Dedicated caregivers are responsible for providing unlimited assistance including complex nursing care, cognitive support and care management both in a nursing institution and at home. An intensive study of the caregiving process revealed that caregivers are poorly prepared for their roles and are providing care with less or no support. They are burdened and experiencing physical and psychological illnesses. These issues brought adverse effects on their delivery of care which indicate a need to assess caregivers and implement reform in the system.
The assessment for Parkwood Healthcare Community in Bedford, Texas was conducted by caregiver researchers and agency officials. This assessment will identify specific needs of caregivers and will aid them in implementing fundamental changes in the system. Surveys and interviews were conducted to 200 caregivers in the facility with questions such as, “How is your work affecting your health and well-being?” 5 in 10 caregivers responded that they’ve been experiencing chronic conditions due to exhaustion and stress. Other questions include “Do you smoke or drink alcohol?” 40% smoke while 30% use alcohol and 10% take supplementary drugs. Because of their complex role of providing care, caregivers experienced chronic conditions in which they are vulnerable to depression, grief, fatigue and physical health problems due to stress, exhaustion and self-neglect. Poor health behavior such as inadequate diet, exercise and sleep are most common as well as the use of alcohol and anti-depressant drugs. 3 in 10 caregivers responded that the deterioration of their health is associated with the nature of their work. Caregiver researchers believe that crisis in caregiving is associated with our country’s poorly coordinated healthcare system which brought barriers to effective caregiving practice and research. They concluded that a fundamental change in the system is needed to recognize the importance and value of caregivers and that failure to implement changes will bring negative influence on people’s health, quality of life and financial security. To address these issues, effective support for caregivers should be developed to meet their most pressing needs which include adequate training, additional respite care and increased access to support programs. Researchers strongly promoted the following recommendations:
- Leadership and coordination – creating a National Quality Caregiving Task Force to accelerate efficiency and speed of development of a new system.
- Caregiver health tracker – require all states to utilize risk assessment measure (RAM) to identify their unmet needs.
- Extend public awareness – prioritize the health risk of caregivers by educating the public of the critical role of caregiving.
- Professional enhancement - skills training and programs should be culturally-sensitive and evidence-based.
- Advanced research and development – create effective systems of caregiver support that includes successful service on diverse communities.
- Develop natural settings services to enhance accessibility – training and technical assistance for caregivers should be streamlined to produce evidence-based programs.
- Access to professional assessment – caregivers should be given access to skilled professionals that conduct caregiver risks and assessments with measurable results.
Based on the needs determined at assessment, a RAM (risk assessment measure) program was developed to identify risks and measure outcomes. This program is a customized plan of support packaged into a Caregiver Handbook with objectives to identify caregivers as well as provide easy access to evidence-based caregiver support.
Supervised by program investigators and various caregiver agencies, implementation of the project was provided to family caregivers assisting individuals with Alzheimer’s disease.
Caregivers were provided with live and telephone support by the Family Resource Center at Seton Northwest Hospital in Austin,Texas.
During the course of the program, the following barriers were identified:
- Balance between original intervention and actual application
- Developing a program on existing systems and relationships
- Patients with Alzheimer’s disease admitted in the hospital had no identified caregiver
The RAM program was primarily initiated in nursing units where most of the patients have Alzheimer’s disease. Training of the program for nurses was done through staff meetings, newsletters and e-mails. Caregivers that provided care for the person hospitalized were identified through reminder prompts which were posted in the nursing electronic medical records. A caregiver packet containing information about the program was sent to the identified caregiver together with a postage- paid envelope. Although follow-up enrollment into the program didn’t work as expected in the first year, nurses continued to send caregiver packets to identified caregivers. This time, the program staff conducted follow-up visits urging them to enroll in the program. The strategy was effective as the enrollment increased in the following year. Continued education about the program was infused into the general nursing orientation and Family Caregiver program was also implemented in the internal medicine primary care clinic. Program staff customized the location of the Caregiver packet and additional services such as respite care and mental health counseling were established.
- 60 caregivers were enrolled in the program in both hospital and clinic settings
- A remarkable decrease in the caregiver’s overall RAM score
- Reduced caregiver stress and burden was indicated in the RAM questions while other questions and areas became increasingly remarkable
Averting the Caregiving Crisis. (October, 2010). Rosalynn Carter Institute for Caregiving. Retrieved from http://www.rosalynncarter.org/UserFiles/File/RCI_Position_Paper100310_Final.pdf
Caregiver Health. Family Caregiver Alliance. Retrieved from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1822
Scott & White Program on Aging and Care. Rosalynn Carter Institute for Caregiving. 2012. Retrieved from http://www.rosalynncarter.org/Scott%20and%20White/