Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part eight of an eight part series.
If you are starting to think that optimal caregiving at home is more than you can manage on your own, you could be right.
The going is, well, going to get rough. Here is who to reach out to.
With a Little Help
For the millions of family caregivers of people who are living with Alzheimer’s, there comes a time when love, dedication, and basic skills can no longer match their loved one’s needs.
Perhaps his or her schedule doesn’t have the flexibility to incorporate the many hours of care required every day of every week. Perhaps greater expertise is needed. At this juncture, many caregivers turn to home care providers to fill the gaps.
“Family caregivers typically contact an agency because of caregiver burnout or scheduling difficulties,” says Lily Sarafan, president and COO of Home Care Assistance (HCA), which provides non-medical in-home care to seniors across the United States and Canada. “It’s a very physically and emotionally demanding job, and they shouldn’t feel guilty about seeking outside help.”
When you think about optimal caregiving, it’s important to bear in mind that it’s about more that the burden or the cost. Start thinking about it as a paradigm shift, advises Sarafan. The goal is to help your loved one thrive in the place they want to be the most — at home.
The greatest advantage of home health care for anyone with dementia is familiarity of surroundings. In a world already threatened by confusion, the disruption of a move can be unsettling.
Non-medical home care services — whether obtained through an agency or independently — help with activities of daily living such as dressing, bathing, or toileting. Or, they might provide a loved one who is still somewhat independent assistance with activities such as meal preparation, housework, shopping or medication management.
The Opposite of Giving Up
Most people aren’t trained as nurses, or social workers, or dementia experts, and as the disease progresses, they find themselves under increasing stress.
Many caregivers “think there’s something wrong because they can’t manage it all themselves,” Sarafan says. “But they need to know they can be a better daughter, or son, or spouse, or family member, or friend when they’re not exhausted and overwhelmed. That way they can spend more quality time with their loved one.”
Family caregivers need the most help with personal care tasks, which is not typically covered by private health insurance programs or Medicare, according to the Caregiver Action Network. So unless your loved one purchased long-term care insurance prior to diagnosis, help will be limited by what you can afford.
Some “dual eligibles” (those who receive both Medicare and Medicaid) may qualify for limited state or federal assistance. However, most costs for non-skilled care will come out of pocket.
Medicare only pays for home health care services if the person requires intermittent skilled nursing care, physical, occupational or speech therapy, is considered homebound, and is under a physician’s care. Services must be ordered by a physician and are paid for by “episode” of care — up to 60 days maximum, depending on care required.
If your choices appear to be either becoming a full-time caregiver yourself or placing your loved one in a residential care facility, you might want to consider the third option of in-home care.
“It honors the patient’s wishes to stay at home through end of life and allows the caregiver to live his or her own life,” Sarafan explains.
Give Me a Break
Another option is respite care. This can give you a short-term break, while your loved one receives appropriate care in a safe and supervised environment. “Using respite services can support and strengthen your ability to be a caregiver,” according to the Alzheimer’s Association of America.
Family, friends, volunteers or paid caregivers can provide respite care at home, or you might opt for an adult day care or residential facility with professional staff. Day care encompasses planned activities like games, music or art and often includes meals. Some centers provide transportation services.
Residential facilities provide longer term respite care – a few days to a few weeks. It can allow you time for a much-needed vacation, to attend an out of town event or meeting, or to just enjoy some downtime to recharge your batteries. Cost varies, and is usually paid out of pocket.
When evaluating respite facilities, look for one with a memory care unit and whose staff are trained to care for those with Alzheimer’s and dementia, advises Carol Levine, Director of the United Hospital Fund’s Families and Health Care Project. “Make sure the people are really skilled in providing appropriate care.”
Certification and training are key when evaluating home care agencies, says Barbara Glickstein, a New York public health nurse who helps care for her 90-year-old mother. Ask whether caregivers receive continuing education, including behavioral health, and are familiar with handling a range of emotions and situations.
“Those with Alzheimer’s require a different level of care than those without the disease. It’s important that caregivers — whoever they are — understand these differences and how to relate to them,” she says.
6 Questions to Ask an Agency
First, make sure you’re dealing with a reputable organization, then ask:
- Who are their community and professional partners?
- Are caregivers licensed and is the agency Medicare certified? That means they meet minimum federal standards for patient care and management.
- Are their caregivers employees or contractors? Caregivers can almost never be contractors for an agency, says Sarafin, so if that’s their setup, it’s likely they’re cutting corners elsewhere, perhaps on training, support, or quality.
- Ask about caregiver training — is dementia-specific training provided? Caregivers should have this skill set as well as the emotional wherewithal to care for somne with Alzheimer’s.
- What are the agency’s professional processes – such as quality assurance, continuing education and customer satisfaction?
- Will your calls be answered 24/7? You need to know that if issues arise after hours or on the weekend, someone can respond.
Don’t base your decision on cost alone. An agency that’s a dollar an hour less than another may wind up costing more in the long run if you have to miss work because the caregiver doesn’t arrive or have backups in place in case of emergency.
Also make sure you understand exactly what services agency will and won’t provide according to state law. While families can provide any care for a family member, professionals must abide by state law.
And of course, get a list of references and find out how they conduct their screening and background checks.
“Be diligent and vigilant just like you would be with any other health care decision,” says Sarafan. Don’t get locked into a long-term contract, she advises. If you’re not happy with the provider you could be on the hook for thousands of dollars.
There are numerous community-based services and programs that can provide assistance with finding an agency or service, respite care, or just give you a needed break from caregiving duties.
- Medicare.gov – provides information about Medicare-certified agencies in your geographic area, including Home Health Compare, which allows you to compare the home health care agencies in your area. Call 800-MEDICARE for more information.
- Eldercare Locator can help you find the services you need in your area by calling 1-800-677-1116.
- National Association for Home Care and Hospice: 202-547-7424
- Visiting Nurse Associations of America: 617-737-3200
- National Adult Day Services Association, Inc.: 866-890-7357
- National Respite Coalition (NRC): 703-256-9578
- National Respite Locator Service: 800-473-1727, ext. 222
- Lotsa Helping Hands brings together caregivers and volunteers through online communities and help caregivers in neighborhoods worldwide.