“A Descriptive Study To Assess The Knowledge Regarding Alzheimer’s Disease

Among Adults In A Selected Community, Bangalore With A View To Develop An

Information Booklet.”

By
JOJI MATHEW

Dissertation submitted to the

Rajiv Gandhi University of Health Sciences, Bangalore, Karnataka

In partial fulfilment of the requirement for the degree of

Master of Science in Nursing
In
Psychiatric Nursing

Under the guidance of

Prof. T. BHEEMAPPA
Department of Psychiatric Nursing

Sarvodaya College of Nursing

Agrahara Dasarahalli,
Bangalore – 560 079

November 2007

i
 Rajiv Gandhi University of Health Science, Karnataka

DECLARATION BY THE CANDIDATE

I, hereby declare that this dissertation entitled “A Descriptive Study To Assess

The Knowledge Regarding Alzheimer’s Disease Among Adults In A Selected

Community, Bangalore With A View To Develop An Information Booklet” is a

bonafide and genuine research work carried by me under the guidance of Prof.

T. Bheemappa, Department of Psychiatric Nursing, Sarvodaya College of Nursing,

Bangalore.

Date: Signature of the Candidate

Place : Bangalore

(JOJI MATHEW)

ii
 CERTIFICATE BY THE GUIDE

This is to certify that the dissertation entitled “A Descriptive Study To Assess

The Knowledge Regarding Alzheimer’s Disease Among Adults In A Selected

Community, Bangalore With A View To Develop An Information Booklet” is a

bonafide research work done by Mr. JOJI MATHEW, in partial fulfilment of the

requirement for the degree of Master of Science in Psychiatric Nursing.

Date: Signature of the Guide

Place : Bangalore
Prof. T. BHEEMAPPA
Department of Psychiatric Nursing,
Sarvodaya College of Nursing
Bangalore – 560 079

iii
 ENDORSEMENT BY THE HOD, PRINCIPAL / HEAD OF THE

INSTITUTION

This is to certify that, the dissertation entitled “A Descriptive Study To Assess

The Knowledge Regarding Alzheimer’s Disease Among Adults In A Selected

Community, Bangalore With A View To Develop An Information Booklet” is a

bonafide research work done by Mr. JOJI MATHEW, under the guidance of Prof.

T. Bheemappa, Department of Psychiatric Nursing, Sarvodaya College of Nursing,

Bangalore.

Signature & Seal of HOD Signature & Seal of Principal

Prof. T. BHEEMAPPA, M.Sc.(N) Prof. T. BHEEMAPPA, M.Sc.(N)

Date: Date:

Place: Place:

iv
 COPY RIGHT

DECLARATION BY THE CANDIDATE

I, hereby declare that the Rajiv Gandhi University of Health Sciences, Bangalore,

Karnataka, shall have the right to preserve, use and disseminate this dissertation in print

or electronic format for academic / research purpose.

Date: Signature of the Candidate

Place : Bangalore

(JOJI MATHEW)

© Rajiv Gandhi University of Health Sciences, Karnataka

v
 ACKNOWLEDGEMENT

I raise my heart in gratitude to God Almighty who has been my shepherd and

guiding force behind all my efforts. His Omni presence has been my anchor through the

hard times.

The investigator owes a deep sense of gratitude and appreciation to all those who

have contributed to the successful completion of this endeavour.

I am deeply grateful to Mr. V. Narayana Swamy, Chairman, Sarvodaya

Group of Institutions, Bangalore for his encouragement and support and rendering me

an opportunity to do the PG programme in his esteemed institution.

I extended my heartfelt gratitude to Professor T. Bheemappa, Principal and

HOD of Psychiatric Nursing for his keen interest, guidance, valuable suggestion,

constructive criticism, continuous encouragement and co-operation on extended to this

study as a guide.

I extend my thanks to Professor Victorial Selva Kumari, Vice Principal,

Sarvodaya College of Nursing, for her expert guidance and suggestions.

I wish to express my heartfull thanks to Professor Mrs. J. Lovera, Grace Lilly

Rani, HOD of Research Methodology and Child Health Nursing for her constructive

criticism, immense guidance and support rendered during the study.

vi
 My special thanks to Assistant Professor Anitha Kumari, Department of

Psychiatric Nursing for her guidance, valuable suggestion and moral support from the

beginning till the end to complete my dissertation successfully.

I wish to express my sincere thanks to Assistant Professor Hildamony and

Professor Hemalatha Ravi former faculty of Sarvodaya College of Nursing for their

support and guidance at the beginning of the study.

I extend my deepest gratitude to the faculty of NIMHANS especially to Dr.

K. Lalitha, Dr. Nagarajaiah, Dr. Ramachandra and Dr. Reddemma for their whole

hearted help, guidance and suggestions extended towards the study.

I wish to express my gratitude to Dr. K.M. Shivananda, Medical Officer of

Urban Family Welfare Centre, Mahalakshmipuram, Bangalore for granting me

permission to conduct the study.

My special thanks to Mr. Surendra, Associate Professor, Department of Bio-

statistics, G.K.V.K. Bangalore for his guidance in statistical analysis and presentation of

data.

I take this opportunity to thank the entire teaching faculty members of

Sarvodaya college of Nursing for their suitable suggestion, genuine interest and timely

encouragement which helped towards completion of the study.

Its my privilege to convey my sincere thanks to the experts who have validated

the research tool and have guided me with their valuable suggestions and corrections.

vii
 I thank all the participants who had extended their kind co – operation and

participation in this study.

My special thanks to the Librarians of Sarvodaya College of Nursing for

extending library facilities throughout my study.

I extended my gratitude to Mrs. Sudha Murthy for Kannada translation of the

tool and information booklet.

My thanks to Ms. Ciji TA, Lecturer in English BSRNSV Composite PU College,

Vijayanagar, Bangalore for editing this manuscript.

My special thanks to V.S. Communications for their timely help in bringing out

this manuscript in a neat manner.

I am deeply indebted to my father Mr. M.C. Mathew, mother

Mrs. Aleyamma Mathew and my brother Mr. Jubin Thomas Mathew for their

unending love support, co-operation encouragement and prayers, provided to me through

out my study.

I extend my sincere thanks to all my classmates and friends whose souvenir of

prayers, help, support and encouragement have always been a source of encouragement

throughout my study.

Thanks to all.

Date : Signature of the candidate

Place : Bangalore

Joji Mathew

viii
 LIST OF ABBREVATIONS USED

1. AD : Alzheimer’s Disease

2. ADK : Alzheimer’s Disease Knowledge

3. ADRC : Alzheimer’s Disease Research Centre

4. AOC : Alzheimer’s Outreach Centre

5. ICD : International Classification of Disease

6. MMSE : Mini Mental Status Examination

7. PHC : Primary Health Centre

8. WHO : World Health Organization

9. SD : Standard Deviation

10. df : degree of freedom

11. χ2 : Chi square

ix
 TABLE OF CONTENTS

SL.NO. CONTENTS PAGE NO

1. INTRODUCTION 1-14

2. OBJECTIVES 15

3. REVIEW OF LITERATURE 16-30

4. METHODOLOGY 31-41

5. RESULTS 42-58

6. DISCUSSIONS 59-64

7. CONCLUSION 65-67

8. SUMMARY 68-71

9. BIBLIOGRAPHY 72-77

10. ANNEXURE 78-110

x
 LIST OF TABLES

Sl. Page No.

Tables
No.
1. Frequency and percentage distribution of respondents according 53
to their family characteristics

2. Aspect wise mean, knowledge of respondents regarding 55

Alzheimer’s disease

3. Frequency and percentage distribution of respondents according 56

to their knowledge level on Alzheimer’s disease

4. Association between the knowledge level and selected 57-58

demographic variables.

xi
 LIST OF FIGURES

Sl.No. Figures Page No

1. Conceptual frame work 14

2. Schematic representation of research design 33

3. Frequency and distribution of respondents based on Age 44

4. Frequency and distribution of respondents based on Gender 45

5. Frequency and distribution of respondents based on Marital 46

Status

6. Frequency and distribution of respondents based on educational 47

level

7. Frequency and distribution of respondents based on 48

occupational status

8. Frequency and distribution of respondents based on religion 49

9. Frequency and distribution of respondents based on family 50

income per month

10. Frequency and distribution of respondents based on type of 51

family

11. Frequency and distribution of respondents based on family size 52

xii
 ABSTRACT

Statement of the Problem

“A Descriptive study to assess the knowledge regarding Alzheimer’s disease

among adults In a selected community, Bangalore with a view to develop an

information booklet” was undertaken by Mr. Joji Mathew in partial fulfillment of the

requirement for the degree of Master of Science in Nursing, under Rajiv Gandhi

University of Health Sciences, Bangalore, Karnataka.

Background of the problem

Alzheimer’s disease is a major public health challenge in today’s scenario.

Alzheimer’s disease is the fourth leading cause of death in adults. It robs the quality of

not only the elderly, but also the family members who are forced to devote their lives

caring for their impaired loved ones.

Objectives of the study

1. To assess the level of knowledge on Alzheimer’s disease among adults in a

selected community.

2. To find out the association between the level of knowledge and selected

demographic variables.

3. To develop an information booklet on Alzheimer’s disease.

xiii
Assumption

It is assumed that adults possess inadequate knowledge regarding Alzheimer’s

disease.

Method

The research design adopted for the study was descriptive design. A formal

written permission was obtained from the medical officer of the urban family welfare

center, Mahalakshmi Layout, Bangalore. Convenient sampling technique was used to

select 100 adults from Jayachamarajendranagar, Bangalore in the age group between 21

to 50 years as samples for the study.

In view of nature of the problem and to accomplish the objectives of the study a

structured interview schedule was prepared and thirty questions were formulated to

assess the knowledge of adults regarding Alzheimer’s disease. Reliability and validity of

the tool was ensured in consultation with guide and experts in the related field. The data

was collected and analyzed by using descriptive and inferential statistics.

Results

Major findings of the study

Out of 100 adults 16 percent had adequate knowledge 37 percent had moderate

knowledge and 47 percent had inadequate knowledge on Alzheimer’s disease. The

xiv
overall mean value of the adults knowledge regarding Alzheimer’s disease was 53.9

percent, mean were 16.17 and standard deviation of 15.5.

The study revealed that there is a significant association between level of

knowledge and educational status, marital status and family size. Age, gender,

occupation, religion family income, type of family and source of information on

Alzheimer’s disease were not significantly associated with level of knowledge on

Alzheimer’s disease.

In view of the nature of the present study and to accomplish the objectives of the

study an information booklet was prepared on Alzheimer’s disease.

Interpretations and Conclusion

The study revealed with the assumption of the study that the knowledge of adults

regarding Alzheimer’s disease is inadequate.

Key Words

Adults, Knowledge, Information Booklet, Alzheimer’s disease and community.

xv
 1. INTRODUCTION

“You have to begin to lose your memory if only in bits and pieces to realize

that memory is what makes our lives. Life without memory is our coherence, our

reason, our feeling, our action, without it we are nothing.”

- Luis Buneul

Increase in life expectancy during the twenty first century have produced an aged

population of an unprecedented size and longevity. Ageing leads to several biological

changes that takes place over time and results in progressive loss of functional capacity.

The aged have to cope up with many physical and mental health problems with

advancing age requiring constant attention. Depression, Hypertension, Arthritis,

Dementia, Alzheimer’s are highly prevalent among the aged.1

Alzheimer’s disease is known to men since 100 years only, Alzheimer’s day is

celebrated throughout the world on 21st September every year. The theme of world

Alzheimer’s day 2007 is:

“Identify Dementia early for better care. No time to lose”

Alzheimer’s disease is a form of dementia. Dementia is derived from the Latin

word de – “apart, away” and “mens” – mind. Dementia is a progressive brain dysfunction

which result in a restriction of daily activities and in most cases leads in the long term to

the need for care.2

1
 Dementing illness are the most commonest disorders among elderly and thought

to be the fourth leading cause of death among adults in many developed nations

following heart disease, cancer and stroke. Dementia robs the quality of not only the

elderly, but also the family members who are forced to devote their lives caring for their

impaired loved ones.3

Dementia is the most feared and devasting disorder of late life. Current estimates

reveals that there are about 18 million cases of dementia in the world and by 2025, there

will be about 34 million suffering from dementia. The overall prevalence of dementia

ranges from 5 percent to 7 percent. Alzheimer’s disease is the most common dementing

disorder accounting for 80 percent of all cases of dementia.4

Alzheimer’s disease attacks the parts of the brain that control thought, memory

and language. The onset of the disease is gradual and the person’s decline is usually

slow.5

Alzheimer’s disease is named after Dr. Alois Alzheimer’s 1864-1915, who in

1906 on the occasion of 37th meeting of South West Psychiatrists in Tubingen, Dr. Alois

Alzheimer’s described, the case of a 51 years old women Auguste D, who suffered from

strong feeling of jealously towards her husband, increased memory impairment,

disorientation and often aggressive behavior, died after four years of the disease in a state

of severest dementia with his description he gave an account of the disease which is still

valid today.6

2
 Alzheimer’s disease is defined as progressive, irreversible, degenerative

neurological disease that begins insidiously and is characterized by gradual loss of

cognitive function and disturbances in behaviour and affect.7

Alzheimer’s disease affect all groups in the society and is not linked with social

class, gender, ethnic group or geographical location and although Alzheimer’s disease is

more common among elderly persons, younger persons can also be affected.

According to ICD classification the various type of dementia in Alzheimer’s

disease are dementia in Alzheimer’s disease with early onset, dementia in Alzheimer’s

disease with late onset, dementia in Alzheimer’s disease atypical or mixed type, dementia

in Alzheimer’s disease unspecified.8

Clinical signs of Alzheimer’s disease are characterized by progressive cognitive

deterioration together with, declining activities of daily living and by neuro psychiatric

symptoms or behavioural changes.

The pathophysiological hallmarks of the disease are specific neuropathologic and

biochemical changes found in patients with Alzheimer’s disease. These include

neurofibrillary tangles and senile or neuritic plaques. This neuronal damage occurs

primarily in the cerebral cortex and results in decreased brain size. Similar changes are

found to a lesser extent in normal brain tissue of older adults. Cells principally affected

by this disease are the ones that use the neurotransmitter acetylcholine. Biochemically,

the enzyme active in producing acetylcholine is decreased. Acetylcholine is specifically

involved in memory processing.9

3
 The ultimate cause of Alzheimer’s is unknown. In Alzheimer’s disease there are

mainly three stages of disease, they are early stage, middle stage and late stage. In the

early stage the patients have a tendency to become less energetic or spontaneous though

changes in their behaviour often go un-noticed even by the patient’s immediate family.

The early stage of Alzheimer’s disease is often overlooked and incorrectly labelled as

normal old age outcomes.10

As the disease stage progresses to the middle stage, patients might still be able to

perform tasks independently, but may need assistance with more complicated activities.

In the late stage patient will not be able to perform even the simple tasks

independently and will require constant supervision. They may eventually to lose the

ability to swallow food and fluid and this can ultimately lead to death.

There is currently no cure for Alzheimer’s disease. Currently available

medications offer relatively small symptomatic benefit for some patient but do not show

disease progression. It helps a little for the memory. Right now, Alzheimer’s disease is

diagnosed by a battery of mental and other tests and even the diagnosis rests on the

judgment of the physician.11

The sun will continue to show its rays on the world. The waves of the vast ocean

will continue their rush to reach the shore and the wind will continue to blow the leaves

of the tree.

But let us all accept the patient with Alzheimer’s and give them a better

tomorrow.

4
Need for the Study

“For age is opportunity no less

Than youth itself, though in another dress,

And as the evening twilight fades away

The sky is filled by stars, invisible by day

Morituri Salutamus

According to Dr. Harlem “Tomorrow’s elderly people are today’s adult and

yesterday’s children”. Adulthood is a unique phase of human development. Adults are the

important feature of every society and also a great resource of a nation.

Life expectancy has gone up from 20 years at the beginning of the 20th century to

62 years today. India has a large segment of older people in the population. This segment

is growing fast with the rapid increase of the grey population in India.12

Indian aged population is currently the second largest in the world. By 2020, of

the countries with the largest elderly population in the world, five will be in developing

world, China 230 million, India 142 million, Indonesia 29 million, Brazil 27 million,

Pakistan 18 million.

According to the 2006 world population prospects by the United Nations

department of economic and social affairs by 2050, the number of Indians aged above 80

will increase more than 6 times from the current number of 78 lakhs to nearly 5.14 crores.

5
 Alzheimer’s and other forms of dementia are becoming more prevalent among the

elderly. The prevalence of Alzheimer’s disease is projected to quadruple by the year

2047.

Very little is known about the prevalence of dementia outside the more developed

countries. The idea that illness like Alzheimer’s a disease of a rich developed nation is a

myth. Alzheimer’s disease can occur to any adult at any age. Women are three times

more likely to be affected than men.

In Indian context prevalence of Alzheimer’s disease is one in every five elderly

citizens suffers from Alzheimer’s. In Kolkata there are about 46,000 patients with

Alzheimer’s. In Delhi it accounts for about 50,000 Alzheimer’s patient and in Bangalore

there are 30,000 elderly patients suffering from Alzheimer’s disease. Today in India

32,00,000 people are affected by dementia. The figure is expected to double every 20

years.13

An estimated 4.5 million Americans are afflicted with Alzheimer’s disease and

other 20 million family must care for them. There are currently 800,000 people living

with dementia in United Kingdom today, a number expected to double within twenty

years. The number of people with dementia in the Asia Pacific region will rise from about

14 million today to 65 million by 2050.14

Alzheimer’s is a major public health challenge since the median age of the

industrialized world’s population is increasing gradually. In the fight against Alzheimer’s

disease, awareness is key. As baby boomers age, it is expected that the number of people

will triple by the year 2050.

6
 Alzheimer’s disease in the media, to Indian context a Malayalam movie

Thanmathra, 2005 directed by Blessy portrays the effect of Alzheimer’s disease which

affects in the life of an individual and his family.15

Iris is a 2001 film that tells story of Irish novelist Iris Murdoch and her

relationship with John Bayley. The film contrasts the start of their relationship and their

later life when Murdoch was suffering from Alzheimer’s disease.

Many famous personalities of the world have been attacked by Alzheimer’s

disease like former U.S. President Ronald Reagan, Harold Wilson, Iris Murdoch, Eddie

Robinson, Puskas, Rita Hayworth, Eddie Albert and Hazel Haike.15

Alzheimer’s disease patient care is the road ahead is long and hard. Care giving in

such cases is intensive and prolonged. Hence, caregivers play a very crucial role.

Caregivers need to be educated about the nature of the disease and its progression,

they must be counseled to handle negative emotions and feelings. Caregivers must be

encouraged to join support groups.

Caregivers need to be alert to alert to signs and symptoms of stress and burn out.

Often carers neglect themselves teaching them to listen to their own bodies, respond to

their own needs and maintain a regular regime of self care is essential.

Werner P carried out a study on knowledge about symptoms of Alzheimer’s

disease among 150 community dwelling persons aged over 45, who did not have a closed

relative diagnosed with Alzheimer’s disease, participated in the study, result found that

participants knowledge about Alzheimer’s disease found that participants knowledge

7
about Alzheimer’s symptoms overall, was fair, only a slight percentage reported memory

problems to be symptoms of the disease. The study concluded the efforts to increase

knowledge about Alzheimer’s disease symptoms should be expanded with special

attention to risk groups.16

Laforce R Jr. McLean S investigated a study on knowledge and fear of

developing Alzheimer’s disease in a sample of healthy adults. Survey method was used.

127 young adult and 118 older adults participated. Younger adults obtained a score of 54

percent, while older adults obtained 58 percent on knowledge test. Knowledge and fear

scores were not significantly correlated with having a family member or knowing

someone with Alzheimer’s disease.17

Ayalon L. Arean PA carried out a study on knowledge Alzheimer’s disease in

four ethnic groups of older adults. Participants were ninety six Anglo, 37 Latino, 30

Asian and 30 African American older adults completed a short survey about Alzheimer’s

disease. The result suggest that certain minority groups do not have sufficient information

about Alzheimer’s disease, and this may explain the lack of Alzheimer’s disease service

use by minorities.18

The investigator during his clinical posting and his interactions with the adults in

the community has observed that adults have the lacunae in their knowledge bank on

Alzheimer’s disease. The investigator also observed various myths and misconceptions

about Alzheimer’s disease. There were no studies conducted in Bangalore to assess the

adult’s knowledge regarding Alzheimer’s disease.

8
 Nurses are a vital sources in educating the public on various health related issues.

Hence the investigator is interested to assess the knowledge of adults regarding

Alzheimer’s disease. Furthermore, the study of this kind will serve as guidelines for

future nurses to provide comprehensive care for Alzheimer’s disease and remember those

who cannot remember.

Keeping above facts in view the researcher is keen to assess the knowledge of

adults regarding Alzheimer’s disease so that the knowledge gaps can be filled up by

educating the public and increasing the awareness about Alzheimer’s and to accept an

individual who is suffering from Alzheimer’s as an important member of the society.

9
Statement of the problem

“A Descriptive Study To Assess The Knowledge Regarding Alzheimer’s

Disease Among Adults In A Selected Community, Bangalore With A View To

Develop An Information Booklet.”

Objectives

1. To assess the level of knowledge on Alzheimer’s disease among adults in a

selected community.

2. To find out the association between the level of knowledge and selected

demographic variables.

3. To develop an information booklet on Alzheimer’s disease.

Operational Definitions

1. Knowledge : Refers to the awareness of community regarding

Alzheimer’s disease as assessed by the response to items of the

knowledge questionnaire.

2. Adults : Refers to men and women between 21 to 50 years group in a

selected community.

3. Information booklet: refers to an organized material which contain

all the aspects of Alzheimer’s disease.

10