WHAT IS CAREGIVER BURDEN?
- The overall impact of physical, psychological, social, and financial demands of caregiving has been termed caregiver burden.
- Caregiver burden refers to the physical, financial, and psychosocial hardships of caring for a loved one, usually a family member, struggling with a medical condition.
George and Gwyther1986 ; Zarit SH, Reever KE, Bach-Peterson J. 980;20:649–655
10 Signs of Caregiver Stress or Burden
- Denial—of the effects of the disease on your loved one
- Anger—at the disease, loved one
- Social withdrawal
- Lack of concentration
- Health problems
PHYSICAL HEALTH COSTS
Higher risk of death (mortality)
- Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than no caregivers of the same age.
Increased Susceptibility to illness
¤ Diminished immune response, which leads to frequent infection and increased risk of cancers.
n caregivers have a 23% higher level of stress hormones and a 15% lower level of antibody responses.
n Caregivers also suffer from slower wound healing.
n Cardiovascular problem risk increases
REACH study of spousal caregivers over 18 months average age 61
¤ 25% increase in rate of health services utilization at cost of extra 5,000/yr.
¤ Health of caregivers decreased as dementia severity increased
SOURCES Butcher, Holkup, & Buckwalter, 2001, Kiecolt-Glaser, (1991). Kiecolt-Glaser, J1996).. Glaser, R. & Kiecolt-Glaser, J.K. (1997). 59 Vitaliano, P., Zhang, J. & Scanlan, J. (2003). Resources for Enhancing Alzheimer’s Caregiver Health (REACH) National Alliance for Caregiving and Richard Schulz, Ph.D. and Thomas Cook, PhD, MPH November 2011 Schulz, R. & Beach, S.R. (1999), Vitaliano 2010 JAGS 58(5);
Caregiver health is a major issue, given that women often take better care of the loved one with Alzheimer’s than themselves. The Alzheimer’s Association estimates that caregiver health problems cost the U.S. $8.7 billion each year.
“He doesn’t want to go out because of his difficulty in walking, he doesn’t want to go in a wheelchair . . . so this also prevents me from going out . . . we [are] very much isolated.”
¤ Withdrawal from friends and activities
¤ Friends withdraw from you
¤ Use of alcohol as coping method
SOURCES Gauge, et al., 2005; Yaffe et al., 2002 Strang et al., Clinical Nursing Research 2006: 15(1)
CAREGIVER BURDEN IN TRINIDADIAN CAREGIVERS
The eighty-seven caregivers were administered the Zarit Caregiver Burden Scale questionnaire (ZCBS) and the general health questionnaire GHQ. The ZCBS was developed by Zarit and co-workers in 1985 and comprises a 22 item questionnaire with a five-item response set ranging from ‘‘never’‘ to ‘‘nearly always’ graded on a scale from 0 to 4, according to the presence or intensity of an affirmative response. Based on the total score individuals were classified as having little or no burden (0-20), mild to moderate burden (21-40), moderate to severe burden (41 to 60), or severe burden (61-88)
The ZCBS scores ranged from 0 to 63 mean 22.7, s.d .14.7. and 55 % overall had some degree of burden. The GHQ Scores were >47 in 49.3 % caregivers. Significant correlations were a higher caregiver burden for persons taking care of male patients p=0.03, and borderline significance in minority ethnic groups p=0.07. Higher caregiver burden scores using the ZCBS were associated with higher caregiver GHQ scores.
OUR STUDY IN TRINIDAD AND TOBAGO REVEALED THE FOLLOWING:
- The majority of caregivers are women, more specifically middle aged women. It is noted that the majority of these women are first degree relatives. This is a group that is at increased risk for stress related medical conditions since they form the majority of the caregivers.
- Another issue that this study hints at is the impact of this unpaid caregiving on the financial health of these individuals who in their middle ages would have other responsibilities including taking care of their own families. This is especially important since the average duration of dementia in our study was 6 years.
- There was a significant correlation between the duration of dementia and the ZCBS this is not unexpected since dementia in most cases is a chronic condition with progressive deterioration. Along with this comes the need for more direct supervision and personal care for the patient as manifestation of deficiencies in activities of daily living become apparent, both of these could contribute to increased stress.
This study is ongoing and caregivers are invited to contact us to have their level caregiver burden measured.