This survey focused on caregivers of older adults who use NYSOFA/AAA caregiver support programs, which is different from most national surveys3 of the general population of caregivers. The typical caregiver in the New York aging services system is a 64-year-old female, who has either high school or some college education, and spends more than 40 hours a week providing care to her mother. The following descriptions provide gender, age, ethnicity, marital status, education, and household income characteristics of caregivers who responded to the survey.
The majority (79 percent) of those providing care to older family members and friends are female.
Age of Caregiver
Caregivers' ages range from 32 to 94, with an average age of 64.
- 1 percent of the caregivers are under age 40;
- 10 percent are between ages 40 and 49; and
- 29 percent are between ages 50 and 59.
The majority (60 percent) of the caregivers are older adults themselves.
- 18 percent are between 60 and 64;
- 19 percent are between 65 and 74; and
- 23 percent are aged 75 or older.
Race and Ethnicity
In terms of ethnicity, the majority (93 percent) of caregivers are non-Hispanic and 7 percent are Hispanic.
- 87 percent are white/Caucasian;
- 7 percent are black/African Americans;
- 2 percent are American Indians;
- 2 percent are Asian Americans; and
- 2 percent are mixed race or ethnicity.
- The majority (66 percent) of caregivers are married;
- 9 percent are widowed;
- 16 percent are either divorced or separated; and
- 9 percent are single - never married.
Most of the caregivers have a high school degree or beyond:
- 30 percent have less than high school or graduated high school;
- 29 percent have some college education, but without a degree;
- 15 percent are college graduates; and
- 26 percent have advanced or professional degrees.
Of those caregivers who reported their income (80 percent of survey respondents):
- 19 percent of caregivers reported that their household incomes did not exceed $20,000;
- 46 percent reported household income between $20,001 and $50,000; and
- 35 percent reported household income of $50,001 or more.
- Caregivers who live alone tend to have lower incomes:
- 35 percent reported having household incomes less than $20,000 a year;
- 45 percent have household income between $20,001 and $50,000; and
- 20 percent have household income of $50,001 or more.
Care Receiver Characteristics
While there are a considerable number of national caregiver surveys that have provided detailed information on caregivers' characteristics, information on care receivers' characteristics are rarely included. Nonetheless, one characteristic that is well documented in the national studies is that older dependent care receivers are more likely to be women (National Alliance for Caregiving and AARP, 2004; Walker, 1995).
Gender and Age of Care Receivers
Similar to most of the national caregiver survey data, care receivers with caregivers served by New York caregiver support programs and services are more likely to be female (64 percent) than male (36 percent). A majority (85 percent) of the care receivers are aged 75 or older. The average age of care receivers is 82.3, and the oldest care receiver is aged 102.
- 4 percent of care receivers are below the age of 65;
- 11 percent are between ages 65 and 74;
- 42 percent are between ages 75 and 84; and
- 43 percent are aged 85 or older.
Those older care receivers, aged 85 or older, are a very vulnerable population. With advanced age, they are more likely to have health problems and be limited in daily activities of living. They also have a higher probability of entering into a nursing home due to their health status and condition.
Care Receivers' Health Conditions
Caregivers using New York aging services provide care to older adults with significant health needs:
- 94 percent of the caregivers reported that their care receivers had at least one health problem;
- The most prevalent health condition of care receivers in this study was Alzheimer's disease or other dementia: 75 percent of the caregivers reported that their care receivers had been told by a medical doctor that they had this condition;
- The second most prevalent health condition was high blood pressure: 73 percent of caregivers reported that their care receivers had been diagnosed with this condition; and
- Other common health conditions include eye or vision problems, arthritis, depression or anxiety, high cholesterol, hearing problems, and heart disease.
Functional Status of Care Receivers
Findings from this survey show that care receivers cared for by caregivers being served by NYSOFA/AAA services and programs are frail and have many functional limitations:
- A majority (85 percent) of caregivers also reported that their care receivers have at least one functional impairment, such as walking, getting around inside the home, dressing, taking a bath or shower, and eating;
- Of those care receivers who have functional limitations, 79 percent of them have three or more activities of daily living limitations as reported by the caregivers; and
- The top three prevalent functional limitations are: taking a bath or shower (75 percent), walking (74 percent), and dressing (68 percent). Other functional limitations include: using the toilet (56 percent), getting in or out of a bed or chair (63 percent), getting around inside the home (61 percent) and eating (45 percent).
Relationship Between Caregivers and Care Receivers
The person most likely to be providing care to an older person is a daughter (48 percent), followed by a wife (23 percent), a husband (10 percent), and a son (10 percent). Other relatives, such as sisters and brothers, comprise 2 percent, and nieces, nephews, or grandchildren, comprise 5 percent of the caregivers. Older individuals also receive care from friends or neighbors (2 percent) and domestic partners (1 percent). The predominance of daughters and wives in caregiver roles are consistent with national survey data (National Alliance for Caregiving and AARP, 2004; Stone, et al., 1987).
A significant number of the caregivers surveyed live with their care receivers:
- 54 percent live together with their care receivers;
- Another 24 percent of care receivers live alone; and
- 22 percent have other living arrangements.
Caregivers who live with their care receivers tend to be primary caregivers:
- 92 percent of them reported that they provide at least half of the care to their care receivers;
- The remainder of help is usually supplemented by other caregivers and/or formal services.
Role of Caregivers
The majority of caregivers are primary caregivers:
- 75 percent provided all or nearly all care to the care receiver;
- 9 percent provided about half of the care; and
- Only 16 percent provided less than half of the care.
Years of Caregiving
The duration of caregiving ranged from less than a year to over 20 years and, on average, caregivers spent 6.2 years providing care to care receivers. The length of time caregivers provided care was as follows:
- 50 percent of the caregivers provided assistance from less than one to four years;
- 30 percent provided care for five to nine years;
- 14 percent provided care for 10 to 19 years; and
- 5 percent provided care for 20 years or longer.
Amount and Types of Care Provided to the Care Receiver
Amount of Care Provided
Caregivers in New York's aging services network system are providing significant amounts of care, higher than the amount of care reported by caregivers in national studies. For example, caregivers served in New York caregiver support programs report spending an average of 62.6 hours a week providing care5. This is considerably higher than the national average of 21 hours estimated in a recent AARP report (2008), which includes caregivers of all ages and all disabilities. This noteworthy difference in the amount of care provided by caregivers in this study is likely due to differences between this survey of caregivers of older adults, contrasted to most national surveys of caregivers, which include caregivers of various ages and care receivers of all levels of disability. Caregivers in this study are exclusively caregivers of older adults, and most of the care receivers have serious health problems and significant functional limitations, leading to a need for more supportive care.
Overall, the amount of caregiving hours that caregivers provided ranged from less than 10 to as much as around-the-clock care, or care provided 24 hours a day, 7 days a week. The survey findings show that:
- 17 percent of caregivers provided less than 10 hours a week of care;
- 33 percent provided 10 to 39 hours of care;
- 15 percent provided 40 to 79 hours of care;
- 6 percent provided 80 to 99 hours of care; and
- 29 percent provided more than 100 hours of care - close to around-the-clock care to their loved ones.
Of those caregivers reporting that their care receivers have Alzheimer's disease or other dementia, 46 percent reported that their care receivers cannot be left alone and that they provided an average of 10.3 hours of care per day. That amount of care equates to more than a full-time job.
Caregivers who live with their care receivers also reported that they provide considerably more care than caregivers who do not live with their care receivers. For instance, caregivers reported that they provided an average 90.4 hours per week of help to their care receivers, as compared to an average of 29.9 hours of care per week by non-co-resident caregivers.6 The heavy involvement of caregivers who reside with the care receivers may be attributable to the increased likelihood that their care receivers are more likely to need around-the-clock care.
Types of Care Provided
While caregivers supplement their care with formal services such as home care, case management, home delivered meals, and adult day care services from NYSOFA/AAA, they continue to perform numerous activities to assist their loved ones to live at home in the community. The care and assistance that caregivers provided ranged from 24 hours a day care or supervision to assisting in specific tasks, such as:
- Transportation, including going to shopping or to the doctor's office (96 percent);
- Financial management, including keeping track of bills, checks or other financial matters (91 percent); and
- Arranging for care or services (86 percent).
Other assistance includes: housekeeping, such as preparing meals, doing laundry and cleaning the house (86 percent); arranging for home repair (82 percent); helping with medical needs, such as assisting in taking medicine or changing bandages (79 percent); performing home repair (77 percent); personal care, such as assisting in dressing, bathing, getting to the bathroom, and eating (68 percent); and paying for services (68 percent).
Caregivers in New York caregiver support programs tend to have a heavy care load. For example:
- 36 percent of the caregivers reported that their care receivers cannot be left alone at home; and
- 42 percent reported that their care receivers can only be left alone for short periods of time, but need to be checked in person several times a day.
In addition, 73 percent of those caregivers whose care receivers cannot be left alone reported that they are responsible for 24 hours a day care or supervision.
Caregiving Rewards and Burdens
Although caregiving can be stressful, it also can provide positive benefits and rewards to caregivers. In fact, many survey respondents reported positive emotional rewards. Caregivers surveyed reported that at least sometimes they feel caregiving gives them a sense of:
- Helping the care receiver (99 percent);
- Satisfaction (92 percent);
- Helping family (90 percent);
- Accomplishment (90 percent);
- Being appreciated (87 percent); and
- Have companionship (67 percent).
There also may be some negative consequences to caregiving, including financial, emotional, and physical strain for caregivers. Caregivers indicated that they at least sometimes feel the following burdens:
- Emotional strain (90 percent);
- Not having enough time for self (86 percent);
- Causing physical stress (77 percent);
- Conflicts with social life (74 percent);
- Affecting health (74 percent);
- Not having enough time for family (72 percent);
- Interference with work (59 percent); and
- Financial burden (53 percent).
Service Satisfaction and Outcomes
Caregiver Support Services Utilization and Satisfaction
When asked about where caregivers first heard about family caregiver support programs in the aging services network, the top three sources of information were:
- From family or friends (22 percent);
- The state (NYSOFA) or local office for the aging (AAA) (19 percent); and
- A case manager or a social worker (14 percent).
Other sources of information include: a community organization (e.g., senior center, Alzheimer's Association, caregiver support group, Veterans Hospital, United Way Hotline, Senior Newsletters, and website), a physician or hospitals, TV/radio/newspaper, and other media.
The top three caregiver support services caregivers reported that they received are:
- Information and assistance (72 percent);
- Respite care (47 percent); and
- Caregiver counseling, training or education (43 percent).
When asked about which of the caregiver services was the most helpful, caregivers reported that information and assistance was most helpful (42 percent), followed by caregiver training or education (25 percent), respite care (21 percent), and supplemental services (12 percent). It is worth noting that information and assistance is a key function of NYSOFA/AAAs in assisting older adults and caregivers in gaining access to aging services programs. This service also helps older adults and caregivers identify and gain access to services in their communities.
When asked about how they would rate the overall quality of services they received,
- 63 percent of the survey respondents rated the services as excellent or very good;
- 24 percent rated the services as good; and
- 14 percent rated the services as fair or poor.
Eighty-six percent of the caregivers responding to this survey would recommend caregiver services to a friend.
Care Receiver Support Services Utilization and Satisfaction
The top three home and community-based services that dependent older adults received are: information about services (44 percent), home care (40 percent), and case management (31 percent).
When asked about how caregivers rate the overall quality of the care receiver services:
- 64 percent of the survey respondents rated the services as excellent or very good;
- 27 percent rated the services as good; and
- 12 percent rated the services as fair or poor.
Eighty-four percent of the caregivers would recommend the care receiver services to a friend.
Benefits of Caregiver and Care Receiver Services
Caregivers reported that the services they received assisted them in providing care for care receivers in many ways. For example:
- 73 percent stated the services resulted in benefits to care receivers;
- 59 percent suggested that the services enabled them to provide care longer; and
- 56 percent stated that the services helped them be more confident about caregiving.
Other benefits from the services include: helped caregivers better understand how to get services, improved caregivers' knowledge about care receivers' illness, helped them feel less stress, gave them more personal time, and assisted them in receiving other benefits.
The mission of NYSOFA/AAAs is to assist older adults to live as independently as possible in their home in the community for as long as possible. Survey responses demonstrated that the services provided to caregivers and care receivers help achieve this goal.
When caregivers were asked about whether care receivers would continue to live in the same home if caregiver and care receiver services had not been provided, only 48 percent of the survey respondents said that the care receivers would be able to stay in their current home if the services had not been provided, while 52 percent reported that their care receivers would not be able to continue to live in their homes if NYSOFA/AAA services had not been provided.
Of the 52 percent of caregivers who reported that their care receivers would not be able to continue living in their same home without aging network services, 50 percent of this subgroup reported that the care receiver would live in a nursing home if the services had not been provided; 24 percent reported that the care receiver would live in an assisted living facility; 11 percent reported that the care receiver would move in with the caregiver; 7 percent reported that the care receiver might have died without services; 4 percent reported that the care receiver would live in the home of another family member or friend; and 4 percent reported that the care receiver might be in a hospital, rehabilitation center or have around-the-clock help.
Projecting the survey findings to be applicable to care receivers of the total surveyed caregivers, the potential outcomes for care receivers if aging network services had not been provided include:
- Would live in a nursing home (26 percent);
- Would live in an assisted living facility (12 percent);
- Would move in with the caregiver (6 percent); and
- Might have passed away (4 percent).
Other possible outcomes of care receivers if aging network services had not been provided include: might live in the home of another family member or a friend (2 percent); might enter into a hospital or a rehab center, or might have around-the-clock help (2 percent).
Impacts of Services on Caregivers' Lives
Many caregiver survey respondents provided anecdotal statements about how caregiver support programs and services affected their lives. They commented on how the services helped to reduce their burdens, relieve stress, and enable the care receivers to remain at home. A frequently used term was that the service was a "godsend" The top five themes were:
- Less isolation and increased emotional support from others;
- Experiencing less stress, learning how to cope better and having an easier life;
- Feeling more free, having more time to work, do chores, and take care of oneself and their family;
- Having a better understanding of the caregiver role and the care receiver's condition; and
- Having a better understanding of how to provide care and link up to other services.
Additional statements made by caregivers about the impacts of services are included in Appendix B, "Caregivers Comments: Impacts of Services on Caregivers' Lives."
Additional Help and Information that Would Be Valuable
While the majority of caregivers rated the services they received as either excellent or very good and are likely to recommend those services to a friend, they also indicated that they would like to have additional help. The survey asked respondents what additional or new kinds of services or help would be valuable to them. The top two areas indicated by caregivers are: tax credits or tax breaks (71 percent) and respite care (63 percent).
- Tax credits or tax breaks: Caregiver research literature reported that caregivers often help pay for health care, medication, and long term care services, in addition to covering the costs of food, home maintenance, and transportation (Evercare, 2007). Close to three quarters of caregivers who responded to the survey identified tax credits or tax breaks as additional help they would like to obtain, which indicates that caregivers are in need of financial assistance to address the cost burdens they shoulder, in addition to the emotional and time costs of their caregiving responsibilities.
- Respite care: Another key area for which caregivers would like additional help is respite care. Respite is a service that provides temporary relief to caregivers so they have time to attend to their family's needs, participate in a support group, attend a class to learn caregiving skills, or simply have time for themselves. Past research suggests that respite care can relieve burdens of caregiving, prevent "burnout", and enable families to continue to care for loved ones.
Other services that caregivers identified as being valuable to them include help with: financial assistance to pay for services, housekeeping, transportation, personal care, adult day services, meal preparation, getting other family members involved, and shopping.
In terms of additional or new kinds of information that would be valuable to caregivers, the top two types of information identified in the survey are: information/help in working with formal agencies (88 percent) and information about changes in laws (87 percent).
- Information about how to work with formal agencies: Because caregivers' responsibilities expand far beyond carrying out daily living tasks and often include identifying, coordinating and arranging for home and community-based long term care for their loved ones, they need information on how to navigate the complex health and long term care system and need unbiased and accurate information on available long term care services and supports within their community. The NY Connects: Choices for Long Term Care program can address this need as it is designed to help individuals identify and access appropriate levels and types of services. However, there is a need for more public education and marketing of NY Connects in order for caregivers to become more aware of its availability.
- Information about changes in laws: Caregivers often have law-related concerns about older adults in their care, including legal issues surrounding long-term care, surrogate decision-making, individual rights, guardianship, housing, social security, elder abuse, Medicare, Medicaid, and other public benefit programs. In addition, caregivers also need to be aware of certain rights they are entitled to. For example, under the federal Family Medical Leave Act and other state provisions, they are allowed to take a leave to care for their loved ones without losing their jobs. Knowing what laws have been changed and how the changes may affect them can ease their stress and help them to care for their loved ones longer.
Other additional information assistance caregivers suggested include: having a centralized caregiver helpline, help in understanding how to pay for and select a nursing home, counseling services, how to care for people with disabilities, information about health and long term care insurance, and housing.
How Services Could Be Improved
While the majority of the caregivers responding to the survey are satisfied with the services they receive, they also see opportunities for improvement. According to caregivers, the top five areas for improvement are as follows:
- Increasing the amount of current services they receive (79 percent);
- Providing services in a less complicated manner, e.g., less bureaucracy and less paper work (78 percent);
- Providing services in a more timely manner, including starting services sooner, providing services when needed, and shorter waiting period (73 percent);
- Providing services in a more consistent manner, e.g., having the same worker each time (63 percent); and
- Easier to access services (62 percent).
Other aspects of service that caregivers think could be improved include: providing services in a more reliable manner (e.g., workers come as scheduled), having more competent workers (better skills and professional demeanor), having more personable workers (friendly and respectful), and providing more culturally diverse services (e.g., having more bilingual staff and ethnic-sensitive services). These suggestions provide valuable information to inform policy makers and program administrators on how to improve services; however, additional information is needed in order to specifically identify improvement opportunities for each of the services and develop targeted strategies to enhance service delivery.
3 Most of the national studies are based on the general population of caregivers who care for individuals of all ages and all disabilities, which are different from this survey of caregivers who care for older adults with serious health conditions and functional disabilities.
4Household income includes caregiver's wages, social security, retirement income, public assistance, and income of everyone who lives with the caregiver.
5 The finding of New York caregiver support program participants' greater involvement with caregiving tasks than the national average is corroborated by another study of caregivers of older adults served through California Caregiver Resource Centers, which indicated caregivers in those Centers devoted an average of 85.4 hours a week of care to their care receivers (Family Caregiver Alliance, 2008).
6 The survey questionnaire did not ask caregivers the amount of time they spent on each specific task. Thus, the amount of time reported by caregivers may include a mix of various types of care including hands-on care, housework, and time spent on supervision.