Rajiv Gandhi University of Health Sciences s187

RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES BENGALURU, KARNATAKA. PROFORMA FOR REGISTRATION OF SUBJECTS FOR DISSERTATION.

NAME OF THE MRS. FREEDA.A 1 CANDIDATE I YEAR M.Sc NURSING AND ADDRESS SRI,VENKATESHWARA INSTITUTE OF NURSING SCIENCE BOMMANAHALLI BENGALURU- 5760 068.

NAME OF THE SRI. VENKATESHWARA 2 INSTITUTION INSTITUTE OF NURSING SCIENCE BOMMANAHALLI BENGALURU- 5760 068.

COURSE OF MASTER OF SCIENCE IN 3. STUDY AND NURSING SUBJECT MENTAL HEALTH – PSYCHIATRIC NURSING

DATE OF 14-06-2010 4. ADMISSION OF THE COURSE

TITLE OF THE A STUDY TO EXPLORE THE 5. TOPIC DISTURBANCES IN FAMILY DYNAMICS AND COPING STRATEGIES USED AMONG FAMILY MEMBERS OF PATIENTS SUFFERING FROM DEMENTIA IN SELECTED DEMENTIA CENTRES IN BENGALURU 6. BRIEF RESUME OF THE INTENDED WORK. For families dealing with the memory loss of a loved one, sometimes the best thing to do is live in the moment.- CARY. N.C

INTRODUCTION

Ability to think and reason and to behave accordingly is a distinguished behaviour of Human being. This ability created civilization and allowed the progression.

If person loses the ability of reasoning, memory judgment, orientation, perception , and attention It leaves them in the state of confusion, and they become invalid and dependent.

Cognitive mental disorders or Amnestic disorders are characterized by a disruption of or deficit in cognitive functions. This disrupts orientation, attention, memory, vocabulary, calculation ability, and abstract thinking

In a healthy brain, mass and speed may decline in adulthood, but this miraculous machine continues to form vital connections throughout life.

However, when connections are lost through inflammation, disease, or injury, neurons eventually die and dementia may result. The prospect of literally losing one's self can be traumatic, but early intervention can dramatically alter the outcome. Understanding causes is the first step. In the past twenty years, scientists have greatly demystified the origins of dementia. Genetics may increase your risks, but scientists believe a combination of hereditary, environmental, and lifestyle factors are most likely at work.1

Dementia is a neurodegenerative condition of the brain in which there is a progressive and permanent loss of cognitive and mental performance. This includes loss of memory and impairment of brain function in such areas as language, intellect, judgement, and behaviour. Dementia is common in the elderly and is a very common cause of disability, institutionalization, and death in this population.

ICD- 10 defines dementia as a syndrome due to disease of the brain usually of chronic or progressive in nature . In which, there is disturbances of multiple higher cortical functions including memory, thinking, orientation, comprehension, calculating, learning, capacity, language and judgment, and consciousness in not clouded. Occasionally deterioration in emotional control social behaviour or motivation also seen.2

On the other hand Watching a loved one progress through dementia is tough.

Nothing will break your heart quicker than realizing your mother or father no longer recognizes you. It is simply brutal. If you have a family member with dementia in any form, you need to make sure you take care of yourself as well as them.3 6.1 NEED FOR THE STUDY:

Increasing life spans of populations worldwide has been accompanied by an increasing prevalence of age related diseases such as dementia. Around 25 million people worldwide have dementia, And the number of people with dementia is predicted to exceed 80 million by 2040.

With the aging population, the prevalence of dementia is rising. The prevalence of moderate to severe dementia in different population groups is approximately

5 percent in the general population older than 65 years of age, 20 to 40 percent in the general population older than 85 years of age, 15 to 20 percent in outpatient general medical practices, and 50 percent in chronic care facilities.

By 2050, current predictions suggest that there will be 14 million Americans with Alzheimer's disease and, therefore, more than 18 million people with dementia., And nearly 1.5 million people living with dementia in India today. These numbers are expected to increase dramatically in the years ahead due to the demographic transition.4

Dementia drastically affects daily life and everyday personal activities, is often associated with behavioural symptoms, personality change, and numerous clinical complications, it increases the risk for urinary incontinence, hip fracture, and— most markedly—dependence on nursing care. Thus, it is not surprising that the costs of care for patients with dementia are immense Although intuitively it might be expected that family plays a significant role in the adjustment of persons with dementia to life in a care facility, relatively little research has addressed this issue. A qualitative study was done by using a participation- observation methodology to determine the role and function of family members visiting in long -term care settings. They found that some family members want need to be involved in caring for their relative in long- term care. When they do participate in caring, the assumption may be that residents are more satisfied. Certainly, it has been suggested that feeling unsafe and insecure is a common feature of the dementing process and that the presence of family may help persons with dementia to feel more satisfaction and less frustration. Studies shows that very little research has been done to address the issues regarding disturbances in Family dynamics and coping strategies of the family . In relation to dementia. hence the researcher felt the need to assess the disturbances in family dynamics and the coping strategies used among family members of patient suffering from dementia5

6.2 REVIEW OF LITREATURE:

The review of literature has been classified under the following headings.

6.2.1 Studies related to coping strategies used by the family members.

6.2.2 Study related to disturbances in family functioning 6.2.1 Studies related to coping strategies used by the family members

A cross-sectional study was done regarding coping strategies of caregivers of patient with dementia , stress and coping paradigm to examine the factors associated with negative and positive adjustment outcomes among Asian family caregivers of persons with dementia (PWD) in Singapore. One hundred seven family caregivers completed measures assessing patient illness characteristics , general coping styles of caregivers, specific dementia management strategies, religion and spirituality, and caregiver adjustment outcomes of burden and gain.

Multiple regressions revealed that behavioral problems in the PWD, dementia severity, and the use of behavioral disengagement and criticism as coping strategies were significant predictors of burden accounting for 48% of the explained variance [F(4,99)=23.12, P<0.001]. The only significant predictor of gain was the use of encouragement as a specific dementia management strategy, explaining 18% of variance [F(3,102)=7.39, P<0.001]. Religion and spirituality predicted gain indirectly through the use of encouragement. Coping strategies had an independent effect on caregiver outcomes above and beyond

PWD illness characteristics and caregiver characteristics. Hence, caregiver interventions should target coping strategies to improve outcomes of care giving for dementia. Findings also support the need to examine religion and spirituality in future studies of caregiver adjustment outcomes and to explore the factors not measured in this study 6

A study was done regarding Alzhemier’s stress and coping with the care giving role ,in this study Examined the coping patterns, management stimulation strategies, and support factors associated with well-being in 58 families experiencing the stress of Alzheimer's disease. These variables and their interrelationships were analyzed for differences within three caregiver groups

(i.e., male spouses, female spouses, offspring). Variations were found in the coping, management, and support correlates of well-being for the three caregiver groups. Also the groups differed in the type of behaviors they found stressful, with dependent and disruptive behaviors being more problematic.7

A study was done regarding "caregiver burden" The objective of this study was to determine the degree of burden in informal caregivers of dementia patients in a Turkish population and to evaluate the possible risk factors associated with higher burden. Fifty two dementia patients and their caregivers were analyzed. The affects of different factors including the patients and caregivers age, gender, years of education, relationship between the patient and caregiver as well as the patients symptom duration, duration of care giving and degree of cognitive impairment and independence of the patient were investigated. Overall 90 % of the caregivers had some degree of burden. There was no significant difference for most of the analyzed factors but the mean

ZCBS score was higher in the spouse or adult child, compared to other relatives as the caregiver. The closer the caregiver is to the patient, the care giving emotionally gets harder and the burden is high. The only significant correlation was found for patients age, which was negatively correlated with the degree of burden. This finding might reflect the easy acceptance of dementia for the elderly in the Turkish population , which is related to the fact that there are very few institutions and the aged family members (demented or not) are commonly a part of normal living in many households. As a conclusion low patient age and close relationship between the caregiver and the patient seems to be risk factors correlated with a high degree of caregiver burden8

A study was done regarding Dementia Management Strategies and Adjustment of Family Members of Older Patients this shows Family members caring for dementia patients must often contend with a complex set of behavioral problems evidenced by their demented older relatives. In this study examined how strategies to manage dementia problems in (N = 152) older people were associated with the adjustment of family members while providing assistance to the patient. Three Dementia Management Strategies were identified (Criticism,

Encouragement, and Active Management) and were found to be associated with three indices of family members' emotional adjustment — burden, psychiatric symptoms, and desire to institutionalize the patient. After controlling for the influence of family member and patient background characteristics and family member coping, Dementia Management Strategies accounted for significant and unique variance in family members' burden and desire to institutionalize the patient but not in family members' psychiatric symptoms. The use of Active

Management and Criticism was associated with greater burden, whereas use of

Encouragement was tied to less family member burden and less desire to institutionalize.9

Another study was done regarding Personality and Coping Among Caregivers of Spouses With Dementia In this study Personality factors and coping strategies were Examined among a sample of spouse caregivers. Fifty spouse caregivers of patients diagnosed with Alzheimer's disease or a related dementia completed the NEO-FFI, a personality inventory designed to measure traits identified in the five-factor trait model, and a revised measure of the Ways of Coping Checklist. Results from a series of multivariate regressions showed that personality traits explained 60% of the variance in emotion- focused coping, 30% of variance In problem -focused coping, and 15% of variance associated with social support coping . Discussion focuses on the usefulness of including personality characteristics of the caregiver in formulating models of the care giving coping process.10

6.2.2 Study related to disturbances in family functioning

A study was done regarding Loses in families affected by dementia: Coping strategies and service issues This article presents results & from a study which explored losses in families affected by dementia and how families dealt with such losses. Twenty persons caring for a partner with dementia were interviewed about their loss experiences and the impact of dementia on their families. Careers reported losses at different levels within the family, and a range of methods used to cope with loss and to maintain their family functioning were identified. Increased awareness about dementia- related family losses is encouraged and implications for service providers are presented.11

A study was done regarding sleep disturbances in care givers of persons with dementia This study Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: 1) the presence of caregiver disrupted sleep routines; 2) caregiver burden and depression; and, 3) the caregiver’s physical health status. Successful treatment of a caregiver’s sleep disturbance requires careful consideration of each of these contributors. This study review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. Provided a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers.12

A qualitative study was done in UK To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers. 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.

This shows Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them .

They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.13

A study was done regarding the role of family functioning in the stress process of Dementia Caregivers The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress- process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and distress. This study theorized family functioning to partially mediate the relationship between objective burden and distress and to significantly account for the prediction of distress beyond well -recognized predictors. : One hundred eighty-one family caregivers from the Miami site of the Resources for Enhancing Alzheimer's

Caregiver Health project participated in this study. And assessed socio demographics, burden, depression, anxiety, and perceived health for each caregiver. And measured family functioning by using a multidimensional and observational instrument. Used structural equation modeling to assess the fit of the model for the overall sample and for different caregiver subgroups and to examine whether demographic variables affected the relationships in the model.

The results of the study indicated that family functioning significantly contributed to distress in the overall sample and partially mediated the relationship between objective burden and distress. And also found that the stress-process model was adequately fit by the hypothesized relationships between objective burden, family functioning, and distress for the overall sample and all of the sub samples, except for wives. This study provides support for the structural family approach as an explanatory model for the influence of family functioning on dementia caregivers. Family structural functioning is one contributor to the caregiver stress process. This suggests that interventions targeting structural family problems may reduce caregiver distress.14

A study was done regarding the relationship between family functioning and dementia , The present study examined the interrelationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n

= 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients’ memory/behaviour problems and patients’ activities of daily living were also collected. Results indicated that higher levels of caregiver burden were significantly associated with increased caregiver depression and anxiety, greater frequency of memory and behaviour problems in the dementia patient, worse activities of daily living, and poorer family functioning. Even after controlling for caregiver depression, caregiver anxiety, and frequency of memory/ behaviour problems in dementia patients, poorer family functioning continued to be associated with higher levels of caregiver burden. Caregivers with high levels of burden reported greater family dysfunction in communication and roles, regardless of their relationship to the patient (i.e., spouse or child). These findings suggest that including a family systems component in caregiver interventions may be beneficial in reducing burden in these very distressed individuals.15 STATEMENT OF THE PROBLEM

A STUDY TO EXPLORE THE DISTURBANCES IN FAMILY DYNAMICS AND COPING STATEGIES USED AMONG FAMILY MEMBERS OF PATIENT SUFFERING FROM DEMENTIA IN SELECTED DEMENTIA CENTRES IN BENGALURU

6.3 OBJECTIVES OF THE STUDY

6.3.1To explore the disturbances in family dynamics among Family members of patients suffering from Dementia

6.3.2 To explore coping strategies used by family members of patient’s with

Dementia

6.3.3 To determine the association between disturbances in family dynamics and selected demographic variables.

6.3.4. To determine the association between coping strategies used and selected demographic variables.

6.4 HYPOTHESIS OF THE STUDY

6.4.1 RESEARCH HYPOTHESIS

H1: There will be significant disturbances in family dynamics of patient suffering from Dementia.

H2: Family members will adopt and use certain coping strategies to deal with the disturbances in order to maintain the family equilibrium. 6.5 ASSUMPTIONS

There will be a disturbances in the family dynamics of a patient suffering from Dementia and the family members will adopt coping strategies to maintain the equilibrium of the family dynamics.

6.6 RESEARCH VARIABLES

Disturbances in family dynamics and coping strategies used

DEMOGRAPHIC VARIABLES

Demographic variables are those attributes of the family members such as age , relationship to the patient ,economics status ,support systems. Education , health problems, type of family , education , etc

6.7 OPERATIONAL DEFINITIONS

6.7.1 Explore:

In this study Explore refers to identifying the disturbances caused in the smooth functioning of the family and the coping strategies used by the family members to resolve the disturbances.

6.7.2 Family Dynamics

Refers to all those factors that holds the family together and it’s smooth functioning on a day –to-day basis.

6.7.3 Coping Strategies

Refers to all those measures adopted by family members to cope with the stressors that disrupt the family functioning.

6.7.4 Family Members

Refers to at least one or two adult members aged 18 years and above living with the patient And related by marriage , blood or adoption..

6.7.5 Dementia

Dementia is a syndrome due to disease of the brain usually of chronic or progressive in nature. There is disturbances of multiple higher cortical functions including memory, thinking, orientation, comprehension, calculating, learning, capacity, language and judgment, but consciousness in not clouded. Occasionally deterioration in emotional control, social behaviour or motivation is also seen. 6.7 DELIMITATION

The study is delimited to family members of patients suffering from Dementia. in a selected Dementia centre , Bengaluru.

7.0 MATERIALS AND METHODS

7.1 SOURCE OF DATA

Family members of patients suffering from dementia at a selected dementia centre in Bengaluru.

7.2 METHOD OF DATA COLLECTION

Data will be collected by structured interview schedule

7.2.1 RESEARCH APPROACH

Descriptive and exploratory approach.

7.2.2 RESEARCH DESIGN

Non-experimental Descriptive design

7.2.3 SETTING

Study will be conducted in a selected dementia centre in Bengaluru.

7.2.4 POPULATION

Population comprises of family members of dementia patient 7.2.5 SAMPLING TECHNIQUE

Convenient sampling technique will be used to select the samples for the present study.

7.2.6 SAMPLE SIZE

The sample size includes 40 family members of patients suffering from

Dementia at selected dementia centre in Bengaluru

7.2.7 CRITERIA FOR SELECTION OF THE SAMPLE

Inclusion criteria

One or two adult members aged 18 years and above living with the patient and related by marriage ,blood or adoption..

Exclusion criteria

1. Family members below 18 years old

2. Family members those who are not willing to participate

7.2.8 DATA COLLECTION TOOL

Structured interview schedule

7.2.9 DATA ANALYSIS METHOD

The data analysis is through descriptive and Inferential statistics. Descriptive statistics

Frequency, mean, mean percentage and standard deviation to describe

demographic variables .

Inferential statistics

Chi square (χ2) test will be used to find out the association between selected

variables

7.3. DOES THE STUDY REQUIRE ANY INTERVENTION TO BE

CONDUCTED ON PATIENTS OR OTHER HUMANS OR ANIMALS?

Yes, the study involves exploring the disturbances in family dynamics and coping

strategies among the family members of patients suffering from dementia.

7.4. HAS THE ETHICAL CLEARENCE BEEN OBTAINED FROM YOUR

INSTITUTION?

 Ethical committee certificate of SRI VENKATESHWARA INSTITUTE OF

NURSING SCIENCE have been enclosed.

 Permission will be granted by authorities of selected dementia centre of

Bengaluru.

 Informed consent will be taken from family members who are willing to

participate in the study. 8.1 LIST OF REFERENCE.

1. What is dementia.{serial online}.cited 2010 December 04];

Available from: URL: http://www.health.cares.net.htm

2. Dementia [ serial online ] cited 2010 December 04]; Available from URL; http://www.health-cares.net..html

3. Understanding dementia[serial online ].2010 [cited 2010 December 04] .Available from URL: http://www.helpguid.org

4 Polidori CM, Nelles G, Pientka L. Prevention of dementia focus on lifestyle.

International Journal of Alzheimer’s disease [serial online, 2010 may 10

[cited 2010 December 04 vol..10];p: 9-12 : Available from: URL: http://www.international journal-alzheimer.org

5. Dementia guide [serial online [2008 June 11 [cited 2010 December 05].

Available from URL:http://www.dementiaguide_com.mht

6. Ocarles C. coping strategies influence caregiver outcomes among Asian family caregivers of person with dementia, International journal of Alzhimer disease [serial online] 5th august 2010] [cited 2010 December 10] 24(4). P:311 Available from

URL http://journals.iww.com./alzheimer journal/pages/currenttoc.aspx 7. Oqayhagen MP , Oqayhagen M. Alzhemier’s stress : coping with the care giving role., the Oxford journal [serial online]1988 [cited 2010 December 10] 28(3) p:391

Available from URL http://gerontologist.Oxford journals.org/content/28/3/391:.abstract

8. karlikaya G, yukese G, varlibas F, tireli H, caregivers burden in dementia :A study in the Turkish population, the Internet journal of neurology .[serial online]

2004 November 2 [cited 2010 December 10] 4(1) p:21-25 Available from URL http://www.ispub.com/ostia/index.php? xmlFilePath=journals/ijn/vol4n2/dementia.xml#h1-0

9 Hinricnsen AG, Niederehe G. Dementia management strategies and adjustments of family members of older patients, The oxford journal [serial online]1994

December 06 [cited 2010 December 05] :34(1) p:95-102 Available from URL

http:// geronologist Oxford journal.org/content/34/1/102:abstract

10. Hooker k, Frazier L D, Deborah J, Monahan M. Personality and coping among caregivers of souses with dementia, the oxford Journal [serial online]1994 December

6,[Cited 2010 December 06],34(3) p:386-392.Avilable from URL http:// spouses wit dementia+gerontologist.mht

11 .Bull AM, losses in families affected by dementia coping strategies and service issue. Journal of family studies, [ serial on linen ] 1998 October , [cited 2010

December 06] 4(2) :p:187-199. Available from URL http//www.family studies.mht 12.logsdon G R,Teri L, Vitiello M, Sleep disturbances in caregivers of person with

Dementia. PubMed central [serial online ]2007 February 6,[cited 2010 december06,]11(2);p:143-153

Available from URL http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861844/

13. Livingston G, Leavey G, Manela M, Livingston D, Rait G, Sampson E . etall..

Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK., PubMed [serial online ]2010 august ,[cited 2010 december

Avilable from URL http://www.ncbi.nlm.nih.gov/pubmed/20719843

14.Mitrani BV, Lewis E J, Feaster J D, Ezaya J S, Eiszofer C, Schulz R.etall.

The role of family functioning in the stress process of Dementia caregivers, the

Oxford journal [serial online]2005 July 29,[cited 2010december 10] 46(1):p:97-105

Available from URL http://gerontologist.oxfordjournals.org/content/46/1/97.abstract? relatedurls=yes&legid=geront;46/1/97

15.Tremont A, Unique contribution of family functioning in caregivers of patient with mild to moderate Dementia. dementia and geriatric cognitive disorder.[serial online]2006 January 3 [cited 2010 December 11] 21(3) :p:5 Available from URL http://content.karger.com/produktedb/produkte.asp? typ=pdf&file=DEM2006021003170 9. SIGNATURE OF STUDENT:

10. REMARKS OF THE GUIDE : The study is relevant and appropriate as

It explores and brings to light the various

Stressors that disturb the family

dynamics and the various coping

strategies used by the family members

11. NAME & DESIGNATION OF GUIDE : MR.RAJA SUDHAKAR.k

Asst. Professor

11.1. GUIDE NAME AND ADRESS: MR.Raja Sudhakar

Asst Professor

Sri Venkateshwara Institute of

nursing Sciences, Bommanahalli,

Hosur road,

Bengaluru 560068

11.2 SIGNATURE OF THE GUIDE:

11.3 HEAD OF THE DEPARTMENT: Asso Prof. Raja Sudhkar.K

HOD, Mental Health nursing

Sri Venkateshwara Institute of nursing Sciences, Bommanahalli, karur road, Bengaluru 560068

11.4 SIGNATURE OF H.O.D:

12. REMARKS OF PRINCIPAL: This study will explore the

disturbances in family dynamics

and coping strategies used among

family members of dementia

patients

12. SIGNATURE OF THE PRINCIPAL: Asst Prof. Saraswathi.P

The Principal,

Sri Venkateshwara Institute of

nursing sciences, Bommanahalli,

Hosur Road Bengaluru 560068