Caring for the caregivers

Caring for someone living with Alzheimer’s or other forms of dementia is especially demanding. The caregiving needs for someone living with Alzheimer’s are extensive and increase over time – on average four to eight years following a diagnosis. Many family caregivers juggle competing priorities including work and other family responsibilities. These caregivers are stretched thin. Many are overwhelmed.  Most could use help.

This is why it’s so important for caregivers to make sure they also are taking care of themselves.

Elizabeth Edgerly is senior director of community programs and services, for the Alzheimer’s Association, and she recently spoke to BrainWise about caregiver burdens and caregiver support. She said there are 11 million Americans currently serving as caregivers for individuals with Alzheimer’s and other forms of dementia. She added that caregiving can take a toll.

According to Elizabeth, the Alzheimer’s Association 2024 Facts and Figures report highlights some of the key issues:

• Caregivers of individuals with Alzheimer’s and other forms of dementia report higher rates of chronic conditions including stroke, heart disease, diabetes, and cancer compared to caregivers of people without dementia or non-caregivers.
• The prevalence of depression is higher among caregivers of individuals with Alzheimer’s and other forms of dementia when compared to caregivers for people with other conditions.
• Nearly 75 percent of caregivers report they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver.
• Across the country, 59 percent of caregivers report high to very high emotional stress due to caregiving and 38 percent report high to very high physical stress due to caregiving.

Elizabeth noted that the Alzheimer’s Association website offers robust information about caregiving throughout the disease continuum, and that the organization offers a 24-7 Helpline (800.272.3900), staffed by clinicians that are available day and night to help family caregivers navigate disease-related challenges.

Two other great resources for caregivers are the National Alliance on Caregiving and the Family Caregiver Alliance.

How do caregiving needs change over time?

Alzheimer’s disease typically progresses slowly in three general stages: mild (early stage), moderate (middle stage), and severe (late stage).

Elizabeth said caregiving tasks become more intensive as the disease progresses.

In the early stage of Alzheimer’s disease, most people can function on their own and may continue to live independently. A person may still be able to drive and can participate in their favorite activities. However, they may need medication reminders or help with remembering appointments.

Middle-stage Alzheimer’s is usually the longest stage and can last for many years. Individuals in the middle stage can often still participate in conversations, activities and their daily care, like dressing, bathing and using the toilet. However, they will need additional support for these activities over time.

Late-stage Alzheimer’s disease is when people experience major declines in their ability to respond to their environment or carry on a conversation and will eventually be dependent upon others for all their care.

To what extent is self-care necessary for caregivers?

It’s essential that caregivers take care of themselves. As difficult as it may be, caregivers need to make their health and well-being an equal priority. Maintaining health can help one be a better caregiver.

To help caregivers balance competing priorities while maintaining their overall health and well-being, Elizabeth offered these tips:

• Find time for yourself. It’s normal to need a break from caregiving duties. No one can do it all by themselves. Consider taking advantage of respite care or help from family and friends to spend time doing something you enjoy.
• Build a support network. Organize friends and family who want to help provide care and support. Access local caregiver support groups or online communities such as ALZConnected to connect with other caregivers. If stress becomes overwhelming, seek professional help.
• Take care of yourself. Try to eat well, exercise and get plenty of rest. Maintaining a healthy lifestyle can help you be a better caregiver.
• Avoid caregiver burnout. Sustained caregiver stress can lead to caregiver burnout — a state of physical, emotional and mental exhaustion. Elizabeth noted that the Alzheimer’s Association offers tips to help caregivers identify and avoid caregiver burnout.
• Accept changes. Eventually, a loved one will need more intensive kinds of care. Research care options now so you are ready for the changes as they occur.
• Know you’re doing your best. It’s normal to lose patience or feel like your care may fall short sometimes. You’re doing the best you can. For support and encouragement, consider joining an online or in-person support group.

Said Elizabeth: “I tell family caregivers that no one needs to go through this disease alone. It’s important to reach out for help — to your family, your personal network, and other services in the community.”

What kind of support is available to family caregivers?

In 2024, the cost of caring for people with Alzheimer’s and other forms of dementia is projected to reach $360 billion. This figure does not include unpaid caregiving provided by family and friends, which is valued at an additional $346.5 billion. Medicare and Medicaid cover about 64 percent of the total health care and long-term payments.

In addition to Medicare and Medicaid, a person living with dementia may qualify for several public programs. These programs provide income support or long-term care services to eligible people. This includes Social Security Disability Income (SSDI) for workers younger than 65, Supplemental Security Income (SSI), veteran benefits, and tax deductions and credits.

The Compassionate Allowances program, offered through Social Security, also might be an option—this is a list of pre-identified conditions approved for SSDI. It can speed up the process of obtaining disability benefits.

States offer a variety of programs to support family caregivers, but these can vary widely depending on the state. For example, several states have implemented programs that provide compensation to family caregivers. Some states offer financial assistance for persons with Alzheimer’s/dementia paid for by the state’s “general fund.” Some of these programs are specifically for dementia (requiring a formal diagnosis) and others are intended for individuals with age-related care needs. Many of these programs are not entitlement programs and receive limited funding, serving a limited number of persons. Waiting lists are common. Each state program is different, some prioritize their waiting lists by severity of need and others simply based on one’s position in the waitlist.

Caregivers may also get help from community programs such as meal programs, adult day programs, transportation to doctor’s appointments, respite for caregivers, programs that provide home modifications and caregiver support groups. To find out about programs in your area, contact the local Area Agency on Aging (AAA).

According to Elizabeth, the Alzheimer’s Association and AARP Community Resource Finder connects caregivers to a variety of local resources by simply entering their zip code. The database includes listings for a wide range of services, including housing options, adult day care, home care, medical services, legal services and other community resources.

What is the best way to support a caregiver?

Providing help and support to caregivers can be easier than most people think. Even little acts can make a big difference. Elizabeth offered these suggestions:

• Educate yourself about Alzheimer’s disease – its symptoms, its progression and the common challenges facing caregivers. The more you know, the easier it will be to find ways to help.
• Make a standing appointment to give the caregiver a break. Spend time with the person with dementia and allow the caregiver a chance to run errands, go to their own doctor’s appointment, participate in a support group or engage in an activity that helps them recharge. Even one hour could make a big difference in providing the caregiver some relief.
• Check in with caregivers. Many caregivers of individuals with Alzheimer’s and other forms of dementia report feeling isolated or alone. So, start the conversation—a phone call to check in, sending a note, or stopping by for a visit can make a big difference in a caregiver’s day and help them feel supported.
• Ask for a list of errands that need to be run – pick up groceries, dry cleaning or even offer to shuttle kids to and from activities. It can be hard for a caregiver to find time to complete these simple tasks outside of the home that we often take for granted.
• Be specific and flexible. Open-ended offers of support (“Call me if you need anything” or “Let me know if I can help”) may be well-intended but are often dismissed. Be specific in your offer (“I’m going to the store, what do you need?”). Continue to let the caregiver know that you are there and ready to help.

This article has been factchecked. For more about that process, click here.