Mental Health Considerations For Dementia Caregivers
If you’re caring for someone with Alzheimer’s disease or another condition that causes dementia, your own health might not always be at the top of your mind. However, managing medications, doctors’ appointments, and daily routines and coping with symptoms like mood swings, wandering, and even delusions in the individual you’re caring for can take a toll on your own mental and physical health. Below, we’ll explore current research on caregiver well-being as well as practical tips for looking after yourself emotionally as you care for someone with dementia.
What is dementia? A brief overview
Dementia is a set of progressive symptoms that can affect an individual’s memory, communication skills, and ability to function in daily life. It can be caused by several different types of diseases, the most common of which is Alzheimer’s. According to the National Institute on Aging, more than six million Americans currently live with Alzheimer’s disease. Examples of some other causes of dementia include Lewy body dementia, frontotemporal dementia, and vascular dementia.
Symptoms of Alzheimer’s disease and other types of dementia
The exact symptoms involved with dementia can vary somewhat depending on a variety of factors, such as the underlying cause and the stage of the illness, but they typically include things like:
- Confusion
- Memory loss
- Mood changes, potentially including symptoms of depression and anxiety
- Personality changes
- Inappropriate behavior
- Wandering away
- Trouble sleeping
- Trouble communicating
- Challenges with balance and movement
- Poor judgment and decision-making
When it may be time to consult a dementia caregiver
As a result, people with dementia may struggle to express themselves, control their emotions, move around, and complete daily tasks. With time, they will usually need full-time help getting dressed, eating, and going to the bathroom, so a caregiver will typically need to step in.
Mental and physical illness among dementia caregivers
According to the Centers for Disease Control and Prevention (CDC), around 80% of people with Alzheimer’s and other types of dementia are receiving at-home care—usually from friends or family members. Of these informal caregivers, around 25% are caring for both a parent or relative with dementia and a child or children under the age of 18. Informal dementia caregiving can be stressful, especially for those who are juggling multiple responsibilities.
Daily, weekly, and long-term care tasks
While someone with early-stage dementia might not need 24-hour care, they are likely to eventually as the disease progresses. Some examples of everyday care for dementia patients can include:
Examples of everyday care for dementia and Alzheimer’s disease patients
- Planning and preparing meals
- Assisting with bathing and hygiene
- Managing medical appointments
- Arranging transportation
- Assisting with dressing and eating
- Managing medications
- Monitoring blood pressure and weight
- Planning and participating in activities
- Assisting with exercise and physical activity
- Managing behavioral challenges
What happens to a dementia caregiver without respite care and sufficient support?
Handling all of these responsibilities daily can be time-consuming and challenging. They may also affect a caregiver’s other relationships, work-life balance, and ability to practice self-care. This—in addition to higher levels of stress, which can have negative effects on mental and physical health too—can put a person at higher risk of chronic illness and mental health challenges.
What research says about dementia caregivers who offer long-term care
- 36.7% of caregivers reported getting insufficient sleep
- 40.7% of caregivers reported having two or more chronic health conditions (such as heart disease, cancer, kidney disease, and diabetes)
- 17.6% of caregivers reported experiencing mostly physically unhealthy days in the previous month
The CDC also reports that over half of dementia caregivers experience high levels of emotional stress, while almost half experience symptoms of depression.
Tips for taking care of yourself while providing dementia or Alzheimer’s care
Whether you’ve been a dementia caregiver for a while or you’re considering becoming one, maintaining your well-being may help make caregiving healthier and more sustainable—for both you and the person you’re taking care of. If you’re not sure where to start, you might consider the following strategies.
Build healthy habits
Building healthy habits may help increase your stress resilience, boost your mood, and improve your overall health and well-being. Eating nutritious foods as much as possible, limiting alcohol and processed foods, getting enough sleep, and practicing relaxation exercises can help as well.
It can seem difficult to build healthy habits when you’re a busy full-time caregiver, so starting small with habits like these may help you get started:
- Going for a ten-minute walk each day
- Building short bursts of movement into your day (such as five minutes of push-ups or jumping jacks)
- Drinking one more glass of water each day than you normally would
- Following along with a brief meditation track or video before bed
- Reducing your intake of soft drinks and alcohol
- Increasing your intake of foods rich in omega-3s
- Reducing your intake of fried foods and refined sugars
Note that healthy eating patterns can look different from one person to the next depending on individual needs. Consult your doctor or nutritionist before making significant changes to your eating habits.
Seek social support and respite care
In 2015, researchers reviewed data from five studies on peer support groups for dementia caregivers. Their findings suggest that having social support can provide a helpful outlet for managing the emotions and daily challenges of caregiving. Meetups and caregiver groups can also be a place to share dementia tips and coping skills. Some other resources for support to consider exploring include:
- Online communities and forums for dementia caregivers
- Respite services and other local resources that can give you a break from caregiving
- Mental health education programs
- Friends or family who can bring you meals or assist with caregiving from time to time
- Caregiver helplines
- Home help services to assist with daily caregiving tasks
- Geriatric care managers to provide guidance and support
Find healthy coping strategies that work for you
Choosing unhealthy coping strategies—such as substance use, stress-eating, self-isolation, or overworking—may feel helpful in the moment but are likely to cause additional problems down the line. Finding healthier and more constructive outlets for stress may help you preserve or improve your overall health and your caregiving abilities. Some ideas include:
If you are struggling with substance use, contact the SAMHSA National Helpline at (800) 662-4357 to receive support and resources. Support is available 24/7.
- Taking a warm bath
- Going for a jog or a walk
- Practicing box breathing or other deep breathing exercises
- Practicing mindfulness techniques or meditation
- Talking to a friend or loved one
- Spending some time outdoors
- Spending even a few minutes working on a project or hobby you enjoy
Get professional support and mental health care
The strategies listed here may be a good starting point for supporting your well-being as a caregiver. However, if you’re caring for someone with dementia, you might also benefit from professional support. Working with a therapist may help you manage stress and difficult emotions and develop positive coping strategies.
Mental health care for dementia caregivers
Attending in-person therapy consistently can be challenging though, especially for those who are balancing caregiving with a formal job and/or other responsibilities. That’s why many caregivers find it more convenient to attend online therapy sessions instead of regularly commuting to and from a therapist’s office. With a platform like BetterHelp, you can get matched with a licensed provider and meet with them from anywhere you have an internet connection.
Effectiveness of online therapy for individuals providing dementia and Alzheimer’s care
Research suggests that online therapy may benefit caregivers of people with dementia. In a 2023 study, 81 family caregivers were assigned to a control group or a guided online psychoeducational program. Those in the online treatment group saw significant decreases in anxiety and depression.
Takeaway
Frequently asked questions
What does a dementia caregiver do?
In simple terms, a dementia caregiver is one who assists a person with their daily tasks and routines. A dementia caregiver can be the child of the patient or other family members who help, or it can be a paid care provider from community services, a personal company, or other support services who provide in-home care for individuals with dementia. This allows older adults to “age in place” in a familiar environment, which can lead to better mental health outcomes.
Organizations like the Family Caregiver Alliance and Alzheimer’s Association offer helpful resources like eldercare locators for finding dementia care for individuals with Alzheimer's and related dementias.
What are the feelings of a caregiver with dementia patients?
A person who offers caregiver support to individuals with dementia tends to be patient, compassionate, and a good communicator. However, caregivers may also be susceptible to burnout and fatigue.
How does dementia affect caregivers?
It can be emotionally difficult for children or other relatives who provide care for a family member with dementia. Not only can the work itself be taxing, but in many patients, as dementia progresses and memory loss becomes worse, behavior problems become an issue. These behavioral problems may manifest in emotional and physical violence toward their caregiver.
How can carers help someone with dementia?
There are numerous ways that family members and other caregivers can support a person even in the beginning and middle stages of dementia. As short term memory problems become the norm, you can help by figuring out safety features in the home, and ways to promote safety in the community. You can also help with planning activities, and ensuring that the patient is participating in personal activities that are meaningful to them. It is important for a person with dementia to stay active to slow the progress of dementia and maintain good mental health. As a caregiver you can also make communication easier by acting as a go-between for people and professionals who may not understand the level of deterioration, while still allowing them to be a part of the decision-making process. Medication management can also be an important role, as some will take a variety of medicines for chronic illness, as well as for dementia symptoms, including some still in clinical trials for certain patients. As the dementia progresses to a new stage, assistance may require taking a more active role in helping perform activities of daily living (ADLs), and offering mobility assistance.
Do dementia patients recognize caregivers?
In some cases, yes, in others no. It depends on the stage of dementia, and how long they’ve known the caregiver.
What is the role of a dementia care worker?
A dementia care worker is one who ensures that a person with dementia is safe, engaged, and healthy when they are unable to fully care for their own needs.
Why do dementia patients turn on their caregivers?
Behavior changes are common in individuals with dementia, as different parts of the brain are affected. As dementia progresses, some people become more agitated, irritable, or confused, especially in the evening hours. Many do not realize that they have dementia, so when someone tells them to do something, or helps them with personal care, they may take it as a threat.
What is important when caring for someone with dementia?
Some practical advice for building caregiving skills is to learn how to communicate effectively. Speak slowly, and with a reassuring tone. Keep body language slow and simple, try not to move around nervously, and show attention to the patient when they are speaking. Maintain eye contact with the patient when in conversation, and give them plenty of time to formulate their thoughts and speak.
What to avoid when caring for dementia patients?
Caregiving tips also contain a list of things to avoid when caring for dementia patients. Avoid trying to correct the patient, as this can lead to agitation and further confusion. Try to limit naps during the day to avoid sundowning behaviors and poorer quality sleep at night. Don’t baby the patient. They are adults, and want to feel as if they are still independent so don’t treat them like children.
What are the challenges of dementia caregivers?
Dementia caregivers often offer care that is physically, mentally, and emotionally taxing. Caregiver burnout and compassion fatigue are common if they do not receive assistance from others.
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