Caregiver statistics can be difficult to quantify, as A. Many informal caregivers work out of the kindness or obligation of the heart, on top of regular full time jobs, families and their own responsibilities, and B. Even “formal caregivers,” those paid to come into the home and help seniors with daily tasks, medications, mobility, etc., are not required to have prior training in the majority of the United States. (See infograph for training hours required by state.)
However, studies such as “Supporting Family Caregivers,” reported on in the American Journal of Nursing (AJN), show that training and resources are of tremendous benefit to both caregiver and caree. Not only because the person being cared for will theoretically be receiving more informed care, but greatly for the mental, emotional and physical well being of caregivers themselves.
“Most studies don’t organize or classify interventions according to caregivers’ tasks or the knowledge and skills they require, but this information is vital for planning and implementing interventions that will help them,” states the AJN report. “The concepts of mastery, preparedness, and competence have been considered as necessary components for effective decision making and problem solving by family caregivers… Recently investigators have suggested that family caregivers require both knowledge and skill to provide care and to reduce their own distress.”
The paper goes on to describe factors that contribute to caregiving demands, such as patient personality and type/stage of illness. And for the caregiver there are necessities like apt decision making, adaptability, comforting with hands-on care, being able to navigate the health system and sometimes having to perform complex medical tasks. “Caregivers who have these skills report lower levels of burden, stress and distress, which may enable them to provide care that improves outcomes.”
Yet often the task of informal caregiving comes on sudden and strong. A spouse, sibling, close friend or loved one may take ill and suddenly you’re a caregiver. If you’re reading this now, it means you already know there are MANY online resources to choose from, but that’s not always a good thing… Having to mine the plethora of health blogs, news stories, resource pages and social health shares can be overwhelming. Especially if life has been basically put into maintenance mode: work, family, caregiving and whatever semblance of social life is yet retained. Getting the info is crucial, however, as the more you know, the less you’re scrambling. Here’s a list we’ve compiled by specific ailments, geographical location, and other considerations that matter most to an individual’s particular situation.
Caregiving is an act of love and we thank and applaud you for coming as far as you have already!
- Area Agencies on Aging, established in 1973 by the Older Americans Act (OAA) provide information on services available to older adults and family caregivers, like adult day care, elder abuse prevention programs, financial assistance, nutrition and more. In this article you’ll learn about these services—including the invaluable Eldercare Locator—and more, as well as the National Association of Area Agencies on Aging’s listings of names and locations of caregiving services and resources by state.
- The Parentgiving.com site’s resource page includes links from disease specific organizations like the American Parkinson Disease Association and Alzeimer’s Association, to sites that help save money on medical bills and give great caregiving advice. Dementia specific sites such as the Ashby Memory Method lend wonderful ideas for improving quality of life for both patient and caregiver.
- Renata Gelman, RN BSN and clinical manager for Partners in Care put together this crucial and concise Home Safety Checklist For Loved Ones With Dementia.
- Treatment Diaries is a place where you or your loved one can anonymously connect with other caregivers or persons suffering from multiple chronic conditions: vent, share, build a pseudonymous community and find out what’s working for other caregivers and/or patients—or just enjoy a nice virtual scream. (Though you’re more likely to get tons of virtual hugs; it’s a fantastic fellowship!)
- If you are the adult child of an elderly parent providing the majority of their care, you may qualify for Potential Tax Relief for Caregivers. “It is important for all family caregivers to verify their eligibility and take advantage of these tax credits,” says Allen Hager, chairman and CEO of Right At Home, Inc, an international in-home care franchise. “As a provider of in-home senior care, we understand the financial implications of caring for your aging loved ones.”
- Palliative care and end of life care can be more than daunting. A new online resource, PREPARE, makes having these tough conversations much easier, guides you through the paperwork process, and simulates real world examples of intensive care situations. PREPARE is simple to navigate: with large text, voiceovers, videos and it’s written at a fifth grade level. Navigating this site is easy and intuitive!
- For adult children whose parent(s) are still healthy, but would benefit from on-call help and remote monitoring, consider Rest Assured, “A state-of-the-art web-based system allows you to dial up the level of elder care monitoring for safety and peace of mind.”
- When family members and close friends need help juggling the care of a loved one and their own lives, finding a quality home care provider is a great way to relieve burden and gain peace of mind. Here are Five Tips for Finding a Quality Home Care Provider by Shannon Martin, MSW, CMC and Alex Chamberlain.
- Are you a social media maven? Try and find a caregiver support group that fits your personality and goals on a favorite blog or on Facebook. WEGO Health is a free platform for health activists / thought leaders to post "educational resources and sharable interactive media." If you’re a tweeter, Twitter chats like #ElderCareChat, held every 1st and 3rd Wednesday of the month, are wonderful ways to get elder care input from around the world.
- The New York Times Health section came up with this list of websites and phone numbers relevant to “Caring for the Elderly.” From government resources to blogs, they cover a lot of ground and also welcome additions, subtractions and suggestions.