He depends on
the pension. He had been diagnosed for A lzheimer Disease (AD)
in 2004 being treated since then. He is married for more than 40
years and had three sons. Elder one is married and separated
from the parental home and living separately with his wife and
two children. FS and his wife stay on the top floor and FS is not
aware about separation of his elder son form his family. As far
as care of FS concern it is his wife who most of the time on the
caring her husband, FS, who is supported their two unmarried
sons. Though, they could not give much time for care to his
father as they are busy in jobs and though stay with the parents.
As wife tells further that FS cannot manage his normal behavior
and is cool and calm but needs the direction for the self man-
agement. Often he stares women, young girls and put off his
garments, particularly the lower one. Such frequent episode
forced his wife in embarrassing situation, to keep him separate
from other family members. Their monthly pension is about
9000/-pm. FS expects much attention from his eldest married
son who is living separately with his two children.
8) SS, 70-year-old Hindu causal agricultural labor from a ru-
ral village in Muzzafarnagar, UP. He is illiterate and unmar-
ried among six married brother and sister. All are well settled
and living in joint family. He is being looked after by the elder
brother and his wife and their children. His other brothers also
pay a tt ent io n to him. In his life he has seen many ups and down .
He has huge amount of debit and sold off a piece of his agri-
cultural land and tried several menial works which had caused
much suffering and put him in depression. Prior to onset of the
AD dementia he used to earn at least Rs 1500/-pm. But he now
is dependant up on the brothers and their family adds one of his
younger brothers. He is looking after the children of his brother
and younger sisters. Sometimes SS is not able speak much.
Previously he used to meet relatives at different places.
9) IJS, 66 yrs, an old Sikh male, suffering from t he dementia ,
staying with his wife, with a married son and two grand chil-
dren. His wife care and manages to her husband (IJS). IJS used
to earn Rs 2000/-pm from his factory. He had been trained as
fitter and had set up his own factory where he used to work for
15 to 20 hrs per day. He was very satisfied form his job. They
live in their own house. Wife cared well IJS as they are living
together. Daughter is already married away and do not support
much. IJS used to run a factory and supervise the fellow work-
ers. Gradually he forgets things and subsequently fails to rec-
ognize his workers in the factory and fail to do minor calcula-
tion. Still he is on the treatment. He often goes to his factory
with the son and tries to do trivial thing under supervision.
Patients with Epilepsy
We summarize here the brief case histories of Patients with
Epilepsy: five school children, three married women and a mar-
ried man (name has been changed).
School Children with Epilepsy
1) VK, 16 years, another school child of 12th class preparing
the board examination. His mother narrates about his seizure
began when he was eight years old. Toady nearly eight years
passed in the treatment for the seizure. During past eight years,
some traditional healers treated him for one year in his maternal
uncle house in Himanchal Pradesh. These healers used, as his
mother narrates further, tabeej, mantra rituals and scared thread
etc. but VK had no cure in his maternal uncle house. He visited
the different places for the traditional treatment including the
well known big hospital in Delhi. Initially, as his mother tells
that she did not know it is a disease, while one doctor treating
him then told her that it is a disease, epilepsy, and doctor re-
ferred him to this hospital and VK re-assumed the treatment in
the tertiary care neuropsychiatric center. Further she adds about
VK that he feel shyness or hesitates in visiting to the hospital
after an interval of fifteen days. His mother admits the trouble
in bringing him here in outpatient department for the routine
checkup. He does not want to come very frequently, she con-
tinues further that his friends and neighbor make fun of him by
saying that his treatment is going on from this hospital, and
feels it. As his mother says
Main usko chupake lati hun taki padosi bhi nahi jante ke
eska ellaz yahan se ho raha he aur VK ko ye achha nahi
lagta ki usko bar bar yaha ana achacha nahi lagta he!” (I
bring him hospital in the hiding, he does not like to visit
the hospital frequently, even his friends and our neighbor
do not know about the treatment. It is only we the family
know the about it and we do not share his treatment with
However his treatment continues from the hospital. His sei-
zures are under controlled.
2) KV, 13-year-old boy, study in primary class in his home
town Moradabad, having the complaints of seizures since 2007
and on 27 May 2007 he had 9 episodes of seizures and followed
by 3 seizure on the next day. Because of the complaints neither
he was not allowed to appear in the examination nor he ap-
peared and finally he dropped a year in the fifth class. KV stays
with his uncle in Moradabad and his father work in Gajrola
where he is Patwari visit him at the weekend and could not pay
attention to his academic activity. In the class situation has
classmates tease him due to Caste Status and often pass the
derogatory remarks due to his caste and it creates tension and
always haunt him. He requested his father to change school due
to this. KV feels disturbed in home could not concentrate on the
studies. Common shouting or asking with hard word to get
thing done caused ultimately seizures (?). This patient was re-
ferred on the advice of the some relative to this hospital.
3) SNZ, 12-year-old girl from the Muslim lower socioeco-
Copyright © 2013 SciRes.
nomic status from the Tahirpur village near to our hospital, she
has been diagnosed for the seizure for the five years. She had
first episode of the seizure at the age of seven years, in the
school and it continues to the next few days. As first episode of
the seizure her took her to the local healer of their community,
Molvie, and for the 6 months she remains under his treatment
but her parents visited again another healer, Ojha but nothing
cured her illness, and her father visited in the hopeless situation
to Pediatrician, who advised her father for the proper neuro-
logical treatment and referred to our hospital. She had reduced
the frequency after the treatment much from every day to week,
then in ten days to once in a month within a year and her sei-
zures was under the control. Her school teacher advised her not
to attend the school and parents though continue her treatment.
She lost the precious years of school education due to this dis-
4) SND, 18 years male, a 9th class student in the Aligrah has
been suffering the seizure disorders for the past three years and
discontinued his studies because of seizure and though he used
to cycle 6 km one way to go to school. He had first episode of
seizure at the age of 15 years and his family members took the
treatment form the local healers in Chachera, Aligrah, UP. He
also went to Vaid Rajvir Singh who is also well known as Bha-
gatji who had claimed the cure of several cases of the epilepsy.
Snd was given the treatment for the one year and it forced his
studies and the vaid treatment gave no relief to him. Though the
cost of herbal medicinal treatment was Rs 42/-per month. He
was also treated by Traditional healers’ for epilepsy. While he
was being examined for the diagnosis in the OPD t hen hi s fat he r
planned for another visit in Anupshare near Blundshar. But a
neighbor, who had been taking the treatment from the hospital,
the advice his father, had advice to visit this hospital for the
treatment. His treatment continues now from the hospital but
still his family members are looking for the alternative healing.
Snd wants to continue his studies but his parents prevented him
due to fear and social stigma felt in school as well as in neigh-
borhood areas of to his house. It seems that family feel the
stigma in the society.
5) USH, 16-year-old girl from Nand Nagari, Delhi. She is the
student of 8th class and recently complaining the seizures for
four years. She continued the treatment straight from this hos-
pital. Her seizures subsequently controlled. Seldom episode of
mild episode of seizure disturbed her and these may occur in
the school. Here she expresses that their teachers and class
mates help at the time of the seizures. She felt that both teach-
ers and other students are helping her at the time need. She
suffers and she says
Kash mai mar jaun, bahut ho gaya es bimari se, har sa-
may dar laga rahta he” (If I could die, it is enough of
seizures. Every time I am afraid of seizures)
She further released the economic strain of expenditures on
this disease made her sicker as she says
bahut paise kharch ho gaye, lekin kuch tik nahin hota,
acha hota ki mai mar jaun! Na tik se pad sakete he, Na khel
sakete he!” (Much has been spent on this disease; nothing
turns right to my disease. It would be better if I die. Nei-
ther I cannot study well nor can play well)
Ush has developed a guilt which is giving her more suffering
than the disease.
Married Women: A Hidden or Unheard Voice!
6) Two Sisters, Arth (19) and Svit (17), identified for the
seizures disorders. There are three sisters; all suffer of seizure
disorders, among four children of poor parents from Hathas in
Aligrah, UP. About two years before this visit, as her mother
informs that the elder two sisters were under the treatment of
local healers. As she narrates further the episodic drama and the
treatment procedures of healers: pir, mulaji, tantrik, etc. in Ha-
thras. A Mulaji, a Muslim religious healer, treated these sisters
in Gahaziabad who administered some herbal medicine and
massaged the Sunflower oil on the whole body of both and it
continues for the nearly two months. Their mother noticed no
relief from the local treatment. She was totally lost to hope. A
closed relative told about these symptoms as epilepsy and direct
for the treatment. This relative stay in Delhi and is well edu-
cated in the often interact the family. These two married sisters
were referred and presented themselves in the OPD and treat-
ment follows.
Meanwhile elder sister Arth was married off in the state of
hopelessness of epilepsy cure and Svit visits the hospital with
her mother for the treatment and Arth also come along when
she need medicine. Arth never come with her husband and she
try to make her way out to the hospital. On the each visit 15
days medicine are given to her and hence it seems she visits her
mother every two weeks and stay till she gets her medicine. Her
mother informs that it was told in advance to her husband and
his parents’ i.e. in-laws. But it seems not so (? ). As she conti n-
ues to narrates episode of seizure during the marriage of Arth,
her elder daughter marriage she narrates while Arth was about
to take the phere—in Hindu ritual of marriage both husband
and wife take seven scared rounds of fire in presence of the all
the relatives, then patient had an attack of seizure in the special
room and the phere were delayed for one hour then it was
managed to carry out the phere with much of the defense to the
groom relatives.
Their mother while narrating the suffering caused due to the
disease she expressed her agony
Ya to bhagwan mujhe uthale, ya mere tino batiyo ko tik
kar de!” harma jeevan nark ban gaya he!”(Let the God
give me the Death or Give the cure of all my three daugh-
ters, our life has become the hell!).
She became sad and tells there is nothing enjoying in my life
and she broke up to weep.
7) Yasda, 26 years, married woman from Nand Nagari who
is suffering seizure disorder for past thirteen year. As her care
giver, husband, accompanied to OPD. She had injuries on the
forehead near left eye. She had been treated for it in GTB Hos-
pital first in emergency after she was referred to here with her
husband. one of us (RS) saw her feeling uneasy and dizziness
and relaxing the on the chairs near to Clinical examination
room and I offered her and my room where she relaxed on the
stature and her Husband and her Parents sat outside the room
and one of us (RS) conducted informal interviews of her par-
They narrate that Yasda had a history of Seizure disorders
three to four every day for the past several years. Initially her
parents treated her for the seizure in Bareilly and Neeraj Clinic
in Haridwar for three years and her parents’ recall that about
1.5 lakh has been spent on her treatment in these clinics. She
was treated in RML Hospital, and some antiepileptic drug re-
Copyright © 2013 SciRes. 59
acted and her situation turned very worse. Her parents became
hopeless of the treatment of these seizures in hospitals of Delhi
—RML hospital, GB Pant hospital etc.
She started her treatment again in our hospital and frequency
reduced to one or nil per day as tells her husband. Because of
the treatment she stays with her husband and two children with
her parents in Nand Nagari. Her husband works in private fac-
tory earn very merge amount salary and is very difficult to
support her treatment in private clinical setting. Her husband
mentioned that he stay with his in-laws house in order to cares
her and our children.
8) Sumi, 25 years married woman who resides with her par-
ents in Radha Vihar, Saboli extension, Delhi. She had been
married in the Meerut. She had developed the complained of
seizure just after her 3rd child. Prior to this she developed in-
ability to pronounce the words and failed to express herself and
gradually she lost the recognition to all the family members.
Her husband who resides in Meerut left her with three children
in her parents’ house in Delhi where she is living as deserted
woman for five years and taking different treatment. Initially
she took treatment from the molvie and bhagat in Delhi, Meerut
and Gaziabad and no cure for the disease and none of these
healers told her about her disease. They were treating her for
the supernatural causation: her parents’ thinks it is upri hawa,
heavenly punishment, as she had experiences of the disturbed
her speech dysfunction, could not recognized proper words and
failing to recognized the family members. Her parents stay in
Delhi and she had been married for years and had three children
staying with her as her husband left her because of the disease.
She visited LNJP Hospital (formerly Irwin hospital) where she
took treatment for the seizure but did not get the cure. But a
local molvee, a local Muslim healer told her about this disease
and directed them to hospital which is very near to her house.
She visited the hospital with her brother. Sumi had a diagnosed
as General Tonic clonic Seizures (GTCS) and her treatment had
been started for one and half years. Since then the treatment has
been very effective and seizure frequency has reduced much.
Earlier seizures used to be for an hour or more but after the
treatment at least it is reduced for 5 to 10 minute. In marital
family life her husband left her due to seizure and her husband
does not care her and her children. Her parental family mem-
bers are supporting her and her children too. Her brothers are
looking after the treatment part from the hospital. It is told that
her brother took loans and claimed expenditure of Rs 25,000/—
for her treatment till now. Sumi is second among four children,
two brother and two sisters. She had one elder sister who is
married and has normal children, then a brother who is married
and has normal children and then Sumi, a 3rd child of her par-
ents followed by a married brother with normal children. Sumi
has one elder son and two daughters. She is being cared by her
two brothers in most of the time and her father also cares her.
Sumi is taking care of her children during the day but during
nights she develops the seizures in night while in sleep.
Epileptic Married Man and His Mental Agony?
9) KA, 30 years, married and living in the Kastalakasambad,
Railway station, Ghaziabad. He had been blessed six children
but now two children, one boy and a girl, alive and is living
with his wife in the same vicinity where his other five married
brothers are living. KA being the eldest in the family and earlie r
he used to support the family. But after the seizure disorder he
lost his job and failed to support economically his family. Prior
to this he used to work in the grill-gate, Iron Gate welder in the
local shop and used to earn good amount to support his family
and brothers too. But after the diagnosis of this problem, he is
under the treatment from our hospital and his neighbor com-
ments on his behavior as the pagal (mad). His intimate rela-
tionship with his wife has become stressful. His wife presses
him to stay separate from his other brothers. But KA refuses to
his wife as he thinks that during the seizure who will help him?
He stressfully mentioned me that because of the disease I will
remain here together. He expresses his suffering as
mujhe lagta he ke mai mar jaunga, me re family member s
mere dek-bhal nahi karte lekin mai bahar bhi rah sata hu
par mujhe es rog ke karan yaha rahna padta he, kyuki
parivaar ke log mere dek bhal karege yadi mai yaha rahta
hu to”(I feel that I will die because my family members
do not care me. I can stay outside this house but I have to
live here so that they will definitely care me, therefore I
do not leave or separate from my parents)
He further felt that
Ye bimari mujhe buri lagti he na jane kab keya ho jaye?
Mai kya karu? (This disease I do not like much, it not
clear when can and what can happen? What should I do
Says that his old parents support him at the time of seizure
and KA need more care during this time. His wife supports the
old parents in laws in the care of her husband. But other of his
brothers and their wives do not support them in the care. Fur-
ther his younger brothers curse him as he is not contributing
economically. KA took the traditional treatment from the local
healers in different places with his parents. He further also adds
about the places where he had been treated for the seizure. He
went to Meerut with his parents to traditional healer who told
his parents “kuch kara rakha he apke ghar me!” (Some body
has done something to your house). This a nd many other he aler
gave him several tabeej (amulets) to tie on upper arm, but it did
not cured the disease, as felt KA. Then he also went to Gondi
sarai, a village near Hapur in Gaziabad where he is receiving
the treatment while getting the treatment in the tertiary care
hospital. Moreover his parents have already planned a visit to
dargah (Muslim religious shrin)/manjaar in Roorkee and Nau-
rangabad for the treatment. However KA is well aware about
this hospital treatment and admits the benefits-reduced the fre-
quency seizures now to once in two to three months which was
earlier reveres-two or three episodes in one month. Parents still
have faith that religious cure from the manjaar in Roorkee and
Naurangabad, UP will fully cure the seizure of their son.
Family and Kinship Care: Patients with
On gazing the detail of family, sibs and other possible care
givers in the family and kinship system, it seems from these
brief, wherein we have restricted use of the family detail. They
have possible resources are available for care and treatment of
dementia and epilepsy. In case of dementia the clinical symp-
toms appear when a person cross the age of 50 years or above,
in our analysis the average age is 63.5 years (Table 1), here at
this age nobody is around the grand old person as patient, man
or woman, with dementia expect the spouse-husband or wife.
Copyright © 2013 SciRes.
The children by this time get married off and stay away or
separated from their parents. The poor persons with dementia
remain behind and don’t know with whom she or he is living
with. They, as caring affinal kin knows well what he or she is to
us but the person with dementia is now in a different person-
hood in the family.
In our analysis we observed that among patients with demen-
tia remains with their spouse—either husband or wife. Only
unmarried children, daughters or sons remain to support in the
family. Most of the children married, particularly son and their
wife either prefer to stay away from the parental house or even
staying together then they remains functionally away from the
care giving mechanism though structurally together with their
families. Wives and the children are living in the different space
within the same parental house. Such are the sons who are forc-
ed to stay with as they cannot go outside to live. Like in case of
HKD have seven married children, four sons and three daugh-
ters. Daughters are away and outside the kinship care network
as they remain with the in laws. Her sons hardly find time for
the care their mother and whole responsibility remains with
father, who is entirely for her care besides other home chore.
In contrast, KR, another woman from the rural area of Baruat
near Delhi and her husband refused to care her. She also denied
care by her elder married son separated from the parental fam-
ily and starts living separately with his wife and children and do
not care to his mother. Remaining unmarried sons, under the
stress of care, approach the elder married sister in Delhi for
help in her treatment, as dutiful daughter she took all responsi-
bility for her mother treatment. However the unmarried youn-
ger brothers economically support her elder sisters in her treat-
ment. Married daughter and her husband are taking care of KR-
here, it reminds us about a film “complaints of a dutiful daugh-
ter by Deborah Hoffman and the Taylor’s article “on recogni-
tion, caring and Dementia” and the Politics of care, a com-
mentary of Lawrence Cohen on the latter article. In this film a
tag appears “What’s, a daughter to do when her mother ask:
“how exactly are we related?” (c.f. Cohen, 2008).
Similarly, parents, either father or mother left behind uncared
by their sons in their home setting. Their sons are doing the job
in far off cities, as in case BS, father, left behind to mother
alone for care in their village. Their sons working in Delhi and
upon knowing the situation of the father they brought him in
Delhi for his treatment as one (RS) of us was interviewing the
son as well as his father being treated for dementia in the in-
ward patients. It is planned after the discharge of BS would be
sent back to his village in a district of eastern Uttar Pradesh,
India where his wife will look after again. However other lat-
eral kinsmen-brothers of BS and their wives and children will
remain functionally away for the care their elder brother. In
contrast, AD, a woman of 75 years being treated for dementia,
who is cared well not only by her sons but by their wives too
and her grand children also care the grandmother. The care of
elderly person with dementia pose a different stress to the care
givers—usually the spouse either husband or wife—least sup-
ported by the eldest married sons, however younger unmarried
sons always extend their help. The family and kinship caring of
dementia is different in many respect to epilepsy.
Similar observation, as our analysis of patients with dementia
in the families of the northern part of India has revealed, Har-
gave (2006) reported the family and kinship caring ties of
among African-American caregivers to the person with demen-
tia. She emphasized on the features of family and kinship in
African-American caregivers for dementia patients mentioned
that the nature of the relationship between the dependent elder
and his/her caregiver vary across ethnic group. White caregiv-
ers are mostly are the spouses, whereas African-American care-
givers are more likely to be adult children, extended relatives,
or friends (Ibid). Several studies emphasizing the care giving
aspects among the African-American are well reported in car-
ing the people with dementia among black and white people—a
comparison of adaption, adjustment, and service utilization for
the Care of dementia in Black and white caregivers (Hinrichsen
& Ramirez,1992), different issues of race, ethnicity, and culture
in care giving research (Dilworth-Anderson, Williams, & Gib-
son, 2002), dynamics of care giving of demented elder among
black and white families (Lawton et al., 1992), and an analytic-
cal review of racial, ethnic, and cultural differences in dementia
care givers (Connell & Gibson, 1997).
In general, African-American caregivers as compared to
white caregivers are more likely to be younger, unmarried, with
less formal education, and fewer financial resources. Because
of their lower income and higher poverty rates, the financial
stress of care giving may pose a greater emotional burden on
African-American caregivers (Hargrave, 2006). She elaborately
mentioned in detail that African-American caregivers, as com-
pared to white caregivers, are more likely to provide more
hours of care, higher-intensity care, and are more likely to re-
port more unmet needs in terms of support and access to ser-
vices (ibid). Many African-American caregivers are also ac-
tively caring for other people in addition to the frail elderly,
such as minor children, grandchildren, and other family mem-
bers. Even though African-American caregivers are caring for
severely debilitated elders and other family members, they are
less likely than whit e care givers to use formal care services like
nursing homes (Haely et al., 1996).
Numerous studies have reported that African-American fam-
ily care giving of dependent elderly persons is performed
within a collectivistic structure composed of different people
with varying levels of involvement in daily care giving activi-
ties (Dilworth-Anderson, Williams, Cooper, 1995; Burton, Dil-
worth-Anderson et al, 1999). Since kinship ties are a very pow-
erful force in African-American families, many investigators
thought that African-American caregivers receive significant
support from their network of family members. However, more
recent studies suggest that prior research may have overestima-
ted the availability and extent of support that African-American
caregivers receive from other family members (Hinrichsen &
Ramirez, 1992; Cox & Monk, 1996; Fox, Hinton, & Levkoff,
1999). These studies suggest that adult children of dependent
elderly persons may be adversely affected by the other commit-
ments in their own lives, which may severely limit the amount
of assistance they can offer frail African-American elderly. In
the midst of an extended family network, one primary caregiver
emerges who bears the burden of being the sole decision maker,
and has few opportunities for shared responsibility and shared
decision making (Fox, Hinton, & Levkoff, 1999).
Family and Kinship Care: Patients with Epilepsy
Let us see the how do patients with epilepsy—children with
epilepsy, married women and married men deal with disease
and experience living with epilepsy. We already summarize the
coping strategies of these groups elsewhere (Singh et al., 2009a,
2009b) followed by the latter analysis.
Copyright © 2013 SciRes. 61
There is much variability in content analysis of interviews.
Some major themes were evident from the data. Attitudes to
epilepsy were in some cases dominated by a marked non-accep-
tance, where in other cases the diagnosis appeared to be a fairly
well-integrated part of life. In most of the cases patients elabo-
rately described their experiences of the epilepsy. They feel as
the epilepsy is disease of uncertainty and disappointment. After
having a seizure were clearly expressed, one of the patients said
that he always believed the most recent seizure to be the last
and he experienced an enormous disappointment and sadness
after each new seizure. Medical treatment makes these patients
more curious about the medicine- how long these will continue.
There were expressions of a negative self-image and even of
self-destructive tendencies, as we had seen in case of Ush and
two sisters Arth and Svit whose mother expresses a state of
hopelessness from the disease. There are similar expressions in
many other cases. The feeling of insecurity was often present.
Perceptions of the reactions of other people to epilepsy emer-
ged as another problem-stigma. Several interviewees demon-
strated some difficulties dealing with the reactions of other
people: what other people say or think about their disease. Al-
most all declared that they had sometimes met a negative atti-
tude or lack of understanding from other people.
A number of school children with epilepsy had the experi-
ence of being harassed at school because of epilepsy, which
they had a strong negative impact on their lives. When discuss-
ing their employment situation and leisure time activities, the
attitudes of others often emerged as the greatest problem. Some
individuals felt restricted at work because they couldn’t take
part in certain tasks, due to the risks involved or because they
did not have a driving license. There were also a number of
cases who were excluded from employment because of the dis-
ease, in case of KA, a married man lost his job and added as
burden to parental family.
Cognitive problems were reported, as in case of KV we found
this school boy not only suffered from the seizures disorders
but also facing the caste discrimination—peculiar to Indian
subcontinent—in the class from his classmates as well as from
the teachers who forced him to discontinue his studies. Simi-
larly SNZ, a Muslim girl from lower socio economic group also
faced the social discrimination in the class due to disease. School
going children with epilepsy most ly complain concerned to their
memory, but a few experienced speech or attention difficulties.
Feelings of fatigue or of being easily exhausted were also fre-
quently noticed.
Married Women often pose different problems. As we have
seen in case of Yasda who is being accompanied by her hus-
band, who stay in house of his father-in-law for better care her
and as their house is near to hospital. Her husband does some
work in private factory and hardly meet his personal family
expenditure. Similarly case of Svit, an elder sister of Arth who
is married and on the treatment from the hospital and periodi-
cally visit our hospital with her mother often accompany both
sisters. These aspects give a deeper insight about how the prob-
lem is being experienced among the family members of such
Family and kinship care analysis of school children with epi-
lepsy reveals that parents are caring their children, besides ma-
ternal and paternal uncle, as in case of VK and KV. Whereas
school going girls remains under the supervision their mothers
and visit hospital for the treatment with them. They take deci-
sion about treatment of their children, boys or girls, where to go
for the treatment. Parents are around them most of their time
rarely other kinsmen care for long. Married women, Arti and
Svit, remains with their mother, they frequently visit hospital
together rather than with their husband or their affinal kins.
Their husband and his other family members are not involved
in their care or treatment and remain uninformed. Perhaps it is
due to the stigma associated to the disease. In contrast, Yasda,
another married woman being cared by her husband and stay
near to house of in-laws who are staying very near to this hos-
pital in Delhi. Her husband cares his wife and his children. He
presented her along with his father-in-law in OPD. Still another
aspect of the husband as care givers we observe that one hus-
band has left his wife, Sumi and her three children back to the
parents of his wife in Delhi where her younger brothers and
parents care. They manage her treatment and her children too. It
is this aspect which becomes the burden to the parental family
of the women with epilepsy. Patients are living with epilepsy or
they have learned to live with such diseases. Married epileptic
man still looks for parental support bedsides his wife and his
children. These are the uninvited suffering added to one who is
living together just because of being affinal kins or sibs but this
burden of care being carried along in the life. Though they are
no more Patients, but they have transformed as People living
with epilepsy!
In brief the children with epilepsy are in direct supervision of
the parents and occasionally close relatives support. Married
women present differently—presenting their husband as caring,
not caring or even not aware of the diseases of their wife suf-
fering as patient with epilepsy. They remain voiceless or un-
The behavioral and psychological symptoms of dementia and
epilepsy are major causes of stress to family and kinsmen pro-
viding care to patients with epilepsy and dementia. Above in-
terpretation from the family and kinship care analysis, we are
being constraint to think, that does family and kinship caring
still central of such patients? But the caring in the dementia
varies from the epilepsy in family situation. In case of former,
old people suffer only whereas in epilepsy anybody can suffer
at any age or any available kinsmen can care the epileptic per-
son but in case of dementia it is, in most of cases, only the
spouse cares. Since the family and kinship care is still central of
caring such patients. Then training, sensitization or orientation
programme should be designed for family and kinship caregiv-
ers in the management of these diseases, including problem
solving, memory training, and reality orientation. These can re-
duce the level of agitation and anxiety in patients with demen-
tia. The challenge for developing countries like ours is to de-
velop culturally appropriate interventions that can be delivered,
within existing resources, as support to the role as caregivers in
their families.
We feel about a care giving model for the north Indian popu-
lation groups which should be home based care coupled with
regular training about the modalities of caring must be given to
the family and kinshi p members of the patients of dementia and
epilepsy (2). Their care giver should be provided material and
other relevant information about such diseases. In many devel-
oping countries, people with dementia are still thinking it as the
madness and consult the traditional healers and such consulta-
tions are more common in patients with epilepsy as we have
Copyright © 2013 SciRes.
seen in our cases studies. A simple model for the management
of dementia, epilepsy and other neurological disorders must be
based on existing community-based health care resource pro-
viders, trained to provide such services which may reduce bur-
den of caregivers in the family of such diseases.
We are thankful to Dr. Suman S. Khuswaha, Associate Pro-
fessor of Neurology, in whose OPD one of us (RS) worked and
whose useful discussions on the relevance of community based
studies and regular training to the families of care givers. We
also thank Dr. Anthony Aldrein, then senior DNB Candidate,
now Assistant Professor (Neurology), Dr. Sushma Kumari,
Ravi Kishen Jha, Himanshu K Singh, Psychiatric Social work-
ers, for their valuable discussion on various issues of patients
with dementia and epilepsy. We extend our gratitude to Pro-
fessor (Dr.) Meena Gupta, former Director, IHBAS and Pro-
fessor of Neurology, GB Pant hospital, Delhi for her encour-
This is the revised Paper of Dementia and Epilepsy: Family
and Kinship care Analysis which presented in the Panel on
“Medical Pluralism, Sectors of Health Care and Health Seeking
Behavior: Problems and perspective in the Critical Medical
Anthropology”, 16th World Congress of International Union of
Anthropological and Ethnological Sciences (IUAES 2009) held
from 27th to 31st July 2009, Kunming, Yunnan, China.
1) A paper “People living with Epilepsy: Narrative of OPD
patients.” By Ravinder Singh, Kiran Bala, R. K. Jha and Su-
shma Kumari, presented in the Panel on Public Health and An-
thropology, of the 16th World Congress of The International
Union of Anthropological and Ethnological Sciences (IUAES
2009) 27th to 31st July 2009 in Kunming, Yunnan, China has
included these cases studies which one of us (RS) had done
during the home visits.
2) We run an epilepsy clinic in the afternoon for the group
meeting wherein old patients of epilepsy and their care givers
usually meet with the care givers of new cases of epilepsy in
their family. Our psychiatric social work colleagues Ravi K.
Jha, Sushama Kumari and Himanshu Kumar Singh facilitate the
meeting and often one of us (RS) attends such meeting as the
non-participant observer. Here both families exchange their
experiences of caring epilepsy patients in their family situation
for their kinsmen and after sometimes they become friends and
among themselves they find solution of their day to day prob-
lems. We encourage the caregivers to participate in support
groups and to reduce caregiver burden and to learn new effec-
tive coping strategies during these meetings. This is an empow-
ering approach to the people living with epilepsy.
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