Most family caregivers find out about the help available to them long after they needed it. The programs below exist in every state, cost little or nothing, and are consistently underused, usually because nobody tells families they are there.
The National Family Caregiver Support Program
Created under the Older Americans Act, the National Family Caregiver Support Program (NFCSP) funds five kinds of help through your local Area Agency on Aging:
- Information about available services
- Help getting access to those services
- Individual counseling, support groups, and caregiver training
- Respite care, temporary relief so the caregiver can rest, work, or handle their own appointments
- Supplemental services such as home modifications, incontinence supplies, or emergency response systems, on a limited basis
Eligibility is broad. It generally covers family caregivers of adults 60 and over, caregivers of people of any age with Alzheimer’s or a related condition, and grandparents or older relatives raising children. You do not have to be related by blood, and in most states there is no income test, though income may affect priority when demand is high.
Respite care: the one most families skip
Respite is temporary care that lets the regular caregiver step away. It can be a few hours at home, a day at an adult day center, or a short stay in a facility.
Two things worth knowing. First, respite funding is usually capped per year, so ask what the cap is before you plan around it. Second, waiting until you are exhausted to ask is the common mistake, arrangements take time to set up, and the programs work far better when they are already in place.
Where respite comes from
- Your Area Agency on Aging, through NFCSP funds
- Medicaid home and community-based services waivers, if the person receiving care qualifies
- The VA, for caregivers of eligible veterans
- Local Alzheimer’s Association chapters and faith-based volunteer programs
- Adult day programs, which can be paid privately and are often cheaper per hour than in-home aides
Getting paid as a family caregiver
It is possible in some circumstances, and the route depends on the care recipient’s coverage, not the caregiver’s:
- Medicaid self-directed care. Many states let a Medicaid-eligible person hire and pay a family caregiver through a waiver or consumer-directed program. Spouses are excluded in some states and allowed in others. Your AAA or state Medicaid office can tell you which applies.
- VA programs. The Program of Comprehensive Assistance for Family Caregivers provides a stipend to approved caregivers of eligible veterans. Veteran-Directed Care is another route.
- Long-term care insurance. Some policies pay family caregivers; most do not. Read the policy language rather than assuming.
- Private family agreements. A written personal care agreement between family members, with documented hours and pay. Worth doing properly if Medicaid eligibility may come up later, because undocumented transfers can create penalties.
Training and counseling
Hands-on technique matters more than most families expect. How you help someone stand up, how you position a bed, and how you handle resistance during bathing all have methods that can be taught in an afternoon and prevent injuries to both people.
- AAA caregiver training workshops, often free
- Hospital-based classes before a discharge, ask the discharge planner directly
- Home health agency visits, which usually include teaching the family while a nurse or therapist is in the home
- Condition-specific programs, particularly through Alzheimer’s and Parkinson’s organizations
Support lines worth saving
- Eldercare Locator: 1-800-677-1116, the national entry point for local services
- Alzheimer’s Association Helpline: 1-800-272-3900, staffed around the clock
- VA Caregiver Support Line: 1-855-260-3274
- 988: the Suicide and Crisis Lifeline, for the caregiver, not only the person being cared for
Equipment that reduces the physical load
A large share of caregiver injuries come from transfers and bathing. Equipment does not replace help, but it changes how hard the work is:
- Transfer boards and poles for moving between bed, chair, and car
- Bed rails and bed assist handles so the person can reposition without being lifted
- Shower chairs and handheld shower heads, which turn a two-person job into a one-person job
- Dressing aids that preserve independence and cut the time each morning takes
Program names and eligibility rules vary by state and change over time. Confirm with your Area Agency on Aging before relying on any of the above.