Caregivers Comments: Impacts of Services on their Lives
As part of the survey, caregivers had the opportunity to add narrative comments. The tone of the anecdotal responses was very positive and many caregivers felt very grateful for the services. Also of interest were responses that revolved around the themes of being a better person (n=3), being more confident (n=4) and being able to provide more care (n=6). The following is a sample of caregivers' statements in their own words about the effects of aging services:
"Services that helped most were the linking to other services that helped with paying of medical bills, application for subsidized housing, food aid, and moral support. Felt less isolated. Made my life easier."
"These services have allowed me some flexibility in getting care receiver's personal business done; sadly I have little time available during the day for myself."
"It gave me one day for myself 9-3."
"Attending Alzheimer's caregivers support group meetings was helpful and provided better understanding of problems; Helped in the long run."
"Being less stressed; you approach the individual calmer. You can think clearer - make better decisions. Having a more positive attitude reflects upon the person you are caring about."
"The support group has given me information and emotional support."
"I feel I am not alone; I have become more patient and understanding, more grateful for the prayers of others."
"If it were not for the counseling I received, I don't know what I would have done. It helped me so much to cope and understand my role and choices."
"Have a better understanding of illness and methods to deal with same. Also, alternative procedures to cope with situation."
"TRIPS helps me with some of the transportation to a doctor, e.g., - to the podiatrist - as a caregiver I do not have to accompany my husband to the podiatrist."
"Respite 7 days/year - this is great, but not enough time."
"To be a better person - I enjoy it, no burned out feeling, need to give more of myself. I just love being a caregiver. I would do it again."
"I struggled with a full time job, caregiving, life in general and appreciated the information from the Office of Aging, the kindness and caring from the staff. The words to help me get through many days lifted me to keep me going."
"The services have caused me (the caregiver) to look more toward the future."
"Enabled me to care for my sister at home for another year or so"
"Gave me information that was needed."
"As a caregiver for both parents, one with cancer and one with dementia, it was a long learning process. When it came to services, we had hospice and aides to help with both parents. Services help give some relief, because at times you feel very helpless."
"Helps me be more objective while still maintaining good relationship with the care receiver. I learned very good communication techniques through the caregiver resources/training program."
"My mother in law would not be alive today were it not for the help from the Office of the Aging. We were unaware of what was available and it has successfully enriched her life."
"It lets me breathe a little easier because a health aide is there a couple of times a week to help her - I only wish it was every day."
"More understanding how to navigate a system that is large and confusing, full of bureaucracy, incompetence and definitely some sleazy and uncaring people."
"Made it much easier to cope and deal with."
"It has enabled me to continue working."
Methodology and Limitations
The survey population focuses on individuals who participated in the New York State Caregiver Support Programs funded by Federal and State funds, including the Older Americans Act Title III E funds and state funded caregiver resources centers. According to the New York State Office for the Aging's (NYSOFA) Consolidated Area Agency Reporting System data, a total of 34,390 caregivers received caregiver support program services in State Fiscal Year 2006 (April 1, 2006 to March 31, 2007).
Survey Sampling Process
A multi-stage stratified random probability sampling methodology was developed to draw a representative sample from the statewide caseload of caregiver support program participants. The first stage involves grouping Area Agencies on Aging (AAAs) into three strata: urban, rural and suburban strata. Then a sample of 50 percent of AAAs was randomly selected in the second stage to represent the 59 AAAs in the State. In stage three, a sample of caregivers within each sampled AAA was randomly selected to represent the total caregiver support program caregiver caseload at the respective AAA.Area Agency Sample
Before selecting the AAA samples, the 59 AAAs were first grouped into urban, suburban, and rural strata based on the NYSOFA's classification using the U. S. Census' population density data7 for Planning and Service Areas (typically counties or county groups). The purpose of stratifying AAAs into urban, suburban, and rural strata is to ensure area differences in availability and accessibility of family caregiver support programs and formal services were properly considered in drawing the caregiver samples. The 59 AAAs are stratified as follows:
- Stratum 1: 7 Urban AAAs (Albany, Erie, Monroe, New York City, Onondaga, Schenectady and Westchester)
- Stratum 2: 13 Suburban AAAs (Broome, Chemung, Dutchess, Montgomery, Nassau, Niagara, Oneida, Orange, Putnam, Rockland, Saratoga, Suffolk, Wayne)
- Stratum 3: 39 Rural AAAs (Allegany, Cattaraugus, Cayuga, Chautauqua, Chenango, Clinton, Columbus, Cortland, Delaware, Essex, Franklin, Fulton, Genesee, Greene, Herkimer, Jefferson, Lewis, Livingston, Madison, Ontario, Orleans, Oswego, Otsego, Rensselaer, Schoharie, Schuyler, Seneca, Seneca Nation, St. Lawrence, St. Regis, Steuben, Sullivan, Tioga, Tompkins, Ulster, Warren/Hamilton, Washington, Wyoming, Yates)
Half of the AAAs were then randomly selected from each of the three strata. This resulted in a sample frame as follows:
- Stratum 1: 4 of 7 Urban AAAs were selected
- Stratum 2: 6 of 13 Suburban AAAs were selected
- Stratum 3: 20 of 39 Rural AAAs were selected
These 30 selected area agencies on aging were then contacted by phone to verify with caregiver support program coordinators that the number of caregivers served met study requirements.Caregiver Sample Size
As mentioned earlier, NYSOFA Consolidated Area Agency Reporting System data showed that 34,390 caregivers received caregiver support services in 2007. Based on 35 percent response rate from the Office's previous mail survey experiences, the State Office calculated that a sample of 1,106 caregivers would give the Office the desired confidence interval of 95 percent and confidence level of 5 percent. In order to have equal representation from urban, suburban and rural strata, NYSOFA drew 400 caregiver samples from each stratum to yield 1,200, which exceeds the minimum of 1,106 caregivers for the total sample. The sample AAAs within each stratum then selected the number of caregivers in accordance with the proportion of their caseloads to the total caseload in the respective stratum. Each caregiver support program coordinator of the 30 selected area agencies was asked to select the sample based on the instructions given by NYSOFA. Of the 1,200 sample, 91 individuals' names were taken off from the sample list because they either moved to a different address, or not involved in caregiving directly. This resulted in a final sample of 1,109 individuals.Caregiver Sample Selection Criteria
The Caregiver Support Program coordinators were instructed to select survey caregivers meeting the following criteria:
- Must be at least 18 years of age;
- Must be a family member, friend, or neighbor who helps care for an older individual (aged 60 or more) who lives at home; and
- Must be receiving caregiver support program services that include information, assistance, respite care, education, training or support group, and supplemental services (e.g., home delivered meals, transportation, personal emergency system) during the State Fiscal Year 2007.
The program coordinator was given a random number and instructed to go to every fifth caregiver on the list until the specified number of caregiver cases was reached.
Informed Consent and Sample Verification
Letters of informed consent were mailed out by AAA Directors to selected sample caregivers in advance so that they were informed about the upcoming survey and informal consent was obtained. The informed consent letter also provided caregivers an opportunity to confirm the legitimacy of the survey and to opt out of participating in the survey. In cases that caregivers had moved to a different address, the informed consent letter was returned to the AAAs. The AAAs then took off those caregivers who had moved or opted not to participate in the survey from the sample list and followed the instructions provided by the State Office to select substitutes for the sample. Through this sample verification and cleaning process, the final sample size resulted in 1,109. The AAAs then provided NYSOFA with caregiver’s names and addresses for the mail survey.
The Caregiver Survey was administered by the Finger Lakes Geriatric Education Center (FLGEC) in May, 2008 and followed by a thank you/reminder postcard in mid-May. A second mailing of the survey was mailed during mid-June, 2008. It received tremendous statewide support from AAAs and caregiver support program participants. One hundred percent of sampled New York AAAs participated in the survey, and the response rate from caregiver support program participants was 55 percent. Both the support of AAAs and responses of program participants exceeded the expectations for a mail survey.
The present study has several limitations that should be addressed in future research efforts. Of particular importance is that the findings of this survey are limited to caregivers who are either currently receiving formal services from the NYSOFA/AAA's caregiver support programs and services or have received services during the last year. The characteristics explored in this study can only be generalized to caregivers in the NYSOFA/AAA caregiver support programs and services, which may be different from the general caregiver population. Past literature indicates that most caregivers are reluctant to seek the support of a formal services system for fear of losing independence and control, and a majority of them also are unaware of the availability of services. As suggested by Montgomery and Kosloski (2000), caregivers often waited until crisis arose or they were overwhelmed by the demand of caregiving, before seeking help from a formal services system. Therefore, caregivers in the formal system tend to care for those loved ones who have significant needs. The results of this survey provide evidence that supports this assertion.
The survey design also suffers a few limitations in spite of the fact that considerable efforts were made in the design of the instrument and the administration of the survey. One key limitation is the method of data collection. A mail survey approach was adopted in order to give caregivers the flexibility and convenience of when to respond to the survey. However, this approach may lead to low response rates from individuals with lower literacy levels. In addition, this questionnaire was in English, and thus may have excluded non-English speaking caregivers, including immigrant populations. Furthermore, this survey focused on caregivers of older adults, without considering caregivers of young, disabled individuals and other caregiver populations, such as gay and lesbian caregivers. Future research should consider studying caregivers of young disabled individuals, and gay and lesbian individuals. Additionally, the questionnaire should be translated into languages of the caregivers so that more caregivers can participate in the survey to provide a more comprehensive picture of caregiving issues and assessment of caregiver support services in New York.
In addition, the survey findings rely upon honest responses and good recall of the survey respondents. Thus, faulty recall on how many hours of care, on average, caregivers usually provide to their care receiver in a week would affect the results. Furthermore, this survey suffers from a lack of questions in certain areas. For example, questions such as why caregivers seek help from the formal system and the employment status of caregivers were not asked in this study. These questions may be helpful to understand how to outreach to those who are not in the current services system and the impact of caregiving on employment. Future studies should consider including questions in these areas in order to obtain a more comprehensive picture of caregiver situations, better understanding of what motivates caregivers to seek help, and techniques to improve accessibility and delivery of caregiver support services.
7The U.S. Bureau defines urban areas as territory, population, and housing units as densely-settled areas with a Census population of at least 50,000 or urban clusters (densely-settled areas with a Census population of 2,500 to 49,999). Rural areas are defined as territory, population, and housing units outside of urbanized areas with fewer than 2,500 people or areas where people live in open country.