EXPERIENCE OF CAREGIVING AND

COPING IN CAREGIVERS OF
PATIENTS WITH MAJOR
NEUROCOGNITIVE DISORDER DUE
TO ALZHEIMER’S DISEASE

Proforma
Submitted to BY
King George’s DR SANKALP DIXIT
Medical
University,
Lucknow
for the degree
of M.D.

(PSYCHIATRY)

DEPARTMENT OF PSYCHIATRY,
KING GEORGE’S MEDICAL UNIVERSITY,
April
LUCKNOW-226003 (U.P.) INDIA
2019
To,

The Dean, Faculty of Medicine,

King George’s Medical University, U.P.
Lucknow.

Through Proper Channel

Subject: Submission of thesis proforma for M.D. (Psychiatry)

Respected Madam,

I have been selected as a candidate for M.D.(Psychiatry) examination of King George’s Medical University, U.P.
to be held in the year 2021. I humbly request you to kindly register my subject of thesis entitled,
‘EXPERIENCE OF CAREGIVING AND COPING IN CAREGIVERS OF PATIENTS WITH MAJOR
NEUROCOGNITIVE DISORDER DUE TO ALZHEIMER’S DISEASE’.

The necessary particulars and proforma are being submitted here for further necessary action.

Thanking You,

Yours sincerely,

(SANKALP DIXIT)
Junior Resident II,
Department of Psychiatry,
King George’s Medical University,
Lucknow
Date:

Forwarded and Recommended by:

DR. P. K. DALAL, MD.

Professor & Head,
Department of Psychiatry,
King George’s Medical University, Lucknow.
 PROFORMA

Name : SANKALP DIXIT

Year and Month of Graduation : MARCH 2016

University From Which Graduated : UTTARAKHAND TECHNICAL UNIVERSITY

Course to which admitted : M.D.(PSYCHIATRY)

Date of admission : May 02, 2016

Present Status : Junior Resident 1ST year

Department In which subject of thesis : Department of Psychiatry,

falls King George’s Medical University,
Lucknow

Title of thesis : EXPERIENCE OF CAREGIVING AND COPING IN

CAREGIVERS OF PATIENTS WITH MAJOR
NEUROCOGNITIVE DISORDER DUE TO ALZHEIMER’S
DISEASE

Brief resume of the work : Attached Herewith

proposed to be undertaken for
thesis

Chief Supervisor : PROF. ANIL NISCHAL, MD

Professor
Department of Psychiatry,
King George’s Medical University,
Lucknow.
 Co-supervisors :

DR. BANDNA GUPTA, MD DR. SHRIKANT SRIVASTAVA, MD

Associate Professor Associate Professor and Head
Department of Psychiatry, Department of Geriatric Mental Health
King George’s Medical University, King George’s Medical University,
Lucknow. Lucknow.

DR. MANU AGARWAL, MD DR. PRAVEEN KUMAR SHARMA, MD

Associate Professor Associate Professor
Department of Psychiatry, Department of Geriatric Mental Health
King George’s Medical University, King George’s Medical University,
Lucknow. Lucknow.
 Recommendation of

Chief Supervisor:

PROF. ANIL NISCHAL, MD

Professor
Department of Psychiatry,
King George’s Medical University,
Lucknow.
 Recommendation of

Co- Supervisors:

DR. BANDNA GUPTA, MD DR. SHRIKANT SRIVASTAVA, MD

Associate Professor Associate Professor
Department of Psychiatry, Department of Geriatric Mental Health
King George’s Medical University, King George’s Medical University,
Lucknow. Lucknow.

DR. MANU AGARWAL, MD DR. PRAVEEN KUMAR SHARMA, MD

Associate Professor Associate Professor
Department of Psychiatry, Department of Neurology
King George’s Medical University, King George’s Medical University,
Lucknow. Lucknow.
INTRODUCTION:

Dementia is a syndrome – usually of a chronic or progressive nature – in which there is

deterioration in cognitive function (i.e. the ability to process thought) beyond what might be
expected from normal ageing. It affects memory, thinking, orientation, comprehension,
calculation, learning capacity, language, and judgement. Consciousness is not affected. (WHO
2017). Dementia is expected to become a serious health and social burden in the older adult
population given its naturally progressive and irreversible course (Hongmei yu et al., 2015). The
most common type of dementia, accounting for 60–80% of all cases, is that resulting from
Alzheimer’s disease (AD). Alzheimer's disease is a primary degenerative cerebral disease of
unknown etiology, with characteristic neuropathological and neurochemical features. It is
usually insidious in onset and develops slowly but steadily over a period of years. The onset can
be in middle adult life or even earlier (Alzheimer's disease with early onset), but the incidence is
higher in later life (Alzheimer's disease with late onset). In cases with onset before the age of 65-
70, there is the likelihood of a family history of a similar dementia, a more rapid course, and
prominence of features of temporal and parietal lobe damage, including dysphasia or dyspraxia.
In cases with a later onset, the course tends to be slower and to be characterized by more general
impairment of higher cortical functions. There are characteristic changes in the brain: a marked
reduction in the population of neurons, particularly in the hippocampus, substantia innominata,
locus ceruleus, and temporoparietal and frontal cortex. Appearance of neurofibrillary tangles
made of paired helical filaments; neuritic plaques, which consist largely of amyloid and show a
definite progression in their development and granulovacuolar bodies.
REVIEW OF LITERATURE:

Hyun Jung Kim et al , 2019 Caregiving Experience of Dementia among Korean American Family Caregivers,
Adult KA caregivers of PWD (n = 18) were recruited for semi-structured interviews . Thematic analysis yielded
four themes: challenges in finding resources, struggling with mental health issues, traveling the path of
acceptance, and finding ways to survive Importantly, some KA caregivers expressed suicidal thoughts and
depression.

Abeedah Hendricks-Lalla et al, 2018, South Africa explored the lived experiences of male familial caregivers of
persons with Alzheimer’s disease. Face-to-face, interviews with a semi-structured interview schedule. Open-
ended questions were used to explore the male caregivers’ experiences of caring for their relatives with
Alzheimer’s disease by focusing on challenges and resources for coping. Twenty male caregivers were identified
as potential participants were recruited for the study. It was found that males have a propensity to approach
caregiving to relatives with Alzheimer’s disease differently to females through limited utilization of support
groups, inactive support-seeking while preferring informal support from their female relatives and friends. They
also feel less prepared for caregiving. Despite these differences, male caregivers are capable of providing
effective care, and to successfully manage and find meaning in their caregiving role.

Hongmei Yu et al, 2015, , Shanxi Medical University, Taiyuan, China did a study to assess the direct and
indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with
mild Alzheimer’s disease (AD). Tools used were Caregivers Burden Inventory, Montreal Cognitive Assessment
and Activities of Daily Living Scale. It was a cross-sectional study of patients diagnosed with AD from two
hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild
AD and their caregivers were selected Level of cognitive function and hours of caregiving were directly related
to caregiver's burden. Social support, family function and caregiving experience could mediate the relationship
between patient factors and caregiver burden.
RATIONALE OF STUDY:

Although some studies have been conducted on burden of caregivers of patients with dementia, only a few
studies have been conducted which observe the caregiver experience and coping mechanisms employed by the
caregiver. The concept of burden has evolved and has been included under the broad term Experience of
Caregiving. In a literature search, none of the studies used a structured tool to study the experience of caregiving
among caregivers of patients with dementia. Patients with dementia require care and assistance from their
caregiver. Knowing the experiences of caregivers and the factors affecting them could enhance the attention
given to caregivers and also design new support strategies for providing better help to caregivers. The eventual
goal would be to find a balance between shifting responsibilities to family members on one hand and providing
support to caregivers and to improve the outcomes in both the caregiver and the patient. Better caregiving will
ultimately lead to better and more favourable outcome in the patient

AIMS AND OBJECTIVE

 To study the Experience of Caregiving and Coping Strategies in caregivers of patients

with Major Neurocognitive Disorder Due to Alzheimer’s Disease

 To study association between Experience of Caregiving and Coping Strategies in these

patients, if any

MATERIALS AND METHODS

SAMPLE

 The sample will be drawn from patient population attending the Adult Psychiatry OPD, Geriatric
Psychiatry OPD and Neurology OPD, KGMU, Lucknow on specified days of the week

 Patients satisfying the diagnostic criteria of Diagnostic and Statistical Manual Fifth Edition (DSM 5) for
Major Neurocognitive Disorder Due to Alzheimer’s Disease will be recruited for the study

Sample size
Sample size is calculated on the basis of variation in time spent on caregiving and mean time
spent using the formula:
n = (Zα + Zβ)2 σ2/d2
Where = 4.5 , the SD of time spent

d = 15% of mean time (13.4)

type I error α = 5%

type II error β = 20% for detecting results with 80% power of study

So the required sample size

n’ = 52
INCLUSION CRITERIA FOR PATIENTS:

 Diagnosis of Major Neurocognitive Disorder Due to Alzheimer’s Disease as per DSM 5

 Montreal Cognitive Assessment scale score < 26

 Having a ‘caregiver’ as defined for the study

 Duration of illness one year or more

 Written informed consent from the patient and/or caregiver

EXCLUSION CRITERIA FOR PATIENTS:

 Presence of any medical illness requiring priority management and/or causing functional impairment

 Any co-morbid psychiatric disorder (other than nicotine use disorder)

INCLUSION CRITERIA FOR CAREGIVERS:

 Age more than or equal to 18 years

 Fulfilling the operational definition of ‘caregiver’

 Caring for the patient for at least last one year

 Willing to give written informed consent for the study

EXCLUSION CRITERIA FOR CAREGIVERS:

 Any psychiatric illness (other than nicotine use disorder)

 Any significant medical disorder or disability which might interfere with caregiving

 Another family member suffering from a chronic physical or psychiatric illness dwelling in the same
household

ASSESSMENT TOOLS FOR THE PATIENTS:

 Diagnostic and Statistical Manual Fifth Edition (DSM 5)

 Mini International Neuropsychiatric Interview(MINI) 7.0.2, Sheehan et al
 Semi Structured proforma for patients
 Montreal Cognitive Assessment, Nasreddine et al., 2005
 Dementia Severity Rating Scale (DSRS), Clark et al, 1996
 Behavioural Pathology in Alzheimer’s Disease rating scale (BEHAVE-AD)

ASSESSMENT TOOLS FOR THE CAREGIVERS:

 Mini International Neuropsychiatric Interview(MINI) 7.0.2, Sheehan et al

 Semi Structured proforma for caregivers
 Experience of Caregiving Inventory, Szmukler et al 1996
 COPE Inventory, Carver et al, 1989

PROCEDURE:

Patients attending Adult Psychiatry, Geriatric Psychiatry and Neurology O.P.D, K.G.M.U. on
specified days fulfilling the diagnosis of Major Neurocognitive Disorder Due to Alzheimer’s
Disease as per DSM 5 will be included in the study after applying selection criteria. Written
informed consent will be taken from the patients and/or caregivers who satisfy selection criteria.
Patients will be assessed on Montreal Cognitive Assessment Scale. M.I.N.I will be applied on
the patients to rule out any other psychiatric illness. M.I.N.I will be applied on the caregivers as
well to rule out any psychiatric illness. Patients and caregivers will be assessed on same day or
appointment for assessment will be given on a mutually convenient later date. If a later date is
given, the patient and caregiver will be reassessed on the selection criteria before applying
scales. Information will be recorded on a semi structured proforma for patients and caregivers.
Dementia Severity Rating Scale (DSRS) and Behavioral Pathology in Alzheimer’s Disease
rating scale (BEHAVE-AD) will be applied on the patient. The ECI and COPE inventory will be
applied on the caregivers. Data obtained will be analyzed statistically The ECI and COPE
inventory will be applied on the caregivers. Data obtained will be analyzed statistically.

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World Health Organization. (2011). Global health & aging. Retrieved from www.who.int/ageing/pub
lications/global_health.pdf
 INFORMED CONSENT FORM

TITLE OF PROJECT: EXPERIENCE OF CAREGIVING AND COPING IN

CAREGIVERS OF PATIENTS WITH MAJOR NEUROCOGNITIVE DISORDER
DUE TO ALZHEIMER’S DISEASE

Investigators (Name and Affiliation):

Dr. Sankalp Dixit

Junior Resident 1st year

King George’s Medical University

Lucknow

Ph no. 08057325230

Email: sankalpdixitdixitsankalp@gmail.com

Supervisor: DR. ANIL NISCHAL, MD

Professor
Department of Psychiatry
King George’s Medical University,
Lucknow

Co-supervisor: DR. BANDNA GUPTA, MD

Associate Professor
Department of Psychiatry
King George’s Medical University,
Lucknow
 DR. MANU AGARWAL, MD

Associate Professor
Department of Psychiatry
King George’s Medical University,
Lucknow

DR.SHRIKANT SRIVASTAVA .

Associate Professor and Head

Department of Geriatric Mental Health

King George’s Medical University,

Lucknow.

DR. PRAVEEN KUMAR SHARMA,MD

Associate Professor

Department of Neurology

King George’s Medical University

Lucknow.

Potential funding agency: NIL

Collaborator : None

Purpose of the study: EXPERIENCE OF CAREGIVING AND COPING IN

CAREGIVERS OF PATIENTS WITH MAJOR NEUROCOGNITIVE DISORDER
DUE TO ALZHEIMER’S DISEASE
Study procedure:

Patients attending Adult Psychiatry, Geriatric Psychiatry and Neurology O.P.D,

K.G.M.U. on specified days fulfilling the diagnosis of Major Neurocognitive Disorder
Due to Alzheimer’s Disease as per DSM 5 will be included in the study after applying
selection criteria. Written informed consent will be taken from the patients and/or
caregivers who satisfy selection criteria. Patients will be assessed on Montreal
Cognitive Assessment Scale. M.I.N.I will be applied on the patients to rule out any
other psychiatric illness. M.I.N.I will be applied on the caregivers as well to rule out
any psychiatric illness. Patients and caregivers will be assessed on same day or
appointment for assessment will be given on a mutually convenient later date. If a later
date is given, the patient and caregiver will be reassessed on the selection criteria
before applying scales. Information will be recorded on a semi structured proforma for
patients and caregivers. Dementia Severity Rating Scale (DSRS) and Behavioural
Pathology in Alzheimer’s Disease rating scale (BEHAVE-AD) will be applied on the
patient. The ECI and COPE inventory will be applied on the caregivers. Data obtained
will be analyzed statistically

 Risk and complications from the study:

As this study only involves clinical interview it carries no risks. No invasive
interventions will be performed or medication will be given so there is no possibility
of any risk and complications from the study.

Benefit from the study

During the procedure of study, the patient would be assessed thoroughly and precisely.
This study will facilitate more knowledge about the symptom dimensions with
experience of caregiving and coping mechanisms employed by the caregivers in such
patients. Knowledge attained from this study will be advantageous for other patients
and their caregivers who will suffer from these problems.

Compensation:
As in this study there is no possibility of any risk or complication, so there is no
provision of any compensation in the study.

Confidentiality:
All the information and clinical documents of the subjects of the study will be kept
confidential and will be shown only to the investigator, supervisor and co-supervisor of
the study. The result of the study will be used for clinical and academic purposes and
name of the subject will not be mentioned.

Rights of the participants:

Your participation in study is self-willed. You can dissent to participate in the study at
any time without giving any reason, and this will not cause any effect on the quality of
treatment provided to you in any circumstances.

Alternatives to participation in study:

In case of non-acceptance to participate in the study you can take treatment and can
continue the treatment routinely from the department. This will not cause any effect on
the quality of treatment provided to you.

PART 2
CONSENT OF THE PATIENT
I have had the study explained to me and have read the contents of this form/ had the
contents of this form read to me. I have been given the opportunity to ask questions, if
any and they have been answered to my satisfaction. I am willing to be enrolled in the
study.

Name of patient:
Signature/left thumb impression of parents:
Date:

Investigator’s statement -
I, the undersigned have explained to the patient/participant in a language she/he
understands the procedure to be followed in the study and its risks and benefits.

Signature of the investigator: Date:

Name of the investigator:

Signature of the witness: Date:

Name of the witness:
 सूचित सहभागी सहमचत पत्र

रोगी पहिान क्रंमाक....... चिनां क....../..../2019

पररयोजना का शीर्षक- अल्झाइमर डे मेन्शिया के मरीज़ ों में मरीज ों की दे खभाल करने वाल ों के
अनुभव एवों समाय जक प्रक्रिया का अध्ययन करना

अन्वे र्क- डॉ सों कल्प दीक्रित, जूनियर रे जीडे ण्ट-1, मािन िं क निनकत्सा निभाग, नकिंग जाजज
निनकत्सा निश्वनिद्यालय, लखिऊ। Mob no - 8057325230. Email :
sankalpdixitdixitsankalp@gmail.com

मु ख्य अन्वे र्क- डा. अनिल निष्िल , प्रोफे र, मािन क निनकत्सा निभाग, नकिंग जाजज निनकत्सा
निश्वनिद्यालय, लखिऊ।

को-सुपरवाइजर- डॉ बिंदिा गु प्ता, ए ोन एट प्रोफे र, मािन क निनकत्सा निभाग, नकिंग जाजज

निनकत्सा निश्वनिद्यालय, लखिऊ।

डॉ मनु अग्रवाल, , ए ोन एट प्रोफे र, मािन क निनकत्सा निभाग, नकिंग जाजज निनकत्सा

निश्वनिद्यालय, लखिऊ।

डॉ श्रीकाों त श्रीवास्तव, ए ोन एट प्रोफे र, वृ द्धावस्था मािन क निनकत्सा निभाग,नकिंग जाजज

निनकत्सा निश्वनिद्यालय, लखिऊ।

डा. प्रवीण कुमार िमाा , ए ोन एट प्रोफे र, न्यूर लॉजी क्रवभाग, नकिंग जाजज निनकत्सा
निश्वनिद्यालय, लखिऊ।

अध्ययन का उद्दे श्य- अल्झाइमर डे मेन्शिया के मरीज़ ों में मरीज ों की दे खभाल और दे खभाल
करने वाल ों का अनुभव का अध्ययन करना

अध्ययन की चवचि- क्रनक्रदाष्ट ओपीडी क्रदन ों पर वयस्क मन क्रिक्रकत्सा ओपीडी, मन क्रिक्रकत्सा

क्रवभाग, वृ द्धावस्था मानक्रसक ओपीडी और न्यू र लॉजी ओपीडी, केजीएमयू में भाग लेने वाले
जुनूनी बाध्यकारी क्रवकार के सभी लिण र क्रगय ों का अध्ययन के क्रलए मानदों ड ों पर मू ल्ाों कन
क्रकया जाएगा, ियन मानदों ड ों क पू रा करने वाले र क्रगय ों एवों उनके दे खभाल करने वाले क
अध्ययन में िाक्रमल क्रकया जाएगा। िुरू में अन्वेषक द्वारा एम0आई0एन0आई0-
6 पर अन्य मन क्रवकारक क्रवकार कामू ल्ाों कन और सह र ग ों का मू ल्ाों कन डीएसएम
-5 के अनुसार क्रकया जाएगा ।
ियन के मापदण्ड क पू रा करने वाले र क्रगय ों एवों उनके दे खभाल करने वाले क
अध्ययन में भती क्रकया जाये गा।
अध्ययन की क्रलन्खत सू िना सहमक्रत र क्रगय ों एवों उनके दे खभाल करने िालोिं े से ली
जाये गी। अद्धा सोंरिीत प्र फामाा पर र गी की जनसाों न्िकीय, नैदाक्रनक, मन वै ज्ञाक्रनक
और सामाक्रजक िर की जानकारी ली जाएगी। उपयु क्त मापदों ड ों पर र ग ों क
परखा जाएगा। दे खभाल करिे वाल ों क ई. ी .आई. इन्वें टरी और कोप. इन्वेंटरी पर
परखा जाएगा ,डे टा एकत्र कम्यू टर साफ्टवे यर का उपय ग कर सारणीबद्ध क्रकया
जाये गा और साों न्िकीय एस0पी0एस0एस0 का उपय ग कर मू ल्ाों कन क्रकया जाये गा।

जचिलता- कोई िही िं

अध्ययन से लाभ- इ अध्ययि े प्राप्त ज्ञाि अन्य रोनगयोिं के नलए फायदे मिंद होगा जो इि
मस्याओिं े पीऩित होिंगे

अध्ययन से रोगी को संभाचवत हानी- इ अध्ययि े केिल िैदानिक ाक्षात्कार नकया

जाये गा, तो िहािं नक ी भी जोखखम और अध्ययि े जनटलताओिं की कोई िं भाििा िही िं है ।

गोपनीयता - अध्ययि े िं बिंधी मस्त जािकारी पू र्ज रूप े गोपिीय रहे गी जब तक की

कािूिी प्रनिया हे तु इ की आिश्यकता ि हो। यनद इ अध्ययि का पररर्ाम प्रकानित नकया
जाता है तब भी रोगी का िाम पू र्जतया गुप्त ही रहे गा।

मु आवजा- इ अध्ययि में भाग लेिे पर कोई हजाज िा िही िं नदया जाएगा।

प्रचतभागी के अचिकार-

इ अध्ययि में आप कोई भी प्रश्न पू छ कते है । इ अध्ययि की प्रनतभानगता के नलए तथा आप

नक ी भी मय प्रनतभानगता रोकिे का निर्ज य कर कते है । अगर आप अध्ययि में भाग िही िं
लेिे का निर्ज य करते है तब भी आपके इलाज और दे ख रे ख में इ अस्पताल में कोई कमी िही िं
आएगी ।

उत्तरिाता की सहमचत

मैं िे इ पत्रक की जािकाररयोिं को पू री तरह पढ़ा और मझा है तथा मु झे इ निया के बारे में
निस्तार े बता नदया गया है । मु झे इ निया े म्बखित प्रश्न पू छिे का अि र प्राप्त हुआ तथा
मु झे उिका सों त षजनक उत्तर नमल गया है ।
मैं स्वयिं को इ निया में प्रनतभागी बिािे के नलए इच्छु क हूँ ।

मरीज के हस्ताक्षर

मरीज का नाम

चिनााँ क

शोिकताां का कथन

मैं , अधोहस्ताक्षरीिे अध्ययि की प्रनिया, इ े होिे िाले फायदे और हानि के खतरोिं के बारे में
मरीज को उिकी भाषा में , जो िो मझ कते हैं , निस्तार े बता नदया है ।

शोिकताां के हस्ताक्षर चिनााँ क

शोिकताां का नाम

गवाह के हस्ताक्षर चिनााँ क

गवाह का नाम