For more than two decades, the New York State Office for the Aging (NYSOFA) has developed and implemented an array of services that support and assist informal caregivers in caring for their loved ones aged 60 and older who are frail, chronically ill, or in need of assistance in daily tasks.¹ Informal caregivers are generally defined as individuals who provide assistance to someone who has physical or mental impairments and is in need of help with tasks of daily living. These caregivers are usually family members, friends, and neighbors, who are not paid for the support and assistance they provide.
There are some formal services, provided by paid care providers or volunteers associated with a formal service program, available to caregivers and care receivers. The types of caregiver support services provided through NYSOFA and local Area Agencies on Aging (AAAs) include
- Information about available programs and services;
- Assistance in gaining access to programs and services;
- Services such as individual counseling, support groups, training to assist caregivers in the areas of health, nutrition, financial literacy, and support to make decisions and solve problems related to their caregiving roles;
- Respite care to temporarily relieve caregivers from their responsibilities by providing a short-term break through home care, overnight care in an adult home or nursing home, adult day care and other community-based care; and
- Supplemental services to complement the care provided by the caregiver, such as a personal emergency response system, assistive technology, home modifications, home delivered meals, transportation, etc.
Past NYSOFA/AAA caregiver reports tend to be limited to the number of caregivers and care receivers served by aging services network programs and services, and the units of services utilized, with little information about their detailed demographic characteristics, functional status, health conditions, caregiving experience, and the impact of the services they received. To enhance understanding and provide a clear portrait of caregivers, care receivers, and the impact of aging services, a survey was undertaken in 2008 to: (1) gather detailed information that describes the caregiver population who receive services from NYSOFA/AAA caregiver programs and services; (2) quantify and demonstrate the impacts of NYSOFA/AAA support services and programs on caregivers; and (3) help inform program administrators, service providers, and policy makers so that they may improve programs and services for caregivers.
The Sustaining Informal Caregivers: New York State Caregiver Support Programs Participants Survey Report of Findings on the Aging Services Network that is based on the survey results, underscores the importance of caregivers and their roles in the lives of older adults in communities across New York. It is the first effort to systematically document the impact and merit of NYSOFA/AAA caregiver support programs and services in assisting caregivers caring for their loved ones. The Report is divided into eight sections:
- Survey Objectives and Methodology: This section provides a brief description of the methodology used to collect the survey data.
- Caregiver Characteristics: This section provides detail about characteristics of informal caregivers providing care to older adults.
- Care Receiver Characteristics: Health conditions and functional status of care receivers are highlighted in this section.
- Relationship Between Caregivers and Care Receivers: This section addresses the relationships between caregivers and care receivers, living arrangements, and more.
- Amount of Care Provided: Unique insights are offered about the amount, type, and care load of informal caregivers.
- Caregiving Rewards and Burdens: Caregiving rewards and burdens are shared from the survey findings.
- Service Satisfaction and Outcomes: Key findings about the outcomes of services, anecdotal statements by caregivers on how services affect their lives, and how services could be improved are discussed in this section.
- Discussion and Implications: The significance of informal caregivers and caregiving consequences are discussed, and an economic value formulation of informal caregiving that translates the labor contributed by informal caregiving into estimated monetary value within the paid system of care delivery is presented. Additional services that would enable caregivers to continue in their roles also are offered.
Objectives and Methodology
In 2008, NYSOFA undertook a statewide Caregiver Support Programs Participants Survey to achieve the following three primary objectives:
- Describe the caregiver population who are using NYSOFA/AAA caregiver support programs and services;
- Understand and quantify the impacts of caregiver support services; and
- Use the results to help inform and improve the programs offered through NYSOFA/AAAs.
The survey was conducted by mail from mid-May to mid-June, 2008. A sample of 1,109 caregivers was randomly selected from a stratified random sample of 30 of New York's 59 AAAs using caregiver support program participants lists to draw the sample population of caregivers who received caregiver support services in State Fiscal Year 2006 (April 1, 2006 to March 31, 2007) (see Appendix C for Methodology and Limitations). Of the 1,109 caregivers included in the sample, 607 responded to the survey, representing a response rate of 55 percent (see Appendix D for Detailed Response Rate). This response rate exceeded the conventional expectations for a mail survey, which is usually below 35 percent. The survey instrument was developed through a collaborative effort of NYSOFA staff and the Caregiver Survey Advisory Committee.² The instrument included questions on caregiver characteristics, care receiver characteristics, relationship between caregivers and care receivers, caregiving involvement, caregiving rewards and burdens, and service satisfaction and outcomes. While this survey has applied a rigorous random sampling methodology, the findings of this survey are limited to caregivers who are either currently receiving formal services from NYSOFA/AAA's caregiver support programs or have received services during the previous year. Therefore, characteristics explored in this survey can only be generalized to caregivers in NYSOFA/AAA caregiver support programs, which may be different from the general caregiver population (see Appendix E for Sample Weighting Scheme).
The results obtained from the caregivers who responded to the 2008 Caregiver Survey are highlighted in this Report. Throughout this Report, the term "caregiver" will be used to refer to those caregivers served by NYSOFA/AAA caregiver support programs.
- See New York State Caregiver Services Survey: NY Connects Local Long Term Care Councils' Assessment of Caregiver Support Services. Report to the Family Caregiver Council. Caprio, T., Katz, P., Karuza, J., and Rehse, D. (2009).
- A Caregiver Survey Advisory Committee, consisting of NYSOFA staff, AAA Directors and Caregiver Support Program Coordinators, was established in 2005 to give advice on the development of the survey instrument and method of data collection (see the Acknowledgements section for a list of committee members).