Coping Strategies Of Family Caregivers Of Persons With ... · The Coping Strategies of Family...

The Coping Strategies of Family Caregivers

of Persons With Advanced

Alzheimer’s Disease

Enna D. Santiago, MSG, PT, PhD

Introduction to the Study

Alzheimer’s disease (AD) is an insidious disease of unknown etiology

that causes a steady, progressive deterioration of the individual’s

intellectual capacity, with no signs of remission. (AA, 2010a; AA, 2010b;

AA, 2009).

The progress of AD requires assistance with personal care and safety

from a family caregiver, but providing care to persons with AD promote

negative health outcomes for family caregivers

Problem Statement

Family caregivers present difficulties in handling coping with the

diagnosis and the disease challenges as the disease progresses into

later stages (AA, 2009; Boise, Congleton, & Shannon, 2005).

An increment in the stressors and the burden experienced by family

caregivers, result in adverse health outcomes (Cooper, Katona, Orrell,

& Livingston, 2008; Donelan, et al., 2002; Paun, Farran, Perraud, &

Loukissa, 2004).

Who are the Family Caregivers?

The family caregivers are:

The persons within the family members who are responsible for the

affected person’s daily care.

Unpaid relatives who may or may not live with the persons with

AD, but provide extensive hours of personal care to the affected

persons.

(Brodaty & Green, 2002; Farcnik & Persyko, 2002; Nerenberg, 2002).

What is Caregiver Burden?

Caregiver burden is used to:

Describe the “emotional, physical, social, and financial” (Brangman, 2006,

p. 15) stress associated with the provision of care to a relative with AD.

Identify the stress and strain sustained by people who provide care to a

relative with AD and when they are unable to cope with caregiving

demands, they experience caregiver burden (Brodaty & Green, 2002).

Indicate that high levels of stress associated to the provision of care to a

relative with AD produces an impact on the caregivers’ physical and

mental health (Brodaty & Green, 2002; Savundranayagam, Hummert, &

Montgomery, 2005).

Family Caregiving’ Health Outcomes

Family caregivers experience:

Adverse health outcomes due to stress and strain of caring for

their love ones for many hours a day

Difficulties in their ability to cope with the diagnosis and the

disease challenges as the disease progressed into later stages

Stressors associated with personal characteristics,

socioeconomical status, kinship, and family support, affect

family caregivers’ health and the ability to provide care.

Research Methodology and Theoretical

Framework

Initially I used grounded theory to investigate the coping strategies

among family caregivers of persons with stages 5 to 7 of AD.

The theory of self-efficacy (TSE) from Bandura (1994) was used as

theoretical framework.

(Bandura 2001; Creswell, 2007; Liamputtong, 2009).

Study Population and Inclusion Criterion

Study population and participation criterion included:

Family members who were providing care at home to persons with stage 5 to 7 of AD

Lived in Puerto Rico

Have taken care of the affected person for 5 years or more

Were older than 18 years

Had no personal or professional relation with me.

Sample Size

A sample size of 10 participants permitted me to collect sufficient data

about the coping strategies of family caregivers of persons with stage 5

to 7 of AD.

Data Collection Method and Tool Used

A questionnaire with 6 open-ended questions was used to collect data

during face-to-face interviews.

Interviews were recorded

Table 1: Demographic Characteristics of Study Participants.

Table 1 lists a summary of demographic characteristics of study participants

Gender Number Mean Age

Female 9 61

Male 1 75

Total 10 62.4

__________________________________________________________________________

Relationship to Person with AD:

Relationship Number

Daughter 8

Female Spouse 1

Male Spouse 1

Total 10

Sub Question 1

“What are the coping strategies used by family caregivers of those persons

with AD in stage 5 to 7?”

Codes: Bedbound Care, routine care, mobile persons, and

communication

Sub codes: Functional dependency, combativeness, and prevention of

disruptive behavior

Theme: Caregiving skills

Sub Question 2

“What difficulties do family caregivers experience during the provision of

care to family members with AD in stage 5 to 7?”

Codes: Physical problems, disruptive behavior, and lack of support

Sub codes: Injuries during care and caregiver negligence of health

Theme: Difficulties (physical and behavioral)

Research Sub Question 3

“What stressors do family caregivers experience while taking care of

persons with AD in stage 5 to 7 that may impact their health and ability to

provide care?”

Codes: Functional and cognitive deficits, mourning conjugal

relationship, changes in lifestyle, and role changes

Theme: Stressors (cognitive and emotional)


“What strategies do family caregivers use to reduce stressors associated

with caregiving of persons with AD in stage 5 to 7?”

Codes: Use family help and paid help

Theme: Strategies to reduce stressors


What learning strategies are employed by family caregivers to learn about

AD?

Codes: Physical and cognitive impairments and behavioral management

Theme: Increased knowledge about AD

How to care for persons with AD?”

Codes: Published information, self experiences, and others’

knowledge/experiences

Theme: Strategies to lean


“What strategies do family caregivers use for self-care?”

Codes: Safety measures, love and understanding as motivators

Themes: Self-care and love and understanding

Theory of Self Efficacy (TSE)

The theory of self-efficacy (TSE) from Bandura (1994) help me to:

Understand how family caregivers assess their personal attributes to promote changes that influence their

lives.

Delineate family caregivers needs for knowledge to understand AD.

Find the criteria used by family caregivers to make decisions that involve the care recipients’ well-being and

the safeguard of their own mental and physical health.

Define family caregivers’ coping strategies to manage the disease challenges.

Identify interventions used to cope with caregiving responsibilities and their effectiveness

Identify family caregivers’ personal expectations and goals when providing care to persons with AD.

(Bandura, 1994; Rabinowitz, Mausbach, Thompson, & Gallagher-Thompson).

Study Results

With the use of the theory of self-efficacy beliefs I was able to identify the

strategies used by family caregivers to develop coping strategies. The

strategies included:

Social persuasion

Vicarious experiences

Emotional arousal

Social Persuasion

Bandura (1994) defined social persuasion as a strategy used to verbally

persuade individuals that they have capability to overcome difficulties

and to succeed.

Four caregivers (participants 3, 4, 7, 8) were convinced by friends,

neighbors, health care professionals, and others that they were able to

provide care and to manage difficult situations.

(Bandura, 1994)

Vicarious Experiences

Vicarious experiences can be done through observing others and learning from their

experiences (Bandura, 1994).

Models can enhance individuals’ personal beliefs to master challenges (Bandura, 1994).

Three caregivers (Participants 1, 3, 4) reported that they learned from family members , friends,

and/or neighbors how to provide care.

Two caregivers (1, 2) reported that they observed other family members and paid help while

providing care to relatives and learned from their experiences (modeling), which equipped

them better to take care of their health.

Five family caregivers (5, 6, 7, 8, 9) reported to persevere in what they believed can be

mastered through trial and errors.

(Bandura, 1994)

Emotional Arousal

People judged their capabilities to overcome difficult situations based on

emotional and somatic reactions (Bandura, 1994).

Family caregivers (2, 5, 7, 8, 9, 10) expressed that their love for the person

with AD served as motivators for care.

They indicated to be willing to go through difficulties to keep their love ones

at home and to be motivated to take care of their health in order to be able to

provide care .

(Bandura, 1994)

Coping Strategies

The results indicated that caregivers used social persuasion, vicarious

experiences, and emotional arousal to develop caregiving skills, which resulted

in better health outcomes.

Five caregivers who took care of their health reported to have better heath.

Five caregivers who did not took care of their health indicated to have medical

conditions that have affected their health, which agreed with Bruce et al.

(2005). Bruce et al. found that spending many hours for care affected

caregivers’ physical and mental health.

Family Caregivers’ Modified Theory

(Enna’s Theory)

Vicarious Experiences

Strategies to learn about AD

Strategies to increase

knowledge about AD

Verbal Persuasion Strategies to reduce stressors

Love and understanding

Self-care

Emotional Arousal Stressors

Physical problems

Disruptive behavior

Coping Strategies

(Developed over time)

Caregiver skills

Successful

Performance

Positive health

outcomes

Positive caregiving

experience

Reduced disruptive

behavior

Research Findings

Research findings revealed that family caregivers needed to:

Learn information about AD and how to manage associated signs and

symptoms in order to provide care.

Develop skills to provide care to mobile and nonmobile persons with AD, to

reduce difficulties during care.

Learn strategies to prevent injuries and falls that might affect the person with

AD and/or them.

Search for family and/or social support in order to take care of their health.

Recommendations for Action

This study confirmed that family caregivers experience many challenges at

home and the lack of knowledge, support, and caregiving skills, make it

difficult to cope. The recommendations for action include:

The development of educational programs and skills’ development

workshops to improve family caregivers’ knowledge about AD, its

challenges, and what is expected from them during the provision of care.

A plan to help family members to understand caregivers’ need for support

and understanding.

The development of policies and government support services’ programs

that will benefit studied population.

The publication and dissemination of the study results through different

media sources.

Implications for Social Change

The implications for social change include the need to:

Develop community-based responses to address family caregivers’ challenges at home.

Advocate for family caregivers and change of attitudes towards them as persons that

require family and social support to manage the persons with advanced AD at home.

Disclose findings from this research at different groups, institutions, and politicians, to

raise awareness about stressors that affect family caregivers of persons with advanced

AD and their needs for support.

Develop educational modules based on research findings with different Alzheimer’s

associations and universities, to educate families and family caregivers of persons with

AD about the disease signs, symptoms, associated challenges and strategies to address

them.

Conclusion

The results from this study revealed that lack of knowledge about AD and

caregiving skills affected family caregivers of persons with advanced AD.

The research findings exposed how family caregivers were subjected to daily

stressors related to caregiving, which deteriorated their physical and mental

health.

Research participants revealed how they searched different sources for

information and were able to develop coping strategies to overcome challenges

associated with AD.

The presented results from those experiences through this research will serve

other caregivers in the same situation to learn that no matter how difficult is to

take care of a person with AD, there is always hope to learn and to develop

skills for care.

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