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EXECUTIVE SUMMARY OF THE 2002 STATEWIDE SURVEY ON CAREGIVING
March 2003
The purpose of this survey was to assess the demographics and needs of caregivers and to examine the effects of caregiving on caregivers and their families. In addition, EOA identified some key issues to be explored, such as quality of life of caregivers, current utilization of formal care services and perceived service needs, use of advance directives, extent of private LTC insurance coverage, support for a state-sponsored LTC insurance plan (called CarePlus), and support for new models of consumer-directed care. Caregiver needs were examined against the seven markers or stages of caregiving-from not identifying oneself as a caregiver, through recognition of the role and need for help, to the institutionalization and death of the elder. This framework, developed by Drs. Rhonda Montgomery and Karl Kosloski, makes conceptual sense, although its authors acknowledge that not every caregiver goes through each successive stage. In this study, service use/desires were analyzed within this framework. The definition of a caregiver in this study was a non-paid family caregiver who was providing care to the elderly 60 years old or older. "Family" was interpreted broadly, to include friends, neighbors, and volunteers, as long as the elder care was uncompensated.
The Statewide Survey on Caregiving was administered by using the mail-out survey. The questionnaire was designed based on the suggested key issues provided by the EOA. At the same time, various survey questionnaires on caregiving, which have already been utilized by different organizations or states, were examined to construct the questions. The questionnaire was written in English. The questionnaire was pre-tested, revised several times, and finalized with the consultation of the EOA staff. Initially, the expected sample size was 2,000 family caregivers statewide hoping that 40-50% of them would respond. However, concern was raised from the AAAs regarding the rights of family caregivers to privacy. Thus, the EOA decided not to request lists of caregivers from the AAAs. Rather, we solicited participants through local media and conference presentations. A total of 896 names were solicited statewide, and the surveys were mailed out. Although the response rate was 57% (513), only 50% (445) of the responses met the criteria for the study, i.e., they were currently helping a loved one age 60 or older but they were not receiving payment for care provided.
A majority of the respondents were female, and the average age was 60 years. Fifty-three percent of the respondents were of Japanese origin, followed by Caucasians at 20%. Two-thirds of the respondents were married, and about half of them were employed. Sixty percent of respondents lived with their care recipients. About two-thirds of the respondents were children of the care recipients, while spouses represented about 24%. Fifty-nine percent of the respondents had college or post-graduate degrees. Thus, the respondents in this study were highly educated.
The average duration of their caregiving period was 5 years, and the average duration of assistance a week was 46 hours. The five most common caregiving tasks were: 1) providing companionship, reassurance, and emotional support, 2) handling medical appointments and medications, 3) helping with housework, shopping, and meal preparation, 4) helping with transportation and walking, and 5) helping with the paperwork and bills, giving money, and paying expenses. Approximately 55% of the respondents provided personal care, helping elders with bathing, dressing, feeding, or getting to the bathroom, and 42% of the respondents were helping to change diapers and clean up when the person had an "accident." This means that a quite number of care recipients were frail and needy. As one might expect, the spouse tended to provide more high-level assistance, such as personal care, lifting, diaper change, than neighbors or friends. Similarly, respondents who lived with care recipients provided more high-level assistance than he respondents who did not live with their elders.
In general, a majority of the respondents seemed to be well adjusted in the situation and expressed the importance of the family relationships to their well-being. Many of them felt that the family gave them some strength, and most had supportive friends. Only 27% of the respondents said they felt depressed. Interestingly, the respondents who lived with their care recipients were more likely to report that they were depressed/not emotionally well, not happy with their lives, and not feeling financial stability. Similarly, the respondents who did not have additional help were more likely than those who were to report that they were depressed, not physically well, not getting support from their families, and not financially stable. Although about half of the caregivers were providing labor-intensive care for their elders, many of them felt confident in providing care this care. Two-third of the respondents felt they were coping well with the situation, and only about one-fourth of them indicated some negative effects on their health and some strain in the relationship with family and/or social life.
Although there were various wishes and desires among the respondents, most of the respondents wanted more free time for themselves and to: 1) travel, 2) engage in hobbies/leisure activities, 3) socialize or spend more time with their family members and friends, and 4) relax or sleep more to take care of themselves.
About 33% of the respondents were providing care without any formal care services. The major reason given for not utilizing formal services was that they did not need outside help. They felt that they could handle the situation without any formal assistance. Among respondents who received some formal assistance, they used a combination or variety of services. The five most commonly used services were: 1) adult day care services, 2) personal care services, 3) transportation/Handivan, 4) home-delivered meals, and 5) homemaker services. Although adult day care/respite services are considered one of the most important services to relieve caregiver burden, about two-thirds of the respondents did not utilize adult day care/respite services. Commonly expressed reasons for not utilizing adult day care/respite services were: 1) the care recipient didn't want to go, and 2) the respondent or their family members did not need outside help. This indicated that there was some hesitancy in using the adult day care/respite services. About four-fifths of the respondents expressed that they needed some assistance or services. Although the needs of respondents in each marker or stage of caregiving differed slightly, the commonly expressed caregiver needs were for: 1) information, education, and training about caregiving, 2) health maintenance for the caregiver, such as an exercise program, 3) adult day care/respite services, 4) tax assistance (state tax deduction or credits), and 5) personal and family counseling, advice, mediation, and support groups. Models of consumer-directed care are being tested on the mainland and are gaining in popularity. Although there has been little publicity about these models locally, most caregivers indicated that they would be interested in receiving and managing cash to buy assistive services for their elders and themselves.
In regards to the preparedness for the end-of-life, about half of the respondents had legal documents such as wills, living trusts, advance directives, and power of attorney for themselves. For their care recipients, the preparedness was slightly higher. However, considering long-term care (LTC) insurance, two-thirds of the respondents had not purchased a plan, primarily citing concerns about cost. Caregivers most likely to have private LTC insurance were well educated Asian adults. About 51% of the respondents were not sure about supporting a state-sponsored LTC insurance, but 35 % of the respondents endorsed the idea and were willing to pay. The median amount respondents were willing to pay was $50 a month. Respondents also were supportive of the idea of tax credits for caregiving. Future Directions: Hawai'i is still in an early stage of developing a system of support for family caregivers. Although the study was not based on a representative sample of family caregivers, the results provided very useful information about caregivers, such as what they did and how they felt, in addition to their service needs. Based on the results of the survey, the EOA can focus on the development or strengthening of services that were identified as helpful for family caregivers. Click here for a copy of the final report, data, and survey instrument.
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