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Last year, FCA’s National Center on Caregiving responded to re-quests from all over the country from those needing help locating services for, and information about, caregiving.
Over 60% of these inquiries were directly from family caregivers. Others were from professionals looking to support their caregiving clients, or from academicians, reporters and researchers regarding legislation or caregiving needs and trends.
Many people contact FCA via the internet, with 55% e-mailing FCA with their questions. Another 42% of caregivers call FCA to talk about their situation and request assistance.
We know that caregivers are responsible for many tasks, caring for a loved being only one. They appreciate the opportunity to email questions to FCA whenever it suits their needs rather than only during business hours. “The response was quick, and you cared. Just knowing there is someone in cyberspace to talk to or ask questions is comforting,” one caregiver told us.
Almost 60% of family caregivers who contact FCA are looking for resources in their local or loved one’s area. 20% of caregivers are looking for financial or legal help, and another 12% are researching medical questions. Some typical inquiries include:
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How can I be paid to provide care to my loved one?
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How do I provide care from a distance?
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How do I find services for adults with disabilities?
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Are there support groups in my local area?
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How do I find respite, and get a break from caregiving?
FCA finds it is essential to continually review services we offer to assess their impact and efficacy, determine if they are meeting needs, and make changes when needed. In keeping with that goal, in November 2003 FCA began emailing a satisfaction survey to clients who used our caregiverhelp e-mail services.
Over a period of three months, FCA invited people who had emailed requests to FCA looking for caregiver information or services to participate in our study. Using an interactive online survey tool, respondents answered a series of questions including: whom they were helping; demographic informa-tion; how helpful our assistance was and many other topics.
Almost 60% of respondents were caregivers of someone 60 or older. Another 28% were caring for a loved one under age 60. 26% of respondents were researchers or health and service professionals. 59% of those who completed the survey were aged 35 – 54. An additional 26% were over age 55. More than four in five respondents were women (87% total).
We know it can be difficult for caregivers already juggling multiple competing demands to wade through layers of resources to finally find the service that they need. One caregiver said, “Advice needs to be more readily available instead of having to run around in circles to finally find an answer. . . . It takes a large amount of time. There is a lot of help out there for seniors, but most people get discouraged and give up before finding what they need.”
Some caregivers may struggle with the lack of services in local communities, or a lack of services for those with rare diseases. Where there is a lack of services for the care recipient or loved one, there is also generally a corresponding lack of services for the caregiver. One caregiver explained, . . .“There is a need for information for care providers of head-injured persons, especially for spouses of these people. Information about support groups for spouses would be helpful also.”
It is important to reach out to caregivers who, as a result of this situation, may be at risk of isolation and the corresponding health risks. Caregivers in this situation may find online support groups, such as FCA’s Link2Care, Huntington’s Disease, or our general online caregiver support groups to be particularly helpful. Online support groups allow caregivers to offer and get support and learn strategies in a caring community of other caregivers. You can find information about FCA’s online groups by clicking on “Groups”.
Of particular interest to us at FCA was if those whom we had assisted would recommend FCA’s caregiverhelp to others. We were heartened to learn that the vast majority of respondents indicated they would recommend our services. “I am so pleased with the caring manner with which I was treated when I contacted your office,” said one respondent. “And I was most pleased with the amount of and quality of material I was sent to give to my Mom. Thank you so much.”
Overall, we were happy with the results from our online survey. We will continue with our survey throughout the year, synthesize the results, and then see if we can make our assistance even better. In the meantime, if you or your loved ones are in need of assistance or as your needs change, please do not hesitate to contact us. We are only a phone call or e-mail away. Reach us at [email protected] or (800) 445-8106.
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