Caregivers: What You Need to Know About Dementia

Caring for someone with dementia can be both meaningful and challenging. Understanding what dementia is and how it affects memory, behavior, and daily life can help caregivers provide better support while protecting their own well-being. This guide offers caregivers practical information, compassionate insights, and strategies to navigate the journey with confidence and care.

 

According to our survey, nearly three-quarters of seniors with dementia receive care at home, often with the help of a caregiver. Being a caregiver for a loved one with dementia can be  rewarding, but it also comes with physical and mental challenges. More than one in five (22%) respondents to our Caregiver Burnout Report say they find it difficult to engage in physical activity, and 38% live with obesity. Nearly 39% have both anxiety and depression. 

Some dementia-friendly states have strong programs to support people with dementia and their families, but others don't, leaving many families to navigate dementia care largely on their own. Knowing practical strategies for addressing your loved one's behavioral changes and preventing your own burnout can make caregiving more manageable.

Learning that a loved one has been diagnosed with dementia can feel overwhelming for both individuals and families. While there’s no way to reverse the diagnosis, creating a personalized care plan can be an empowering step. It helps you and your family regain a sense of control, anticipate changes, and prepare for what’s ahead with greater confidence.

As you begin developing your loved one’s care plan with their doctor and care team, consider it a roadmap, one that can evolve as needs change. A thoughtful plan can guide daily routines, safety measures, communication strategies, and long-term care decisions, helping everyone involved feel more supported and prepared.

As dementia progresses, you may notice behavioral changes.  Because dementia affects the brain, a person living with dementia may not be able to process information or regulate their emotions well. These issues can translate into anger, confusion, frustration, or apathy, any of which can worsen as dementia progresses. 

Behavioral changes can be equally distressing for caregivers and people with dementia. However, recognizing the underlying cause of these changes may help you respond with empathy rather than frustration. 

For example, someone with dementia may feel completely overwhelmed when their routine changes for an appointment, causing them to lash out in anger. If you understand the cause of the reaction, you might try scheduling appointments at a time that fits their routine better to reduce stress. 

Below, we explore some of the most common dementia-related behavioral changes and what you can do to manage them.

• Sundowning Syndrome: Sundowning refers to confusion that people with dementia may experience in late afternoon or early evening, often causing anxiety, disorientation, and agitation. Encouraging a daily routine with plenty of sleep and scheduling appointments earlier in the day can sometimes help people manage sundowning. 
• Hygiene Changes: It's common for people with dementia to have difficulty managing hygiene, as many personal hygiene tasks, like showering and brushing teeth, involve several steps. You can help by allowing the person plenty of time to complete their hygiene tasks and getting everything they'll need ready before they begin. 
• Lashing Out Physically: Physical aggression — hitting, biting, scratching, spitting, and otherwise lashing out — can happen when someone with dementia experiences discomfort, can't communicate well, or is overwhelmed by their surroundings. It's important to stay calm and rule out pain first; then, try a relaxing activity, like music or a massage.
• Hallucinations and Delusions: People with dementia sometimes experience delusions and/or hallucinations, some of which can feel real enough to cause fear or frustration. Offer comfort, ensure the person you're trying to help, and try to move them into another room or bring them outside to distract them from the trigger.

As dementia progresses, communication with your loved one can become more difficult. Memory loss can affect their ability to find the right words during a conversation, and they may respond with frustration or confusion.

Validation and redirection can make these exchanges easier. Validation acknowledges and accepts a person's feelings instead of correcting their words or thoughts. Redirection can help seniors with dementia who fixate on a thought or activity, moving their attention to something else. Both techniques can help a loved one feel more comfortable and calm when communicating. 

It can also be helpful to empathize with the person by putting yourself in their shoes. Think about how you'd feel if you couldn't communicate your feelings freely. How would you want someone to treat you? Remember that a person with dementia still has a mind, an ego, and feelings that deserve respect.

Offering dementia-friendly activities should be part of a dementia care plan, as participating in appropriate experiences can help people with dementia feel a sense of purpose and fulfillment. In doing so, these experiences can positively impact behavior. 

 

For example, someone who loves being outdoors might enjoy taking a walk around the neighborhood, helping with a garden, or having an outdoor picnic. Some seniors may prefer spending time with family or friends by playing a board game or looking through photo albums. You can also put together puzzles, bake desserts, or read a book with them if they're seeking companionship.

It’s important to take your loved one’s abilities, preferences, and mood into account before starting an activity. What works one day may not suit them the next, and that's okay. Also, always ensure that they're in safe surroundings for the activity. For instance, if your loved one enjoys walking, take them on a familiar route without hills, uneven terrain, or traffic to prevent falls, confusion, or stress.

 

If you’re working on getting your loved one more engaged with recreational activities, we have some tips to help.

• Give Simple Instructions: Choose activities with only a few, simple steps that you can easily explain. Pause between each step to gauge the person's understanding before moving on to the next step. If possible, demonstrate each step as you explain it.
• Build on Activities the Person with Dementia Has Always Enjoyed: A bridge player may no longer be able to keep up, but she may enjoy holding cards and playing a simpler game, such as Old Maid or Solitaire.
• Aim for the “Sweet Spot” of Difficulty (Not Too Easy, Not Too Hard): If an activity is too simplistic or childish (like coloring books for kids), the person might feel insulted or bored. On the other hand, it could frustrate them if it requires remembering sequences or is otherwise above the person’s cognitive level.
• Be Flexible With the Outcome of the Activity: Try not to be a stickler for things being done the “right” way or according to rules. The priority should be how the activity makes the person feel: involved, purposeful, and successful.
• Don’t Challenge or Argue: Avoid asking “Why” when something goes awry. People with dementia likely don’t know why they did something peculiar, like place a paint set in the refrigerator. Gently suggest an alternative: “I don’t think the paint should get cold, so let’s store it here on the desk.”
• Make Activities Routine: If an activity is a hit, do it every day or two. Or do the same thing, slightly modified, like folding towels one day, sheets the next. Pursue categories of activities at about the same time every day (physical or outdoor in the morning, quiet handiwork after lunch) to add comforting structure to the day.
• Take Common Cognitive Changes of Dementia Into Account: The attention span shortens, and changes in recent memory make it hard to follow activities with multiple steps or instructions, such as cooking. But, less self-critical people with dementia may be more open to art and music activities.
• Have a Backup Plan: Prepare a backup recreational activity in case the one you’re trying goes faster than you anticipated or your loved one doesn’t enjoy it.

Caring for someone with dementia can take a toll on caregivers. According to Caring's Caregiver Burnout Report, almost half of caregiver respondents report experiencing anxiety. The time commitment caregiving requires, financial stressors, and a lack of support are among the top challenges caregivers cite. 

Caregiver burnout can manifest in many ways. You might feel exhausted, experience changes in sleep, or get sick more often. Some caregivers also lose interest in things they once enjoyed or feel helpless. If you're dealing with caregiver burnout, ask for help. Consider turning to therapy or finding a caregiver support group or online community to learn coping strategies and feel less alone.

At-home care for someone with dementia is possible in the earlier stages of the disease. Still, there are options to assist you as a caregiver, such as adult day care or an in-home care aide. In some cases, moving a loved one into memory care may be the best option for both parties. Explore our memory care resources for more information or contact a Caring Family Advisor at (800) 558-0653 for free advice and memory care facility recommendations.

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