How to Cope With Alzheimer's Caregiver Burnout

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You watch your once mentally sharp loved one decline before your eyes. Their uncontrollable behaviors, mood swings, outbursts, confusion and memory loss are heartbreaking. The worry that a single lapse in supervision may result in your loved one wandering off, falling down or having some other accident is overwhelming.

Caring for a senior with Alzheimer’s disease (AD) or another type of dementia involves significant physical, mental, emotional and financial investments. Family caregivers often struggle to balance dementia care while working, nurturing relationships with their immediate family and friends, prioritizing self-care and coping with feelings of anticipatory grief. For a dementia caregiver, stress levels can soar very quickly. Without strong support systems in place, Alzheimer’s caregiver burnout can set in, jeopardizing the physical and mental health of caregivers and dementia patients alike.

Alzheimer’s Caregivers’ Stress Levels

Most family caregivers experience an increased amount of stress. However, multiple studies have confirmed that dementia caregivers endure higher levels of caregiver burden than non-dementia caregivers. A fact sheet jointly published by the Alzheimer’s Association and the Alzheimer’s Impact Movement reports that nearly 60 percent of dementia caregivers rate their emotional stress levels as high or very high.

The Caregiving in the U.S. 2015 report published by the AARP Public Policy Institute and the National Alliance for Caregiving (NAC) found that, “Those who provide care to someone with Alzheimer’s, dementia, or other mental confusion are often providing a wide variety of tasks for their care recipient, resulting in some difficulty with these tasks, emotional stress, and worsening health.”

Consistently high stress levels directly contribute to the development of caregiver burnout and negatively impact both physical and mental health. A meta-analysis of several studies on mental health disorders among Alzheimer’s caregivers found that the prevalence of depression was 34 percent and anxiety was 43.6 percent. When it comes to the physical effects of chronic stress, dementia caregivers are at a higher risk for neurological changes in brain structure, inflammation, heart disease, diabetes, cancer and autoimmune syndromes.

How to Beat Alzheimer’s Caregiver Burnout

A uniquely challenging aspect of being an Alzheimer’s caregiver is the fact that a dementia patient’s needs and behaviors can change dramatically without warning. Dementia caregivers must constantly adjust their care plans, expectations and strategies for providing quality care. If a caregiver is experiencing physical, mental and emotional exhaustion as a result of burnout, it’s more difficult to weather the ups and downs of fluctuating dementia behaviors and moods and provide even a basic level of compassionate, high quality care. The following steps will help you identify the early signs of Alzheimer’s caregiver burnout and act quickly to remedy it, benefiting both you and your care recipient.

Identify the Signs of Caregiver Burnout

The Maslach Burnout Inventory, a tool created to assess occupational burnout, defines this phenomenon as a psychological syndrome characterized by emotional exhaustion, depersonalization, cynicism, negativity, and decreased feelings of personal accomplishment. While many family caregivers do not immediately think of their responsibilities as a “job,” research shows that the average caregiver spends 23.7 hours per week providing care in 2020.

According to the Alzheimer’s Association, Alzheimer’s patients typically live four to eight years after diagnosis but can live up to 20 years. Since AD is a progressive neurodegenerative disease, dementia caregivers can expect their responsibilities and stress levels to steadily increase over time. Unfortunately, chronic, unmanaged stress is what begets Alzheimer’s caregiver burnout.

The best way to recognize and prevent burnout is for dementia caregivers to educate themselves on the signs and practice regular self-assessments. They can be subtle at first, but be sure to look for the following symptoms of Alzheimer’s caregiver burnout:

  • Fatigue
  • Changes in sleeping habits
  • Weight gain or weight loss
  • Feeling sad, hopeless, worried or overwhelmed
  • Mood swings (anger and irritability)
  • Loss of interest in hobbies
  • Physical symptoms of stress, such as headaches, body aches or digestive issues
  • New or increased use of alcohol or drugs

Dementia caregivers tend to be extremely busy and prioritize others’ needs over their own, so it is important to check in with yourself on a daily basis to see how you’re faring physically and mentally. Caregiver burnout can creep up on even the most experienced and resilient person. Practicing self-awareness and being honest with yourself about your feelings can ensure you catch the warning signs early on.

Overcome Caregiver Guilt

It’s true that family caregivers are often overloaded with responsibilities that prevent them from prioritizing self-care, but guilt is another factor that perpetuates this cycle of neglect. If a dementia caregiver manages to carve out time to attend their own doctor’s appointments, spend time with friends and family, or simply relax, they may feel guilt or shame for not directing their attention and resources to their care recipient. These emotions come from a caring place, yet they are undeserved and misguided.

The truth is that self-care is the only way to prevent and cure Alzheimer’s caregiver burnout. Setting aside time for yourself and delegating caregiving responsibilities to others is supposed to minimize stress levels. However, this backfires if you punish yourself for seeing to your own physical and emotional needs. It is challenging, but caregivers of all kinds must put an end to self-imposed guilt if they are to succeed in staying healthy while caring for their loved ones.

One of the most guilt-inducing situations for family caregivers is recognizing the need for additional help. Alzheimer’s caregivers in particular strive to meet all their loved ones’ needs personally, but as dementia progresses, this becomes more and more unrealistic. One primary caregiver cannot assist and supervise a dementia patient 24/7 indefinitely.

In addition to the high standards caregivers set for themselves, many endure criticism from family members and their care recipients. This is especially true for those who have made promises in the past regarding long-term care. The popular vow of, “I’ll never put you in a nursing home!” comes back to haunt countless adult children and spouses who have taken it. We should never make such assurances to our loved ones, since we have no idea what the future will bring. If you already have, it’s important to understand that this is a promise you will likely need to break—especially as a loved one’s physical and mental abilities decline.

Remember that the time you have spent caring for your loved one has honored the spirit of your original promise. You have done all you can to keep them safe and healthy—often at the expense of your own physical and mental health. At some point, trying to continue providing care on your own or with limited support becomes downright dangerous for you and your care recipient. The decision to seek outside help is tough for many families, but taking this step is often beneficial for everyone involved. The guilt that accompanies this decision is unjustified and only adds to stress levels.

If you have not yet made this fateful promise, make a more realistic and genuine declaration instead. Say something like, “I love you very much and will do everything I can to take care of you. We don’t know what the future holds, but I promise I’ll always do my best to provide you with the quality care you deserve.”


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Research Dementia Care Options

Family caregivers are not the be-all and end-all of quality care—especially when they are burned out. Sometimes families must look elsewhere to get their loved ones the best care possible. There are many different types of respite care and long-term care, and the right fit depends on the unique needs of a dementia patient and their caregiver.

If a senior is still in the relatively early stages of dementia and you’d like to build regular breaks into your weekly routine (and you should!), then respite care is an excellent fit. However, if your loved one needs increasing assistance with activities of daily living (ADLs), around-the-clock supervision and/or skilled nursing care, then intensive in-home care services or senior living is probably the best option.

Even if you are just at the beginning of your caregiving journey, the need for long-term care will likely arise at some point. It’s important to research all alternate care options that are available, even if some of them aren’t a good fit at the moment.

Respite Options for Dementia Caregivers

Long-Term Care Options for Alzheimer’s and Dementia Patients

Find Resources for Alzheimer’s Caregivers

Elder care providers aren’t the only sources of Alzheimer’s caregiver support. Even if you place your loved one in a memory care unit, it doesn’t mean you’ve abandoned them. You’ll still visit, advocate for them, coordinate their care, manage their finances and run errands. Caregiving doesn’t just stop once you accept outside help, but it does give you more opportunities to destress and allow you to interact with your loved one on a social level instead of as their care provider.

What I mean to say is that you will still need support, guidance and resources throughout the remainder of your tenure as a caregiver. The first place I recommend people check for help is their local Area Agency on Aging (AAA). AAAs know what federal, state and community resources are available and can help family caregivers learn about and apply for them.

In-person and online caregiver support groups are an excellent source of moral support, advice and caregiving tips. The camaraderie and validation that support group members experience when interacting with one another is invaluable. Social interaction is crucial for warding off feelings of isolation that can be so insidious—especially for Alzheimer’s caregivers. Studies have shown that loneliness can exacerbate caregiver burnout and increase the risks of poor physical and mental health outcomes.

Update Your Care Plan

Researching Alzheimer’s caregiver burnout, alternative options for dementia care and supportive resources is only the beginning. In order to prevent or cure burnout and safeguard your health, you’ll need to act on this information and incorporate new measures for respite and self-care into your care plan. Remember, regularly evaluating and updating your care plan is key to ensuring both your care recipient’s needs and your own needs are met. Creating an effective dementia care plan can take some trial and error, so be patient and gentle with yourself.

Do Your Best

Most of us want to take care of our vulnerable loved ones. We aren’t excited about having strangers step into this role, and our loved ones normally aren’t too thrilled about that idea, either. But, when you have had enough, you have had enough. No one who is burned out is able to do their best to care for another person. Do not let this happen to you. Get help before you are at the stage where your loved one needs more attention and help than you can give.

There should not be any shame or guilt in asking for help. Seeking and providing the best care for your aging loved one takes an entire care team. You do not have to be the sole person responsible for meeting their every need.

Sources: Alzheimer’s Disease Caregivers Fact Sheet (https://act.alz.org/site/DocServer/caregivers_fact_sheet.pdf?docID=3022); Caregiving in the U.S. 2015 (https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf); Prevalence of Mental Health Disorders Among Caregivers of Patients With Alzheimer Disease (https://www.jamda.com/article/S1525-8610(15)00607-6/fulltext); Caregiving in the U.S. 2020 (https://www.caregiving.org/wp-content/uploads/2020/05/Full-Report-Caregiving-in-the-United-States-2020.pdf); Stages of Alzheimer’s (https://www.alz.org/alzheimers-dementia/stages); Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5395647/)

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