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Chronic Illness and Family Caregiving

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Laura Carey

on 17 March 2014

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Transcript of Chronic Illness and Family Caregiving

Chronic Illness and Family Caregiving
“Imagine waking up every morning – for the rest
of your life- knowing that you are sick. Imagine
knowing that the good days will become fewer
and further between, and the bad days will become
more frequent. Imagine the fear, frustration, and hopelessness you would face. Imagine the impact on
your family, your friendships, your finances, and
your future. Welcome to the world of chronic illness.”
-(Drummond, n.d., p.1)
Definition of Chronic Illness
The literature does not provide a single uniform definition of chronic illness. Many definitions include factors such as: duration, latency, effect on function,pathology, risk factors and need for medical care.
Types of Chronic Illness



Chronic diseases are the
leading cause
of death and disability in the United States (Centers for Disease Control and Prevention, 2014).

In the U.S.,
(approximately 133 million) of Americans are affected by chronic disease. This number is projected to grow to
157 million by 2020
(National Health Council, 2013).

More than
70 million
Americans ages 50+ (4/5 adults) suffer from 1 chronic condition.
More than 1/2
have multiple chronic conditions and
11 milllion
live with 5+ chronic conditions(AARP,n.d.,p.10)
Presented By: Amy Enos and Laura Carey
Examples of Definitions
1. “…those conditions that last a year or more and require ongoing medical attention
and/or limit activities of daily living” (Anderson & Horvath, 2004, p. 263).

2. “Any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning”
(Chronic illness, 2009).



Cardiovascular Disease

This list is not exclusive, but identifies common chronic illnesses. No one is immune to Chronic conditions.
Effects of Chronic
Illness on the Individual
-Increased financial demands due to healthcare needs.
-Often older adults live on fixed income. Additional medical expenses can create a strain on their budgets.
-Inability to work and earn wages can compound financial stressors (Drummond, n.d.).

-Self-esteem: Feelings of self doubt and worthlessness increase as physical and mental abilities decrease.
-Body Image: Fluctuates with time as a result of changes in appearance,capabilities and social roles (Falvo,2009).
-Sexuality: Limited by chronic illness and by physical, emotional and social limitations (Falvo, 2009).
Effects of Chronic
Illness on the Individual
-The emotional reactions of individuals to chronic illness may vary in type and intensity. The following responses are common: (Falvo, 2009 & Drummond, n.d.)

Psychological Effects Include:
-Grief(for oneself, the loss of reduced abilities)
-Anger( frustration with reduced abilities and unfairness of illness)
-Fear and Anxiety(uncertain present and future)
-Depression(sadness due to reduced abilities, helplessness and dejection)
-Guilt(diminished roles, feelings of inadequacy)
Experience of
Chronic Illness
An individual’s experience of chronic illness will vary based upon a number of factors, including:

-Personal Factors (gender,age,race,past experience, coping skills)
-Socioeconomic Status
-Social Support and Relationships
-Personal Goals
Definition of
Family Caregiving
"Family caregiving is broadly defined and refers to a wide range of unpaid care provided in response to illness or functional impairment to a chronically ill or functionally impaired older family member, partner, friend, or neighbor that exceeds the support usually provided in family relationships."
Factors that Contribute
to Chronic Illness
Longer Life Expectancy
-This is a result of improved medical care and advances
in technology and treatment options.
Aging Population
-Individuals over the age of 60 account for 10% of the
world’s population. This number is expected to increase to
20% by the year 2050 (Christ & Sadhna, n.d.).
Advances in Treatment
-This leads to an increased number of individuals being
screened for and diagnosed with chronic diseases.
Lifestyle Factors and Behaviors
- lack of physical activity, poor nutrition, tobacco use
and/or excessive consumption

(Centers for Disease Control and Prevention, 2014, & AARP, n.d.)
Possible Effects of
Chronic Conditions on Health
Increased health risks

Reduced quality of life

Higher risks of comorbidity

Decreased functioning In daily living

Increased risk of hospitalization

Higher rates of medical care

Lower life expectancy
(AARP, n.d.)
Effects of Chronic
Illness on the Individual
“Chronic illness and disability produce
significant change and consequently
stress associated with both physical imbalance
and psychological turmoil as individuals must deal with a
change of customary lifestyle, loss of control, disruption of physiological processes, pain or discomfort, and potential loss
of role, status, independence, and financial stability”

-(Falvo, 2009, p. 9).

Effects of Chronic
Illness on the Individual
The effects of a chronic illness on an individual may vary tremendously based on needs, abilities, and circumstances that affect his/her functional capacity (Falvo, 2009 & Drummond, n.d.).

Functional effects can include:
-Physical changes ( side effects of medication and pain/symptoms of illness)
-Vocational issues (changes in ability to work)
-Reduced physical abilities (increased fatigue, decreased strength, lifestyle activities)

-Changes in personal and professional relationships often occur as a result of chronic illness.
- Families are dramatically affected by the diagnosis of and living
with chronic illness (Drummond, n.d.).

Stress of Chronic Illness
The degree of stress that an individual experiences secondary to a chronic illness is often associated with perceived threats. Potential threats posed by chronic illness and disability include the following:
"Threats to life and physical well-being" (Falvo, 2009, p.11).

"Threats to independence, privacy, autonomy and control"(Falvo, 2009,p.11)

"Threats to the ability to remain in familiar surroundings"(Falvo, 2009,p.11)

"Threats to economic well-being"(Falvo, 2009,p.11).
(Messecar, 2012)
million of family caregivers care for someone 50+ years of age (Family Caregiver Alliance, 2012).

, caregiver support was
for elderly persons 80+. In
, the ratio is expected to drop to a
ratio and continue to decrease until 2050 (Feinberg, Houser & Redfoot, 2013).

On average, caregivers spend
hours per week providing care. Those who live with their care recipient spend 39.3 hours per week caring for that person (Family Caregiver Alliance, 2012).
Factors of Being
a Caregiver
Who? :
Often a female family member is the caretaker (Cox,2012).
Approximately 66% of caregivers are women and 43.3% are men.
Women tend to provide personal care, whereas men tend to help with errands, transportation and lifting.

Caregivers often struggle physically, financially and psychologically as they care for their loved ones.

More feasible than nursing homes or in home hired care.
Many families feel a cultural or biological obligation to do
their best to care for a family member on their own
before hiring someone else to do it.
Hours Dedicated to Caregiving
Family caregivers are very dedicated and invested in
the well-being of an ill family member. Many hours are spent on caring for the elderly individual.
Effects of Chronic Illness on the Caregiver
"Family caregivers provide more than 80% of the long-term care for older adults in this country. Caregiving can be difficult, time-consuming work added on top of job and other family responsibilities. If caregivers suffer negative consequences from their caregiving role and these are not mitigated, increased morbidity and mortality may result for caregivers. Not all outcomes from caregiving are negative; there are many caregivers that report rewards from caregiving."
Effects of Chronic Illness on the Caregiver
-Caregivers tend to have poorer physical health than their peers who are not caretakers. This can include:
Risk of serious illness
Risk of physical injury
Higher percentage of fatigue and exhaustion
-Caregivers who try to lead a social life with their friends, family and other outlets, usually struggle with feelings of guilt and feel burdened.
- Due to the hours required for care, social interactio-
ns often fall to the wayside as the need for care

Effects of Chronic Illness on the Caregiver
-Caregivers often experience economic hardship while caring for a chronically ill family member. This is often due to:
Frequently missing work to care for the family member
Changing jobs or position at work to accommodate their caretaker schedule.
Leaving a job entirely to dedicate more time to their loved one.

- Caretakers are most effected psychologically by their role and job as
a full time caregiver. Some of the psychological effects are:
Positive Effects of Caregiving
It is very satisfying to dedicate time and know that a difference is being made when caring for a family member.

As time goes on the care taker will develop "new skills and competencies" that can be applied in other areas of their life (Messecar, 2012).

Spending quality time with a loved one who may have limited time left to live.

The ability to help make life decisions with or for a loved one
in the comfort of a home environment. (This is especially
true when caring for one's mother or father.)
(Family Caregiver Alliance, 2012)
(Messecar, 2012)
(Bernis,Given, Petlick & Reinhard,2008)
High Stress
Feelings of guilt
High levels of distress
Unhealthy coping
(Cox, 2012)
"Happiness consists of giving and in serving others."
-Henry Drummond
AARP. (n.d.). Chronic conditions among older Americans. Retrieved March 2014,
from http://assets.aarp.org/rgcenter/health/beyond_50_hcr_conditions.pdf

Anderson, G. & Horvath, J. (2004). The growing burden of chronic disease in America.
Public Health Reports, 119, 263-270.

Bemis, A., Given, B., Petlick, N., & Reinhart, S. (2008). Patient safety and quality: An evidence-
based handbook for nurses. Rockville,MD: Hughes R.D. Retrieved from http://www.ncbi.nlm.

Brodaty, H. (2009). Family caregivers for people with dementia. Dialogues in clinical
nueroscience, 11(2), 217-228. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC

Centers for Disease Control and Prevention. (2014). Chronic diseases and health
promotion. Retrieved March 2014, from http://www.cdc.gov/nccdphp.

Christ, G. & Diwan, S. (n.d.). Chronic illness and aging. Council on social work
education. Retrieved March 2014, from http://www.cswe.org/File.aspx?id=25462


Chronic illness. (2009). In Mosby’s Medical Dictionary (8th ed.).
Retrieved March 2014, from http://medicaldictionary.thefreedictionary

Cox, C. (2013). Factors associated with the health and well-being of dementia
caregivers. Current Translation Geriatrics and Experimental Gerontology Reports , 2(1), 31-36. Retrieved from http://link.springer.com/journal/13670

Drummond, N. (n.d.). The psychology of chronic illness. Retrieved March 2014, from

Falvo, D. R. (2009). Psychosocial and functional aspects of chronic illness and
disability. In E. Elkle et al (Eds.), Medical and psychosocial aspects of chronic illness and disability (pp. 9-34). Retrieved March 2014, from

Famiy caregiver alliance;selected caregiver statistics. (2012, December).
Retrieved from http://caregiver.org/node/44

Feinberg, L., Houser, A., & Redfoot, D. (2013, August). The aging of the baby
boom and the growing care gap: A look at future declines in the availability of family caregivers. Retrieved from http://www.aarp.org/home-family/caregiving/info-08-2013/the-aging-of-the-baby-boom-and-the-growing-care-gap-AARP-ppi-ltc.html

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the elderly [youtube]. Available from

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This video discusses the emotional needs of
the elderly individual and his caregiver.
Chronic Illness Effects the Family
Chronic illness effects not only the individual but the
family as a whole. The physical, emotional and
psychological toll it takes on the ill individual and the
caretaker is life altering. In order for there to be effective and healthy coping, the needs of both individuals need to be addressed.
Chronic Illness and Family Caregiving
Messacar, D. (2012, August). Family caregiving nursing standard of
practice protocol: Family caregiving . Retrieved from http://consultgerirn.org/topics/family_caregiving/want_to_know_more

National Health Council. (2013). About chronic diseases. Retrieved March
2014, from http://www.nationalhealthcouncil.org/NHC_Files/Pdf_Files/AboutChronicDisease.pdf

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on the family. Beliefnet. Retrieved March 2014, from

Presented By:
Amy Enos and Laura Carey
(Family Caregiver Alliance, 2012)
Full transcript